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Volume 5 Issue 1 December 2002

From the Editor are going to be fairly limited. As a does make me feel really horrible.
Sandy Siegel purely anthropological observation, So, what are you supposed to do
I believe the medical community about this? Well, hopefully, I am
has a concern that the TM patient is totally wrong and the bowel
There are many challenging issues a evacuating; and I think a bowel maintenance program article that I
person with TM has to face on a maintenance program may be get published in the near future is
regular basis; none is more difficult considered successful if the bowel going to be jam packed full of great
and demoralizing than bowel issues. movement is accomplished with ideas for you. I would imagine that
I know, you would probably rather anything less intense than a couple routine and a regiment is very
that I was writing about money. of sticks of dynamite. I’m not sure important for you. Making sure that
that a person who is pooping all you eat a balanced diet that is high
I know that the dysfunctional bowel over the neighborhood is considered in fiber is probably a good idea; and
symptoms that accompany TM can to be having a bowel problem. making sure that you consume lots
create the most devastating impact Why? Because they are getting it of water. If you have little control
on a person’s quality of life. I know out. I could be wrong; it is merely of your bowel movements,
this, because I have observed these an observation. I will be looking controlling the consistency of your
impacts and I have listened to forward to reading about this bowel stools is probably really important.
people talk about these issues on maintenance program.
numerous occasions. Keeping in Okay, regiment makes a great deal
mind that I am not a medical My greatest concerns and of sense, but, for most people,
professional, I would like to make a compassion go to those of you who anything requiring discipline about
distinction between persons who are unable to control your bowels, food is not going to be easy. During
have a difficult time having a bowel because you have no or little control a doctor appointment not too long
movement and those persons who of your sphincter muscles. Some of ago, my doctor suggested that I take
have a difficult time controlling you are unable to feel when you are off some weight. Actually, what the
their bowels. My comments are about to have a bowel movement; doctor told me was that my weight
going to focus more on those of you some of you can’t feel it until it is was perfect, if I thought I was going
who have difficulty in controlling too late. Some of you can feel it, to grow to about 6’ 5”. I’m certain
your bowels, because of the loss of but have no way to control it. So, my doctor learned this approach to
sphincter function. you have accidents in public and weight loss during medical school in
you pass gas in public. I’m sorry. his Bedside Manner 201 class. “If
I think that the medical profession I’m sorry, because I know how this you want your patients to follow a
has many more tools in the issue has changed your lives. I see weight loss prescription, the highest
treatment kit for those who suffer how it constrains your lives. I see rates of success are experienced by
from the former as compared to the how it has impacted the way you see those with whom you are the most
latter malady. It is high on my yourself. And this all just makes me obnoxious and sarcastic.”
priority list to have an article very sad.
published on bowel maintenance A medical doctor is not going to
programs; those for children and There is not a single brilliant thing I help me lose weight. If eating was
those for adults. It is my suspicion have to say to any of you to improve about ingesting nourishment, my
that the programs are going to be upon this situation. I’m not a weight would not be a problem. My
pretty well defined with a variety of doctor, so there isn’t much I can tell weight loss issues might be better
options for a person who you beyond my common sense handled by a team of highly trained
experiences difficulty having a application to all of life’s problems. and experienced psychologists.
bowel movement. For those who But I do have lots of compassion
have no control of their sphincter and empathy, and your predicament I’m not sure what the rest of you are
muscles, I suspect that the options doing around the world; in America,
Page 2 The Transverse Myelitis Association
we are doing really interesting things I also have a nervous stomach. I used We talk about everything. And we
with food. Being regimented about to go on kaopectate intravenous talk about her symptoms. Pauline
food in America? We are super sizing during final exams week. I did this complains to me. I listen. I tell her
it. We are camped out at all you can through fourteen years of college. I that I am sorry. We talk about pain
eat buffets. We are managing to put can’t even imagine how it would feel and fatigue and we discuss strategies
5000 calories on a plate from a salad to have a nervous stomach and no for managing these symptoms. We
bar and feeling good about our healthy sphincter control. You have a very talk about all of her symptoms – and
selections, because we are also using a difficult problem. we talk about them a lot. We never
low fat dressing. We are starving ever talk about bowel problems and
ourselves. We are binging and When you have a significant cause of passing gas. Why? Cause there is
purging. We are living on diet pills stress in your life, you have some just nothing to talk about. There is
and nutrition bars. We are wiring our choices to make about the cause. You nothing she can do to change any of
mouths shut and having our stomachs can start by looking at the this. There is nothing I can do to
stapled. We hold ourselves up to the circumstances that cause you stress change any of it. We just get on with
most unrealistic models for and make some decisions about how life. My job in these situations is to
appearance, become totally you are going to change those in keep life normal and moving
discouraged with the entire concept, order to diminish or eliminate the forward. We make life normal as
and find solace in devouring the entire stress. For those of you who have no quickly as possible.
party-sized bag of peanut M&Ms sphincter control, there is only so
while watching Richard Simmons much you are going to be able to do Making all of this normal is a big
sweat to bad disco music. So, just to change the circumstances. You step in making this all less stressful
what consistency do you need for can devote your life to forming the for yourself. What else are you going
these stools to be? Hopefully, you’re perfect stool; to developing a to do? Allow me to suggest two
having a better time of stool regimented diet and schedule that things that you shouldn’t do. Don’t
consistency in France. I’ve heard increases the probability that you are starve yourself. I know people who
cheese is very binding. going to have a bowel movement at attempt control of uncontrolled bowel
approximately the same time every movements by starving themselves
It takes every ounce of discipline in day or every other day. But you are before a particular occasion. This is
my being to make it through Yom still going to have an occasional not a healthy approach. It is a
Kippur. Most of us are just not very accident. The operative concept here dysfunctional method for many
disciplined about food. So, all of this is accident. You just don’t have reasons, not the least of which is that
routine and regimentation is going to control over all of the circumstances. it destroys any diet routine which is
be extremely difficult. But that is one of your better techniques for
where some of the answers lie for If you don’t control the bowel maintenance. Some people
people with TM and bowel problems. circumstances, your other choice to stop going out in public where they
reduce or eliminate stress concerns might risk an accident. This is also
If you have a nervous stomach, you how you feel and think about the not a healthy approach. In the end,
may be in trouble, even with a circumstances that cause you stress. this approach is only going to make
regimented diet, and fiber and water It is this simple – really. If you want you feel worse. You need to live
and routine. And the water thing, by the stress and emotional discomfort to your life, you need to continue to do
the way, is really important. I am on a diminish, and you cannot control your the things that make you happy and
medication that is constipating. I try sphincter muscle, you are left with bring meaning to your life. Isolating
to include plenty of fiber in my diet having to change how you feel and yourself from these things is not
and I take a fiber supplement. On one think about having accidents and going to be satisfying over the long
occasion I did not drink enough water passing gas among spectators. I haul. Isolating yourself from people
with my fiber supplement. Later that know, easy for me to say. But is not a good thing. Neither of these
day, I spent an hour giving birth to whether easy or difficult to accept, approaches is a satisfying or healthy
three small stones. Not a pleasant those are the choices. resolution of the problem.
experience. You need to drink lots of
water; if you are taking fiber I perceive all of life about TM as a You should do what you can to help
supplements, you need to drink even caregiver. I don’t have TM. I started keep things normal. Bring a change
more than lots of water. to learn about these issues very early of clothes, a few plastic baggies and a
on in Pauline’s experience with TM. package of wipes when you go out.
The Transverse Myelitis Association Page 3
If you have an accident, try to around the room, including from me. probably help them understand that
expend your energy moving on as And to know Gunny is to only make there is likely a relationship between a
opposed to feeling bad about it. I his response funnier. But it was the healthy diet, some schedule and
can tell you that none of your best advice anyone provided on any regiment about eating and the
friends or family are ever going to subject during that discussion. In avoidance of unhealthy dieting and the
decide that they don’t want to fact, it is the sanest and most increased probability that they will
spend time with you, because you reasonable advice I have heard on have fewer accidents. That might be
have had or could have an accident. this subject – ever. compelling motivation for them to
They are going to feel badly about make healthy decisions about food and
it, but then they are going to take The more you care, the worse you are eating behavior. An exercise program
their cues from you. If you try to going to feel. The more significance would probably also be a very good
commit hari kari with the butter you place on this issue, the worse you idea; for children and for adults with
knife, they will likely attempt an are going to feel when it happens. TM.
intervention that will only elevate And you have no control over when it
your discomfort. If you try a is going to happen. The only aspect On the thinking and feeling side of the
matter of fact let’s deal with it and of this you have control over is how bowel issues, you could help your
move on approach, that is what much significance you are going to children with strategies for when they
they are going to do also. They are ascribe to it and how you feel about do have an accident. A change of
going to admire you. Believe me, it. Hey, let’s try to get some clothes is a good idea for them, as
they will. I would. perspective on this. You aren’t well. I think children will often take
stealing from the poor; you’re farting cues from their parents in situations
I’m not suggesting to you that this in public. If you pass gas in the that could cause stress. If you react to
is a small thing. I would have a middle of the grocery check out line, an accident as though it is a major
really hard time with this. But I your family should say “excuse me” production and loaded with angst, you
hope and I pray that I would be in unison as a demonstration of might be influencing your child to
able to get to a place where my solidarity. think of it in this manner, as well. If
bowels did not control my life. It you deal with it in a more matter-of-
might gain control over my body, As difficult as these issues are for fact manner and help them just move
but I would hope that I would adults with TM, these issues are back to the flow of life, they might be
maintain control over my mind. much more difficult for children and helped to experience these accidents in
young adults. Being different among a less stressful way.
During the first TMA Symposium one’s peers is just really hard. Even
in Seattle, I led a discussion among being rebellious is defined by specific It won’t be easy for you. It sure would
people with TM and caregivers rules, including a uniform. You can’t be difficult for me. But this is the
about symptom management just do your hair in any pastel that situation, and you are all faced with
issues. During the course of the strikes your fancy or deform just any limited options. Please work to find
discussion, a woman raised the body part. My heart aches for the the healthy ones, the ones that will
issue of passing gas without control children and young adults who have make these experiences as normal as
and in public. She talked about her to deal with the bowel issues. But possible. And that is also likely going
embarrassment and she asked what their decisions are the same as those to entail parents being good models
other people were doing about it. of adults. for their children in the areas of
There were various suggestions nutrition and eating behavior.
made; most of the advice concerned Children need to make the same
foods that cause gas and avoiding decisions about changing the Not having control of your bowels is a
them. A hand went up in the back circumstances to the extent they have difficult challenge for many of you
of the room – a sage philosopher control over those circumstances, and who have TM. I am asking you to
from the TM community wanted to they need to also find ways to deal please not make it any worse for
speak on the subject. I moved to with how they think and feel about yourself. You can’t control what your
the back of the room and handed the bowel issues. On the sphincter muscles are up to, but you
the microphone to Mr. Boyle. His circumstances side, they need to do have some control over what your
advice on the subject of passing gas understand what aspect of these brain is up to. You are such a
in public, “I don’t care.” There was issues they control and how much of wonderful person and we love being
an immediate burst of laughter it they do not control. You should with you. We don’t want you to
Page 4 The Transverse Myelitis Association
isolate yourself from us. We can Fatigue in Transverse Myelitis occur simultaneously in the same
handle this situation – please don’t Joanne Lynn, MD person.
stay away from us, because you are
embarrassed. We will help you move Weakness
on. We won’t tell you not to feel Medical Advisory Board of The
badly – you’re allowed to feel badly. Transverse Myelitis Association. Many people with TM have weakness
We’re just not going to encourage you of both legs ranging from complete
to dwell on it. And my team of The following article is offered as paralysis to mild weakness with fatiga-
psychologists tells me that food is so general information related to bility. An example of motor fatigue
much more than the basic building Transverse Myelitis and is not to be would be the person who starts out
blocks of life. The emotional, social construed as a specific medical walking with a fairly normal gait.
and recreational aspects of food recommendation for any individual. However, after they go a certain dis-
should be celebrated – every culture The information is provided without tance, fatigue kicks in and they start to
does. Please don’t exclude yourself the benefit of a complete history or have a foot drop or a limp. Those with
from this celebration. an examination. Any decisions cervical cord involvement may also
regarding diagnosis or treatment have arm weakness. Fatigue may re-
Please take good care of yourselves should be made in consultation with sult from the extra energy required to
and each other. your personal physician who is best compensate for this weakness in per-
suited to make appropriate medical formance of daily activities. One ap-
recommendations for you. proach to minimize this fatigue is to
use energy conservation principles and
labor saving devices (e.g., motorized
Fatigue is a common complaint of scooters). Many people with TM can
The TMA does not endorse any of the people with TM, but there have been benefit from a therapy program of ex-
medications, treatments or products very few investigations into this ercise to maximize physical condition-
reported in this newsletter. This phenomenon. It is the most common ing. Physical and occupational thera-
information is intended only to keep and most disabling symptom for pists are the best resources to help an
you informed. We strongly advise many people with Multiple Sclerosis. individual look for ways to conserve
that you check any drugs or treatments Despite many attempts to study energy in daily activities and improve
mentioned with your physician. fatigue in MS, we still do not conditioning.
completely understand its causes or
how best to manage it. However, it Disturbed Sleep
is worth looking at what is
understood about MS fatigue for Many people with or without TM
clues about how to understand and suffer from insomnia and otherwise
© The Transverse Myelitis
Association Newsletter is published handle fatigue in TM. We all use the disrupted sleep that may contribute to
by The Transverse Myelitis term ‘fatigue’ to mean different fatigue. Problems that are more
Association, Seattle, Washington. things; and it is recognized that common in people with spinal cord
Copyright 2002 by The Transverse different types of fatigue exist in MS injury that may contribute to poor
Myelitis Association. All rights and, presumably, in TM. Fatigue in sleep include spasticity, urinary
reserved. We ask that other MS has been defined as “A frequency or incontinence,
publications contact us for permission subjective lack of physical and/or neuropathic pain, restless legs
to reprint any article from The mental energy that is perceived by syndrome, and depression.
Transverse Myelitis Association the individual or caregiver to
Newsletters. interfere with usual and desired Spasticity, or abnormal muscle tone,
activities.” tightness and spasms due to injury of
motor nerve fibers that descend in the
Some of the causes of fatigue in spinal cord, may make it difficult to
Joanne Lynn, MD is an Assistant patients with disease of the central fall asleep or cause multiple
Professor of Neurology at The Ohio nervous system include: 1) weakness, awakenings at night. Symptoms of
State University. She is the Director 2) disturbed sleep, 3) medications, 4) spasticity may be improved with daily
of The Ohio State University Multiple depression, 5) nerve fiber fatigue, stretching exercises and medications
Sclerosis Center and she serves on the and 6) infection. Any of these may to relax muscles such as Lioresal
The Transverse Myelitis Association Page 5
(Baclofen), Tizanidine (Xanaflex), problem they have. Self-report of suspect medications under physician
Dantrolene (Dantrium), Diazepam whether the bladder feels completely guidance.
(Valium) and Clonazepam emptied is notoriously inaccurate in
(Klonopin). The benzodiazepine persons with spinal cord injury. One Stimulants such as amantadine
class of medications that includes simple procedure is to check the (Symmetrel), Pemoline (Cylert) and
Diazepam and Clonazepam may be post-void residual or amount of urine Modafinil (Provigil) have been used to
too sedating for daytime use for some left in the bladder after urination by treat MS fatigue with some benefit.
people, but are great for controlling either catheterization or ultrasound to However, some would argue that
spasms at night and promote sleep. see if the bladder is emptying pharmacologic treatment of fatigue
Chronic benzodiazepine use is not completely during voiding. may be more appropriate in MS
recommended for simple insomnia, because the brain is affected by this
because it may have effects on the Some people with TM have trouble disease contributing to fatigue,
stages of sleep. However, the sleeping because of neuropathic pain whereas the brain is spared in TM.
relatively mild deleterious effects on such as burning, aching, stabbing or There is little research in the area of
sleep are overweighed by benefits in shock-like sensations often in the fatigue and TM to guide us.
many patients with spasticity. legs or trunk. These pains may Amantadine is very cheap, but may
become more distressing as the cause confusion or nausea in some
Some people with TM have a person lies down to attempt sleep and people. There is a risk of liver injury
neurogenic bladder or abnormal is no longer distracted by the with pemoline. Modafinil is very
bladder function from spinal cord activities of the day. There are effective in MS fatigue, but is still on
injury that results in frequent need to medications that can be tried for patent and is very expensive.
get up and urinate during the night various types of neuropathic pain and
(nocturia) with disturbance of sleep. these have been discussed in a Depression
This problem requires evaluation by a previous edition of this newsletter.
physician and may require referral to Restless legs syndrome is a form of Depression can also contribute to
a urologist. Several different bladder abnormal periodic limb movements disturbed sleep by causing difficulties
problems can occur with spinal cord that can disturb sleep. In this falling asleep – often due to a
injury. One is a “spastic bladder” or disorder, the person has an tendency to ruminate over worries –
an irritable bladder that contracts with uncomfortable sensation in the legs and by causing difficulty with staying
even small amounts of urine, giving which is transiently relieved by asleep during the night, including a
an inappropriate message that voiding moving the legs. This disorder is tendency to wake up earlier in the
is needed. This increased urge to void common enough in the general morning than desired. Depression is
can often be helped by medications population and appears to be associated with the following
such as Detrol and Ditropan. Another increased in people with neurologic symptoms: sad mood, tearfulness,
type of voiding problem is the disorders such as MS. It can be sleep disturbance, appetite changes,
“hypotonic bladder.” This bladder is helped with certain medications. lack of motivation and feelings of guilt
“lazy” and does not contract until it is and poor self-worth. Depression
very full. The person may get up and Medications should be treated with antidepressants
void only part of the bladder’s and/or psychotherapy. Some
contents, because of the incomplete Many of the medications used to treat antidepressants are more “alerting” or
contraction of the bladder wall. They various symptoms experienced by stimulating than sedating. This should
then return to bed with a bladder that people with TM may cause sedation be discussed with a physician if
is already half full and have to repeat and aggravate fatigue. These include fatigue is prominent and treatment
the voiding cycle several times during antidepressants, antiepileptic drugs with an antidepressant medication is
the night. People with this type of that may be used to combat considered.
bladder dysfunction often benefit neuropathic pain, anti-spasticity
from learning how to perform self medications, antihistamines, some Nerve Fiber Fatigue
catheterization of the bladder before blood pressure medications, etc. It
bed to empty it completely, which is reasonable to review your This is an area of fatigue that we know
often allows them to sleep through the medication list with your physician about from studies of MS. Some of
night. for advice about medications that these observations may be
It is often difficult for people with TM might contribute to fatigue and then extrapolated to TM. One of the
to know which type of bladder have trials off or on reduced doses of primary types of tissue damage in MS
Page 6 The Transverse Myelitis Association
is demyelination (or removal of hopefully fatigue may be lessened by treatment should be made in
myelin, the insulation of the nerve these approaches. consultation with your personal
fibers). When demyelination is physician who is best suited to make
present, the nerve fibers may conduct References appropriate medical recommendations
nerve impulses, but fatigue rapidly for you.
with heavy use and/or high body Baum HM and Rothschild BB.
temperatures (from heavy activity, Multiple sclerosis and mobility Q. Why should a person with TM
high environmental temperature such restriction. Arch Phys Med Rehabil. consider quitting smoking and what
as a hot day or a hot factory, or fever). 1983; 64(12):591-6. suggestions might you offer to help
Many people with MS cannot tolerate them quit?
heat very well because of this Herndon RM. Fatigue in Multiple
phenomenon of nerve conduction Sclerosis. MS Connection Approximately 23% of US adults
failure. In TM, there may be varying (newsletter of National MS Society), smoke cigarettes; tobacco use is the
degrees of demyelination and/or March 2002, pp. 6-7. leading cause of preventable death in
injury to the underlying nerve fibers the US. More than 2/3 of current
(axons) and it is not well documented Multiple Sclerosis Council for smokers state that they wish to quit.
what percentage of people with past Clinical Practice Guidelines. Fatigue However, less than 10% of smokers
TM have conduction failure typical of and Multiple Sclerosis: Evidence- who try to quit without treatment
MS. People with MS and this type of Based Management Strategies for remain abstinent in the long term.
heat intolerance use simple measures Fatigue in Multiple Sclerosis. Smoking is a problem for many people
such as air conditioning, cool drinks, Monograph published by Paralyzed with Transverse Myelitis. There is
and avoiding overheating and Veterans of America, 1998. little data about the effects of smoking
sometimes use cooling vests to help on TM. In one study on Multiple
improve function in the heat. Svensson BB, et al. Endurance Sclerosis, there were minor deleterious
training in patients with multiple effects reported on motor function;
Infection sclerosis: five case studies. Phys however, this is relatively insignificant
Ther. 1994; 74(11):1017-26. compared to the multiple other health
Common infections such as viral Joanne Lynn, MD serves on the problems caused by smoking. Some
respiratory tract infections (e.g., Medical Advisory Board of The people with TM see their neurologist
common colds and sore throats) and Transverse Myelitis Association. If more frequently than they see their
urinary tract infections (which are you have questions for Dr. Lynn primary care provider, making it
more frequent in people with spinal regarding the Transverse Myelitis incumbent upon the neurologist to
cord injury) may cause an increase in attempt to motivate patients to quit
Member Questions and
fatigue. and to be familiar with potential
Answers from Joanne Lynn,
treatments.
MD
The causes of fatigue in TM are Barriers to quitting include tolerance
complex and multifactorial. In and physical dependence on nicotine
addition, fatigue is a very common condition, please send those to Sandy and psychological factors related to
complaint in the general population Siegel; we will attempt to have your tobacco use. Two treatments have
without TM or MS. Consideration questions addressed in a future been shown to be helpful in smoking
should be made of whether there newsletter. cessation: drug therapy and
could be other underlying illnesses counseling. An approach that employs
that might contribute to fatigue such The following information is offered both of these treatments is most
as hypothyroidism. The treatment as a general response to questions effective of all.
approach to reduce fatigue in TM related to Transverse Myelitis and is
should be multifactorial with not to be construed as a specific Counseling
emphasis on physical therapy and medical recommendation for any
home exercise programs to increase individual. This response is based on Counseling for smoking cessation
conditioning and stamina, evaluation the information provided in a brief generally involves teaching about
of sleep and medications, and question and is without the benefit of strategies to deal with stress and
treatment of depression if present. a complete history or an examination. symptoms of nicotine withdrawal.
There is no easy solution, but Any decisions regarding diagnosis or Smokers often learn to associate
The Transverse Myelitis Association Page 7
smoking with certain cues and times 506-512. Seattle. Dr. Kerr established the
such as after meals, when relaxing, to The Transverse Myelitis Association Johns Hopkins Transverse Myelitis
unwind after an argument or other Medical Advisory Board was initi- Center and has become the country’s
stressful event, during a work break, ated by Dr. Charles Levy. Dr. Levy and the world’s only specialist in the
or with an alcoholic beverage. is a Physiatrist, a doctor of physical treatment and research on TM.
Cognitive counseling helps to teach and rehabilitative medicine. We met
smokers to break the links between Dr. Levy when Pauline was a patient We have been incredibly blessed with
these cues and smoking. a wonderful group of physicians to
Drs. Barnes, Kaplin, serve on our Medical Advisory Board.
Drug Therapy Morrison and Pidcock Join I am in contact with these doctors on a
the TMA Medical Advisory regular basis. They are contributors to
Nicotine replacement therapy Board the newsletters, they offer me advice
provides nicotine to relieve cravings about treatments and referrals which I
and symptoms of withdrawal. The pass onto people in the TM
use of nicotine replacement therapy is at Dodd Hall, The Ohio State Univer- community, and they are participants
associated with significantly better sity. He was director of the wheel- in our meetings, conferences and
rates of smoking cessation. Nicotine chair clinic at Dodd and he was re- symposia. They are engaged in TM
replacement is available in various sponsible for getting Pauline fitted research. They are intensively
forms: a skin patch, chewing gum, into her purple wheelchair in 1994. involved in disseminating information
nasal spray and a vapor inhaler. When Deanne and I were just getting and educating about TM to both TM
the TMA off the ground, Dr. Levy patients and doctors and they are
Other drugs besides nicotine are used created an opportunity for the offi- publishing articles regarding various
in smoking cessation efforts. cers of the TMA to come together in aspects of TM. As the TMA becomes
Buproprion (Zyban) has been shown Columbus to learn about other rare involved in funding research, it is the
to be helpful in combination with disease organizations, and the great Medical Advisory Board which will
supportive counseling. Other work being done by these groups. As offer guidance in designing and
medications which may be helpful Dr. Levy’s guests at this conference, participating in the review and
include nortriptyline and clonidine. the officers of the TMA became sen- selection process.
sitized to the importance of having
Other Treatments guidance from the medical profession Perhaps most importantly, these
in our planning and our activities. physicians are offering patients with
Hypnosis as a treatment for smoking TM the best possible treatments and
cessation has been inadequately Following this conference, Dr. Levy care. These doctors pretty much
studied thus far. Studies of the use of graciously and generously offered to respond to whatever I ask –
acupuncture have failed to show serve on The Transverse Myelitis graciously, generously and none of
effectiveness. Association Medical Advisory them have any time for any of what I
Board. Dr. Levy has been request. But it always gets done.
Approximately 50% of moderate or instrumental in guiding the TMA
heavy smokers die prematurely due to almost since our inception. Shortly They are competent, exceptional,
illnesses related to tobacco abuse. after initiating the Medical Advisory brilliant doctors and researchers, and
Even if initial attempts to stop Board, Dr. Levy recruited Dr. Joanne they are quality human beings. I
smoking result in relapse, many Lynn to serve on the TMA Medical wonder often how it was that these
smokers eventually achieve long term Advisory Board. As a Neurologist four incredible people found their way
abstinence after multiple attempts to and the Director of the MS Center at into an association with our fledgling
quit. Smoking cessation increases life The Ohio State University, Dr. Lynn organization. It has been a blessing.
expectancy and reduces the risk of was a wonderful and significant I met Drs. Barnes, Pidcock, Morrison
tobacco-related illness leading to a addition to the Board. The Gilmurs and Kaplin in Baltimore during the
better quality of life for people trying next recruited Dr. James Bowen from Second International TM Symposium.
to live well with their TM. the MS Center at the University of Drs. Morrison and Barnes are
Washington to serve on the Board. pediatric neurologists, Dr. Pidcock is a
Reference: Rigotti N. Treatment of Dr. Douglas Kerr joined the Medical pediatric physiatist and Dr. Kaplin is a
Tobacco Use and Dependence. Advisory Board during the First psychiatrist. They were all very
NEJM. 346(7), Feb. 14, 2002, pp. International TM Symposium in interested in TM, were becoming very
Page 8 The Transverse Myelitis Association
involved in treating patients with TM, He served as an Epilepsy Research where he was a Medical Science
and were involved in research on TM. Fellow at the Duke Center for the Training Program awardee. Dr.
They were invited presenters in Advanced Post-doctoral Study of Kaplin completed an internship in
Baltimore, and they were all very Epilepsy at the Duke University internal medicine at Johns Hopkins
much engaged by the people who Medical School from 1997 to 2000. Bayview Medical Center, followed
came to Baltimore with TM and their by residency training in psychiatry at
caregivers. As pediatric specialists, I Dr. Barnes is currently an Assistant Johns Hopkins Hospital. In his final
invited Drs. Barnes, Morrison and Professor in the Departments of year of residency training, he was
Pidcock to present and to participate Neurology and Pediatrics at the selected to be Chief Resident of
in the TMA Children’s and Family University of Kentucky College of Psychiatry. Dr. Kaplin was invited to
Workshop. All of the doctors who Medicine and in the Department of join the faculty as an Instructor in the
came to Columbus not only donated Molecular and Cellular Biochemistry Department of Psychiatry at Johns
their time and expertise, they paid of the University of Kentucky. He is Hopkins School of Medicine
their own way to the workshop. And the Director of the Developmental immediately following his residency
the doctors were not only in Neurobiology Laboratory in the training, and was awarded one of the
Columbus to present to the parents; Department of Neurology of the two Pfizer Postdoctoral Fellowship
they were in Columbus for the entire University of Kentucky College of Grants in Biological Psychiatry
weekend to offer information and Medicine. He is an Associate offered in this country. In his second
support to the parents throughout the Member of the Spinal Cord and Brain year on the faculty, Dr. Kaplin was
entire workshop. Some of their Injury Research Center of the promoted to Assistant Professor of
family members also attended and University of Kentucky College of Psychiatry. Dr. Kaplin's research
served as companions to the children Medicine. Dr. Barnes is an Attending experience includes having been
who needed assistance on the Physician in the Departments of trained in the labs of two Nobel
fieldtrips. Great doctors and Neurology and Pediatrics, Division of Laureates, and having completed his
awesome human beings! Pediatric Neurology, University of PhD training in the Lab of Solomon
Kentucky Children’s Hospital in Snyder, MD, one of the preeminent
I am thrilled to announce to our TMA Lexington. He also serves as leaders in the field of Neuroscience.
members that Dr. Barnes, Dr. Kaplin, Medical Staff in Child Neurology, Dr. Kaplin has been an author on
Dr. Morrison and Dr. Pidcock are the Kentucky Commission for Children nine papers and four abstracts in
newest members of our Medical with Special Needs in Louisville. scientific or medical journals. His
Advisory Board. These four doctors research has focused on mechanisms
bring new areas of specialization to Dr. Barnes is a member of The of neuronal stimulation and
the TMA that are critical for our Transverse Myelitis Consortium communication. Additional awards
members and for furthering the goals Working Group. He is very widely that Dr. Kaplin has received include
of the Association. I am honored to published and has preformed being selected as the NIH/NIMH
introduce you to the newest members extensive research in the area of Outstanding Resident of the year in
of our medical advisory board. epilepsy. 1998, and a Future Leader in
Psychiatry by Emory University in
Gregory Neal Barnes, MD PhD Gregory Neal Barnes, MD PhD 2002.
Department of Neurology
Dr. Barnes received his PhD in L441, Wind D, KY Clinic Dr. Kaplin's involvement in
Biochemistry from the University of 704 South Limestone Transverse Myelitis (TM) began
Kentucky Graduate School in 1990. Lexington, KY 40536-0284 when he was recruited by Dr.
He received his Medical Degree from Douglas Kerr to serve as the Chief
the University of Kentucky College of Adam I. Kaplin, MD PhD Psychiatric consultant to the Johns
Medicine in 1992. Dr. Barnes served Hopkins Transverse Myelopathy
as a Resident in Pediatrics at St. Louis Dr. Kaplin completed his Center (JHTMC) in 2000. In
Children’s Hospital at Washington undergraduate training at Yale addition to his clinical involvement
University School of Medicine from University in 1988 where he in the Center through his work as a
1992 to 1994. He was a Clinical graduated magna cum laude with a consultant and outpatient psychiatrist
Fellow in Pediatrics and Neurology at BS in Biology. He completed his for patients with TM, Dr. Kaplin has
Children’s Hospital, Harvard Medical MD and PhD training at the Johns initiated a collaborative research
School in Boston from 1994 to 1997. Hopkins School of Medicine in 1996, project with Dr. Kerr to investigate
The Transverse Myelitis Association Page 9
the psychiatric sequela of TM. To first TMA Children’s and Family serves as the Chief of Clinical
date, no other clinician or researcher Workshop in July 2002 in Columbus. Operations for the Department of
has investigated the psychiatric In addition to her two formal Neurology, is an elected member of
effects of TM. This work has already presentations to the parents, she was the Medical Executive Council and is
revealed an astonishingly high rate of available throughout the workshop on an ethics advisory team for the
clinical depression in patients with weekend to answer parent’s Health Sciences Center.
TM, and promises to not only questions and to offer support to the
elucidate optimal ways to treat this families. She is currently engaged in Dr. Morrison enjoys time with her
sequela, but may shed light on the a research project focused on matrix family in music, outdoor sports and
pathophysiologic mechanisms of how metalloproteinases in the travel.
TM involves the central nervous cerebrospinal fluid of Transverse
system. Dr. Kaplin was a presenter Myelitis, expecting completion by Leslie Morrison, M.D.
and one of the members of the July 2003 and funded by the Cody Associate Professor,
planning committee for the Second Unser First Step Foundation. Pediatric Neurology
International Transverse Myelitis University Health Sciences Center
Symposium in Baltimore, MD in Dr. Morrison brings a very unique 2211 Lomas Boulevard NE
2001. He also participated in the perspective and exceptional Albuquerque, NM 87131
Cody Unser, Reeve-Irvine Research qualifications to her care of children
Center/UCI California TM with Transverse Myelitis. She Frank S. Pidcock, MD
Conference in 2002, where he, Dr. received her education from the
Doug Kerr and Ms. Chitra Krishnan University of New Mexico as a Dr. Frank Pidcock is a clinical re-
spoke about their experience in the physical therapist and has five years search scientist at Kennedy Krieger In-
JHTMC working with patients of experience in pediatric PT. She stitute. He is the Associate Director of
affected by TM. then received her education and Pediatric Rehabilitation at Kennedy
training as a Child Neurologist. Krieger Institute. He is an Assistant
Adam I. Kaplin, MD PhD Professor of Physical Medicine and
Johns Hopkins Hospital Dr. Morrison’s other research Rehabilitation and Pediatrics at the
Department of Psychiatry and interests and experience include the Johns Hopkins University School of
Behavioral Sciences study of inherited neurological Medicine.
600 North Wolfe Street/ Meyer 115 disorders that disproportionately
Baltimore, MD 21287-7131 affect New Mexican families. This Dr. Pidcock attended the Johns
work has earned her recognition from Hopkins University before going on to
Leslie Morrison, MD the Dean of the UNM School of medical school at the Hahnemann
Medicine, and has resulted in Medical College in Philadelphia,
Leslie Morrison, MD is an Associate research funding and new clinic Pennsylvania, from which he
Professor and Division Chief of Child development. Dr. Morrison has graduated in 1977. His postdoctoral
Neurology at the University of New particular enthusiasm for mentorship training includes pediatric residency at
Mexico School of Medicine. Dr. of students from middle school Hahnemann University Hospital from
Morrison has been involved in through faculty, to further career 1979 to 1981, developmental
research on Transverse Myelitis and is development in the Clinical pediatrics fellowship at St.
extensively involved in educational Neurosciences. She is nationally Christopher’s Hospital for Children
efforts which support the TM recognized for her service as an from 1979 to 1981, and rehabilitation
community and which disseminate examiner for the American Board of medicine residency at Thomas
information about TM to the medical Psychiatry and Neurology, and has Jefferson University Hospital from
community. Dr. Morrison represents recently been appointed to the 1991 to 1994. Dr. Pidcock was the
her institution as a member of the Neurology Recertification Director of the Pediatrics Program at
Johns Hopkins Transverse Myelitis Committee, the Child Neurology Children’s Rehabilitation Hospital in
Consortium since March 2000. She Society Practice Parameter Philadelphia from 1987 until 1991.
was an invited speaker at the Second Committee, the Board of Directors After completing a residency in
International TM Symposium in for the Child Neurology Foundation, rehabilitation medicine in 1994, Dr.
Baltimore in July 2001 and the First and as a counselor for the Society of Pidcock joined the medical staff at the
California TM Conference held in Clinical Neurologists. At the Kennedy Krieger Institute as the
June 2002. Dr. Morrison attended the University of New Mexico, she Associate Director of the Pediatric
Page 10 The Transverse Myelitis Association
Rehabilitation Program. Dr. Pidcock
is an attending physician at both
The Transverse Myelitis Association to Fund
Johns Hopkins Hospital and Kennedy the Johns Hopkins Transverse Myelopathy
Krieger Children’s Hospital. He is
board certified in pediatrics and Center for 2002-2003
physical medicine and rehabilitation.

Dr. Pidcock’s clinical research fund the Research Program symposia as platforms for both
focuses on developing treatment Coordinator position at the JHTMC. physicians and patients to interact
protocols and quantitative The Johns Hopkins Transverse and share theories and advances in
measurements for the use of Myelopathy Center was established research and management of
therapeutic botulinum toxin injections in October 1999 as a ATM; and
in the treatment of children with multidisciplinary center dedicated to
spasticity from cerebral palsy, the diagnosis and treatment of Acute • To publish and disseminate the
traumatic brain injury, or other Transverse Myelitis (ATM) and to knowledge gained through clinical
processes that affect motor control. better understanding of the practice, research and
Indications for giving therapeutic pathophysiology and natural course international symposia to
botulinum toxin include improving of the disease. The Center of community physicians to target
mobility, preventing deformity, and Excellence has several explicit goals: recognition of the disease in the
improving quality of life. community.
Measurement techniques that Dr. • To provide expert care and
Pidcock is studying include functional treatment for patients in the The JHTMC is the only medical
brain imaging (fMRI) to look at the acute phase of ATM; center in the world focused on the
effects of peripheral botulinum toxin treatment of ATM and research on
injections on cortical activation and a • To extend the spectrum of care ATM. Since its inception, Dr. Kerr,
spasticity measurement system through collaborative the Director of the JHTMC, has cared
designed to quantitatively measure the management of the disease for hundreds of adult and pediatric
effects of spasticity reduction at the condition by health care ATM patients. In addition to his own
wrist. providers from multiple practice at Johns Hopkins, Dr. Kerr
disciplines: neurology, urology, also consults with physicians from all
Other areas of interest for Dr. Pidcock physical medicine and over the world to offer care for ATM
include the rehabilitation of children rehabilitation, rheumatology, patients. The experience and
with pediatric transverse myelitis and physical and occupational expertise he is acquiring about ATM
musculo-skeletal manifestations of therapy, neuroradiology, and is invaluable to our community. As
chronic graft vs. host disease. He is neurosurgery; the goals of the JHTMC identify, Dr.
also involved with the development of Kerr is also committed to
outcome measurement tools for chil- • To develop standard diagnostic disseminating the information he
dren with burns. criteria and work-up for patients develops at the TM Center through
based on clinical research to publications, through symposia with
Frank S. Pidcock, MD understand the natural course of other physicians and in educational
Associate Director Pediatric Rehabili- the disease; meetings with ATM patients and their
tation caregivers.
Kennedy Krieger Institute • To perform clinical and basic
707 North Broadway science research in order to In addition to caring for ATM
Baltimore, MD 21205 comprehend the pathophysiology patients, the JHTMC is committed to
of ATM; basic and clinical research on Acute
Transverse Myelitis. Dr. Kerr is
• To devise novel therapeutic involved in numerous ATM research
The Transverse Myelitis Association interventions for patients in the projects. He is also coordinating a
is pleased to announce the award of a acute and convalescent stages of large number of projects involving
$50,000 grant to the Johns Hopkins ATM; other physicians at Johns Hopkins and
Transverse Myelopathy Center for the employing a multidisciplinary
2002-2003 fiscal year. The grant will • To coordinate international approach. Dr. Kerr is also engaged in
The Transverse Myelitis Association Page 11
a large-scale project to encourage Research at the Johns Hopkins reported to recover with little to no
ATM research in a consortium of Transverse Myelopathy Center sequelae following the initial attack,
physicians and scientists who will Chitra Krishnan one-third are left with a moderate
share data and information about the degree of permanent disability, and
condition. one-third have virtually no recovery
sophisticated treatment and and are left severely functionally
The existence of the JHTMC has understanding of their disease disabled 1;8;9.
changed the future for the TM condition. Patients benefit from an
community. What were hopes for our interdisciplinary approach to The Johns Hopkins Transverse
community just a short time ago are providing state-of-the-art care that is Myelopathy Center was established in
now becoming realities. There is a constantly challenged and enhanced October 1999 as a multidisciplinary
focused and organized effort to by ongoing research. Further, these center dedicated to the diagnosis and
develop the best possible treatments centers aid the advancement of treatment of acute transverse myelitis
for ATM symptoms. There is a research to better understand the (ATM) and to better understanding of
focused effort to perform research to disease condition and to develop the pathophysiology and natural
better understand ATM. There is a novel and effective therapies by course of the disease.
community of physicians and bringing together interested
scientists who are energized to find physicians and patients. Study of During the second International TM
the answers to the many questions rare diseases is very challenging Symposium in July 2001, we formally
that surround ATM. These because of the need for standard established a network of regional
physicians and scientists work for diagnostic criteria and acceptable centers of excellence in transverse
institutions around the country and protocols of care that need to be myelitis. Institutions affiliated with
around the world. The TM Center at developed based on research and the the Consortium include Johns
Johns Hopkins provides the initiative experience of physicians and Hopkins University (Baltimore, MD),
and the coordination for much of this scientists and their understanding of Mayo Clinic (Rochester, MN), Mayo
activity. the natural course of the disease. Clinic (Scottsdale, AZ), Yale
University (New Haven, CT),
Meeting the TMA goals of education, Acute transverse myelitis (ATM) is a Washington University (St. Louis,
awareness, and advocacy for ATM very rare disease that affects people MO), University of Miami (Miami
research have all been intensified and of all ages regardless of gender. To Project to Cure Paralysis (Miami, FL),
accelerated by the establishment and date, there have been two incidence University of New Mexico
growth of the JHTMC. It is studies published that establish an (Albuquerque, NM), University of
absolutely imperative that the Johns incidence rate of 1-4 new cases per Kentucky (Lexington, KY),
Hopkins Transverse Myelopathy million per year with peak incidences University Hospital of Antwerp
Center continue to thrive and expand. between the ages of 10-19 and 30-39 (Belgium), Cleveland Clinic
The TMA is committed to that years 1;2. There is no single etiology Foundation (Cleveland, OH), The
purpose. The TMA will continue to for ATM. In many cases, the clinical Ohio State University (Columbus,
work closely with Dr. Douglas Kerr syndrome with a sudden and acute OH), University of Washington
and Chitra Krishnan to find funding onset may be the result of damage to (Seattle, WA), Tuft’s University
sources for the JHTMC. The TMA neural tissue by an infectious agent (Boston, MA), The George
remains committed to raising funds or by the immune system or both. Washington University (Washington,
for the important research projects of Studies to date that have DC), Children’s Medical Center,
physicians and scientists from across characterized acute transverse University of Texas Southwestern
the country and around the world that myelitis have suggested that rapid Medical Center (Dallas, TX),
are central to the needs and the hopes progression of symptoms, the University of Florida, North Florida/
of the TM community. presence of back pain, signs of spinal South Georgia Veterans Health
shock, areflexia, flaccidity, abnormal System (Gainesville, FL), Barrow
somatosensory evoked potentials, Neurological Institute (Phoenix, AZ),
abnormal imaging, and high deficit Indiana University School of
Centers of Excellence dedicated to score at onset may serve as Medicine (Indianapolis, IN).
the study of rare diseases provide a indicators of poor prognosis for
common platform for patients from ultimate recovery 3-8. Approximately One of the first collaborative efforts
all over the world in search of a third of the patients have been of the consortium was the
Page 12 The Transverse Myelitis Association
establishment of uniform diagnostic was recently published: Kerr, DA characteristics that distinguish
criteria and nosology of acute and Ayetey, H. Immunopathogenesis idiopathic ATM patients that
transverse myelitis (ATM) to ensure a of acute transverse myelitis. Current eventually completely recover from
common language of classification, to Opinion in Neurology 2002; 15: 339- those who do not.
reduce diagnostic uncertainties and to 347.
lay the groundwork necessary for To further assist this study, we have a
multi-center clinical trials. These The JHTMC has established an clinical repository of blood and CSF
criteria were developed using the ongoing extensive clinical database of patients both in the acute and
existing review of the literature and where we currently have more than convalescent phase. Some of the
the vast experience of the medical 250 patients. All patients referred to ongoing studies include identification
providers in the Consortium with the Center are given a questionnaire of serologic markers that define and
patients who presented as ATM. to complete during their initial visit. characterize transverse myelitis both
Distinguishing the presentation of Data related to their illness, from a diagnostic and prognostic point
ATM as either idiopathic or disease- antecedent factors, clinical symptoms of view. We work closely with the
associated needs to be determined during the acute phase, radiologic Department of Rheumatology (Dr.
early in the acute phase as timely and characteristics and treatments Laura Hummers and Dr. Fred Wigley)
accurate diagnosis and identification received is gathered and entered into in an effort to understanding the
of the etiology is very critical to the the database. They are then followed mechanisms of ATM in patients with
management of the disease. We over time and their progress is serologic or clinical evidence of
developed a diagnostic algorithm as a charted and recorded. We currently connective tissue disease such as
first uniform step to improved care by are exploring the dataset to sarcoidosis, Behcet’s disease,
detailing a possible complete work-up understand the demographics, natural Sjogren’s syndrome, SLE and mixed
to ensure timely and accurate course of the disease, characterize it connective tissue disorder.
diagnosis. The paper was recently further based on similarities,
published: Transverse Myelitis understand prognostic variables, and In partnership with Dr. Neal Halsey
Consortium Working Group. validate our diagnostic criteria. This and the Center for Immunization
Proposed diagnostic criteria and database also serves as a clinical Safety Assessment, we are presently
nosology of acute transverse myelitis. repository for future clinical studies working on developing a case
Neurology 2002; 59: 499-505. and trials. assessment/retrospective case-control
study to determine whether there is
In order to gain an understanding of In collaboration with Dr. Frank any association between vaccination
the disease, it is critical to determine Pidcock and Dr. Melissa Trovato in as a preceding event and idiopathic
what the various triggers of the the Department of Physical Medicine transverse myelitis.
inflammation are that induce neural and Rehabilitation, we are currently
injury in the spinal cord. It is also analyzing our dataset to study any A subset of our patients with ATM
important to understand the cellular differences in pediatric and adult (N=40) have been found to have
and humoral factors that play a role in idiopathic ATM. Is pediatric ATM a recurrent transverse myelitis. We
the process. Finally, it is imperative clearly different entity? Can we have defined recurrence as the
that we discover ways to modulate the predict the outcome of a child? To presence of more than one episode
inflammatory response in order to date, we have about 30 pediatric meeting the criteria for ATM with
improve patient outcome. Dr. cases of idiopathic ATM referred to intervening improvement and
Douglas Kerr, the Director of the us from all over the world and about excluding the presence of MS. More
Center and Harold Ayetey from the 100 adult patients that meet our than half of these recurrent cases are
University of London, have recently diagnostic criteria. To our idiopathic in etiology. We are
published a paper on the knowledge, this is the largest currently analyzing the serum of these
“Immunopathogenesis of acute database of idiopathic cases. patients for specific markers, such as
transverse myelitis.” The paper is a Disease-associated ATM has a antibodies to the SSA antigen (also
review of the potential known etiology enabling a better known as Ro antigen) seen in patients
immunopathogenic mechanisms in characterization of the disease and with primary Sjogren’s syndrome,
ATM summarizing all of the recent consequent therapies. Idiopathic SLE, connective tissue diseases and in
discoveries relying, when necessary, ATM, on the other hand, is a babies with neonatal lupus
on data from related diseases such as challenge to identify and manage. erythematosus that may be associated
ADEM, GBS and NMO. This review We hope to be able to capture the with recurrent events.
The Transverse Myelitis Association Page 13
presence of depression and its interventions.
Douglas Kerr, MD/PhD and David severity. Depression is quite
Irani, MD, Co-Director of the common among ATM patients. It Basic science studies are focused in
JHTMC, published a paper on the often leads to decreased compliance two areas: neuro-regeneration and
presence of 14-3-3, a neuronal with physical therapy regimens and developing an understanding of neural
protein, in the CSF as an indicator for adversely affects ultimate outcome. injury in ATM through the creation of
poor prognosis in the Lancet 2000 We also administer four neuro- an animal model. Specifically, we
Mar 11;355(9207):901. This is an cognitive tests to ATM patients. have created a focal inflammatory
ongoing study; we have analyzed the These tests look for subtle cortical mouse model which replicates many
CSF of more than 50 patients with and sub-cortical changes that might of the clinical and pathologic features
idiopathic ATM and are currently be reflective of neurocognitive seen in humans with ATM. We hope
studying the association of the 14-3-3 deficits. to utilize this to further understand
with outcomes such as ambulation. how the immune system injures the
We are also looking for various Rehabilitation is a very integral part nervous system. We are also
cytokines and other markers in order of the recovery and treatment of exploring the clinical potential of
to correlate them with clinical ATM patients. We work closely embryonic stem cells, Schwann cells
outcome. Other studies include with the Physical Medicine and and olfactory ensheathing cells
characterization of lymphocytes Rehabilitation team (Drs. Ling-Ling (OECs), which seem to show great
present in the CSF during the acute Cheng, Rosemarie Filart, R. Sam promise in the near future.
phase of ATM, and examination of Mayer) constantly assessing and
the capacity of CSF from the acute seeking effective rehabilitation The JHTMC has a long-term and
phase of ATM patients to cause measures and management. Patients intensive commitment to both basic
morphologic alterations and apoptosis are often left with permanent science and clinical research. We are
of human cultures neurons. weakness following ATM and focused on better understanding the
spasticity which limits the extent of disease process so that we can find
The JHTMC is considering the use of recovery. Patients report stiffness, effective treatments for the patient at
magnetic resonance spectroscopy to tightness, or painful spasms often in the onset ATM. We are also dedicated
further define the spinal cord lesions the buttocks and legs. Ongoing to finding more effective treatments
in ATM patients. This would better projects include spasticity evaluation for patients who suffer from the
enable us to characterize and follow and treatment with new drugs, such chronic symptoms of ATM. Finally,
recovery of patients with ATM. as tiagabine and use of a tone we are committed to finding
assessment device for formal approaches to neuro-regeneration, in
In order to further our research functional gait assessment, order to stimulate functional
efforts, we are currently developing intervention spasticity management improvements for all short-term and
an internet-based ATM database on a with the Baclofen pump and use of 4- long-term patients with ATM.
secure server. We hope to include AP (fampridine) in the functional
information from all of the patients improvement of ATM patients.
who present with features of ATM at
all of the Centers in the Consortium. Bowel-bladder and sexual
This would further enable us to study dysfunction are common problems in References
clinical features and natural history of ATM patients. Current
the disease, while assessing our investigations are underway to 1 Berman M, Feldman S, Alter M,
diagnostic criteria and algorithm. By characterize the extent of autonomic Zilber N, Kahana E. Acute
including more Centers, the data will dysfunction and recovery, along with transverse myelitis: incidence and
tend to have less referral bias. new therapies, such as sacral nerve etiologic considerations.
stimulation that could allow patients Neurology 1981; 31:966-71.
Jointly with Dr. Adam Kaplin, MD/ to have reduced or eliminated need
PhD in the Department of Psychiatry for intermittent catheterization.
and Neuroscience, we are currently Using data from these preliminary
studying depression and cognitive studies, we hope to elicit recovery
function in ATM. ATM patients seen patterns in bladder and sexual
at the Center are given a questionnaire dysfunction and provide the basis for 2 Jeffery DR, Mandler RN, Davis
called the SCL-90 to assess the clinical trials and other future LE. Transverse myelitis.
Page 14 The Transverse Myelitis Association
Retrospective analysis of 33 If we can motivate 3000 TMA members to raise
cases, with differentiation of
cases associated with multiple $1000 per year, we will have $3 million per year to
sclerosis and parainfectious fund TM research!
events. Arch.Neurol. 1993;
50:532-5.
performed at the Johns Hopkins in fact, that I never had a chance to
3 Ford B, Tampieri D, Francis G. Transverse Myelitis Center is very publish the second newsletter this
Long-term follow-up of acute exciting. That we have one of the year. And for that I am so sorry.
partial transverse myelopathy. premier medical centers in the Honestly, I deeply apologize for
Neurology 1992; 42:250-2. country and the world interested in missing this newsletter. I know just
TM is the most hopeful development how important these communications
4 Kalita J, Misra UK, Mandal SK. to occur for all of us in the TM are for our membership. This is one
Prognostic predictors of acute community. There is so much of the lessons I learned this year; I am
transverse myelitis. Acta potential in what can be not allowed to become so busy on one
Neurol.Scand. 1998; 98:60-3. accomplished from basic and clinical project that other projects do not get
TM research at the JHTMC. There completed. I was busy planning the
5 Lipton HL, Teasdall RD. Acute
are other doctors interested in TM TMA Children’s and Family
transverse myelopathy in adults.
research from other medical centers Workshop. From July 10th 2001 until
A follow-up study. Arch.Neurol.
around the country. Most of the the workshop started on July 18th
1973; 28:252-7.
physicians on our medical advisory 2002, I spent every single day raising
board are doing research in TM or in money. And I do mean every single
6 Ropper AH, Poskanzer DC. The
areas related to TM. If we were day. The good news is that I was able
prognosis of acute and subacute
funding this research, it would be to raise over $70,000. The bad news
transverse myelopathy based on
research is that I was only able to raise
early signs and symptoms.
directly on TM. There are $70,000. From my background and
Ann.Neurol. 1978; 4:51-9.
physicians and scientists doing a perspective, this is a lot of money.
7 Christensen PB, Wermuth L, great deal of research on areas that From the perspective of effort and the
Hinge HH, Bomers K. Clinical are related to TM, both in the areas time I committed to this endeavor, it is
course and long-term prognosis of improved treatments for not a lot of money. And I was raising
of acute transverse myelopathy. symptoms and in cure research; this this money for children. It should be
Acta Neurol.Scand. 1990; 81:431- can be seen in a review of the easy to raise money for children who
5. program agenda from the 2001 have Transverse Myelitis. It was not
International TM Symposium in easy.
8 Al Deeb SM, Yaqub BA, Bruyn Baltimore. If the TMA were funding
GW, Biary NM. Acute transverse TM research, these are the Oh, the lessons learned. First, I want
myelitis. A localized form of physicians and scientists who would to thank all of the TMA members who
postinfectious encephalomyelitis. be interested in pursuing this funding made generous contributions to the
Brain 1997; 120 ( Pt 7):1115-22. for basic and clinical research. Children’s Workshop. We could not
Outside of the federal government, have done this without you. And what
9 Misra UK, Kalita J, Kumar S. A which has yet to make a commitment we did for these children and their
clinical, MRI and to fund TM research, it is going to be families was just awesome beyond
neurophysiological study of acute the TMA that makes the long-term words to describe. The parents
transverse myelitis. J.Neurol.Sci. and sustained commitment to learned so much and the children had
1996; 138:150-6. funding TM research, and only TM a great time. The children met others
research. with TM that they will stay in touch
with for the rest of their lives. These
This has been a watershed year for kids really bonded during the
me in regards to my work with The workshop. The parents were able to
Transverse Myelitis Association. I spend a weekend together sharing and
have learned so much. It has learning. They needed this time with
The TM research that is being certainly been my busiest year doing each other.
work for the Association. So busy,
The Transverse Myelitis Association Page 15
I was so touched by the generosity of became greater than we could afford to be directly involved in funding TM
our membership; please go to the to cover, and out of necessity, we research. I spoke with representatives
Children’s and Family Workshop began seeking contributions from our from all of the companies who
page on our web site and review the members with some earnestness; manufacture the medicines that all of
list of contributors. We received okay, with outright desperation. you are taking. In almost every case,
tremendous support from our TM Thus the remittance envelope the conversation began with my
community. A group of parents really appeared. having to describe and explain
made an exceptional effort to raise the Transverse Myelitis. Most had never
dollars for the workshop: Jack and The Association was growing. The heard of it. Those who had did not
Joanne Callahan (the Claddagh membership was certainly growing know anything about it. Do not count
Foundation); Cody and Shelley Unser quickly. Dr. Levy initiated our on TM research being done by
(the Cody Unser Firststep medical advisory board. Dr. Kerr pharmaceutical companies.
Foundation); Maureen and Walter established the Johns Hopkins
Hallagan; Steve and Colleen Transverse Myelitis Center. The Foundations are not falling all over
Blandford; Cathy and Dan Dorocak; activities of our small organization themselves anxiously waiting to fund
Tom and Jeanne Hamilton; Gail began to become much more TM research. I could wallpaper my
Hirsch; Morgan and Pam Hoge; and complex and the work intensified. kitchen with the rejection letters I
Rickey and Jenita Woods. Thank you But more than anything, the potential received from foundations that fund
so much to everyone who helped to for what we could accomplish began health-related organizations. Again, I
make this happen. to explode. With the focus on TM at was applying for money to help
Johns Hopkins, doing TM research children. Many of these grant
I committed to everyone who made a was no longer a hoped for goal; it applications went to foundations that
donation that every penny above our was a reality. And my not being specifically fund health-related
costs for the workshop would go into involved with money issues was no education and some are focused on
our TM research fund. We are longer realistic. If I was going to do spinal cord injuries and diseases.
completing the final bills for the my job; if I wanted to see the goals From all of the foundation
workshop, but because we begged and of the TMA accomplished; if I applications, we received only one
borrowed so many of the goods and wanted to see the people I love foundation grant; and that grant was
services for the workshop, close to benefit from the results of TM facilitated by a physiatrist on their
$40,000 from this fundraising is going research, I was going to need to board who understood TM.
to be added to our TM research fund. become very involved in fundraising.
Medical supply companies and
This is all great news. So, what’s So, I have become involved. For the adaptive equipment manufacturers
with the lessons? past year, I was involved every day. were great. We received grants from
Where do I focus my energy now – many of the local companies that
When I first became involved in the on getting you involved! I have to work with TM patients and from
Association work, I told Pauline that I get you involved. I cannot do this national manufacturing and
would do anything to help people and alone. That was another lesson distribution companies. Most are not
to help the TMA. But I did not want learned this year. In 365 days I in the same league as the
to get involved in the money part of raised $70,000; that is not enough pharmaceutical companies. Their
this thing – not at all. It was not that I money for our operational needs and grants were small, and they are not
didn’t have an interest in it; I was our research needs. ordinarily involved in funding basic
allergic to the idea of being involved research.
with the money side of the work. And Here are some additional lessons….
I avoided it for a long time. We have These were all difficult lessons for
never had membership fees. We The pharmaceutical companies are me, because I take all of these issues
weren’t raising much money, and it not going to fund TM research. If so personally. The failures are
was easier to pay for everything out of there are 34,000 people in the United painful. I would receive an envelope
pocket than it was to start asking States with TM, we are never going from one of these companies and
people for money. We operated this to look like a market to these foundations in the mail, and Pauline
way for a long time; this is all evident companies. They do research and would hide under the couch while I
from the financial statements we they develop medications that benefit opened it. Almost all of the time I
publish each year. The costs finally TM patients, but they are not going had the opportunity to become
Page 16 The Transverse Myelitis Association
outraged; almost all of them were TMA has no employees whatsoever. gruesome, but it saves us a lot of
rejections. “How could they reject We have almost no overhead. The money. Money that we would rather
us? The quality of this program is officers of the Association pay for see go to TM research.
outstanding; just look at the quality of their own computer equipment and
our presenters. We are helping supplies, office equipment, office We have not used TMA resources to
children who really need this help. supplies, internet access, phone bills, pay for travel. When the TMA board
Who could be doing something more including long-distance phone bills members travel to a symposium, they
worthy with these dollars? This and we all work out of our homes. pay their own travel, hotel and food
stinks!” Then Pauline would get out All of the funds we receive go expenses. The board members pay
from under the couch and ask me to directly to offering services to our their own registration fees. Board
please not have a heart attack. How members. The vast majority of our members pay their own way to Board
can you not take this personally? operating costs are for the printing of meetings. When the Johns Hopkins
information that is distributed to our TM Center opened, we thought it was
The most important lesson … far and members and for postage. important to have the Board
away the greatest support I received represented at this auspicious
for the workshop came from other We are frugal about every penny we occasion. Our representative, Dick
people who have TM and from my spend. If we can get it donated, we Gilmur, paid his own expenses to get
family and friends who understand try to get it donated. If doing it to Baltimore for this event.
what TM has done to Pauline’s life ourselves will save a few dollars, we
and from the family and friends of the do it ourselves. I was at a meeting Beyond the printing of our remittance
people in the TM community. recently and was explaining the envelope, we do not use TMA
process I use to publish and mail the operating funds for the purpose of
As I have written before, and as I will TMA newsletters and directories to fundraising.
write many more times in the future, thousands of people in more than 60
if we are going to raise money for TM countries. When I completed my Americans want their organizations
research, we are going to have to be description, a person in the audience honest, open, frugal, and smart about
the people who do it. Do not look to remarked that she was also involved how they spend money and invest
anyone else to accomplish this task; in mailing a newsletter and it sure money. What Americans want from
no one else is going to do it. So, I sounded as though I was doing this non-profit organizations is all of these
have to raise money, and I have to the hard way. Believe me, I know I qualities to the tenth power. We have
convince you that you have to raise am doing this the hard way. The worked very hard since 1994 to build
money. And then I have to motivate easy way would be for me to pay a your trust in the TMA and to build
you to raise money. And that is a lot company to do all of the collating, our credibility. You should
of work about money from someone stuffing, sealing, labeling, sorting emphasize all of these characteristics
who does not want to be involved and mailing. Unfortunately, there is of the TMA when you are fundraising
with the money part of this job. a cost associated with every one of among your family and friends. We
these steps. The more steps I do, the are very proud of the TMA; you
I know American culture. In fact, I’m less the total cost of the job. So, I should be also.
a cultural anthropologist, so I am manually sort the zip codes for a bulk
supposed to understand American mailing. My eighty year old father Why do we need TM research and
culture really well. I think I do. And and twenty year old mother go why should you care about it? We
I think we’re fascinating. through the more than 3600 labels need TM research because TM is not
and systematically put them onto all MS, it is not Devics, it is not a
I want to share with you some of what of the envelopes. I have already put traumatic spinal cord injury. We need
I believe gives the TMA credibility in return labels on each of these for the doctors to figure out what the
asking you to get involved with envelopes and have stamped the disease process is for TM. What is
fundraising and also in asking you for postage on them. Then I invite TM? What causes TM? As you read
donations. family and friends over to my house in the JHTMC research article, the
for a weekend to collate, stuff and doctors are just now beginning to
No one who works for the TMA gets seal. Finally, I take a day off of search for the answers to these most
paid. We spend hundreds and work, borrow my ex-wife’s truck, basic questions. TM research will
hundreds of hours of our time and do and take a truckload of sacks to the result in a better understanding of the
so entirely on a voluntary basis. The post office. It sounds gruesome, it is disease, and it will result in better
The Transverse Myelitis Association Page 17
approaches to treating people at the the information he shared with me research and then there are clinical
onset. Will that research help Pauline about research and clinical trials: trials. I have categorized each class
or Cody or Jim or Rachel or Kevin or of research into small, medium and
Stephen or Maureen? Probably not. There are significant similarities and large project categories.
But I would never want for another parallels between traumatic and
person to go through what our loved non-traumatic spinal cord injury In regards to basic science research,
ones have experienced. If we can (SCI). It is important to understand the total cost of a small project might
help them, we should. No one else is this and draw knowledge from fields be from between $15,000 to $30,000
going to help them. It is us or no related to Acute Transverse Myelitis. per year for three years. The costs
one. Are we getting the picture yet? Fundamentally, there are common would cover such expenses as 50% of
pathways of neuronal death even if a technician’s salary and supplies,
You should be interested in the initial injury is distinct and such as equipment and reagents. A
supporting TM research because this varied. However, there are basic medium grant might be for about
research is going to result in differences both in the acute phase $100,000 per year for three to five
improved approaches for treating TM and long after initial injury between years and very often involves salary
symptoms. Symptom management traumatic and non-traumatic SCI. support for the principal investigator,
research is one of the important areas The extent of scar tissue is much as well as salary support for a
of concern at the JHTMC. TM more in traumatic SCI, the graduate student, a technician and a
research at the JHTMC is also distribution of injury in the spinal post doctoral student with about
focused on cure research. One of the cord is different, cellular glial $40,000 of costs associated with
most exciting discoveries in this reaction to injury is different equipment and reagents. A large
research is that only small increments between the two. It is, therefore, at basic science grant would focus on
of physical improvement can result in least probable that the fundamental one broad research subject with
significant functional gains for a mechanism of regeneration will also different sub-projects and goals.
person with spinal cord injury or differ. Thus, to fund traumatic SCI Typically, the costs of large projects
disease, such as TM. I am so hopeful centers will beget clinical trials in would be from $250,000 to $300,000
for this exciting future. And I want traumatic SCI only. No trial will per year for three to five years. The
this future to arrive as quickly as enroll patients with both. The only costs would include approximately
possible. way to conduct clinical trial 30% of the principal investigator’s
research in ATM is to generate a salary support, the support of two
There is another very important better understanding of this and only technicians, a graduate student and a
reason to consider funding TM this disease process (Dr. Kerr, post doctoral student and about
research. It is the case that the personal communication). $150,000 for reagents and supplies.
research being performed on
traumatic spinal cord injury and When the time comes that there A small grant for clinical research
myelin regeneration, as well as in are clinical trials available at the could cost anywhere from $50,000 to
other areas of medicine has a positive Johns Hopkins Transverse more than $100,000 per year. The
benefit for TM patients. When it Myelitis Center, only TM patients money is typically used to provide
comes time for clinical trials, will be included in these clinical salary support so that a researcher’s
however, I am not at all certain where trials. And as you have read in the time may be used to carry out clinical
TM patients are going to fit into the previous article, the clinical trials research. Small projects do not
schemes of some of these institutions. will concern both improved involve clinical trials.
It may be that those institutions that treatments for TM symptoms and
have been heavily funded by families procedures to restore myelin and Medium to large clinical trials are
who have been impacted by traumatic nerve cells. driven by those who will profit from
spinal cord injury only want clinical them. These are projects with costs
trials focused on those patients. It I have been asked over the years that are typically between $500,000
may also be that there are how much it would cost to fund TM and $1.5 million per year. Very
considerations about the research projects. The following rarely are these projects supported by
characteristics of the trial population information should help you private foundations; they are
which would discourage the inclusion understand something of the scope generally funded by such entities as
of TM patients. I had a discussion and costs associated with medical pharmaceutical companies and stem
about this issue with Dr. Kerr. This is research. There is basic science cell companies. The grants cover the
Page 18 The Transverse Myelitis Association
salaries for a principal investigator, a fundraiser; our challenge is to do this thing. I only have control over me.
nurse, a clinical coordinator, and a fundraiser every year. We will not So, I need to do what I can.
center coordinator, as well as other succeed at our goals if we raise
equipment and supplies. money for TM research one year and Funding TM research should not be
then take a nap on the couch for a an American issue. Over the years I
So, here is the challenge for you and couple of years. Once we begin to have come to feel a close kinship with
me. First, we need to keep The fund TM research, we will not be our TM community around the world.
Transverse Myelitis Association taken seriously by the medical and I have gone from offering information
operating. If you are in a financial scientific community unless we are and support to people in need to
position to help us, please use the able to sustain TM research on a experiencing friendships with people
remittance envelope and send us a regular basis. for whom I deeply care and love. We
donation to help us with our operating are an international TM community.
expenses. Please keep in mind that Here’s what I am going to do to meet So, Steve and Ali, and Errol, and
the only support we receive comes my end of the bargain. I am going to Ulrika, and Ursula, and Tanishka,
from those of you in the TM have a golf outing every year. I love Yvonne, Geoff, Ann, Ian, Mary-Jo,
community. the game of golf, so this is an activity Mette and Thomas, Roland, Netta this
that I can do every year. If I chose research is for you also. What the
And the second and bigger challenge an activity that I do not have a JHTMC learns about treating TM
is that we need to hold ourselves passion for, I know I will not be able patients and curing TM patients, will
accountable for raising money for to do it every year. I am going to be shared with your doctors in your
research. You do not need to be approach my family and my closest countries. Dr. Kerr is already
wealthy to do this fundraising. You friends and also the people with TM working with physicians from all over
do not need wealthy friends and in my community, and their family the world. He will consult with
family to do this fundraising. You and friends and I am going to invite doctors from all over the world and he
only need to be motivated. Please them to get involved in the planning will share research results with
read the articles about how people are of the golf outing. I will be able to doctors all over the world. We need
raising money for the TMA; hopping, raise much more than my $1000 your help. Please get involved in
shooting hoops, reading books, share from this fundraiser and I fundraising for TM research! And
playing golf, having dinner parties, know that I can create a social please encourage the members from
holding raffles. There are so many opportunity for people in my the TM communities in your countries
different ways to raise money. How community with TM, and I know to get involved, as well.
you do it is really not the primary that I can also create some awareness
issue. The focus of the activity is to about TM in my community. So, when is the TMA going to begin
approach those people who are closest Pauline is meeting her commitment funding TM research? I don’t know.
to you; your family, your friends, to fundraising by participating in the Here is what I do know. We cannot
your neighbors, your co-workers. Reading for Rachel Program in her raise $100,000, fund three small basic
These are the people who have the school and in all of the elementary science projects, and then have to wait
most intimate knowledge of how TM schools in her district. Pauline will three years before we raise enough
has impacted your life and these are also be available to tell me money to make available the next
also the people who care about you everything I am doing wrong while request for research proposals. In the
the most. These are the people who conducting the golf outing. three years the TMA is absent from
will offer you the greatest financial the scene, physicians and scientists
help. You ask them to sponsor you Are we going to have to raise this will find new hobbies. We have to be
for the number of books you read or money for research forever and ever? able to make a commitment to
the number of times you hop or the I hope not. I do eventually want to fundraising that is sufficient for the
number of hoops you make; what you go lie down on the couch, eat a scientists to be willing to make a
do to raise the money should be sandwich, and give a Browns game commitment to TM research. I think
motivated by your interests. The my undivided attention. It is my that is the bargain. We will begin to
important focus should be to get these great hope that the NIH will fund research when there is a steady
people involved and to keep them eventually focus on and fund TM and fairly predictable stream of funds
involved. research. But I have no control over being generated for TM research.
the NIH, so I have no idea if and
Our challenge is not to do a when they are going to do the right This is going to happen as soon as I
The Transverse Myelitis Association Page 19
can figure out how to motivate all of knew this was something we should that some patients will do anything to
you to get involved and raise TM do and that we needed to do. But my alleviate the pain. All hope of any re-
research dollars. If it takes a year, I notion of this research was almost covery is lost.
will be delighted. If it takes ten years, ephemeral; I did not know anyone
I will be less delighted, but I will be who was doing anything that looked As a Transverse Myelitis patient with
satisfied. I am not going to get remotely like TM research. Well, chronic neuropathic pain since my ini-
discouraged about how long this that situation has certainly changed. tial insult in August 1996, this is ex-
takes; but we are going to do this. TM research is being done, and we actly how I was starting to feel. All
We have to do this. We owe this to have a group of brilliant doctors who hope for any relief was gone. For
those of you who have suffered with are doing all kinds of research many years I believed that my pain
TM for decades; we owe this to those related to TM. Given the money, we was just a part of my condition, some-
of you who have suffered with TM will attract them to doing TM thing that I would have to learn to live
for the past couple of weeks. We owe research. An ephemeral notion has with for the rest of my life. Finally,
this to the people who are going to evolved into a sense of urgency after five years, I hit a wall of no
contract TM tomorrow. We owe this about not losing an opportunity. longer being able to tolerate the con-
to the children with TM who are just stant daily pain. I was having a burn-
beginning their lives. Please get involved. Please make a ing sensation diffused throughout my
commitment to raising research legs, feet, toes, thighs and buttocks. I
I remain allergic to the money thing. dollars. Please make the quickly developed depression and
But you have all changed me. I know commitment to raising these dollars very low self-esteem. I did not want
what is possible for you. I know from your family and friends every to live any longer, if each and every
what needs to be done for you … year. We can make a difference for day of my life I had to wake up to
days without pain, days with control ourselves and for those in the future more intolerable and debilitating pain.
over your bowels and bladder, being who are going to suffer with these I was using over-the-counter pain
able to share a totally and mutually same horrible symptoms. Please medications such as aspirin, extra-
satisfying physical sexual experience help me help them! Please help me strength Tylenol, and ibuprofen, com-
with your companion, being able to help you! bined with physical therapy, biofeed-
carry the trash to the curb. I will back, self-hypnosis, and ice wraps.
Coping with chronic pain can be one Eventually, overtime, all became use-
remain committed to this goal, of the most difficult challenges the
however long it takes. We are going less in controlling my pain.
Transverse Myelitis patient will face.
to raise this money; we have to make Over time, the pain can become
this research happen. My doctor informed me that I did not
overwhelming, leading to sleep dis- have to live with severe chronic pain;
turbances, immobility, and major de- there were available treatment options.
One final point, we have a wonderful, pression. Quality of life is signifi-
incredibly competent, committed However, it would be necessary to
cantly decreased. This pain will work me through a list of these op-
medical advisory board. The
physicians on our board are tions, using a combination of drugs
Chronic Pain Control Using A before analgesia (pain relief) might be
researchers and scientists, as well as
Spinal Cord Stimulator: A achieved. My doctor cautioned that
physicians. They are going to help us
Patient’s Perspective pharmacological management can
design the research program and the
process for requesting, reviewing and Rick Steele produce the desired analgesia in some
awarding grants. We are going to steelhop@earthlink.net patients but not all. He also informed
rely on their wealth of experience and me that any relief produced might be
expertise in this area. The TMA tempered by the drug’s associated side
gradually become more difficult to effects. Our therapeutic goal became
board is going to be well-guided by control, interfering with daily activi-
the medical advisory board in improvement of the quality of life by
ties, family-life, and the ability to pain reduction, mood elevation, in-
developing a program that will attract function productively at the job. The
the best researchers and the best creased mobility, and better sleep with
increase overtime of the intensity and minimal side effects.
research projects. duration of the pain commonly re-
sults in heightened distress, as well Neuropathic pain can be very resistant
I can remember talking about funding as other psychological and psychiat- to treatment. I was immediately
TM research before I knew Dr. Kerr ric disturbances. This pain can so se- started on Lidocaine patches (topical
and before there was a JHTMC. I verely compromise the quality of life
Page 20 The Transverse Myelitis Association
anesthesia agent), Topamax, Neu- small surgically placed neurostimula- tor for a Transverse Myelitis patient.
rontin (anticonvulsants) and Well- tor that sends electrical impulses di- The Spinal Cord Stimulator is consid-
butrin (antidepressant). With a medi- rectly to the spinal cord or peripheral ered an advanced pain treatment mo-
cal condition like Transverse Mye- nerves. These electrical impulses dality; it is not a treatment option for
litis, nerve messages traveling block the pain signal from reaching everyone. In general, all conservative
through the spinal cord may become the brain. Having the diagnoses of pain management approaches should
scrambled and misinterpreted in the both Transverse Myelitis and diffuse have been tried and failed in ade-
brain as pain. Therefore, medications pain throughout my legs, feet, toes, quately controlling pain before the use
that work directly in the brain, such thighs and buttocks, the area of treat- of a Spinal Cord Stimulator.
as anticonvulsants and antidepres- ment and stimulation would need to
sants, have been successful in treating be directly on my spinal cord. Spinal There are two companies in the
neuropathic pain in some patients. cord stimulation has been proven United States that currently market
Trying to identify the “right” dose beneficial in treating chronic pain of the Spinal Cord Stimulator, Advanced
and combination of each drug is a the trunk and lower extremities. Neuromodulation Systems, Inc.
trial-and-error process. After several (ANS), and Medtronic. You may
months of close monitoring while ti- The Spinal Cord Stimulator (SCS), visit the ANS website at www.ans-
trating my drugs, I was ingesting up also known as a Dorsal Column medical.com or speak directly with a
to 4800 mg. of Neurontin, 400 mg. of Stimulator is the particular neu- representative at their headquarters in
Topamax and 300 mg. of Wellbutrin rostimulator used directly on the Plano, Texas by calling (972)309-
daily. This combination of drugs was spine for the treatment of severe 8000 or (800)727-7846. Medtronic’s
starting to relieve my pain; however, chronic pain. This device consists of website is www.medtronicpain.com
major side effects appeared abruptly. a surgically implanted pulse genera- or they can be reached at their Min-
These side effects, which were start- tor producing low-level electrical im- neapolis, Minnesota location by call-
ing to interfere with my general good pulses delivered directly to the spinal ing (612)574-4000 or (800)328-2518.
health and ability to have an im- cord via leads surgically inserted in
proved quality of life, were blurred the epidural space. These electrical Each company offers two different
vision, double vision, somnolence, impulses interfere with the direct types of Spinal Cord Stimulator sys-
dizziness, ataxia, loss of ability to transmission of any pain signals trav- tems: a fully implanted system with
concentrate, loss of appetite and nau- eling along the spinal cord to the an internal power source, and an im-
sea. Severe diarrhea necessitated a brain. Painful stimulation is then re- planted system with an external power
quick tapering of all drug therapies. placed with a more pleasing tingling source. The major difference between
And with that, intolerable pain had sensation in the areas where pain is these two systems is, of course, the lo-
returned. My only option was to start usually felt. This sensation is re- cation of the battery. Where as the in-
narcotics in a high dosage. I took up ferred to as parasthesia. ternally-powered system uses a bat-
to 120 mg of oxycontin every six tery implanted beneath the skin, the
hours, yet with only minimal relief. After the pain control specialist indi- externally-powered system uses a bat-
cated that I would be an appropriate tery worn outside the body.
Medications are used to treat chronic candidate for the Spinal Cord Stimu-
neuropathic pain, if the benefits of lator, I investigated the different This fully implanted system’s battery
the drugs are greater than the possible companies that manufactured the source is an Implantable Pulse Gen-
side effects. For me, whose pain various available simulators and their erator (IPG) consisting of the battery
therapy was no longer effective and different components. Company rep- and related mechanics. Housed in a
caused serious side effects, my treat- resentatives were both willing and single metal container that is com-
ing neurologist referred me to a pain eager to meet with me, answer my pletely implanted under the skin, it is
specialist for evaluation of Advanced questions, and to provide me with the usually placed in the area of the but-
Pain Therapy Neurostimulation. names of other patients who recently tocks or abdomen. The IPG, about 2
had Spinal Cord Stimulators im- and 1/2 inches by 2 inches and 1/2
Advanced Pain Therapy Neurostimu- planted. In addition, knowing that a inch thick, creates and sends the elec-
lation is a revolutionary treatment for Spinal Cord Stimulator requires an trical impulse to the spinal cord via
chronic pain and is a proven alterna- invasive surgical procedure with po- wire leads that run from it to elec-
tive to medications and other thera- tential risk factors, I decided to seek trodes positioned in the epidural space
pies for pain control. Advanced Pain second opinions regarding the appro- of the spinal cord. This system re-
Therapy Neurostimulation uses a priateness of a Spinal Cord Stimula- quires additional simple surgical pro-
cedures from time to time to replace
The Transverse Myelitis Association Page 21
the battery when it becomes depleted. An important fact to note is that the vanced spinal cord pain control tech-
Batteries usually last about three implantation of the stimulator is a nology and in no time at all Medtronic
years. However, actual battery life is two-staged surgical process. It in- could have the better product. More
further dependent upon the particular volves a trial implantation of the spi- importantly, I valued ANS for the
settings and frequency programmed nal cord leads on a temporary basis professionalism, the responsiveness,
to treat your pain. This system can to help determine if the therapy will and the genuine caring attitude dem-
remain on 24-hours per day even be effective in the patient’s pain con- onstrated by the company’s field ser-
while one showers, bathes or swims. trol. A trial period may last any- vice representative.
where from one to ten days. If the
The externally-powered system has a trial proves to be successful (pain is The treating physician and a field ser-
similar IPG device known as a re- decreased by 50 percent or more), vice representative will teach each pa-
ceiver that is much smaller in size, the patient will return to the operat- tient about the use and care of the im-
containing electronic circuits, but no ing room to have the complete sys- planted stimulator. The patient will
battery. Like the IPG, this receiver is tem permanently implanted. Surgi- learn how to adjust the level of stimu-
positioned under the skin in the abdo- cal pain from the incision site on the lation to control their pain throughout
men or buttocks area. The receiver back will last for several days, but it the day. Gradually, the patient will
functions similarly to the IPG by heals quickly. However, pain at the begin to take control of their chronic
sending mild electrical impulses to IPG or receiver site on the buttocks pain and do more of the things they
the spinal cord. It operates via radio- can last up to six weeks as scar tis- were wanting to do. I have discovered
frequency signals that are passed sue is formed. Once the scar tissue that living with the spinal cord stimu-
through the skin from a transmitter is formed, this pain will disappear. lator requires no extra time or effort
worn externally on the belt. A re- on my part. However, I must take ex-
placeable taped patch with an antenna I have had the Advanced Neuro- tra precautions around department
wire, which runs to the transmitter, is modulation System IPG (the inter- store theft detectors, airport security,
placed on the skin directly over the nally-powered system) Spinal Cord high-voltage power lines, and power
site of the implanted receiver. For the Stimulator in place since April 2002 generators as their magnetic power
system to operate, this patch and an- and have had a significant decrease devices may cause an increase or de-
tenna connected to the transmitter in my pain. I’m currently only tak- crease in the stimulation effect. Addi-
must be in place. Patients whose pain ing 10 to 20 mg. of oxycontin per tionally, MRI (magnetic resonance
requires high energy levels to control day. A good outcome with the Spi- imaging), ultrasounds and diathermy
their pain are good candidates for this nal Cord Stimulator is defined as a procedures should be avoided. All
system because no surgery is required decrease in pain by 50 percent or patients are provided with an identifi-
for battery replacement. However, more. I’m experiencing about a 75 cation card that contains important in-
this system cannot be used while percent reduction in the debilitating formation about their implant. It
showering, bathing or swimming, and pain that had been occurring prior to should be used to alert medical per-
the external component can be diffi- the implantation of the stimulator. sonnel and others, such as airport se-
cult to carry as well as sleep with. This reduction in pain has provided curity officers, that you have an im-
me with the ability to start daily re- planted medical device.
A Spinal Cord Stimulator company habilitation and to actively partici-
representative and the treating physi- It’s over! What a great experience!
pate in a structured physical therapy What am I talking about? The two
cian will assist the patient in selecting program. As I become more familiar
which of the two systems is better day conference on Transverse
with the stimulator and when to util- Myelitis that was held June 19-20,
suited for the patient’s type of pain. ize its various programs specifically
Generally, the internally-powered 2002 at the Sutton Place Hotel in
programmed for my needs, I’m be- Newport Beach, California. A
system (IPG) is the one to choose for coming more successful in taking
simple pain patterns, which require conference made possible by a grant
control of my pain. After a pro- that the Cody Unser First Step
less energy and therefore fewer bat- longed investigation process, I chose
tery replacements. The externally- Foundation received from the
the ANS neurostimulator. My deci- California Endowment fund for
powered system is better suited for sion was based on the fact that the
the more complex pain patterns, be- California residents. It was co-
ANS product is currently more tech- sponsored by the Cody Unser First
cause the battery is contained in the nically advanced then the Medtronic
external transmitter and can easily be Step Foundation and the Reeve -Irvine
system. However, both companies Research Center at the University of
recharged. are aggressively pursuing more ad- California, Irvine. What an exciting
Page 22 The Transverse Myelitis Association
time everyone had. We made new friends and to put faces with names
friends, learned a lot of new of others with whom I have The afternoon session started with Dr.
information from the speakers and corresponded over the years. People Doug Kerr. Dr. Kerr discussed the
from each other. We bonded, we were bubbling with excitement and clinical features and prognostic
cried, we got excited at some new anticipation of the programs ahead factors of Acute Transverse Myelitis.
ideas, some of us came away with a for the next two days and the Chitra Krishnan, MHS, spoke about
determination to start the ground opportunities to make new friends. Acute Transverse Myelitis being a
work to build a network of support group of disorders characterized by
groups in the state. The first morning we heard from focal inflammation of the spinal cord
members of the Reeve-Irvine and resultant neural injury. After our
Research Center who each spoke break we heard about symptom
Cody Unser First Step
about topics related to mechanisms management in Acute TM. Leslie
Foundation California TM of neural injury in the spinal cord. Morrison, M.D. from the University
Conference June, 2002 Oswald Steward, Ph.D, Director, of New Mexico talked about Acute
Cindy McLeroy Reeve-Irvine Research Center talked TM special issues, specifically
to us about the body’s response to pediatric Acute TM. Adam Kaplin,
CNS injury. He described how our M.D., Ph.D. talked about the
One of the attendees had been understanding of how the body psychological impact of TM on a
diagnosed with TM in 1964. Until reacts after an injury and what can person. He addressed how the impact
this conference, he had never met be done to repair the damage is on individuals can be profound as
another person with TM. We growing at a fantastic pace and the they adjust to TM. The results can be
received first-hand information about body’s response to CNS injury. prolonged sadness and
the latest spinal cord research from Hans Keirstead, Ph.D. spoke about demoralization. Other events can
the members of the research team at potential treatments and clinical result in depression.
Reeve-Irvine Center. We met and trials. The Reeve-Irvine Research
heard from Dr. Kerr, Dr. Kaplin and Center currently has several We had a group dinner. Great fun,
Chitra Krishnan, MHS, all from the potential treatments in the preclinical friends and talk. Many of us talked
John Hopkins TM Center. We met phase, on the verge of moving to with Cody Unser during the evening
Cody Unser, the founder of the Cody phase I clinical trial. Aileen and are so impressed with her
Unser First Step Foundation, who has Anderson, Ph.D. spoke about commitment to TM. She also is a
a contagious upbeat attitude with so inflammation. She described how regular teen-ager. We so appreciate
much energy directed towards raising the processes of degeneration and her involvement with TM.
research funding and awareness of regeneration are intertwined in both
TM. their impact on, and potential The next morning, after a continental
benefits to, the goal of improved breakfast, we heard Dr. Morrison
Those of us who had never had the functional outcome in the injured discuss symptom management in
opportunity to meet Sandy and spinal cord. Acute TM, including spasticity and
Pauline Siegel finally did so and gait. Dr. Kaplin spoke about
wished we had been able to do so Another member of the Reeve-Irvine urologic/sexual function and Dr. Kerr
earlier. Looking back at those two Research Center team is Maura talked about Neurorestorative
days I am in awe of the people I met Hofstadter, Ph.D., Director of therapies. Sandy Siegel, Ph.D. and
and their commitment to research, Education and Scientific Liaison. President of The Transverse Myelitis
awareness and the support of each She was a critical component of Association talked about quality of
other with TM. putting the event together and was life assessments and caregiver issues.
an instant friend to many of us. There was also a lot of great
Over 100 folks attended the free discussion on personal issues of the
event. There was a great mix of The morning session was followed folks attending the conference. We
people in attendance. There were by lunch. There was so much learned a great deal from each other.
those of us with Transverse Myelitis, ebullience in the room as everyone
caregivers, physical therapists, was trying to meet as many other After lunch, another great meal, we
clinicians, and doctors. It was great people as they could and to discuss had TM networking and breakout
to see people that I have met through the roads everyone has traveled with sessions. I participated in a group that
the years as well as to make new TM. Food was great too! had so much energy towards support
The Transverse Myelitis Association Page 23
group activity. We brain-stormed which made me furious. inseparable from me and I was
some of the things we would be inseparable from her.
interested in seeing done in a support So, when my mom told me she was
group. At the end of the day it was moving in with us, I was determined For some odd reason I became
difficult to leave. Debbie Capen and I to get rid of her. She had to go lifelong friends with this once ill
have agreed to co-coordinate everywhere with me, to the doctor’s faced immature girl. Or was it me that
initiating support groups in office, the mall, even with me to be I was staring at, I didn’t know? Now,
California. If you are interested, you with my true friends who I really everything she wore was a beautiful
can contact me using my email cared about. It was so embarrassing vibrant silk outfit of a purple lime.
address at to go out in public places with her. Her daily outfits I appreciated through
cindymcleroy@sbcglobal.net or She was clumsy, awkward and didn’t expression of our true beauty and
calling me at (714)638-5493. know how to act. She got in what it meant to both of us. I know
everyone’s face and tripped everyone when she disappears in my life she
I sincerely hope that this conference up. I even kicked her one time out of will always be in my heart as my
was just the “FIRST” annual TM annoyance. So, finally, one day I friend I had never asked for.
conference for California. decided to confront her.
So you would understand why I was
Cody wrote a really wonderful essay “What do you want from me,” I upset when my mom brought home
for a school assignment. She read it asked? Tony, my second wheelchair.
at the California TM Conference this
summer. I thought it was great and “I just want you to like me and let
asked her if she would let me publish me be a part of your life. If you
her essay in the newsletter. Thank would just give our friendship a
you, Cody, for allowing me to share chance, I know we can do amazing Alet Uys has TM and is a member of
your inspiring words with the TM things together,” Jade replied. the TMA. She is a 13 year old living
community. in Pretoria South Africa. Alet has
So, I made her a deal. For one week I conducted research and wrote a case
I had become quite comfortable with would include her in everything I did study which has been published by
all of my friends, and since I had and I wouldn’t judge her, as I would MedPharm’s journal, The Medical
known most of them from my learn to become her friend. Journal. Douw Greeff, MD, the Man-
childhood, I could honestly say I aging Editor of Geneeskunde/The
knew their good and bad sides like That was three years ago. I now can Medicine Journal, has granted us
the back of my hand. When my mom say that Jade is the sexiest, most permission to publish Alet’s paper
took me to meet Jade on that bitter, active, willful, out going, about TM. According to Dr. Greeff,
cold December day, I wasn’t looking courageous, fun loving companion I Alet is the youngest person to ever
for any new friend. The day tasted have ever met. She lights up a room publish in The Medical Journal.
like a stinging, rotten sour apple jolly wherever we go. She understands me
rancher that would not go away. The when I’m down. She lifts me up and Alet’s research and paper
first thing I noticed about her was takes me places I thought I would were exhibited at the Gauteng Provin-
how pale and rigid she seemed. never be able to see. She pushes me cial Exposition. She received a gold
Everything about her was mechanical, out on the dance floor and shows me medal for her work and received an
the way she moved and showed off. how to jive in my own atmosphere invitation to participate in the Na-
She had no color in her wardrobe. She and paint the swift mood of the tional Science Exposition. She also
moment in slow motion. She taught received a certificate of achievement
The Friend I Never Asked For
me that even though our friendship from The Centre for Schools of Qual-
Cody Unser was crucial, I could be an individual ity AFRICA for excellence in Medical
separate from her. She also taught Research. The Centre has trustees in
me to never be afraid of whom you the United States, Turkey, China and
dressed in nauseating metallic green. are and to never let it escape from South Africa. Alet has received the
She definitely had a very high and your heart. Jade was more than just a AVENTIS First Prize, for out-
strong opinion about herself for stranger on the street; our friendship standing achievement in medical sci-
someone who was very ugly. She was became more personal than just your ence.
relentless in trying to get to know me, regular hello. It was like she was
Page 24 The Transverse Myelitis Association
Gevallestudie: Transvers Miëlitis doctor said that my condition was
Alet Uys’ Case Study as Published by Geneeskunde/The Medicine only caused by growing pains.
Journal, South Africa
Thursday October 05: My parents de-
cided to take me to an orthopedic sur-
No less than seven doctors in various experience with Transverse myelitis geon who confirmed that my condition
branches of medicine visited her at the age of 11 motivated me to do was probably due to ‘growing pains’
stand during the Gauteng Provincial research on this topic for our and he prescribed Voltaren gel, which
Exposition. The doctors asked her school’s grade 6 and 7 science expo. he believed would help to relieve the
many questions about her research pain. I was also told to go for an iso-
and paper. She dealt with the learned My goal with this research is to tope scan the following day in order
men in a very calm and confident improve awareness about Transverse to confirm the diagnosis.
manner, as she was so sure of her myelitis, especially among medical
facts. students and qualified doctors, as the Friday October 06: The Voltaren gel
disease is very rare, information in did not relieve my pain. I went for the
The National Exposition, held in Oc- medical literature does not always isotope scan and the results indicated
tober 2002, is a Youth Science Com- provide all the answers and the that everything was fine. My parents
petition and the most prestigious disease can only be cured if it is and I found it hard to believe that
competition of its kind in Africa. No diagnosed and treated very early. growing pains could be so constant
less than 400 schools participated in and bad, causing me to wake up time
the Provincial Exposition; whilst 450 Two thirds of all Transverse myelitis and again during the night.
schools participated with 700 projects sufferers do not recover completely;
at the National Exposition. Alet re- I am very fortunate and grateful to Sunday evening October 08: I fell out
ceived the gold medal at the National be one of the patients in the world of bed when I tried to get up to go to
Exposition for the best project in the who recovered completely from this the bathroom. My parents phoned the
category, “primary school medical disease because of early diagnosis. orthopedic surgeon at his home and
sciences.” Alet will have the oppor- My research is a way through which informed him about the weakening
tunity to exhibit her project in Mos- I also want to reflect my condition of my legs. We were told to
cow next year. appreciation for regaining my visit his rooms the following day;
health. when he realized that my problem was
Alet’s ultimate goal is to go to medi- not of an orthopedic nature, but neu-
cal school and to become a neurolo- My work is dedicated to dr Joe rological, I was immediately referred
gist. Terblanche (Neurologist at Unitas to a neurologist for a complete neuro-
hospital, Centurion, South Africa) logical examination.
Alet Uys's article has been published who helped me and motivated me to
in Afrikaans in the 2002 July issue of progress, step by step, to where I am Monday morning October 09: I was
Geneeskunde/The Medicine Journal: today. finally admitted to hospital with the
Uys A. Transverse Myelitis. Case diagnosis of acute Transverse myelitis
Study. (Afr) Geneeskunde 2002;43 My experience with Transverse and accompanying minor bladder
(July)(6):47-50 (ISSN 0016-643X) myelitis started on 2 October 2000. I complaints.
The article is also available on the felt pain from deep within my upper
Geneeskunde/The Medicine Journal legs and the sensation of a tight band Transverse myelitis is a very rare
website www.medpharm.co.za. around my waist. The constant and neurological disease that affects one
terrible pain kept me awake at night out of a million people each year. The
The following article is a direct and I felt very sick. patient’s autoimmune system
translation of the Afrikaans article as mistakes the myelin sheath of the
published. Tuesday October 03: I went to see spinal cord for intruders and attack
my family doctor. He drew some the sheaths, causing inflammation of
blood and suggested that my condi- the spinal cord.
I am a 13 year old, grade seven pupil tion was caused by growing pains.
and currently headgirl at Lynnwood When we phoned him the following Autoimmune diseases are the result of
Primary school (an Afrikaans school day for the results, we were told that antibodies or T cells that attack
in Pretoria, South Africa). My the blood got ‘lost’ and again the molecules, cells, or tissues of the
The Transverse Myelitis Association Page 25
organism that produce them; the In this instance the antibodies myelitis. At present, there is no proof
following process occurs: specifically attack the spinal cord of any hereditary predisposition. All
tissues. races and families are therefore
When a germ enters a person’s vulnerable. The highest incidence is
bloodstream, white blood cells are The myelin sheaths of the nerves found amongst age groups 10 to 19
activated to arrest (via phagocytosis) become damaged or destroyed at the and 30 to 39 years.
and transport the germ to the closest point of inflammation. This prevents
lymph node. The lymph node then communication between peripheral The four classic characteristics of
produces T cells and antibodies to and central nerves, causing various Transverse myelitis are
attack and destroy the germ. The degrees of motoric and sensoric • Varying degrees of motoric loss in
antibodies attack the person’s tissues dysfunction. arms and legs
by mistake, because certain proteins • Pain (the most prominent
of the person’s tissues resemble the Characteristically, the clinical symptom), especially in the lower
protein covers of the germ. picture presents on both sides of the back, as well as sharp shooting
In the case of Transverse myelitis, the body, below the spinal cord area pains in the legs
antibodies attack the nerve tissues affected by the disease. This occurs • Sensoric changes
located in the person’s spinal cord. because the disease process involves • Loss of bladder control
The person’s own antibodies become the complete width of the spinal
a greater danger than the original cord. Most patients experience various
germ itself, because the antibodies do degrees of weakness in their legs.
not only attack and destroy the Transverse myelitis may be acute or Patients may stumble or drag one foot
original germ, but also the person’s sub-acute. During an acute attack, when they try to walk. They may also
own tissues (spinal cord nerves). the disease develops over a period of experience a sensation where one or
Messages between central and a few hours or days. The clinical both legs feel heavier than normal.
peripheral nerves are interrupted picture of a sub-acute attack may Total motoric paralysis may follow as
because of myelin damage caused by develop over a period of 1 to 2 the disease progresses, confining the
the antibodies and the person weeks. patient to a wheelchair.
becomes sick. The condition may
deteriorate and progress to paralysis if Early symptoms may include sudden Although some patients recover
the disease is not treated promptly, low back pain, loss of muscle completely, the majority suffer
because the antibodies will damage power, paresthesia in the toes and permanent damage to their spinal
the nerve cells permanently and the feet (within the first few hours up to cords, causing considerable morbidity
person will lose complete function of several weeks), pain in the legs and in their daily lives.
the bodily areas supplied by these sensoric loss with partial or total
nerves e.g., loss of function of legs motoric paralysis. Loss of sphincter The extent of pathological dysfunction
and bladder. function may also occur (loss of to areas of the body relates directly to
bladder control is common). the level of the segment affected in the
Speedy and timely administration of spinal cord.
high intravenous doses of cortisone Other symptoms and signs include
decrease inflammation and swelling muscle spasms, poor appetite, The results of my tests indicated that I
of the spinal cord by suppressing the headache, fever, a general feeling of had an absolute motoric level at T10
patient’s immune response, providing discomfort and hyperesthesia during and a strength grading of 1/5 in my
the possibility of less structural tissue changing weather conditions. Some left leg and 2/5 in my right leg. Other
damage incurred to nerve cells and a patients may also experience tests included a MRI scan and later
greater chance for recovery. respiratory problems, depending on that week a Lumbar puncture. Both
the level of spinal cord damage. investigations were indicative of
Autoimmune disease in itself is not problems.
rare; Multiple sclerosis, rheumatoid Most people only experience one
arthritis, SLE, rheumatic fever and episode of Transverse myelitis in a The diagnosis for Transverse myelitis
nephritis in children are all examples lifetime. is reached by obtaining a complete
of autoimmune diseases. Transverse medical history and performing a
myelitis is however a rare way in Children and adults, both male and complete neurological examination.
which autoimmune disease presents. female, may present with Transverse
Page 26 The Transverse Myelitis Association
Special investigations that are valu- gist, specialist physician, hema- At present there is little known about
able in assisting to make the diagnosis tologist, microbiologist and the possible etiological factors that
include, MRI (magnetic resonance nursing staff may cause Transverse myelitits to
imaging) scan of the spinal cord; • Physiotherapy, which plays a occur. The condition mostly results
Myelography (contrast medium is in- very important role during the after viral infections, followed by an
jected into the subarachnoid space recovery phase, should focus on abnormal immune reaction or it may
and X-rays are then obtained); Hema- strengthening of muscles and also occur as a result of insufficient
tological (blood) tests for HIV status improvement of coordination blood supply to certain segments of
and vitamin B12 levels; CSF and general movement. After my the spinal cord. Infective agents that
(cerebrospinal fluid) analysis to ex- treatment, I received physiother- may play a role include chicken-pox
clude high protein levels and a high apy for about 2 months. I had to (Varicella ), shingles (Herpes simplex),
white cell count. learn to walk again and had to flu virus, rubella (German measles)
do exercises to develop and re- Hepatitis A and rubeola (Measles).
Spinal cord injuries caused by trauma, gain my balance and strength. Other causes may include bacterial
tumors or abscesses and shortages of The sensation in my body and infections of the skin, middle ear and
vitamin B12 need to be excluded as limbs also started to return and I respiratory tract.
possible causes for the symptoms. made very good progress. It may also occur as a complication of
vaccination against e.g., rabies or
Idiopathic Transverse myelitis is diag- Sunday, October 15: The cortisone chicken-pox.
nosed when no specific cause can be treatment was stopped and that
identified. morning, the same pain of the previ- When Transverse myelitis follows an
ous week returned. I was re-admitted infection, the secondary immune
I was started on treatment with Soli- to hospital at about 7am and treated response causes more damage to the
Medrol, 500mg per day for 5 days, with a three-day course of cortisone. spinal cord than the primary viral or
and my condition improved dramati- bacterial infection. The secondary
cally. At this stage the doctor decided to immune response (autoimmune
start treatment for Bilharzia (a reaction) is considered to be the main
The treatment focus is mainly geared chronic condition that I was diag- cause of the symptoms, resulting in
towards providing the patient with nosed with during all the special in- the clinical picture of Transverse
symptomatic relief (the degree of vestigations that occurred) for which myelitis.
neurological dysfunction may have an I received Biltricide, 1200mg once
effect on the severity of symptoms that evening and 600mg the follow- Recovery from Transverse myelitis
experienced by the patient); ing morning. starts within 2 to 12 weeks after the
Treatment includes onset of the disease. It may however
• Corticosteroid therapy, which is October 19: I felt healthy in general prevail for up to two years. It is very
the primary form of treatment and was discharged from hospital. I unlikely that a patient will recover if
during the first weeks of the dis- continued treatment with Prednisone there is no improvement within the
ease. It decreases inflammation 60mg per day for four days, which first 3 to 6 months. One third of
and swelling of the spinal cord was reduced by 5mg every day patients with Transverse myelitis
and it also suppresses the pa- thereafter, Slow K 1 to 2 times per recover completely or partially i.e.,
tient’s immune response, but it day, Calcium Sandoz 1 per day and they can walk again and are able to
does not alter the course of the Losec. maintain bladder control. Another
disease third show moderate recovery with
• Relief of pain, on an ‘as needed’ The neurologist explained that my permanent areas of sensoric deficit on
basis autoimmune system over-reacted the skin, have problems with bladder
• Bed rest during the initial phase against another type of infection or control and present with spastic
of the disease virus, and attacked my own spinal movements. The last third do not
• The monitoring of vital signs, es- cord. No other causes could be recover and remain paralyzed and
pecially in patients with respira- found. confined to a wheelchair.
tory problems Because of all this I could not attend
• Expectant observation the last quarter of school or write my Early diagnosis and treatment with
• A multi-disciplinary approach by exams. corticosteroids mean less damage to
a team consisting of a neurolo- the myelin, an improved prognosis
The Transverse Myelitis Association Page 27
and a better chance of recovery. facilitate the regeneration and Cody’s Scuba Adventure
repair of damaged myelin Paula Lazzeri and Pauline Siegel
It is my wish that more people in the
medical profession (especially family
doctors) will in future be able to TM, we were going to require special
recognize Transverse myelitis in its instruction in different cities. We were
early stages so that the patient can be going to be traveling from different
referred to a neurologist as soon as Sandy received a letter from Cody cities. We would not be able to help
possible for immediate treatment. Unser in January 2002. Cody each other, since we both had TM; we
I would like to thank explained that her foundation was would not be able to handle all of the
sponsoring Cody’s Scuba Adventure physical needs a partner without TM
Dr Joe Terblanche (Neurologist) at Treasure Island Resort in Grand would be able to do, such as carrying
Dr Izelle Smuts (Pediatric Cayman, the British West Indies. luggage and our scuba equipment.
Neurologist) Cody said that her physical therapist, Allowing the two of us to go on
Dr Andre Nel (Prometheus Stacey Minton, was also a scuba Cody’s Scuba Adventure, represented
Healthcare) instructor, and had encouraged Cody an additional cost and more logistics
Prof. Suzanne Delport (Pediatrician) to learn to scuba dive. In the summer complications for Cody, Shelly, and
Dr Douw Greeff (Editor : Medical of 2000, Cody received her Open the organizers. And the situation was
Science) Water Scuba Certification during a further complicated by the medical
Mr At Meyer (Menlopark Science diving trip in Florida. She explained requirements. In order to receive
Academy) that it was one of the most important medical permission to train and attend
Me Saartjie Roos (Science teacher, and liberating experiences she had the scuba adventure, the level of
Lynnwood Primary School) ever had, and she wanted to share spinal cord effect had to be such that
this experience with other upper body and lung involvement was
paraplegics. In her letter to Sandy not a problem. This was not the case
Alet Uys (13) she said, for Paula who had both upper body
Headgirl 2002, Lynnwood Primary involvement and some lung issues.
School The reason I am writing to you is Shelley never flinched when Sandy
that this is a quality of life project for presented her with his great plan, and
my foundation, and you have had a she immediately said that she and
Web links : deep impact on the quality of my life. Cody would love to have us on the
We are asking 10 people who have trip and they would make everything
Google.com TRANSVERSE been very important to me to each work.
MYELITIS FACT SHEET make a selection from their hospital,
rehab facility, foundation or Pauline: Sandy called me at school
www.paralysis.org geographic region. Therefore I am after he talked to Shelley. I love the
asking you to select someone you water. My family owned a boat when
www.spinalvictory.org deem worthy and qualified – a I was a child and we spent many
medically sound paraplegic of any wonderful hours on the water during
www.themiamiproject.org age (over 12) and a partner to join the summer time. I have been on
me for this awesome adventure. All snorkeling trips many times. I even
www.myelitis.org expenses – air, lodging, food and took Sandy on a snorkeling trip on our
scuba certification – will be covered honeymoon, and Sandy does not like
www.naric.com by my foundation. the water. He is always telling me that
Jewish people only swim with fish
The day after receiving the letter, that have fins and scales. Becoming a
Areas of research include : Sandy called Shelley Unser to make scuba diver has been a lifelong dream
a special request. He told Shelley for me and when I got TM I really
thought that this dream would just
• To determine the role of the that he wanted to ask for permission
to have the two of us go on the trip. never come true. Sandy told me that I
immune system in the destruction was going on the scuba adventure. I
of myelin This was a very special favor to ask
of Cody and Shelley for a number of screamed with excitement and had a
• The development of strategies to permanent smile fixed on my face for
reasons. First, since both of us have
Page 28 The Transverse Myelitis Association
weeks. twenty-five laps in the pool!
Paula: My instructor’s name was
Paula: Sandy called me and explained Craig Willemsen. He owns a scuba Cody’s scuba adventure began on
that he had received this wonderful shop in Bellevue, WA not far from August 8th and ran through August
honor from Cody and was being work and home. We began snorkel- 12th.
asked to select a paraplegic and a ing lessons about two months prior
partner to go on a scuba trip. He said to the trip. We worked in a local It was the most incredible time. We
that he wanted for me to go with pool that was warmer than the aver- met the most wonderful people. There
Pauline. I accepted this gracious offer age indoor pool. It was gradual pro- were eleven paraplegics on the trip
and then had immediate reservations. gress with each time floating around with their companions and their scuba
Sandy and I began an email exchange the pool a little longer each lesson. I instructors and they came from all
that lasted for a couple days. As I am went from holding onto my instruc- over the country. We were the only
impacted higher on my spinal cord, I tor’s hand in the shallow end in fear people with TM – and Cody. The
am not comfortable around the water. to floating around the deep end by other paraplegics had a myriad of
Sandy assured me that I would be in myself for 30 minutes at a time. I spinal cord injuries and diseases. Each
the water with twenty-seven guys who also learned how to clear water from of the participants had the most
looked like the Chippendales. I told my mask and signals to flag an in- incredible stories; and their
Sandy that it would be very difficult structor. participation in Cody’s Adventure was
for me to travel across the country on so inspirational for everyone.
my own and to go through all of the Pauline: Stacy found a scuba school
airports and flight changes. Sandy that was fairly close to my home and Pauline: Cody’s adventure was the
explained to me how he arranges was able to arrange a wonderful most amazing experience. I met such
flights for Pauline, and assured me instructor who worked with me, Joey incredible people; the participants and
that I could be accommodated; that Jacques. All of the instructors were the instructors were such awesome
traveling would be okay. And I had required to be certified to work with people. The dives were really beyond
concerns about the bowel and bladder and teach people from the disability description. Our first dive was off one
issues; how was I going to handle that community. We went through weeks of the beaches near our hotel. The
in the ocean? Sandy responded that of intensive training. I had to learn next dive was in 100 feet of water off
the good news was that they probably how to use all of the equipment and I of a boat. We also had a dive around a
wouldn’t ask everyone to get out of had to learn how to perform various sunken ship. The last dive was in sting
the ocean to clean up an accident and procedures under water. I was taken ray city. This was a dream come true
that it would probably keep all of the through a check-list of requirements for me. And to watch Paula’s transfor-
sharks away. It all seemed in order to receive my certification. mation was really great. When she
overwhelming and a little frightening, Then I had to pass a written exam. first went into the water, she was
but it was all too exciting not to try. The purpose of the training was that really cautious. By the end of the trip,
So, I decided that I would go. we were going to be taken through she had become a fish. Paula was
all of the requirements for scuba amazing.
The first step was for us to receive certification before we left for the
medical permission to get the scuba Caymans. We would perform our Paula: Pauline and I had the BEST
training and to go on the open water open water dives in the Caymans to time. Pauline is quite the diver. I was
dives. Pauline received permission. complete our certification. I had as inspired by every person there. There
Paula was only given permission to my goal to receive the full scuba were 11 disabled participants. I was
participate in snorkeling. Stacey certification. In order to do so, I was the only snorkeler and all the others
Minton, Cody’s scuba instructor and going to have to swim twenty-five were divers. After watching them
the adventure organizer, arranged for laps in the pool. This seemed the scuba dive I really wanted to try. I am
us to start instruction with teachers in most daunting of the requirements. I hoping to have a respiratory
Seattle and Columbus. Cody’s trained for months in order to build evaluation soon to see if I can dive. If
foundation was able to get all of the up the stamina to complete twenty- I get a green light, I’ve been told I
scuba gear donated and it was five laps. During one of my classes, could be a participant again next year;
distributed to all of the participants Joey decided that I was ready to try, as a diver. That would be great. The
from all over the country. Each and he asked me to do the laps. I participants, volunteers, and
participant began working with their wasn’t sure I was ready, but I went instructors were all wonderful people.
instructors in their respective cities. ahead and tried. I completed my They had tons of media folks there to
The Transverse Myelitis Association Page 29
capture the whole event. Bob Martin has chosen not to focus on herself. particularly since they’ve seen her
is a reporter from the CBS affiliate in Cody has an amazing sensitivity, through tough times.
Albuquerque. Bob was on this compassion and maturity. She wants
adventure taking video footage of our to help others. She wants to share Four years ago – “Dec. 2, 1996. I'll
every move both above and below the her passion for life. She had a great never forget it,” Woods says - she
water. We were all sent a 30 minute idea and she had the energy and arrived to work at 8:30 a.m. at her
video of our awesome trip. Bob also enthusiasm to transform her great post office job. By 2 p.m., Woods was
created a four-minute segment of the idea into a reality. Paula and I were paralyzed from the rib cage down.
experience that ended up on the grateful recipients of her efforts. Supervisors at work drove her home.
American Stories on CNN and Speed What an incredible experience.
Week. He made mention of TM Thank you, Cody. Doctors discovered Woods had been
several times. This was a perfect way This article first appeared in The stricken with transverse myelitis, a
to raise awareness about TM. Union newspaper. The Nevada
County Publishing Company has SPD Postal Worker Unsinkable
We ate and drank well. The marine granted The Transverse Myelitis The Union, Western Nevada
life and water was amazing. On Association the right to reprint this County California
Sunday we got to swim with sting wonderful article about Mary Woods February 11, 2002
rays. They are the most graceful and in our Newsletter. Grace Karpa
friendly marine animal there. I
watched Pauline feed squid to a very Mary Woods enlivens the days of
large sting ray. We saw a ship wreck postal customers at Grass Valley’s first cousin to multiple sclerosis. The
at the bottom of one reef, too. SPD Market. And she only had to disease is a neurological syndrome
leave retirement, fight cancer and caused by inflammation of the spinal
Pauline and I missed one of our recover from a paralyzing illness to cord, and often leaves people
connecting flights on the way home. do it. paralyzed.
Pauline had to spend the night in
Chicago. I was on a plane with Cody, Woods, 58, came back from Woods was confined to a wheelchair
her siblings, and Bob Martin the retirement from the U.S. Post Office at one point and was offered disability
videographer. We spent the night in to work at the contract station in the compensation, which she declined.
Dallas. Pauline and I would like to grocery store.
thank Bob for helping us with the She recalls sitting on her back deck
flight arrangements on the way home. “I love the work. I love the overlooking Highway 49, thinking
We greatly appreciated your help and customers,” Woods said. “how fortunate people were to be able
concern. to get in a car and drive.”
The feeling’s mutual, if you stop
Paula: Cody’s foundation has tried to people waiting in line. “I thought, I’m gonna do that
focus on quality of life issues. She has someday,” Woods said.
impacted the quality of life of so “She’s a worker,” said customer
many people. She has certainly im- Ruth Smith of Alta Sierra. “On the With the help of physical therapy,
pacted the quality of my life. I can ball always.” Woods went back to work gradually
only hope that I pass my respiratory in March the following year, starting
exam with flying colors. To be able to Sue Martin of Grass Valley said she back at two hours a day. Within nine
dive like Pauline and all my new comes to the contract station in the months, Woods was back to working
friends would be a dream come true. popular market because “it’s an eight-hour day.
Thank you, Cody! friendlier and faster.”
“The post office was really cool,”
Pauline: I will never forget my first Woods wears an Independent Woods recalled. “SPD was good to
scuba trip. Cody is such an amazing Grocers Association name tag that me during my recovery. SPD’s just
person. She has her own life and her declares SPD employees to be been awesome.”
own challenges to deal with; she “Hometown Proud.”
could be focused on herself and her Although she’s back at work and out
own needs. And no one would judge And proud she is to work both for of a wheelchair, Woods doesn’t want
her for just taking care of herself. She the post office and in SPD Market, to raise hopes for sufferers that
Page 30 The Transverse Myelitis Association
recovery is ever 100 percent. Mauro has translated the ciation’s first Children’s and Family
membership form on the web site Workshop. This opportunity allowed
Doctors don’t have a clue how much into German. If you can perform for parents, children and young adults
you'’l recover, Woods warns. “But it’s translations for us, we would be living with Transverse Myelitis to
not a death sentence,” she said. grateful for your help. We are learn more about many issues ranging
interested in having the main page of from medical, to educational, to emo-
“I look back on it now, I did pretty the web site translated into languages tional. During the program young
damn good, but I fatigue easily,” she that are not currently represented. If children were able to listen to stories
said philosophically. “I’ll probably you would like to check the text that and participate in arts and crafts. How-
never be a rock climber.” is being translated, just click on one ever, the part of the workshop that im-
of the flags located on the main page. pacted me personally the most was the
Woods moved to Grass Valley in July chance to meet other teenagers and
1996 to join her children, Margie We would also like to have the young adults with similar experiences.
Leatherman, 40, of Grass Valley; brochure translated. Again, you can
Michelle Woods, 39, of Roseville; click on the brochure from our web Through discussions and activities we
Don Woods, 37, of Grass Valley, site to find the text that needs to be learned how each of our experiences
another cancer survivor, and Dan translated. Finally, if you can with Transverse Myelitis was
Woods, 33, of Grass Valley. Her eight provide us with the text for the different, as well as the similarities we
grandchildren range in age from nine membership form in your native shared. Despite the fact that TM had
months to 23 years old. language, that would be a impacted each of us differently we all
tremendous help for those people shared a common bond. The idea that
Most of her 30 years with the post who find us and do not speak fluent I was not the only one going through
office were spent in Southern English. this reassured me. Additionally, as
California towns of San Gabriel, one of the teenagers with TM, it gave
Upland, Ontario and Claremont. She So much of what we do in the TMA me a chance to see the effect the
misses the restaurants and beaches, is focused on helping people to not disease and its aftermath have on
but said she didn’t know “places like feel so isolated by their experiences siblings.
Grass Valley existed.” with TM. By offering this
information to a new TMA member The workshop allowed the parents to
“I’m really happy here,” Woods said. in their native language, we believe attend presentations by expert
that we are going to help them to feel physicians, educators, and adults who
more significantly welcomed into had contracted TM as children.
our community. Please send your Young children went to a science
The TMA has members from more text translations to Jim Lubin: museum and to the Columbus Zoo,
than sixty countries around the world. jlubin@myelitis.org listened to stories, watched movies,
Most of the people who find us from and enjoyed arts and crafts while the
our web site speak some English. Thank you for your help on this presentations were in session. The
Many are quite fluent in English. Due teenagers, including me, spent the
to the volume of information we have Translations days enjoying sailing, kayaking,
offered on our web site and the Providing Assistance for swimming, and other activities while
frequent changes we make to the getting to know each other. In
content, we are not going to be able to
our International Members defiance of the lack of wind, we were
offer translations of the entire site in able to sail and I can say without
different languages. We do, however, hesitation that it was my favorite
believe that we can assist people who recreational activity. The feeling I had
are not entirely fluent in English, if we important project. while being on the water, away from
can offer them a few important pages my wheelchair and without
of information in their native limitations, was incomparable.
language.
Although the activities we participated
Yvonne Lugo has translated the TMA in gave us a chance to have fun while
brochure into Spanish and we have This past July I was privileged to at- learning about one another, the
posted it on the web site. Ursula tend The Transverse Myelitis Asso- discussion amongst the teens left the
The Transverse Myelitis Association Page 31

The TMA Children’s and Family Workshop found a minor inflammation at the C-
level that we hadn’t heard of before
(Adam’s diagnosis was just at T6 and
below), and which explained a few
The Workshop: A Teen’s actually cost us. And so we did. things to us. And, of course, we were
Perspective Some really nice people helped us happy that he told us that Adam
Eve Hampton find the money for the flight and the should have quite a good prognosis!
stay at the hotel, and the air line
company also let us have a discount Adam spent the days at COSI and at
most lasting impression on me. because of Adam’s story. And so we the ZOO, and he quickly fell in love
Those of us with TM were able to were able to go! with his special person, Hanni, who
share our adventures in the world of
did a great job taking care of him.
paralysis, including how we felt It was to be a great weekend for all Thank you, Hanni! He also enjoyed
initially and how our feelings have three of us. Like many other parents the swimming pool, and kept asking
changed since. For me, as a teenager (and kids) we had the experience that for it for several days when we had
with TM with a teenage brother who for the first time, people didn’t look returned back home. And he loved
has had to adjust, it was great to hear confused when hearing the word of Maureen’s songs. We hope we’ll be
stories from siblings. Their words Transverse Myelitis, and for the first able to go back some other time and
changed the way I felt. I had no idea time, we saw other kids and adults meet up with all his and our new
how much of an impact TM could living with the same problems as us. friends.
have on a brother’s or sister’s life. A lot of feelings went through us
Looking back on my own experience, these days, both of joy seeing all Finally, we would like to thank Sandy
I can see how much time and these cool kids coping so well with for being such a great, loving person,
attention was devoted to me, their disabilities, of sadness realizing and for doing such a great job with
especially during my initial hospital that our son is a child with ’special this workshop! (and the food was
stay. I can only imagine what my needs’ and probably will continue to great too!)
brother was going through. He must be, of anger thinking about how
have felt so lost amongst the unfair this disease is, of relief Greeting to all the families that we
confusion. acknowledging that Adam is very met in Ohio.
lucky compared to what he could
I hope that I will have a chance to see have been, etc, etc. We are interested in being in touch
the people who changed my life at the
with TMA members in Scandinavia.
next Transverse Myelitis The whole workshop was packed Please feel free to reach us. We
Association’s Children’s and Family with information, and we had some would be pleased to share information
Workshop. new points of view that we have and support.
Adam was hit by TM on June 15th brought home to discuss with our
2001 when he was 13 months old. He neurologist and our PT. Fortunately, Adam, Mette and Thomas Nybo
was paralysed from the neck down, we were also confirmed that we have Hillerodgade 175 2. TH
but has made a lot of progress and is received a very good treatment and Copenhagen
now able to walk with a walker. He’s rehabilitation in Denmark. We were 2400
still quite spastic, and has some very happy that the participating Denmark
bladder problems. His arms and hands specialists stayed at the hotel all 45 38162856
are fine. weekend, so that everybody had a rommba@hotmail.com
chance to discuss their special needs
When we first heard about the with whomever they wanted to. A
Children’s and Family Workshop in
The Workshop: A Visit from
Columbus, Ohio last winter, we were
Denmark The presentations at the Children’s
sure that we would never afford to go
Mette and Thomas Nybo and Family Workshop were excellent.
there, but were looking forward to
Parents were provided with critically
seeing the follow-ups on the internet.
important information on a wide range
Fortunately, Adam’s aunt encouraged special thank you to Doctor Kerr of subjects from research on TM to
us to try and do some fundraising and who took the time to evaluate symptom treatment to family issues.
to find out how much it would Adam’s MRIs with us and actually We have prepared a ten-video set of
Page 32 The Transverse Myelitis Association
the complete workshop presentations TMA Children’s and Family have included these sessions on the
for anyone who would like to order Workshop: Video Orders and tape sets because we all agreed,
the tapes. If you would like to review Streaming Video on the Web including the parents who
the program and the contents of the participated, that this was important
tape sets, please refer to the program information to share with other
agenda on the Children’s and Family the proper amount and please write families who have a child with TM. It
Workshop page on our web site. The the check for the amount in US would not, however, be appropriate to
video sets follow the presentation dollars. You are going to need to include this information on our web
schedule on the program agenda. The determine the conversion rate to site.
tapes cover the entire program, from figure the correct amount. Please
Thursday evening until Sunday make your check payable to The If you have any questions about the
afternoon; more than twenty hours of Transverse Myelitis Association, tape orders, you can reach Paula by
information. The tapes are worth it and please write Children’s email or phone at: plazzeri@aol.com
just to see Pauline perform the thirty- Workshop Tapes on the check. You or (425)883-7914.
two step tai chi sword form. must include the address where you
want the tapes shipped and it is We would like to thank Geoffrey Cut-
The tapes have been priced to recover imperative that you include complete ler and Matthew Ball of Family
the costs of copying the tapes, the address information and please write Treasures for taping the TMA Chil-
packing materials and shipping. The legibly. If you have an email address, dren’s and Family Workshop presen-
differential price represents the please include it with your tations. The donation of their time
shipping rates to various countries information in the event Paula needs and expertise is greatly appreciated. I
around the world from Seattle. The to reach you. If you live in the US, would also like to extend our appre-
price identified includes your total please also include your telephone ciation to Chris and Michelle Powell
cost, including the tapes, packing number. Mail your order and check of Tullyvision for taking on the job of
materials and shipping. There is no to: editing and reproducing the tape sets.
handling fee; Paula said that even if They took on the job on very short
she holds a box of tapes all day, she Paula Lazzeri notice and they have made a very gen-
will hold them for free. 10105 167th Place NE erous donation to the TMA to help
Redmond, WA 98052 cover the cost of some of their valu-
If you live in the United States, the USA able work.
price of the tape set is: $75.
If you live in Canada, the price is: You will be able to view the The Children’s and Family Workshop
$90. workshop presentations on the TMA that was held in Columbus this past
If you live anywhere in the European web site. Jim is in the process of July only reinforced for me the
Union, the price is: $100. preparing the tapes for streaming importance of providing parents of
If you live anywhere else in the video. You can view the taped children with TM the opportunity for
world, the price is $110. presentations by navigating to the networking. Parents and the children
program agenda on the Children’s need the opportunity to share
All of the tapes are in VHS format. If and Family Workshop page. To view information and to provide each other
you live in a country that uses PAL a presentation, click on the identified with support. For the past few years,
format for video tapes, you are going link and the video will auto-load into I have been attempting to organize
to need to have the tapes converted RealPlayer. If you do not have and publish a TMA Children’s and
after you receive them. We priced a RealPlayer loaded on your computer, Family Network Directory to make
converted PAL set and the lowest cost Jim has provided you a link to this networking possible. In spite of
we were able to find was $250. We download a free version of the my best efforts, I have not been able
thought the price for you would be program. to find the time to make it happen.
prohibitive, and are counting on your
being able to convert them such that There are two discussion sessions Well, I am so pleased to announce
the total cost is still under $250. We from the workshop that will not that it is finally going to happen.
are sorry for the inconvenience. appear as streaming video on the web Mary Troup has volunteered to
page. These were very informative organize the Children’s and Family
You may order the sets from Paula question and answer sessions that Network Directory. The TMA will
Lazzeri. Please write your check for included personal information. We publish and mail the directory as soon
The Transverse Myelitis Association Page 33
as Mary completes her work. In order with medical problems in developing
to protect the children in the TM We were in need of purchasing a areas where resources might not be
community, we will not mail a van lift and we needed help. We available. Variety Children's Lifeline
directory to anyone who does not were referred to Variety – The has been working since 1982 to
have their own child listed in the Children’s Charity, by one of provide medical assistance to children
directory. Your child should be Maria’s therapists. We received throughout the world. The primary
eighteen years old or younger to be great help from this organization. focus is open-heart surgery; however,
included in the directory. The people were very friendly. no diagnosis is ignored if the need is
Before being referred to Variety, we great and the resources to help are
In order to have your child and your had never heard of this organization. available. Variety Children's Lifeline
family listed in the directory, please We believe that other families with has two methods for serving children
send your information to Mary Troup children with TM might be helped who need help. The Lifeline program
either by email or through the postal by Variety. They are located across sponsors teams of medical personnel
service: the United States and in countries throughout each year to go to
around the world.
Mary Troup Help for Children in the United
1734 McAdams Variety — The Children's Charity is States and Around the World:
Memphis, TN 38108 an international organization that www.usvariety.org
work7days@aol.com has been helping children since the Morgan and Pam Hoge
1920s. Variety's mission is to
Please send the following information provide life-saving and life-
to Mary for inclusion in the directory: enriching assistance to children
challenged by physical and mental developing countries where the
Parent’s Names disabilities, poverty, abuse, and medical community is ill equipped to
Street Address neglect. handle very sick children. The
City, State/Province program also sponsors children from
Country, Zip or Postal Code Variety — The Children's Charity developing countries to come to the
Home and Work Phone and Fax assists at-risk children by providing United States for more extensive,
Parent’s Email Address medical treatment, artificial limbs complex surgical procedures. Each
Child’s Name and special equipment for afflicted year, over 550 children undergo life-
Child’s Email Address children to help them become more saving operations sponsored by
Child’s Date of Birth mobile. They support local hospital Variety Children's Lifeline.
Child’s Age at Onset of TM and major university research and
Year of Onset of TM they fund crisis centers, hotlines, Variety has 51 chapters in 13
Spinal Cord Level of Effect and therapy. Funds are allocated to countries focusing on providing
Please also remember to send any various children's agencies and assistance for the treatment and care
changes in your information to Mary camps to aid disabled, of disabled and disadvantaged
Troup as we will try to update the disadvantaged, abused and/or children. All of the Variety chapters
directory annually as we do with the neglected kids, as well as to children can be found on their web site. If you
general TMA Directory. who need medical services or are in need of assistance, please
TMA Children’s and equipment such as wheelchairs, leg contact the chapter that is located
braces, augmentative speech closest to your community. We hope
Family Network Directory equipment, hearing aids and all that you find this information helpful.
types of prostheses. Working with
the Ford Motor Company, Variety Variety — The Children’s Charity
provides passenger vans, known as 8455 Beverly Boulevard Suite 501
We are very appreciative for Mary’s Sunshine Coaches, to agencies and Los Angeles, CA 90048
willingness to take on this important individuals to transport children Tel: (323) 852-1300
project. Please send her this throughout their communities. Toll Free: (888) 852-1300
information as quickly as possible so Fax: (323) 852-9677
that we can finally have the directory Variety has an international program E-mail: info@usvariety.org
published and mailed to the families called Variety Children's Lifeline STARBRIGHT World™ is a private
in our TM community. that is designed to assist children online computer network designed for
Page 34 The Transverse Myelitis Association
seriously and chronically ill children this site. For more information on winter and summer program. The
and teens which is available in almost this program please contact ASC touts family and group vacations
100 children’s hospitals across North STARBRIGHT at: as their specialty. The website is
America. Children are able to make extensive, and the summer program
valuable connections with peers who 800-315-2580 offers overnight camping trips,
are also experiencing the challenges SBWhome@starbright.org handcycling, four-wheeled downhill
of a serious illness. The challenges for http://www.starbright.org mountain bikes, whitewater rafting
these children do not stop when they and canoeing for persons with upper
leave the hospital; they are often Our family of four [Jim, Arlene, body or lower body limitations. We
unable to attend school and are in and Scott (16 years) and Dana (TM at 10 were attracted to the location and its
out of the hospital for outpatient care, emphasis on family participation.
missing out on the day-to-day STARBRIGHT World™ Kids
friendships at school. Connecting to Kids: Now We flew United Airlines from San
available for children in the Diego to Denver, then transferred to a
With the help of America Online ® United States who have United Express to Gunnison and
STARBRIGHT has expanded access Transverse Myelitis rented a car. Like most ski towns,
to STARBRIGHT World into a there is a free shuttle year-round that
child’s home for FREE. The program operates from the ASC and ski area to
is still private and secure and solely years T10 level; now 11 years)] took Crested Butte. The ASC charged $75
used by seriously and chronically ill a family vacation to Colorado after for each half-day Dana participated,
children who’ve been approved to attending the TMA Children’s and which included at least one instructor
access the system. STARBRIGHT Family Workshop in Columbus in from the ASC and all equipment. The
World is available to children living July, 2002. We love the outdoors, total cost to our family for 3 half-days
in the United States and between the and this was our first big family of mountain biking, rafting, and rock-
ages of 7 and 18. outdoor trip since Dana became ill. climbing was $450. This included
I wanted the entire family to transportation to the activity sites by
The child will be able to exchange participate in as many outdoor van, and we were picked up at our
email and instant messages with other adventures as possible together door each morning.
STARBRIGHT World users who are while giving Scott something
at home or in a hospital, and can join exciting and enjoyable to do. We Words cannot describe how
STARBRIGHT World chats. In also wanted Dana to build up self-
addition, the child will have access to confidence while enjoying outside A Great Family Vacation at the
the games and Web sites that have activities, and empower her by Adaptive Sports Center at
been selected by STARBRIGHT. teaching her new activities and Crested Butte, Colorado
skills. Dana has regained some use Dana, Scott, Arlene and Jim
STARBRIGHT is aware that not all of her legs and can walk short Mathewson
children have access to a computer at distances with a cane, but for longer
home so, we have teamed up with the distances she requires a wheelchair.
people of Dell Computers to support wonderful it felt to be outdoors and to
those families without a computer by I stumbled across the Adaptive see the joy on my family’s faces as
offering a computer scholarship Sports Center at Crested Butte we played in Crested Butte with the
opportunity. (ASC) while reading a magazine. help of the ASC. Dana and Scott both
Crested Butte is a small town wrote down their impressions of those
We have set up a link to located in western Colorado in the three days, and I think their
STARBRIGHT World from the main Rockies, literally just South over the excitement and happiness shines
page of our web site. This will take mountains from Aspen; but the road through their words.
you to the STARBRIGHT homepage connecting the towns is winding,
where you can take a virtual tour of unpaved, and impassible during DANA: The most fun days were
STARBRIGHT World and learn more winter. Most people get there when I spent them at the Crested
about the program. All of the coming from the South via Butte Adaptive Sports Center. My
information you will need to apply to Gunnison on Highway 50, a distance instructor’s names were Hans
become a member, as well as the of 30 miles. This program has been Christiansen and Chris Read. The
necessary forms, are available from in place for 14 years, and there is a first day I did mountain biking on a
The Transverse Myelitis Association Page 35
four-wheel bike. It had shocks in the Sports Center Office along the road. my own pace. I wasn’t held down by
front almost like a car. The bike was Back at the office, Dana tried out a the abilities of my sister. This is a
pulled by gravity so there was no special tandem bike that allowed her great activity for all members of the
pedaling needed by hand or foot. We to stop pedaling if she got tired. family.
biked down a mountain called While she tried that out, I was able
Snodgrass. Very funny name, don’t to fiddle around with my own bike. DANA: Day three was the most fun
you think? It was awesome! I biked I was going down stairs, jumping up for me. We did whitewater rafting on
down that hill so fast that sometimes I curbs, and bunny hopping in the air. the Taylor River in the morning.
could smell burning rubber from my This day was the best mountain bike Hans came with us again along with a
tires. We did the run two times. We experience with my family yet! volunteer named Brendan. He was
decided to bike back all the way to very nice. First, we went to the
the Adaptive Sports Center on the DANA: Day two was Rock rafting store to get some spray
road. That was fun too! When we Climbing. Hans came, but Chris slickers. Once we were suited up, we
got back, Hans and Chris brought out didn’t. The rock climbing got in a bus with a different company
a tandem bike for me to try. The back instructor’s name was Casey. We than the ASC. It was called the Three
pedal is independent from the front, drove to a real rock cliff by the river, Rivers Rafting Company. When we
so one person can stop pedaling and about two stories high. First, we had got there, one of the instructors gave a
the other could power the whole bike. to be fitted into shoes that were safety speech so we knew what to do
Chris rode with me, and I did well on almost two sizes smaller than our if something happened. Then we got
this. It felt great to be able to ride a regular sizes. This was to enable into the raft. Our instructor’s name
regular bike again. It really can make more ability for everyone to climb. was Dave. First he taught us how to
a difference in someone’s life to feel If the shoe is bigger than your foot use the paddles. Then, we were off!
confident that they can do something like regular shoes, it might not be We went into rapids so big that Dave
just like any other walking person. able to grip onto the tiny footholds. and Hans had to hold on to me for fear
The soles of the shoes were that I might fall out. Was it fun or
SCOTT: Crested Butte is located in a completely flat, but the bottom what? I say a big YES!!!!!! After the
glacial valley. Large mountains loom gripped to everything! It was even rafting trip we went to horseback
on the outsides of the valley, and you hard to walk over the little rocks to riding! YAY!!! I love horses. We
feel in a secluded place, away from get to the wall! There were several went up Snodgrass again, but it was
all the hustle and bustle of the town. trails to get up. I tried the first one, on a different side. I thought it was
Our family engaged in activities with which was obviously the easiest. much prettier. My horse’s name was
the ASC during the morning hours so You had to climb in a crevice, and it Taylor. The leader of our group told
that it was nice and cool and was hard. But very fun! Once you me that he doesn’t go fast unless you
afternoon showers would not rain on were at the top, you got to either kick him. She said that he knows how
us. Dana was outfitted with a full- ring a cow-bell, or a horn! to, but also knows how to get away
suspension mountain bike that had with it. He really responded to me
four wheels. It was like a miniature SCOTT: The people there had though. I got him to trot and keep up
car without the engine. The rest of helmets, shoes, and harnesses in with the others. The leader said I was
the family was fitted with Kona dual order to protect us when we a natural! The trip lasted an hour and
suspension bikes. After Dana was climbed. The shoes they gave us a half. It started to rain just when we
able to get the hang of steering her were specially designed for rock started to come back. We got
bike, we packed all of the bikes into climbing. The soles were made of drenched. Good thing I was wearing a
the van and went to the top. Since sticky rubber in order to stick onto a hooded jacket and pants!
I’ve mountain biked before, I stayed small foothold when needed. Dana
behind a few minutes so that I could was assisted up the face by a pulley SCOTT: Our guide happened to be a
get a large stretch before heading system rigged together by the people retired Navy Seal named Dave. Dana
down the trail. It was great fun. I at the Adaptive Sports Center. The had no problems with falling out, as
was able to do bunny hops and do tail face had many climbing routes for you can imagine. I sat in the front.
slides down the mountain. Little all types of climbers. I went up He would tell us “Forward 2!!!” or
ramps were in place along the trail so different ways, and I was able to do “Left Side forward 3, Right Side back
I was able to get major air off of the second hardest face before I got 3!” as we maneuvered our boat down
them. After going up twice, we tired. Today was the most fun day the river. It was very exciting to listen
decided to ride back to the Adaptive for me because I was able to go at to our guide and pay attention to what
Page 36 The Transverse Myelitis Association
was waiting for us downstream. fort him. He kept on crying, even
Dana lost her paddle once and we had while sleeping, for five hours. In the
to go retrieve it for her. We took a morning, we called a doctor. I
break halfway down the river to give thought his stomach ached because of
a few people breathers. By the time The Transverse Myelitis Association the fruit, but he acted very differently
we had finished and gotten back into is a proud member of the National than ever before and was very dull.
the truck, all of us were very tired. Family Caregivers Association The doctor said that his belly was
This was a great way for our family to (NFCA). We have established a link hard, and that he would probably have
work together to achieve something to the NFCA from the bottom of the diarrhea later on. He never did. In-
fun and exciting. main page of our web site. We stead, he was very sleepy. During the
support NFCA’s effort to “Share the day, he had a fever. Then the paraly-
I would truly recommend the Caring” and acknowledge National sis started and without us realizing it.
Adaptive Sports Center at Crested Family Caregivers Month as an We just thought that he was like that
Butte, CO. It provides families with opportunity to provide community- when ill, because he had never had a
opportunities to have fun together and based activities in support of family
do things together that normally caregivers. NFC Month is designed
would seem out of the question. Not to raise awareness that will help
only was the equipment state of the people recognize and appreciate the
art, but the kindness and hospitality caregivers’ vital role. The goal is to
that they showed was unbelievable. build caregiver self-esteem, expand
Our family is looking forward to caregiver self-awareness and teach
going back to Crested Butte during caregivers to become their own
the winter season to take advantage of advocates.
the ASC’s winter sports program. I Please join us in celebrating National
would rate this a 10 out of 10 because Family Caregivers Month. Please
all members of the family were able contact the NFCA for information fever before! He was very tired but
to do things together as a family at a regarding caregiver issues, including happy enough. He had no loss of ap-
pace that was comfortable for each effective ways for communicating petite, but was so weak that we had to
person. with your physicians. feed him and even hold his head. His
hands and feet were swollen and hot,
The ASC offers financial assistance Call NFCA at 1-800-896-3650 or but still, as we had never had a sick
through a scholarship program. We visit www.nfcacares.org child before, we thought it to be nor-
stayed at the Sheraton for $99/night Adam was a very healthy boy during mal with a fever. We tried to call a
as the ASC suggested, because it is his first year. He started walking doctor, but everyone was occupied,
approximately a block away. There when he was 11 months old and was and it didn't really seem to us to be
are condo’s available for a bit more very strong in all ways. very urgent.
per night. My only regret was not
having time for fishing, because the On June 14th 2001, Adam fell in his During the following night, Adam’s
fly fishing there is great. As Scott pram while he was sleeping. He fell temperature rose and we called a doc-
said, we had a wonderful time, and on his back, just where the inflam- tor. He sent us to the hospital as he
we plan to go back during winter. mation was later discovered. At didn't understand his weakness and
Check the place out! Their website first, he was screaming, but he was couldn't find any reason. Then every-
address is www.adaptivesports.org; easy to calm down, and walked thing went fast. He was checked for
Program Office phone is 970-349- about a little before going back to meningitis because his neck was stiff.
2296. Address: P.O. Box 1639, sleep. For the rest of the day, nothing In the morning, a doctor thought of
Crested Butte, CO 81224. happened. He was happy and played Guillain Barré syndrome. We went
around. In the evening, he went to a into Intensive Care, because Adam
picnic with his father where he ate a started having difficulties breathing.
lot of fruit. When they came home, Fortunately, he didn't have to be put
he climbed the stairs three floors. on a respirator. He just managed to
breathe, had a little bit of oxygen to
At midnight, 15 hours after his fall, help him, but couldn’t cough or
he started crying. We couldn't com- sneeze properly. The following three
The Transverse Myelitis Association Page 37

In Their Own Words We’re looking forward to coming to


In each issue of the newsletter, we will bring you a column that presents the the TMA Children’s and Family’s
experiences of our members. Their stories are presented In Their Own workshop in Columbus this summer.
Words by way of letters they have sent us. We are most appreciative of their It’ll be our first time in the United
willingness to share their very personal stories. It is our hope that through States, and it’ll be a great experience
the sharing of these experiences, we will all learn something about each other in every way. We are wondering how
and about ourselves. It is our hope that the stories will help us all realize that Adam will respond to English since
we are not alone. You may submit your stories by sending them either by e- he doesn’t understand a single word.
mail or through the postal service to Sandy Siegel.
Mette and Thomas Nybo
Copenhagen, Denmark
Adam Onset 13 Months so far his urine is all right. We give
Copenhagen, Denmark him a homoeopathic diureticum and Cole was just like any other six-
cranberry juice. month-old boy, just learning to roll
over, move around and beginning to
days, he had immunoglobulin IV Well, back with the neurologist, he sit up on his own. That all changed
(other people's antibodies) which ap- explained to us a little about TM. on Thursday, March 15th 2001. Cole
parently helped very much. He soon We were shocked to hear that the was sitting on the floor playing when
regained some feeling in his arms. outcome was much worse than first his back seemed to give out and he
His hands were very sore and still reckoned with GBS, and felt very collapsed. When my wife, Wendy,
swollen, but within a week, he was angry and disappointed with the hos- picked him up, he began to scream in
able to pick up raisins and drink by pitals. Suddenly, we had to cope agony and became very weak and
himself. His eyelids were affected as with the idea of maybe having a dis- limp. We took him to the nearest
well and stayed half-closed for about abled child. What is good is that it clinic where the doctor barely looked
one month. only changed things in our heads. at him and told us he was fine and to
When looking at Adam, we’re al- take him home.
When we told the doctors about the ways happy and optimistic because
fall, Adam had a MRI which showed he is doing so well. Cole became even weaker over the
white illuminations around T6. The next few hours and my wife took him
doctors didn’t believe that his fall had In August, Adam started going to a to the Royal Victoria Hospital in
anything to do with him being para- kindergarten with normal kids, and Barrie, Ontario, while I stayed home
lysed. They kept the diagnosis this he loves it! He was able to drag with our other two children, Brian
far, but apparently a neurophysiologi- himself around, and so they ac- (10) and Bailey (3).
cal test made them change it to TM. cepted to have him there without
We don’t really know why, because any extra help. In January, we could At the hospital, Cole could barely
we went home, and the doctors forgot see though that he needed some help move and his breathing was very
to tell us about this new diagnosis. to do things like other children, and laboured. His legs began to turn red
We started physical therapy right he now has an extra pedagogue and purple (modeled) and swollen.
away and are still seeing a therapist every morning taking care of his Wendy noticed that his bladder was
once a week. special needs. She’s great! enlarged and very hard. He was
retaining urine and had to be
Due to the summer holidays, we did- His legs are still weak and spastic, catheterized.
n’t see a neurologist until almost two but it’s getting better all the time.
months later. We finally insisted on He crawls without difficulty, is able I joined my wife and Cole the next
seeing a neurologist because Adam to stand and has even started walk- morning and found it hard to get
developed a bad urinary tract infec- ing a little with a “gator.” His bal- anyone to listen to what had
tion. Nobody had told us to watch out ance is getting better, as well. On happened. They made us feel guilty,
for infections. As he’s paralysed, he April 1st, our neurologist was very like we had done something to him.
hasn’t felt any pain, so we only found optimistic, and assured us that Adam The more we insisted they
out because we went to a homoeo- will be able to walk and maybe even concentrate on checking out his back,
path. He had an antibiotic treatment to run! What a great relief! Adam is the more suspicious they became.
for five days which cleared it out, and a real fighter and always very happy.
Page 38 The Transverse Myelitis Association
Finally, after a shift change, a new My wife and I joined the Transverse wheelchairs. We are waiting to try
nurse and doctor listened to our story Myelitis Association. We discovered the “Rabbit.” It is like a stander with
and began some action. Cole had a many things about TM. We talked wheelechair wheels so he can get
cat scan, ultra sound and a spinal tap. with other parents of children with around the house. Cole wants to be
It was Saturday morning by the time TM and people of all ages from all mobile.
any results came back and by then over the world. We are so lucky to
Cole was in very bad shape. The first have other people to turn to for their Cole was catheterized twice a day for
diagnosis was Spinal Meningitis and help and support. a while. We no longer have to do
he was immediately air lifted to that, but he is on a special diet and on
Toronto's Hospital For Sick Children. It has been nine months now since suppositories every second day for
TM hit Cole. He is still paralyzed bowel movements.
By the time we drove to Toronto, and shows little improvement in his
Cole was totally non -responsive and trunk and legs. He cannot walk, We are planning to attend a TMA
in critical care. This is where he stand, or even crawl. He has, Children’s and Family Workshop in
remained for two weeks. An MRI however, learned to sit up by pulling Columbus, Ohio in July 2002. We
was ordered. Cole's breathing was so on his pant legs, and pulls himself hope to gain some knowledge there,
poor that he was intubated and put on around the house with his arms. We and to meet other parents who have
a respirator. have not given up hope, but with already gone through what we are
each month it seems less likely that going through.
Finally, on Sunday, Cole was Cole will ever recover.
diagnosed with Acute Transverse All in all, it has been quite an
Myelitis. Cole's spine was inflamed Cole has therapy four times a week, emotional and financial drain on our
from C2 down. It is not known what two physio and two occupational. family. We have a long road ahead of
caused the inflammation. It may have He makes many trips to Sick Kids us, but we will try to overcome any
been a virus, an auto immune attack, Hospital in Toronto and to problems that may lie ahead. Cole is
or even a reaction to vaccines. He Bloorview Macmillan Center. He a very smart and happy little boy, and
had been having on-going respiratory sees neurologists, urologists, we are lucky to have him in our lives.
infections since his four month pediatricians, nurses and therapists We thank G-d he has come this far.
vaccine. there. At home, Cole has
Cole: TM Onset 6 months old occupational and physio therapy and
we are working with his
Barrie Ontario Canada
physiotherapist doing neuromuscular
electrical stimulation. She will also
be helping us when we start water My name is Michael Hartman and I
Cole was given massive doses of therapy in the new year. am a T3 para. I contracted TM in the
steroids and immunoglobulines. summer of 1999 and have been in a
Some of his functions started to return Cole needs a lot of special wheelchair ever since. I am 24 years
in a couple of days. By Tuesday, he equipment. He has a stroller called a old. I spent a year of my life in the
seemed to finally recognize us and kid cart that has several straps that hospital and rehab. I started in the
started to move his arms slightly. The hold him in. He has a prone stander summer of 1999 and was in ICU for
next day his hearing returned and he that he is strapped into to help three months where I was in a coma.
had a little more movement in his strengthen his legs, therapy balls, a When I woke up, I was a T3 para, but
arms, but his breathing was still very specially made table, and a that was the least of my problems.
poor and he remained on oxygen. He neuromuscular machine. We also During my hospital stay, I developed
also remained paralyzed from the have other things on loan, such as a three pancreatic sudo cysts which
chest down. caster cart, a para-podium brace he have a 50% mortality rate. Along with
can stand in, and a suction machine that, I also had three severe skin
We had never heard of Transverse for when Cole is sick and he cannot issues on my calves and behind,
Myelitis and could not understand cough properly to clear his airway. which required plastic surgery. I had
why this syndrome had struck our These things can be borrowed for a to spend two months in a sand bed.
son. I guess that's something that we short time, but eventually they will You cannot sit up until the surgery
will never know. have to be purchased. We are also heals.
looking into different types of
The Transverse Myelitis Association Page 39
After the skin surgery, I underwent Michael F. Hartman Mary Alica Reynolds
surgery to remove the sudo cyst. That Pittsburgh PA Dwight IL
was successful and the skin surgery
was a success, as well. When the
surgeries were completed, I went to my right leg was real weak. but not much. I still have the
rehab to learn how to live with my spasticity. When my leg wants to
disability. That took about five I finally got to the hospital and was draw up, when I’ve been sitting for a
months, because I was in such bad catheterized. I had a lot of doctors while and have this tightening
shape. When I went to rehab, there examining me, but they didn’t know sensation, I’ve learned just to tell my
was little I could do until I regained what was wrong. First they thought mind to relax that muscle. It takes a
my strength. it was MS, but then they ruled it out. few seconds, but it is working.
When they took an MRI, they still
When I regained my strength, I was couldn’t find anything. Finally, the I’ve been told to exercise my leg, but
able to get moving and came home in second MRI showed some I wasn’t seeing any change in my leg.
June of 2000. I am still a T3 para. I inflammation on my spine. I was I just about decided to give up. I was
am wheelchair bound, but I am then put on steroids intravenously. getting tired of having to lay around
getting around much better. If anyone At that time they told me I had TM. all the time, because my legs hurt and
is interested in talking to me, please I have a bad knee now from walking
feel free to contact me at my email or After being in the hospital for about straight-legged. I got up and started
phone. a month, they weren’t sure whether I walking as much as I could; pain and
would ever walk again. I wasn’t all. At first I thought, I can’t deal
Michael F. Hartman going to the bathroom on my own with this pain. But the more I pushed
597 Old Clairton Road and I couldn’t control my bowels. I myself, the stronger my leg is getting
Pittsburgh PA 15236 was a real mess. I didn’t want to and I don’t think about all that pain
(412)653-3231 live that way. It has taken me a long anymore. No, this pain isn’t in my
mcholhrtmn@aol.com time to get to where I am today. I head. I really was hurting, but I just
started out in a wheelchair, then to a used mind over matter.
I want to share with you what walker, then walking on my own.
happened to me and how I am doing The better you start walking, the more
now. First of all, I caught TM in I didn’t have any pain for about six determined you will get and the less
1999. Within the two and half years months and then I had so much pain pain you’ll think about. I am walking
of contracting TM, I lost my youngest that I nearly lost my mind. I very well now with my brace at a
daughter, grandmother, my oldest couldn’t even stand without having pretty fast pace. I can’t believe how
brother, my middle brother, my father pain. Well, I then had to go back on well I’m doing. I almost walk like I
and my mother. Last June 24th my my walker and start all over. I had used to. I don’t even use a cane.
youngest brother died. Yes, I have nothing for pain, so I still walked Getting your balance and watching
really been through it. Dealing with and just dealt with it. I then got your feet, how you step, then it is
my losses and prison and TM has just better, but I started having real bad smooth sailing. I barely have a limp.
about taken its toll on me. burning sensations and muscle
spasms. I was given viox, baclofen I quit catheterizing myself and started
I don’t know how I got TM, but and two other muscle relaxers, but urinating all the time, only a little at a
maybe from having an infection in nothing helped. time. I was always on the toilet, but
my body somewhere. I just don’t now I’m using my bladder on my own
know. I woke up on November 9, I was self-catheterizing and just and I can even hold my bladder and
1999 with chest pains. I thought I hoped that I didn’t have a bowel not go on myself. I do wear panty
was having a heart attack. I laid back movement when I was out. Well, liners for just in case. I can’t believe
down and fell back to sleep. I then next came spasticity and I still had that I’m doing so well and my attitude
got back up and went to go to the the burning. I’ve tried everything has changed so much.
bathroom and couldn’t go. My legs for this spasticity and stiffness;
felt wobbly and I could barely walk. nothing has worked. I got on I still have the bowel problem, and I
It took maybe an hour and my body pamelor for the burning and I’m do stress over that, but I use
went numb up to my chest. My left doing really well with that. I do suppositories and make myself go
leg went out from underneath me and have some burning here and there, even when I don’t need to. This
Page 40 The Transverse Myelitis Association
avoids accidents. I do have them room and they had no idea what the Denice Stohr
every so often. problem was. I had no reflexes in Livermore CA
my arms, legs or feet. I had no pulse
It’s been two years and I’m still in my wrists or feet. They did an
getting return in my leg. I’m starting MRI and spinal tap. Their would never be able to drive? All this
to practice going up stairs without conclusion was that they had no idea was happening too fast! I could not
holding on. My determination is and I should see my primary care fathom that my life had changed so
what has gotten me doing so well. physician the next day. I was much so fast! I was wheeled out into
Don’t give up. And if your doctor worried about leaving the hospital the waiting room where I saw my dad.
tells you that if you don’t get return in since I still could not move. He casually asked how it went and I
three to six months then you won’t, lost it! I was inconsolable! In the
well, it is not always true. I am the I went to see Margaret, my nurse days and months since then I have
proof of that. practitioner. She told me that I had endured 12 spinal taps in one day, that
an appointment with a neurologist didn't close and I had to receive 'blood
I’m really doing well and I’ve had to later that day. Since I had not made patches,’ 23 MRI's, 16 CAT scans and
pull myself through it with only the appointment and she had not various other attacks on my body.
myself and the help of G-d and made the appointment, we were both
reading Sandy’s letters and the at a loss as to who did. I started to I am now able to walk with braces and
newsletters. Well, that’s the story. I become really worried about what a walker. Due to the meds I take, I
hope I’ve encouraged you to keep was happening. My dad took me to have very little memory. I have
walking, to keep your mind strong, my appointment later that day. I met broken just about every dish in the
and to trust in G-d. It works! the neurologist. He told me that I house, because my brain will forget to
would have to stay in the hospital so tell my hand that I am holding
they could do a few tests on me. I something. I have incontinence
will tell you at this time that I HATE trouble, and am in constant pain. I
hospitals. In the hospital I was can not feel my feet or most of my
poked, shocked, stuck, x-rayed, and hands. I was given anti-depressant
prodded. I felt like a human pin drugs for the pain, which do nothing
I was diagnosed with TM in January cushion! I was released from the to stop it. I am taking 3600 mg. of a
2001. I was up on Mount Hamilton, hospital after four days. Before drug called Neurontin. I wish I knew
playing in the snow with my leaving I was told that I had some how to get the doctors to listen to me!
grandchildren. We were having a strange thing called Transverse If they can grow an ear on the back of
wonderful family outing. Very Myelitis. They had no idea how I a mouse, I can't understand why they
seldom do I have the opportunity to got it, how long it would last or what can't come up with some way to stop
see all of our grandchildren at once it was. I was instructed to return to the pain!
and we took advantage of our day the neurologist in two weeks. I have been very touched by the other
together. I have gotten herpes cold letters I have read in the newsletter.
sores since I was a child and didn't When I got home, my husband and You all have made this unwanted
think much of getting an outbreak. I son brought the extra twin bed journey a little less frightening by
took my meds, as usual, and went on downstairs and I tried to get around sharing your stories and I want you to
with the day. This time it was as best I could. If it were not for my know I appreciate your words. My
different. After the initial breakout friends and family, I don't think I heart goes out to those of you who
was over, I got a new, more sever out would be here. Those were the have not, as of yet, made the progress
brake the next day. This had never longest two weeks of my life! I you have desired. Keep trying! Don't
happened before in 38 years. went to see the neurologist and was give up! I am pulling for you! You
told that my condition was are always in my thoughts and
The next day when I woke up I could permanent. I could not believe the prayers!
not move. I thought it was due to the words that were coming out of his
fact that I am not usually in the snow mouth. In fact, he had to repeat Your friend!
and since I have scoliosis, my back them three times! My mind was Denice Stohr
was just giving me fits. It continued reeling! I would never walk again? nieceepoo@earthlink.net
through the day and I became I would never be able to be a clown
concerned. I went to the emergency again (that was my profession)? I Hi, my name is Ruthie and I live in
The Transverse Myelitis Association Page 41
Atlanta, Ga. I am 51 years old and I “girl, I don’t know, I never had a The doctor came in and told me that I
was diagnosed with TM back in 1999. stroke. You need to hang up and call would be transferred to a rehab center
First, I would like to thank Sandy your doctor.” I hung the phone up for three to four weeks. I went to
Siegel, for his work for the and called the health desk. I rehab and went to therapy three times
Association. This is the only way that explained to them what was going a day. I was doing so well that I
I was able to get all my information on. She asked me if anyone was at asked if I could go home early. I was
about TM. Sandy thank you, thank home with me and I said, “No.” She told on my twelfth day that I could go
you, thank you. told me to hang up the phone and home early. I said, thank you G-d. I
call 911. I hung up the phone and had to go to physical therapy twice a
I worked for the Atlanta Public called my sister back, and asked her week for three months.
Schools as a computer lab manager. if she would come and take me to
On March 4,1999 I went to work. My the doctor. She said, “I’m on my I went back to work in May. I
day started out a normal work day. way.” couldn’t do it; my legs were too
We were having a program around weak. I had the burning. I couldn’t
9:00 that morning. After the program The tingling and burning started in control my bladder and bowel; that
I had my lunch around 11:00. About my left leg. Some of the feeling in was bad. I ended up going on
1:00 my principal asked if I wanted a my right leg had come back. I went disability. As of today, I’m having
piece of her fish; I said only a small to get out of bed again and had a problems with the burning in my legs
piece, because I had already eaten. hard time getting to the restroom. I 24 hours a day and the numbness.
About 2 minutes after I had eaten the finally made it. I made it to the Last week I had something happen to
fish, I had a bad case of indigestion. I family room. I sat by the door so that me which I had not experienced in
drank a Coca Cola and ate mustard when my sister arrived, I could get two years. I was sitting in my family
afterwards, but nothing released the up and open the door for her. When room. When I tried to get up, my legs
pain. School ended for the students at my sister arrived, I tried to get up went out. I have not had this problem
2:30 and 3:00 for the staff. Around since my first encounter. I am asking
1:45 I asked if I could leave; I left Ruthie Landers that if anyone has found a medication
around 2:30 still in pain. I didn’t Atlanta GA that has helped them with the
know if it was indigestion or gas. On burning, to please let me know.
my way home, I stopped by the drug These are the medicines that I have
store to pick up something to take. I taken since I had TM:
then went home, took the medicine and open the door. I couldn’t move Neurontin - 300MG
and laid down. my legs. I fell on the floor. From my Methocarbamo - 75MG
waist down I was paralyzed. I then Cyclobenzaprine - 10MG
Around 4:00 my son came into my had to drag myself to the door. We Gabitril - 2MG
bedroom and woke me up. He said, went to the hospital around 7:00 Topamax - 25MG
“Dr. Leslie called to see how are you p.m. Naprxen - 500MG
doing, because you left work a little Celebrex and amitriptyline.
early due to your not feeling well.” I The doctor ran all kinds of tests.
said, “yes I did; I don’t know if I have They found everything normal. The A big thanks goes to my friend, Mrs.
gas or indigestion.” I had taken doctor told me they couldn’t find Charlie K. Hardnett, for going on the
something, but the pain was still in anything wrong, but that they were internet and finding The Transverse
my chest. My son said, “why don’t going to admit me in the hospital. Myelitis Association. Thank you,
you get up and walk around.” I said, The doctor told me that he would do Sandy Siegel, for all of your work for
“I have been walking all day and that a MRI the next morning. I asked the this Association. I will keep every
didn’t help; but I will get up within an neurologist what was TM because I one of you in my prayers.
hour.” I laid there for one hour. had never heard of it. He said
When I got ready to get up and go to Transverse Myelits. I then asked, Ruthie Landers
the restroom, my right leg started how do you get it. He said you could 4071 Ester Drive SW
tingling and burning. Then it went get it from having a real bad cold or Atlanta GA 30331
numb from the knee down. I picked if you had the flu, it set up an
up the phone and called my sister. I infection in your spinal cord.
asked her, “how do you feel when Hello, my name is Violet. On April
you are having a stroke?” She said, I was in the hospital for eight days. 28th 2002, I complained to my
Page 42 The Transverse Myelitis Association
husband that I had a pain in my side. husband, who is very understanding. concerned when I had not arrived at
The pain extended across my lower I can now walk with the assistance the office. When I was discovered, I
chest. Because of the time of day, he of a walker and sometimes a cane. I was very hypothermic, as I had lain on
decided to take me to the ER. After discovered TMA on the internet. I the floor for over a day. It was ‘touch
testing, I was diagnosed with Iron have read all of the amazing stories and go’ in the ambulance and at A &
Deficiency Anemia. I was admitted to and was very moved. I have learned E.
the Hospital. The next day I was a lot about
treated with antibiotics, iron Transverse Myelitis that I never I was assessed by loads of doctors
supplements and blood transfusions. I would have dreamed without TMA. who undertook various tests including
was discharged and went home on a MRI scan. I was told that I had a
April 30, 2002. Pleased to meet you and may God slight swelling on my neck and after a
Bless you all. small operation I would be okay. I
The very next day 01 May 2002, I was transferred to the local
started to stump my left foot as I Violet Neurological Centre for this. When I
would walk. My husband thought it got there I was told that they thought I
could just be a reaction from being had Guillain Barre Syndrome (GBS),
discharged from the hospital. I had a but the doctors wanted to do more
follow-up appointment scheduled for tests. I was asked loads of questions. I
the 7th of May. My husband called Hello, my name is Theresa Dempsey remember being told that I might need
the doctor’s office two times to report and I am 31 years old. I live in to be ventilated, as my breathing was
the problems. When he called the Horsham, West Sussex, England. I getting harder. I then woke up a few
second time, he told them that I was suddenly became ill on the 27th days later having missed Easter on a
now not able to even walk. I was told March 1999 when I woke up with a ventilator, very disorientated, and not
only to keep the appointment for the stiff neck. I thought that I must have knowing what was true and what was
7th of May. slept in an awkward position and it not. I have very vivid memories of
going to Manchester and Scotland for
The appointment date finally arrived. Violet B. Laws tests which I know I did not and other
By this time my husband had to take Winchester Virginia very strange hallucinations which I
me to the doctor’s office in a wheel jenny@visuallink.com now know to be quite common with
chair. The doctor examined me and GBS. I know I was treated with
said he could not diagnose the Steroids and Immuglobin, but I do not
problem. I am a post stroke patient so got a bit better during the day. That know how quickly I received this as
he made an appointment for me to night I went to bed and I woke up in my symptoms kept changing; as one
see my neurologist. My husband the early hours of the next morning day I would have an knee/ankle reflex
talked to the neurologist who stated feeling very strange and my chest and the next day I did not.
that my illness had nothing to do with felt very tight and it was difficult to
my previous stroke three years prior. breathe. I managed to get to my After a lot more tests comprising
My husband took me to the ER again hallway to try and get help (as I was several MRI scans, Nerve Conduction
on the afternoon of the 7th of May. living on my own at the time), but I Tests, Nerve and Muscle Biopsy, three
started getting tingling in my fingers Lumbar Punctures my diagnosis was
Tests were run again and I was and I could not dial the numbers on finally decided as Guillain Barre
admitted back to the hospital. This the telephone. I then started to get Syndrome and Transverse Myelitis
time I was diagnosed with TM. I was tingling throughout the rest of my after a complication with the Mumps
treated with different drugs after body and could not stand and Virus. The doctors kept asking me if I
MRIs, x-rays and other treatments. eventually collapsed and I remember had had mumps, but as far as I am
After being hospitalized for seven thinking this is it; I am going to die. aware, I didn’t. I was weaned off the
days, I was transferred to a ventilator very slowly and finally
rehabilitation center where I spent The next thing I remember is came off it in June 1999.
another seven days. I came home on waking up in ITU at Crawley
the 21st of May 2002. Hospital wondering where I was. I Unfortunately, I developed a severe
was later told that I was found early pressure sore so I was confined to
I am trying to recoup the best I can on Monday morning by two of my bed-rest and was not able to undertake
with the help of God, doctors and my work colleagues, as they were my rehabilitation until February 2001.
The Transverse Myelitis Association Page 43
Theresa Dempsey afford, the group might consider
Horsham West Sussex England Correction holding some of the meetings in
tsdempsey@hotmail.com places where a meal does not need to
20th November 2001 In the last newsletter Conrad Brown be purchased, or members should be
wrote an article about the TENS unit made to feel comfortable attending
By this time I was in the Spinal Unit and how he has used it to help the meetings and not buying the meal.
at Stoke Mandeville Hospital. I had control painful spasms. He listed Finding appropriate solutions to some
gained movement in my left arm only, contact information in the event that of these issues will ensure a core
but no real finger movement; only a anyone wanted to reach him to group of members regularly attend the
flicker in the second and third fingers discuss the use of a TENS unit. An meetings and will enhance the group’s
of my left hand. incorrect phone number was effectiveness and staying power. To
identified. The correct contact that extent, the leader should not be
I am now confined to an electric information for Conrad is as follows: reluctant to delegate responsive action
wheelchair and have a 24-hour carer to secure this core group. Involving
and live in an adapted two-bedroom Conrad Brown the whole group in finding the
bungalow. I manage to eat with a 518-392-6101 solutions ensures that the group will
feeding strap, use a computer with a fax 392-0149 find the solutions that work.
typing splint and write with a writing VZConrad@earthlink.net
splint and do other daily tasks with Members who wish to get involved
splints. I have also been left with and to share the work load should
several other problems, including Functioning as a group requires have the opportunity to do so. This
severe pain in my right shoulder (I cooperation and shared employment of group members
have had an operation on this as it responsibility by group members and provides the leader with additional
was dislocated whilst I was on bed a willingness to participate in the resources that can be used to bolster
rest). I also have patchy sensation in pre-planning and preparatory work attendance and to ensure the
both of my legs and a tingling feeling at all levels. This increases the continuity of the group. Some of the
all of the time and a feeling that my chances of success of the support activities that can be delegated and
legs are being “strangled.” I still only group by increasing the participation shared by group members include,
have movement in my left arm and of as many people as possible. It writing the meeting notice that is
head and neck. provides everyone with a sense that posted on The Transverse Myelitis
they share in the ownership and have Association website; finding and
The reason for me writing is that I control over the direction of the arranging the meeting place; if meals
have been told by my Neurologist that group. And it increases the are to be served, selecting the meal
I am unique as he has researched my possibility that the group will not items and making the arrangements
case with other Neurologists and also end from a lack of interest. for member payments; preparing and
on the internet and has been unable to printing and mailing invitations and
find any record of other combined Members of groups in which notices for meetings which include
cases. I have also read articles both in attendance is sporadic and irregular the time, date and directions; helping
the GBS magazine and website and should be encouraged by the leader to prepare a schedule of future
also the Transverse Myelitis Support to formulate an appropriate plan of meeting dates; volunteering to make
Group magazine and website and action. Some of the issues that could copies of literature and materials that
have not come across any similar case be considered when evaluating will be distributed to members at the
to me. I would be very interested to participation are the meeting times meeting; and volunteering to make
hear from anyone with similar and dates, the location of the phone calls to members to remind
experience to me and has been meetings and the content of the people of the meetings.
diagnosed with both Guillain Barre meetings. People have busy and
Syndrome and Transverse Myelitis complicated lives; support group Shared responsibility in planning
and would be grateful if you could meetings need to be convenient for often results in increased clarity of
contact me either by e.mail people to attend. Another purpose. Such clarity increases the
tsdempsey@hotmail.com or by post consideration is whether there is a member’s ability to make an informed
to 30 Park Terrace East Horsham cost associated with the meetings. If decision about whether he or she
West Sussex RH13 5DN. a lunch or dinner meal is served that wants to participate in the group. Thus
some members might not be able to shared planning can result in
Page 44 The Transverse Myelitis Association
then, we have kept in fairly close

TM Support Groups contact as we both try to encourage


legislation to be passed through the
Australian government to have
Functioning as a Group: Shared “shared” effort by all of your unrestricted research into embryonic
Responsibility members. If you wish further stem cells. We certainly appreciate
Pam Schechter advice or suggestions or wish to the sanctity of life, but we also see the
exchange your own suggestions and enormous benefits to society from
helpful ideas about support groups, such research.
minimizing domination by the leader please e-mail me at:
and maximizing individualism and A few weeks ago the Premier
self-determination. Shared Littleprincess900@hotmail.com requested another visit to see Luke,
responsibilities and pre-planning can Regards to all, this time at our home. We, obviously,
help to set the group’s priorities and Pam Schechter said yes. Anything we can do to
assures that the group’s needs are encourage exposure to Transverse
meaningful and helpful, that they will Myelitis and Stem Cell research will
make a real difference. help Luke, and we have a strong
sense of responsibility to do that.
Another way to share responsibility
in the group is to share the Luke contracted TM in April 2000 The Premier arrived with 30-40
responsibility of leading the at the age of five and half months. media people and swamped our house
meetings. The group can rotate this Luke is now two years old. He is a -- in a semi-controlled fashion. Luke
activity between members who are quadriplegic and has limited was a little over-awed, but then
interested in taking on this role. The movement of his arms and hands. settled down to his charming self. He
person leading the meetings can take He has some sensation in his lower completely stole the show. We told
on the activities of making sure that limbs. He breaths abdominally. the Premier about Dr. Kerr’s research
new members are introduced to the There is some small independent with stem cells and we showed him
group and asked to share their and conscious movement in his legs. Dr. Kerr’s video of the partially-
background, history and reasons for (Luke’s story appeared in Volume 4 recovered rat following the stem cell
joining the group; by allotting time to Issue 2 of the TMA Newsletter). injection. We talked to the Premier in
each group member to update recent front of the media about Luke and
experiences regarding his or her In April of this year, Luke was in TM and stem cell research. We then
attempts at recovery and other the hospital with a cold. As fate had a press conference outside where
happenings since the last meeting; by would have it, the Premier of New more issues were discussed. The
introducing topic discussions and the South Wales, Mr. Bob Carr, was coverage of Luke has been on the
agenda; and by leading general also at the hospital opening a new four Statewide news stations, national
discussions on questions and wing. Ali saw all of the press radio several times, and the two local
concerns posed by the members. outside and that is how we had news channels. The story appeared in
discovered that the Premier was at all of the state newspapers, including
As group survival tactics, shared the hospital. I told Ali that he was front page coverage. Luke’s story
responsibility and shared pre- very strong on his support for also was covered in two local
planning are key elements for the embryonic stem cell research. Ali newspapers. In addition to this, both
perpetuity of the group. The use of jumped to her feet and went down to Ali and I were on talk back sessions
these elements reinforces the see him. She thanked him for his on radio to push the case.
dynamics of the group, because support on stem cell research and
everyone has a stake in the group's asked if he would like to come up to Ali told the media that our main aim
success and continuity. see Luke; a boy who would likely was not to get Luke walking again.
gain so much if the research was She said that the main problem was
Good luck to those of you who wish approved. The Premier changed his Luke’s chest, which had limited
to start a regional support group. I schedule and came straight up - with function forcing Luke to breathe with
hope my suggestions help to improve about 15 others. He was truly his abdomen and leaving him
your chances of success and that inspired by Luke’s plight and spent susceptible to illness and infection.
responsibility for the group is a nearly an hour talking to us. Since For every single respiratory illness he
The Transverse Myelitis Association Page 45
Making a Difference in with a reduced majority, and then it
Australia will be law; hopefully, by the end of Then the 20th of April 2002, the day
Steve Alderton the year. of the event.
alderton@shoal.net.au I had ordered a quiet table for dinner
We will continue to fight. We at 5.30 pm in a middle -class Hotel/
realize that if Australia and other Restaurant in Kehl and at 6 pm we
has he is hospitalized and requires countries, like Britain, pass this were eight people from all over
ventilation. If we could have Luke legislation, then the tide will begin to Germany, five with TM and three
with a better chest and improved hand turn on this issue, and everybody, companions. We all saw each other
function then that would be great; and including our son, will win. for the first time, so I was excited and
it would be exceptional to have Luke curious how it would work out with
having mobility of his legs. us. We really did have a good
evening, the meal was fine, the
It is so important that research into conversation also. We used the
embryonic stem cells be advanced. benefits of a little group, spoke a lot
There is incredible potential in both My name is Ursula Mauro. I about our experiences with TM,
Adult and Embryonic Stem Cells. contracted TM in June 2001 and I’m treatments, difficulties, about some
Both areas of research must be in the process to start a German TM ideas, for example, to create a
pursued. This will be the way support group. After I introduced German page on the TMA Home
medicine goes in the future. Ali and I myself in the last newsletter and via Page and stayed together until about
are interested in helping our son, email to the German membership, I 11.30 pm. We all want too stay in
Luke, and everybody else now. We wrote an email to the German TMA contact and a German network
do not want to wait five years. There members and asked about people develops. I’m real happy about it and
is too much suffering now. It would who want to get active. A few see the meeting as a success.
be morally wrong for us not to fight answered and slowly we started to
strongly for this to happen. It is our get in regular contact with each And I’ll try to organize the next
responsibility. other. Once in a while I sent new support group meeting in November
little letters out there, also to the new 2002 and hope that many people will
Since the media exposure, we have addresses of German members. attend. I also search for people who
had endless calls from people Sandy transfers to me all new would get busy with raising funds for
supporting us, some who have had members from Germany, I make the TMA in Germany. I think that’s a
TM. When the general public sees contact with them and some more very important job; we need money
someone like Luke, it is hard not to people reacted. (Thanks, Sandy for urgently, because the TMA has no
be moved, not to be inspired. What is all your support)! membership fees and also much
right and wrong becomes money is needed for the research.
immediately obvious; all the other In January I announced the first
arguments fade away. (informal) TM support group So whoever is interested, please get in
meeting and asked who would be contact with me.
The Premier continues to call to interested. The months between the Ursula Mauro
check on Luke’s progress and has a announcement and the meeting were umauro@t-online.de
picture of Luke on his desk. pretty exciting for me, also because Tel.: 07807-3154
The bill went to Parliament in late it was so unsure about how many
August. Alison and I went to people would attend. Some couldn’t And finally, I want to thank all the
Parliament on Monday, August 19 come because of understandable German TMA members who were
with the Premier of New South Wales reasons as relapse, vacation, hospital willing to get involved and to start
to give a presentation in support of stay, a long distance; some didn’t with me a German support group!
ESC research legislation. The bill on know until the last second.
the use of Embryonic Stem Cells has Unfortunately, also my neurologe You all take good care about
made it through the House of couldn’t come because his wife had yourselves,
Representatives with a 75/25 a baby a few weeks before. Ursula
split. This is good news. It is now Hello TMA, Ireland here!
under a month research review by the A few days before the meeting I had
senate. It should go through there 6 obliging announcements. I am so delighted to report what a
Page 46 The Transverse Myelitis Association
TM Support Group in Germany diet, and exercise. is very lucky to have him. He is very
Ursula Mauro dedicated to our cause. He stayed
Our meeting brought back memories about two hours after the meeting and
of the First International met people individually, sharing his
Symposium, which I attended in knowledge.
wonderful mini-symposium we had Seattle. It was a very emotional
here in Ireland, July 5th 2002. experience. There were many We also enjoyed having Chitra attend
people with TM meeting other the meeting. She is Dr. Kerr’s
What was only a wish in 2000 turned TM’ers for the first time. It was just assistant, and is also very
into an excellent day for all of the great watching them all. After the knowledgeable about TM. She spoke
people in Ireland and the UK with meeting was over, many people with the TM clients also.
TM. I had been contacted by several stayed to talk to each other and
people here with TM after doing a many were comparing their It was also so nice to meet Dr. Kerr’s
radio interview on a national radio experiences. It is a great benefit just wife, Kathleen, and little Caroline,
program. to be able to talk to someone else who is the apple of daddy’s eye. He
who knows exactly what you are even ended his notes on screen with
I had been trying to get funding from going through. In the association, Caroline’s picture! A lovely personal
different sources for a TM meeting, we all know about that. It’s so good touch. All of our guests enjoyed a
but to no avail. Then I was at a to share knowledge and ideas. short break in my hometown,
Christmas dinner for the regional Westport, before returning to
(West of Ireland) MS Society last There was a mother and her baby Baltimore.
December and spoke with the who came from England specifically
regional manager about whether we to see Dr. Kerr. She was delighted One of the very positive results of the
could organize some kind of to have him on our side of the world. meeting was a decision to form a
information day for TM through the She had traveled to see him at Johns membership address list of people
MS Society. Thankfully, he was very Hopkins earlier in the year. They with TM in Ireland. This will make it
interested. This is how a had a very good discussion about easier for us to keep in touch with
Neurological Information/Awareness progress since their visit to each other. I have contacted the
Day in Galway came about. There Baltimore. National Rehabilitation Centre asking
was a speech about motor neurons them to be sure and inform newly
given by a neurologist from Dublin, There were also other clients from diagnosed patients of our Ireland TM
as well as a speech about MS by a England who attended. Geoff Support Group.
neurologist from Co. Cork. Dr. Kerr Treglown, the support group leader
from the Johns Hopkins Transverse from England, also came to the I really am so delighted that I was able
Myelitis Center came all the way meeting. Geoff prints and mails all to organise the day. As I said to
from Baltimore and spoke about TM. of the TMA newsletters and Sandy the day following our meeting,
Dr. Kerr spoke in terms, which were directories to our members from all “I was like a dog with two tails.” I
about the patient, making very over Europe. He expressed an was so happy with the way everything
complicated subjects easy to interest in having Dr. Kerr to visit turned out. Photos of the Ireland
understand. England for a support group meeting are posted in the web version
meeting. So, we will be working on of the newsletter.
I was delighted with the turn out of that idea with Dr. Kerr!
TM clients who traveled from near Take Care All.
and far corners of Ireland and Love to everybody in the TMA.
Ireland TM Support Group
England. There were also medical
Ann Moran
professionals, occupational and Ann in Ireland - still cold and very
physio therapists who attended from little sunshine this year!
several places in Ireland. There were First Meeting to Be Held
some alternative therapists who Dr. Kerr was his usual wonderful
expressed great satisfaction with Dr. self. He is so easy to listen to, and Plans are underway for the first
Kerr’s speech. They indicated that he makes everything interesting. The meeting/social get-together for people
was a neurologist and scientist who TM clients were thrilled with him. with TM in South Africa; it will be
understood the benefits of therapy, He is such a great person. The TMA held during the first week of
The Transverse Myelitis Association Page 47
November in Johannesburg. One of on 15 August 2002. She encouraged she sent me straight to bed. By then
our members, Paul Swart, has kindly people to become actively involved both my legs hurt really badly. It was
offered us the use of a house in disability issues as this would help very similar to having bad growing
overlooking the tranquil Vaal River. to guide society in understanding the pains. My mother rubbed my feet for a
The aim of our meeting is firstly to special needs of those who are while and that made it a bit better.
get to know each other, to share our disabled.
TM experiences and to look at ways My name is Ulrika Pettersson, I am I finally fell asleep. But about one
in which the SA TMA can become 23 years old and I live in Uppsala, o’clock in the morning I woke up and
more proactive in creating awareness Sweden. I have been a member of now the pain in my legs was horribly
regarding TM. the TMA since 1999. A few weeks bad. I sat up, put my feet down on the
ago Sandy asked me if I wanted to floor and tried to get up, but I
Creating Awareness: Workshop on start a local TM support group in couldn’t. My legs were too weak. I
Accessibility Sweden. I said yes. So, I thought this had to find another way to get
might be a good time for me to intro- downstairs to my parents’ bedroom.
TMA member, Tanishka du Plessis’s duce myself to my fellow TM’ers For some strange reason I didn’t want
employer – the Provincial Legislature and share with you all my story. to wake my sister up so I slowly and
– held a workshop on accessibility at quietly sat down and started to shuffle
the Legislature on the 24th of July, as The onset of TM along the floor, using my hands.
to educate those in government Somehow I managed to get down the
circles about the needs of the disabled It all started on October 23rd 1991, stairs without getting hurt. When I got
regarding accessibility of government when I was 12 years old. I had had a down to the hall outside my parents’
institutions. This workshop follows a cold for about a week and I had a bedroom, I gently called my mother.
petition submitted by Tanishka to the terrible cough. During my lunch She woke up, came out to me and
Legislature in 2000 citing that the break I was playing in the asked me what was wrong. I told her
inaccessibility of the Legislature schoolyard and as I bent down to that my legs were so weak that I
building was discriminating to the pick up a ball I felt a sudden, sharp couldn’t walk. She and my father then
disabled community and hampered pain in my back. It hurt really badly, immediately called the local hospital.
their participation in legislative but I figured it was all the coughing We were told that we should go
proceedings. Tanishka was given the that had caused the pain and so I straight to the hospital so that I could
opportunity to address the Members didn’t think too much about it. Later be thoroughly examined. So my
of the Provincial Legislature and that evening, I was lying on my bed mother helped me to put some clothes
Government Department when I suddenly got a tingling on and then my father carried me out
representatives on the importance of feeling around my knee. It soon to the car and we went to the hospital.
their role in ensuring that the voice spread to the rest of the leg. I There, a doctor examined me and
and concerns of the disabled quickly decided to send me to the
community is heard and seen to. She News from the South Africa nearest university hospital for further
also shared her TM experience and TM Support Group examination.
the aims of the TMA. The feedback Tanishka du Plessis
was incredible. The provincial Waiting for the diagnosis
chairperson of Disabled People of
South Africa, who was a participant thought it was very unpleasant so I I arrived at the university hospital in
at the workshop, expressed a got up from my bed and went down Uppsala at about half past three in the
keenness to learn more about TMA to the kitchen. A little while later I morning. A doctor examined me and
and to look at the possibility of started to loose the ability to control checked my reflexes. In the right leg I
including SA TMA in its activities. the movement of my legs. As I tried had a negative patella reflex, whereas
to take a step forward, my leg my Achilles reflex was intensified. I
Rehab Meeting crossed the other so that I walked didn’t have any Babinski reflex. For
into things. My sister, who has my left leg the situation was the same
Tanishka was invited by the always liked to tease me, asked me apart from the fact that the patella
Provincial Rehabilitation for People what I had been drinking. I, reflex was highly intensified. The
with Physical Disabilities to share her however, did not find her joke very sensation was normal in the right foot
TM experience at a monthly Forum amusing. My mother thought that I and calf, but I had no sensation above
for People with Disabilities meeting had just overstrained myself and so the knee. A few blood samples were
Page 48 The Transverse Myelitis Association
Hi everybody! sensation impairment was found to
TM Support Group in Sweden be at the level of the twelfth thoracic Now that a week had passed and all
Ulrika Pettersson vertebra. What bothered me the most sorts of tests had been done the
ulpe1924@student.uu.se at this point was that the muscles of doctors were certain that what I had
my bladder had been affected by the was TM. I was given steroids for
illness. I couldn’t empty my bladder. eleven days; first intravenously and
taken and then I was sent to have a I didn’t want a catheter, so I didn’t then in the shape of pills. The dose
lung x-ray. want to drink anything. But after a was reduced gradually. I also
while I just couldn’t take it anymore. underwent an SEP.
The following day the patella and My bladder was so full that I thought
Achilles reflexes in the right leg were it would explode. So I got a catheter. Rehabilitating and making progress
gone, whereas the reflexes in the left I found that very unpleasant, because
leg were back to normal. I couldn’t it hurt and also because my sensation As soon as the diagnosis was made,
move the right leg at all, but I could was impaired so it felt really weird. the physiotherapy began in earnest. I
lift the left leg a little bit from the Plus I was very shy. I felt sort of got a physiotherapist who was really
bed. However, I couldn’t hold it up insulted but once I had the catheter I good. I felt like she really cared about
for very long. On this day the doctors was still relieved, because I could me. Not just my condition, but me.
performed a lumbar puncture. That finally allow myself to quench my That made a huge difference. She took
was awful for me. First of all I had to thirst. On this day I was also sent to the time to talk to me and get to know
lie on my side and that was very have a MRI. It may sound strange me before we started the therapy. She
difficult for me because it hurt, and but I actually liked that. It gave me a made me want to fight and prove that
then the doctor had to stick me a few chance to be alone with my thoughts. I could do things. In the beginning of
times before he hit the right spot. I The MRI didn’t show anything rehabilitation we mostly worked on
didn’t cry but when it was over my pathological. stimulating the muscles. I would try to
face was all wet with sweat. This was move my feet, toes or legs and at the
also the day when the physiotherapy On the sixth day an EMG and a same time try to focus on what it used
started, but I wasn’t really in the neurography were done and on the to feel like when I could move them.
mood for it. I was very introvert. I seventh day I underwent an ECG It was difficult and sometimes I lost
think I was in a state of shock. I was and an EEG. I was also sent to have my patience, but after a while I started
really very calm; almost apathetic. a myelography. That examination to make progress. I started to be able
was done with anesthesia. I really to move my left foot and toes and
The next day I was moved from the appreciated that. First, I was given a there was a slight activity also in the
emergency ward to a regular ward. I local anesthetic in my right leg to right foot. My sensation got better too
didn’t like this. I had started to get to keep it from hurting too much when and the boundary of sensation
know the nurses and doctors on the I was moved between beds and then impairment was now at the level of
emergency ward, but now I had to get I got a couple of tiny pink pills to the first lumbar vertebra.
to know a whole bunch of new calm me down a bit. I smiled and
people. The tiny sense of security that thought to myself that those At this time I was allowed to get up in
I had built up was shattered. ridiculous pills couldn’t possibly a wheelchair for the first time. This
have any effect whatsoever. But, of was almost two weeks after the onset
The fifth day at the hospital I was course, they worked. I soon started of TM and I bet you can all guess that
examined on the new ward. First the to feel really relaxed and a little I was now fed up with just lying in the
reflexes, coordination and strength of while after that I was having a very bed all day. The chance to get some
my arms were checked and difficult time trying to count the change of scenery that the wheelchair
everything was found to be normal. people around me. I got my offered was really what I needed and
My left leg had lost the Achilles anesthetics and fell asleep. I think I it made me feel a lot better. I have to
reflex and I couldn’t lift it up from the slept for about an hour, but when I say though that getting up in the
bed anymore. In the right leg the woke up I felt like I had slept an wheelchair for the first time was more
patella reflex was back, but it was still entire night. It might have been that complicated than I could ever have
only a very weak reflex. The the artificial sleep wasn’t disturbed imagined. My muscles had got so
sensation was strongly impaired in by dreams or worries. I don’t know. weak from me just lying in bed for so
both legs, but more so in the right leg Anyway, the myelography was long that I actually had problems
than in the left. The boundary of the normal. holding my head up the first day.
The Transverse Myelitis Association Page 49
and we went to a hamburger from the hospital. I was allowed to go
As soon as my legs were strong restaurant. That was very nice as I home for the weekend, but after that I
enough, I was put on a special kind of was starting to get tired of the was to stay at the rehabilitation home
bunk that could be tipped up so that I hospital food. for two weeks. Being home again was
got to put some load on my legs. I really great. I was so happy. I felt like
also did a lot of arm training with For each day that went by I got my home town somehow had become
dumbbells. Gradually, the training got stronger and I soon started to use so much more beautiful. And it was
tougher. I had to practice getting walking trestles. Sometimes I great to be back in our house, eating
myself out of and back into the secretly tried to use crutches in my mom’s homemade food and sleeping
wheelchair. I practiced falling out of room, but that was still too difficult. in my own bed. Coming home was
the chair and getting back in it. That At one time I nearly fell and after one of the happiest moments of my
was really hard and scary. Sometimes that I didn’t dare to go on. But I life.
the training was so hard and it all felt really longed to be able to take care
so hopeless and difficult that I just sat of and do things for myself so I just The rehabilitation home
on the floor crying. It was all so felt that I had to go on trying new
unfair and I just wanted to give up. At things. But I did it all on my own But the weekend passed and it was
those times my physiotherapist meant when no one was watching me. I soon time to go to the rehabilitation
everything to me. She never really wanted to prove that I could do it home. That was the most horrible
lost her patience with me. Instead, she without help. It paid off. At the end place I have ever been to. I didn’t
sat down next to me, hugged me and of November I managed to get want to be left there and I cried. But
tried her best to make me feel better myself from my wheelchair to my my mother and father were told that it
and want to fight again. bed and back again without anyone would be better once I got settled in.
helping me. And I noticed that I But things didn’t get better. If
On November 17th I could, for the could lie on my side again. I had anything, they got worse. I was so
first time in more than three weeks, always slept on my side before I got alone the first evening there. No one
lift my left leg an inch or so from the TM. I hated sleeping on my back, had the time to talk to me or pay any
bed while lying on my back. I cannot but when I first got ill I had no other attention whatsoever to me so I just
even begin to describe how wonderful choice. But now I felt so free. I think rolled into my room and felt
that felt. A few days later I could lift that one has to experience it to fully completely abandoned. I don’t
my left leg up to about 60 degrees. understand how such a small thing remember if I cried, but I think it’s
The Achilles reflex was back in the could mean so much. I immediately quite possible that I did.
left leg and I had also started to regain showed the nurses my new skills and
the strength in my left foot. I could they, of course, reported to the The second day somebody came to
also move my right foot a little bit. I doctors. The catheter was removed wake me up. I was really sad and
couldn’t lift my right leg yet, but for the second time and now I could didn’t want to get up. A little while
there was some activity in the thigh actually empty my bladder, but not later the person came back and told
muscle. very well. me I had to get up, take a shower and
get dressed so that I could eat some
In mid-November the catheter was According to the medical experts I breakfast before I had my first
taken out, but I still couldn’t empty was now too well to stay at the physiotherapy session. I think it was
my bladder so the catheter had to be hospital, but not well enough to go now about 7.30 and I was told that the
put back in the same day. The home. I needed intense physiotherapy was to begin at 8.00. I
physiotherapy got even tougher and I physiotherapy and I needed to learn tried my best to hurry up. I rolled into
started to train in the hospital pool. It to take care of myself and the daily the bathroom and took a shower and
was scary, but at the same time nice. I chores. Therefore, I was to be sent to then got dressed, but it took me a
also started to practice with a walker. a rehabilitation home. I protested, of while. I then rushed out to get some
But I didn’t really walk. It was more course, but no one paid any attention breakfast. A girl who worked at the
like shuffling along using my left leg to that. Once again, I felt like my rehabilitation home helped me to get
and putting almost all my body world, my sense of security and my something in my stomach, but while I
weight on the walker. Around this faith in the doctors had been was eating my new physiotherapist
time I was also allowed to go outside shattered. came into the room yelling at me for
for the first time. That was great. My being late. I got very sad and upset,
physiotherapist took me downtown On December 2nd I was discharged but felt ashamed that I hadn’t got up
Page 50 The Transverse Myelitis Association
on time. I had trouble holding the useful, if for no other reason than walk with crutches. On Christmas Eve
tears back as I went with her to get that I liked it. I managed to walk up the stairs in my
my first training session at the By the forth day I had become really home for the first time without using
rehabilitation home. This fed up with it all. I called my old the crutches. I managed without them
physiotherapist was not very good. physiotherapist and told her how when I was inside the house, but I still
Yes, she teased me and tried to make awful it all was and I cried. Then I used them when I was outside. I didn’t
me laugh, but sometimes it actually called my mother and said that I just drop them completely until after a
felt like she meant what she said couldn’t stay there anymore. She couple of months. After the Christmas
when she called me different bad came over and talked to the staff and break, I started to have physiotherapy
things. they convinced me to stay one more in my home town.
day. I was told that I wouldn’t have
When it was time for lunch I asked to spend the evening alone. Mom My biggest problem now was the
the people in charge of the food if I went home and I started waiting for bladder. I had urinary tract infections
could have something else than someone to spend time with me. But more or less all the time from the
orange juice or milk to drink, because of course, something came up and I removal of the catheter until the end
the doctors had told me that I had to spend the evening alone of February when I was put on
shouldn’t drink orange juice or milk. anyway. Furandantin (a urinary tract antiseptic
They then answered that any other medicine). That put an end to the
beverage they had must only be used The next day I had made up my infections. My kidneys and bladder
at coffee time and that I could drink mind. There was no chance that I were examined, as well as my ability
water. I was very surprised and a bit would spend another week at that to empty the bladder and it turned out
upset. At home we always had some awful place. When my that I had a certain type of bladder
sort of table beverage, apart from physiotherapist found out that I was dysfunction, where the urinary
milk. going home she got angry and told sphincter doesn’t cooperate the way it
me that if I didn’t work hard with the should with the muscles that contract
Some time in the afternoon, a person physiotherapy now I would never get to empty the bladder. This caused
came and asked me what I was doing any better. I felt guilty and got a bit retention and was the reason why I
just sitting around in the hall. I was scared, but still I was convinced that had had so many infections. About six
supposed to be at school. But no one I wouldn’t get better physically as months later, my bladder was
had told me anything about that. long I was miserable. So I went examined again and by then the
Anyway, I went with her to school. home that day and never returned to bladder function was better. This
That turned out to be the only place the rehabilitation home. Mom called meant that I could stop taking the
where I felt reasonably comfortable. the hospital and told them that I Furadantin.
The teachers there chose to encourage hadn’t exactly got on well at the
me rather than yelling at me and they rehabilitation home. It was then The last real motorial improvement
made me feel normal. decided that I should come back to occurred some time during the spring
my old physiotherapist and have two 1993 when I started to be able to
I was also supposed to take music sessions a day with her five days a move the toes on the right foot a bit.
therapy. It was held by a middle -aged week. That was truly a load off my
man. He told me to beat a few mind. Child or grown up?
different rhythms on a drum. A
couple of years earlier I had, The way back I think one of the reasons why I’ve
however, had a music teacher who coped so well with going through the
thought it was really important to At the hospital they seemed a bit experiences with TM is that I’m very
know at least five basic drum comps disappointed with me for not staying stubborn. When I want something, I
so I found the music therapist’s at the rehabilitation home, but I get it. But it wasn’t always easy.
exercises a bit simple. I told him that don’t think they understood what it There were a lot of things that the
I could play five comps and showed was like for me. I soon started to feel medical people could have done
him. Then he looked a bit offended a lot better both on the inside and on better. I was often sad or angry when I
and said that I obviously didn’t need the outside. After a few days with was at the hospital. To me that seems
any music therapy. The man just my old physiotherapist, I could normal. I mean, who wouldn’t be
didn’t seem to understand that extend my right leg against upset in that situation? Apart from
something I liked to do could be resistance and I could also start to having to deal with the pain and the
The Transverse Myelitis Association Page 51
other physical issues I also had to days later they removed the stone demand help when I need it.
deal with being away from home for a and since then I’ve had no more
long time. I had never been away infections. But as if I wasn’t tired When my problems make me feel
from home before, apart from the enough of hospitals after that, I got down, I turn to a very special friend of
times I had stayed over at a friend’s an ovarian cyst at the end of 1998, mine. He has also had TM and I got to
house for a night. My parents and it was removed with know him through the TMA. It really
couldn’t be at the hospital all the time laparascopic surgery in the autumn helps to talk to someone who has gone
so I was left alone a lot. And most of of 1999. But my problems didn’t through the same things that I’ve gone
the time, when my parents weren’t stop there. In the summer of 1999 I through. I know that he doesn’t just
there, no one really had the time to started getting problems with pain. say that he understands; he actually
talk to me or spend time with me. I My doctor thinks it’s nerve pain, but does understand. He has helped me a
felt like everybody at the hospital she isn’t sure and nobody seems to lot the last couple of years and I know
(apart from my physiotherapist) just know if it is connected to TM or not. that I have helped him a lot too. He
tried to make me suppress my This kind of burning pain is rather will always have a very special place
feelings. What they should have done, common after TM but my pain in my heart.
I think, was to try and find out why I problems didn’t start until seven and
felt the way I did. Also, when the a half years after the onset of TM, Although my TM problems do take up
diagnosis and treatment were so… Anyway, if I say that I think quite a bit of my time, I will never let
discussed I was treated like a child. If I’ve seen enough of hospitals and them take over my life. I have far too
anyone even talked to me, instead of had enough of physical problems, I many other things to think of to ever
just talking to my parents, that person don’t think you would be too be tempted to do that. I do get tired of
would explain things to me as if I surprised. the problems sometimes and I want
were a baby and didn’t understand them to just go away, but still I love
anything. But when I was angry or My life today my life and I love being alive. I have
upset or sad I wasn’t allowed to be a my family, my friends, a very sweet
child. Instead, I should suddenly be I didn’t recover completely from the boyfriend and the cutest dog and cat.
all grown up. Once when I was angry illness. I don’t have any nerve And I am only a few months away
and impatient a nurse actually yelled contact with the calf muscle and the from getting my master’s of science
at me that I should “pull myself muscle on the back of the thigh of degree in engineering physics. My
together.” I have often wondered how my right leg. Those muscles are dream is to then go on to get a PhD in
that nurse would have reacted if she atrophic. Because of this I limp a bit either medical engineering or
had been in my shoes. when I walk and I can’t run. I still scientific computing and to some day
have problems with bladder in the (far) future get married and
My medical history after TM retention and I have developed my hopefully start a family.
own technique to empty the bladder
After TM I had no real problems with as thoroughly as I can. The bladder By sharing my story with you, I hope
my health until 1996 when I got a problems are the worst of my that I can help someone just as I have
urinary tract infection again. The physical problems. I get jealous been helped by reading the stories that
problems continued and I also got sometimes of people who can just go some of you out there have shared
blood in the urine; so much in fact into the bathroom to empty the with me and all other TMA members
that the urine was all red. In the bladder and then be back out again in previous newsletters. I hope that
autumn of 1997 I got another urinary within a couple of minutes. When it you are all as well as can be expected
tract infection and started to get blood comes to the pain problems, I am and, of course, I hope that, with the
in the urine pretty often. I went back still fighting to get help. I have had help of science, there will one day be
and forth to the local hospital, but to fight before to get help from the a cure for all of our problems. It may
didn’t get any help until after a few medical people. I don’t know why happen, it may not. I don’t know. The
months. By then I was really scared some of them have such a hard time important thing is that we mustn’t stop
that there might be something understanding the needs of their hoping, but also that we mustn’t forget
seriously wrong with me. In the patients. Sometimes it is tempting to to make the most of our lives while
beginning of 1998 I underwent a give up. I admit that. But if I don’t waiting for a possible cure. We may
cystoscopy and the doctors found a fight for my needs, then who will? I have our problems, but life still has a
bladder stone that was a couple of am an expert on my body and my lot of great things to offer. So, come
centimeters in diameter. A couple of problems and I have the right to on and let’s make the most of it!!!
Page 52 The Transverse Myelitis Association
Since the last newsletter I have no change.” However, he reports UK Support Group
moved house. My new address and that, “I have been having Reflexol- Geoff Treglown
phone number are at the end of this ogy treatment for the past few
article. My apologies if this has made months and my walking ability im-
it difficult for you to contact me. My proved about the time I started it.” I 015394 34677
e-mail address has not changed. have heard other positive comments geoff.treglown@btinternet.com
about reflexology from the Telford
I am aware that some of you have ex- Group. California TM Support Group
perienced problems using a credit Cindy McLeroy
card to make donations to the TMA. One of their members has also heard
Helping.org has for a couple of of a recipe for arthritic relief. The Hi, everyone. My name is Cindy
months been accepting USA ad- logic of the recipe comes from Bibli- McLeroy. I have undertaken the role
dresses only. You can now make cal times when juniper berries were as co-coordinator for establishing TM
credit card donations from the UK us- thought to have healing properties. support groups in California. The
ing CharityWave.org. There is an arti- The recipe requires large golden other co-coordinator is Debbie Capen.
cle about CharityWave and online do- (light) California raisins to be soaked Most of you probably know Debbie.
nations in this newsletter. Please try it in gin (cheapest) in a shallow dish Debbie serves on the TMA board as
out! until the gin has evaporated. Gin is Secretary. She has been such a
made from juniper berries and natu- support in all the symposiums the
I am often asked by TMA members ral grains. The process takes about a TMA has sponsored. Most recently
from the UK about the availability of week after which you are supposed she worked hard on the Children’s
“alternative treatments.” With any to eat the raisins at the rate of nine a Workshop in Columbus, OH.
condition which claims to have no day. Improvements are apparently Actually, with Debbie we get a 2fer.
cure, a search for alternatives is al- noticeable in about a month. (NB al- Her husband, Michael, is right there to
ways attractive. Two therapies which cohol may not be appropriate in support our group. I am hoping to
can assist mobility can be found in combination with other medicines). have the first meeting in September.
the Yellow Pages. Horse riding for
the disabled (look up Riding Schools) I have also come across A Good Even though I have been a member of
will be suitable for many, even those Health Guide: Stopping Restless Leg the TMA since its inception, I have
in a wheelchair. It can be very helpful Syndrome. RLS is similar to the never shared my story. Perhaps
with balance problems and if properly twitching limbs that many TM suf- before I write about our hopes for
organised it can provide an enjoyable ferers experience. The condition is California support groups, I’ll tell you
social outing. The use of hydrother- also known by Ekbom’s Syndrome how I got started on the Transverse
apy pools can also provide a social and PLMS (periodic limb movement Myelitis path.
outing as well as good mobility ther- during sleep). Anyone suffering
apy. Pools are advertised in the Yel- from these conditions might find the In October of 1992 I was scheduled to
low Pages under Swimming Pools and 90 page simple booklet helpful. It go to New Orleans on a business trip.
under Health Clubs. You need one can be obtained from The Bristol The Thursday before I had a deep root
that has a physiotherapist in atten- Group, 36 Stephenson Road, Totton, canal done and the specialist advised
dance rather than the type with a Southampton SO40 3YD; price me that after dental work this
beautician! £11.90 including p&p, payable to extensive I could experience
Bristol Health. “something” in other parts of my body
I have been experimenting by attend- that appeared unrelated to the root
ing a Chinese Health Doctor but sadly Have you tried any alternative treat- canal. He gave me a prescription for
after eight weeks and a total of five ments? Has anyone had any experi- antibiotics just in case. That weekend,
different concoctions, we agreed that ence of acupuncture? Please let me I went to breakfast with my parents
he was not able to do anything for know so I can report in the next but had no appetite and just felt like a
me. Meanwhile another TMA mem- Newsletter. real slug. We then went to check out
ber (from the Northampton Group) Contact details: the local garage sales. I picked up a
has also been experimenting with Geoff Treglown heavy crock and as I stood up, it felt
Chinese medicine but he tells me, 8 Gale Park, Ambleside like some one punched me in the back
“After much testing and alternate LA22 0BN hard enough to knock the wind out of
medicines, I’m sad to say there was UK me. At that point I went home and
The Transverse Myelitis Association Page 53
laid down. The next day, Sunday, I attending the meetings and she came office was big enough for me to
went to a concert in the park. to my room as I was being put on a maneuver around in easily in my
Normally, after the concert, my friend stretcher. I thought I would be taken wheelchair. I went back almost
and I would walk around the lake four to the hospital, given some magic immediately to 10-12 hour days.
or five times. My back hurt so badly, injection, feel great, slip into my They were pretty draining, but I had
I couldn’t make it once around. levis and head back to my meetings. found that distraction was better than
Not to be. any of the pain meds I had tried. I
Monday I hopped a plane to New worked for seven years and finally,
Orleans. This trip I was staying in the due to changes where I worked and
French Quarter at a beautiful hotel on also the fact that I was just so
Bourbon Street. I made the meetings fatigued, I left the company where I
on Monday afternoon, all day had worked for 32 years.
Tuesday and Wednesday. I had
worked with the other folks in the Whoa, that was a long way to get to
meetings for many years. We worked SUPPORT GROUPS IN
for the same company and over the CALIFORNIA.
years had become good friends. We I was taken to Tulane University
would work hard all day and then Hospital, an excellent teaching Since I stopped working at a paying
spend the evenings together. hospital. There I suffered through job, I have become involved in many
Wednesday night I had dinner out at the numerous tests most of us have volunteer jobs. I am on the board of
Lake Pontchartrain where I enjoyed experienced. I remember having two nonprofits and have several really
fried calamari (some blamed this for four MRI’s, two spinal taps, all the fun projects I work on each year. One
causing TM). Sometime, not long tests for MS, etc. After eight days I of the boards I serve on is for a
after midnight, I woke up and felt was told I had Transverse Myelitis. nonprofit agency. It is the largest
nauseated. I got up, threw up and I have reviewed my medical records independent living center in
went back to bed. from Tulane and they suspected TM California. While it is a wonderful
from the time I entered the ILC, it serves all disabilities. I have
Thursday morning I was up early. emergency room, where, by the way, decided that I really want to direct my
About 6:30AM I jumped into the I spent 12 hours. I received very energy, such as it is, to The
shower. While shampooing my hair, little information on TM and most of Transverse Myelitis Association. I
my legs started feeling weak and my questions were unanswered. can do this by working with Debbie
“squashy.” They felt like they would Capen to start support groups in
not be able to hold me up much After 11 days at Tulane, I was California.
longer. I quickly rinsed the shampoo transferred to St. Jude’s Hospital in
out of my hair and sat on the edge of Fullerton, California. I arrived by Debbie and I have become great
the tub. I never did step out of that way of a medical air flight. It was friends and we have agreed to work
tub. Those moments in the shower supposed to be on a Lear jet; instead together to start support groups in
were the last ones I stood on my own it was a prop job. Try that for nine California. We both live in Southern
power. I managed to get on the hours lying down with nowhere to California about 80 miles apart.
bathroom floor. Luckily, there was a move or unable to turn over. Not Initially, our focus will probably be
wall phone in the bathroom and I was fun. I was at St. Jude’s for six weeks just the Southern California area.
able to knock it off the receiver and for physical, occupational and California is so large that any one
ask for help. I was also lucky that I recreational therapy. I also had the wanting to help, please let us know.
was able to reach my nightgown and tests repeated that had been done at We had some spirited discussions of
get it on before hotel security arrived Tulane. After leaving St. Jude’s, I what folks were looking for in a
to break the locks on the entry door to did about three months of outpatient support group at the TM California
my room. I was on the floor, with no therapy. Conference in June. We will try to
movement or feeling in either leg, so I incorporate as many ideas as we can.
was unable to open the door for help I returned to work seven months Saturday seemed to be the best day for
as the latches were up high. later. My company had made some most people so we are trying to find a
Strangely, I was not scared. At that modifications for me, mostly parking place that is easy to get to and that
time I was not in pain. I managed to and entrance to the building, plus, of will provide a room on a Saturday at
get in touch with one of the ladies course, the bathrooms. Luckily my no charge. Originally, I mentioned
Page 54 The Transverse Myelitis Association
that we could probably have afflicted with Transverse Myelitis at capped persons at restaurants and
something ready by August, but it the age of twelve, went through a other public facilities.
will have to be moved to September. long recovery period and still man-
aged to obtain this high academic We ended the meeting by distributing
If you are interested, please let one of degree. literature compiled by TM members
us know. I can be reached at (714) Mrs. Vilma Mithchell and Ms. Susan
638-5493 or email at The discussion centered on several Tilotta. Our special thanks to them
cindymcleroy@sbcglobal.net. themes, the most prominent theme for the wonderful job they did in col-
Debbie can be reached at (909)658- concerned the stigma of having a lating the important information
2689 or dcapen@myelitis.org. I will disability and what the members which was obtained from the Johns
also put out a notice on the TMIC list. thought having a disability meant to Hopkins website. Each attending
Debbie and I hope to get to know all them before and after they developed member received a compilation of all
of you in California. Transverse Myelitis. We compared the lectures and events that were pre-
and contrasted the pre-conceived no- sented at the symposium. We sched-
Since the publication of the last TMA tions about how we felt about people uled the next meeting for June, 2002.
Newsletter in October 2001, we have with disabilities versus our current
planned and organized the sixth and thoughts about the reality of our own At the seventh meeting, June 22nd,
seventh New York State Support disabilities from TM. An interesting 2002, we were privileged to obtain as
Group meetings which were held re- question posed by Dr. Klopchin con- our principle speaker, Dr. Shariq Ali,
spectively on November 8th, 2001 cerned the perceptions and thoughts Ph.D., Assistant Professor, Depart-
and June 22nd, 2002. As with prior we had about, for example, persons ment of Pharmacology, Toxicology
meetings, they were held at Ben’s in wheelchairs, prior to our illness, and Medicinal Chemistry, Long Island
Delicatessen and Restaurant in the did we feel that they were lonely, de- New York State Support
Bay Terrace Shopping Mall, Bayside pressed, lacked self-esteem, were Group Meetings
Queens. The room we reserved at the poorly dressed, etc. A lively discus-
Pamela Schechter
restaurant provided us with the pri- sion ensued and most members ran
vacy and the time we needed (12noon the gamut from all of the above, add-
to 4PM) to cover our general purpose ing more to the list, to a more opti-
and agenda. mistic approach to those in wheel- University, Brooklyn, NY. Dr. Ali’s
chairs. We also discussed the possi- credentials are impressive. He ob-
Common to both meetings were the bility that these pre-conceived no- tained a B.S. degree from Long Island
amount of attendees, which included tions may reflect a societal or cul- University and Doctor of Philosophy
members, families and friends, and tural bias attached to being disabled. degree in pharmacology from New
totaled approximately twenty-two to York Medical College in 1999. Dr.
twenty-four persons. They traveled We discussed the Americans With Ali has done biomedical research at
from all parts of the metropolitan area Disabilities Act of 1990 and how Mount Sinai School of Medicine. Dur-
including Long Island, Westchester frustrating it was being disabled in a ing his research career, Dr. Ali has
County, New Jersey and New York non-disabled world. For example, published extensively in leading peer
City. some of the members had attended reviewed scientific journals.
the July 2001 2nd International
All areas were readily accessible to Transverse Myelitis Symposium, co- Dr. Ali’s presentation was a basic and
the restaurant. The sixth meeting on sponsered by Johns Hopkins Univer- general overview of the common
November 3rd, 2001, again was sity Hospital and The Transverse drugs that TM members use, the prop-
chaired by Ms. Hope Klopchin, our Myelitis Association and held at the erties and possible interactions be-
principle speaker and leader of group Holiday Inn Hotel in Baltimore, MD. tween the use of multiple drugs. He
discussions. At the meeting, Ms. The general opinion was that the ho- started the discussion by listing the
Klopchin was officially recognized as tel offered a number of amenities for possible causes of TM. They included
Dr. Hope Klopchin, having success- the disabled, but fewer rooms that viral infections, such as pneumonia,
fully completed her doctorate in were handicapped-accessible were that may trigger an abnormal immune
counseling psychology at the State available to them. Other members response leading to inflammation of
University, Buffalo, NY. This degree who did not attend the symposium the spinal cord. Other possible causes
is a tribute to Dr. Hope Klopchin’s te- also related experiences of less than were vaccination as an example of a
nacity and courage, because she was friendly accommodations for handi- deficient immune response and an-
The Transverse Myelitis Association Page 55
other cause might be a lack of blood sion concerned new drugs being Myelitis Association. His suggestion
supply to the affected area causing in- used for the treatment of TM. The was welcomed by all. Both meetings
flammation. He stated that the causes most promising and prominent drug were considered successful in provid-
of Transverse Myelitis can be idio- Dr. Ali mentioned was called Fam- ing important education and informa-
pathic (unknown), as well. Dr. Ali pridine-Sr (4AP). He cautiously re- tion and offering material for future
briefly outlined some of the symp- ferred to the drug as a potential cure. discussions.
toms of TM which included weak- According to Dr. Ali, the phase two
ness, pain, sensory alteration or blad- clinical trials of Fampridine have Ohio Support Group of The
der or bowel dysfunction. He ex- been completed for chronic spinal Transverse Myelitis Association
plained that the first time therapy for injuries (which includes Transverse Stephen Miller
an acute attack of TM was intrave- Myelitis and Multiple Sclerosis). Pa-
nous steroids. He stated that the tients in these trials have shown Inaugural Meeting
problem with using steroids is that marked improvements in a variety of
they decrease the immune response. functions, including decreased spas- The inaugural meeting of the Ohio
Therefore, you are more prone to de- ticity, improved sexual function and Support Group of The Transverse
velop a secondary infection. He also increased bladder and bowel control. Myelitis Association was held
discussed the risks versus the benefits Fampridine enhances conduction in Saturday May 4, 2002 at the Radisson
of using this drug. Another drug used damaged nerves and is the first com- Hotel in Worthington, Ohio. There
in acute TM is Immunoglobulin ther- pound that has shown to restore were 14 people with the TM diagnosis
apy. This treatment is usually re- some neurological functions in pa- present along with several of their
served for patients that are responding tients with spinal cord injury. Dr. family members and friends.
poorly to steroids or recurring attacks. Ali described how it works. Fam- Discussions were held regarding ways
Dr. Ali discussed the use of Plas- pridine predominantly blocks spe- to organize the group, its meetings,
mapheresis. This is a treatment in cialized potassium leaks from nerve goals, social events and networking
which blood is taken out of the sys- axons. When the axon is demyeli- amongst both current and new
tem, purified and put back in the sys- nated after injury, potassium chan- members to the TMA. The afternoon
tem. The premise of using this nels are exposed and leak potassium went by quickly and new friendships
treatment is to remove substances that resulting in short-circuitry of the ax- were formed during the time together.
cause inflammation. Other drugs ons. By blocking this leakage, Fam- As a result of the first meeting, a
used to treat TM include Neurontin, a pridine permits the axons to transmit committee was developed to welcome
drug that suppresses pain and tingling nerve impulses again, even in the de- new members, develop an Ohio TM
sensations. It helps with symptoms of myelinated state and restoring some newsletter, an Ohio TM web site, and
neuropathic pain. He explained that neurological function. Dr. Ali’s ex- to organize and plan future meetings
anti-depressants are also used to re- planation of how this drug works and events.
lieve the symptoms of pain. Anti- and what it can mean was received
convulsants, for example, Tegretol, with extreme interest and enthusiasm September 14 th Meeting
are used for neuropathic pain and by the attendees, because it offered
sometimes for spasticity. them hope. The Fall Meeting gathered at the same
location on Saturday, September 14
Dr. Ali mentioned that a common The final segment of Dr. Ali’s lec- and there were over 40 in attendance,
side effect of anti-depressants was ture was a cautionary warning about 16 who share the Transverse Myelitis
dizziness. There are a number of anti- using Valium or Xanax, because diagnosis. Lunch was served, stories
anxiety drugs, such as Clonazepam, these drugs can become habit- were swapped and old friendships
that are used to treat neuropathic pain. forming. However, Ambien, a drug were renewed and new ones
A drug called Baclofen is used to which might be a good alternative to developed as everyone enjoyed the
treat spasticity, a symptom of Trans- Valium or Xanax is not habit- time together.
verse Myelitis. Other drugs used in- forming.
clude, Ditropan, commonly used to After lunch, the first of two guest
control bladder dysfunction and Clo- After the meeting adjourned, Dr. Ali speakers was introduced and took the
nidine, a drug used for neuropathic said that he would be pleased to podium. Dr. Joanne Lynn of The
pain. serve in an advisory capacity for the Ohio State University and The
New York State Transverse Myelitis Transverse Myelitis Association
The final portion of Dr. Ali’s discus- Support Group and The Transverse
Page 56 The Transverse Myelitis Association
Medical Advisory Board addressed Ohio Support Group page on the Kathik44691@yahoo.com
the group about what Transverse TMA website for additional (330) 345-1625
Myelitis is, the common theories information regarding future events.
which the medical community Stephen Miller – Jamestown
believes could be it’s cause and some The meeting was scheduled from smkmiller@erinet.com
of the therapies available for 11:00am to 3:30 pm; however the (937) 453-9832
treatment of symptoms. Dr. Lynn last of us didn’t leave the hotel until The Virginia TM Support Group
also spoke in depth about the nearly 5:30. It was a great day with started out with three “TMers” and
mechanics of the central and great food and even greater their spouses meeting for lunch in
peripheral nervous system and company. Thank you to the Williamsburg, the colonial capitol of
explained the “why” behind many of Radisson Hotel for their Virginia. Having corresponded only
the long-term symptoms TM is professionalism and warm via email, my husband and I sat in the
common for, such as spasticity, hospitality and to those who had a lobby of The Williamsburg Lodge,
sudden involuntary motion of affected hand in organizing this event. Your one of the restaurants in the restored
limbs and confusing sensations like a efforts are certainly not without area, looking around for others who
feeling of wet or burning skin. An in- notice and we extend our deep looked like they might have TM. I
depth oration regarding the gratitude. admit this was a weird, unfair, perhaps
relationships between TM and other irrational approach. I didn’t look any
neurological conditions was also Be sure to look at the Ohio Support different; why would they. Ron knew
given. The similarity between Group web site by following the that I used a cane and I knew that he
multiple sclerosis and TM was did. We both used walkers off and on.
discussed and Dr. Lynn fielded Jesse used a walker. We found each
numerous questions from those other.
attending. It was a very beneficial
time for all and we are very grateful After being seated for lunch, we
for Dr. Lynn’s time and efforts on the talked about TM, our families, and
behalf of our group. general stuff. Our waitress was great.
The food was good. The atmosphere
Next, Sandy Siegel, President of The “support groups” link from the was wonderful. So, the six of us sat
Transverse Myelitis Association took TMA’s main web site: there for four hours talking about
the stage and spoke about the history www.myelitis.org. when TM affected us and how, what
of the organization, his efforts and we missed the most, and how it wasn’t
successes in fundraising, the The Ohio Support Group Committee fair. The two of them didn’t have the
Children’s & Family Workshop is comprised of individuals same “Why me? This really isn’t fair”
which took place in July, 2002, as diagnosed with Transverse Myelitis period which I was still going through
well as some of the upcoming plans and living in the state of Ohio. If you after nearly five years! They appeared
and events the Association is have any questions, would like to me to have adjusted to their TM
developing for the future. additional information about the limitations more readily than I. Ron
Ohio TMA Support Group, or have and Rachel made reference to the fact
Finally, the group discussed possible an idea for a social event or that I was their daughter’s age and that
fundraising opportunities and various fundraising opportunity, please I had missed out on so much in my
ways that Ohio can get involved to contact one of the committee life. So what if I had? I can’t change
support the TMA at large with members. it. We agreed to meet again after the
volunteer time, writing and editing for Margaret “Maggie” Miller – holidays.
the bi-annual newsletter and aiding in Columbus
logistical issues associated with magmil1336@aol.com Our second meeting ended up being a
mailings and information distribution. (614) 486-2748 lunch with Ron and Rachel, Bill and I.
Additionally, the Ohio TMA group is We learned that discussing bodily
in the early stages of planning social James Tolbert, Jr. - Cincinnati functions in public was not a good
events in and around the state for Jimyt2@adelphia.net idea. Other than that, things were
members not able to travel or (513) 724-1940 okay. The discussion at this meeting
otherwise attend the meetings in focused on the caregiver. It was good
Worthington. Please check in to the Kathi Kulow - Wooster for Bill and Rachel to have time to
The Transverse Myelitis Association Page 57
talk. I know that it is difficult to care gorgeous. John volunteered to do the pleasant or bearable, to give assistance
for persons with a chronic illness. As planning and organizing for the May to, and to keep from losing courage.”
a nurse, I used to see it when I meeting. We discussed ways to All of these meanings make the two
worked. I could never see it from reach more people in Virginia since words “I’m new” take on more
Bill’s perspective anymore than he Virginia is such a large state. This is significance each and every day in my
could see TM from mine. It was good something that we are still working life.
for us to have the opportunity to talk on. Support is important. People are
with the two of them on a focused important. Numbers are “Trapped in a sleeping body” was
topic. It is really amazing how TM insignificant. Webster’s defines a going to be the name for the memoirs
affects everyone within a family or group as “two or more individuals I started writing ten years ago when I
within a group of friends. At times, it assembled together or having some got TM. At that time, 1992, I had just
really feels like TM consumes unifying relationship.” This is US. turned twenty years old, was in my
everything around you even though fourth year in college and had two
you promise yourself that you are Please send me an Email or call, if part-time jobs. I had everything going
beyond that. The caregiver support is you are interested in getting involved for me.
essential. The conversation of that in our group. I know that some
day was extremely helpful not only to people prefer quiet, private ways of One day I got the chicken pox, the
me but to Bill. I had to work at kind you can hardly notice, because
making him see that I would not want Virginia Support Group there were just a few marks, which, at
him to have TM as a way of making Pamela New first, I thought was acne. A few days
me better. No one should ever have wnew@erols.com later I had the strongest headache
this illness. This seemed to be a ever. I could barely open my eyes.
common theme at future meetings, as Three days after dealing with the
well as emails received after the dealing with illness. chicken pox symptoms, I stopped
meeting. urinating and was walking really
Planning for our July 27 meeting slowly and with back pain. That
By March, we had a total of 20 at our was a little more difficult for me night, which marked the beginning of
meeting! This was pretty exciting for than previous meetings. I wasn’t a whole new meaning of life for me, I
all of us. Email contact is nice for the sure what the difference was until had the worst pain ever in my lower
day- to-day, I need a hug, are you my son asked me if TM was back. My parents suggested to me
there communications. This meeting hereditary. I think that his fear in that I sleep on the floor to ease the
allowed us to put faces to spite of his knowledge of TM really backache. The next morning I
Cookielady11, jnsmith, rhutton6, put things into a different couldn’t get up on my own. My legs
MillerGH. The computer age is perspective for me. This is a child were weak and I still couldn’t urinate.
fascinating, if only to connect us to who has had to grow up very fast
friends we haven’t met. Our set topic over the past five years since my TM I was rushed to the hospital and in the
on pain management was mentioned first appeared in May 1997. He just emergency room I was diagnosed with
briefly at my end of the table and I turned 12 in March 1997. He now Guillian-Barre. They then transferred
believe I may have heard it at the knows enough about TM to manage me to another hospital where they said
other end, as well. I don’t think pain fundraisers, to educate his teachers that they had the proper equipment for
was a problem for many of us on this and bosses, RN’s in emergency me. On our way to the hospital, the
day. We were just a group of friends rooms, and emergency room doctors ambulance had mechanical problems
with their spouses, having lunch and who know little about it. He and his and a second ambulance was called.
getting to know one another. I was in brother and sister know how to care The paramedic of the first ambulance
awe how the two words, “I’m new” in for mom, which side is numb, which quickly began to work on it, and by
a subject line in an email could go so car the walker should be in, when to the time I was almost in the second
far. These are the words in the subject help with cooking and when not to ambulance, he had fixed it and
line of the messages sent to me by help. They know more about insisted on taking me. He was so
new members from the Virginia neurology than any kids should. This determined that he drove me to the
Support Group. We decided our next is where a support group comes in. hospital. Once we got there, I needed
meeting would be in two months. This helps me help them. Webster’s to be catheterized urgently, because
dictionary defines support several my bladder was full. But he requested
May in Charlottesville; how ways. These include, “to make more a time alone with me to pray. I am
Page 58 The Transverse Myelitis Association
Catholic, but it was the first time I able to take my usual steps standing the condition. I ended up with two
had heard the phrase, “faith moves in between the bars. Who would total hip replacements. I walk now
mountains.” I have never seen the know; faith does move mountains. pain free and even cross my legs
paramedic again, but his better than before. By the way, the
determination and words have been After thirty-two days in the hospital, first surgery I had with the so-called
with me always. I finally went back home. I would doctor was unnecessary, because this
wake up in the mornings and listen procedure is obsolete for this
After several examinations, the to a song by Michael Bolton, “When condition.
neurologist diagnosed TM while I’m back on my feet again.” I would
everyone else insisted that I had go for physical therapy three times a A few months later I was diagnosed
Guillian-Barre. Immediately, they week and the other two days my with epilepsy. I was on several
administered intravenous high brother and boyfriend (who is now medications for some time, but
dosages of cortisone. By the way, my husband and has been an angel currently I am seizure and drug free
dealing with that moon face was not sent from G-d) would take me to the for two years now.
easy. Shortly thereafter I began pool for more therapy. My legs
physical therapy. I remember the day started getting stronger, although my For a long time I lived feeling like I
I took my first steps. I was in the bladder and intestines were not was a victim and that people had to
rehabilitation area and was the functioning normally. I was able to feel sorry for me. And since that was
youngest one there. I was placed in finish school the next semester and what I projected, that is how people
between the bars. I moved my leg got a bachelor’s degree in journalism treated me. Also, a big issue that I
forward and took that step and did the and went back to work. needed to deal with was the fact that
same with the other leg. Everyone in the people that once were my friends
the room applauded me. It was the My Story and Announcing a never visited nor called when I was
greatest feeling. TM Support Group in sick. Some even stopped talking to
Puerto Rico me. They made me feel as if I did
I was doing pretty well with my legs, Yvonne Lugo something wrong. The only support I
but two weeks after being had was from my family and relatives.
hospitalized they lowered the But deep inside I did not like feeling
cortisone dosage too much and I victimized. I was a fighter. So, I
suffered a relapse. It was literally In 1994 I was diagnosed with decided I needed to change. I started
beginning from scratch, being bathed avascular necrosis in my left hip as a reading motivational books which
in the bed, unable to move my legs; it secondary effect of the high dosages helped me regain my self esteem and
was devastating for me, as well as for of cortisone. It was very hard for my confidence. I began doing exercises
my family. loved ones and for me to deal again and weights and I learned to extract
with the struggles of walking, only from the not-so-good experiences the
That day after the relapse, when I got this time with pain. A so-called positive side of them. Someone once
to PT, my legs wouldn’t respond. doctor did a drainage in my hip and told me that all experiences are
Next to my mother, who was always when I walked again after four blessings. The not-so-good ones are
with me, sat a lady that took a little weeks on crutches, the pain was still part of our development and formation
plastic saint from her purse. After there. He told me to go to my and the good ones are happy
watching me struggle to get my legs neurologist, because he didn’t know moments, but both are necessary for
moving with no results and my eyes what was wrong. For two years I us to be who we are. Incredibly, my
full of tears, she told me that once she walked with a limp, because of the body as well as my mind responded.
had been very sick and someone else, unbearable pain. I had several Since my muscles are much stronger, I
already cured, gave it to her with the doctors tell me that I would never be can walk at a faster pace, my bladder
condition that when she got well, she pain free and that I had to learn to has improved, and I feel more in
had to pass it on. So my crying live with it. I used a cane for five control of myself and independent.
mother came to me and handed me months. I finally found a wonderful
the little saint. I thought maybe it doctor that was concerned enough Today, I have a full and normal life. I
was worth trying, so I took it in my for my quality of life. work, travel and do things I once
hands and started praying from the thought I would never do again. I still
bottom of my heart. Immediately, my By this time, I was twenty-five and have my neurogenic bladder. I have
legs started moving and I was even both hips were bridled, because of rare involuntary movements and
The Transverse Myelitis Association Page 59
sensorial patches in my legs and I
have severe constipation due to
spasticity in the puborectalis muscle.
While I was searching for information
on my symptoms, I came across the
TMA. I was thrilled to read about it
and to discover that there were others
like me.

Today, I am very happy to announce


that Puerto Rico will have a support
group. I have started, with the
guidance of Sandy, searching for TM
patients and distributing
informational brochures to medical
offices, PT centers and everywhere I
can imagine. My father has a printing
shop and he was kind enough to let us
print the TMA brochures in both
English and Spanish free of charge.
My brother did a great job making
this happen. Jim has posted the TMA
brochure we produced in Spanish on
the website. I really hope that we can
make a difference in the lives of those
patients affected with TM. I
encourage all those Puerto Ricans to
reach out and contact me. We can all
learn from each other.

God bless you all,


Yvonne Lugo
(787)312-9711
myelitispr_yvonne@hotmail.com
Page 60 The Transverse Myelitis Association
check or checks made payable to The
Raising Funds and Awareness Transverse Myelitis Association.
Two Hop-a-thons and a Hoop-a-thon Please write ‘Ann’s Quilt’ on the
checks. My address is identified
below.
An Opportunity to Win Ann’s
Beautiful Quilt Ann presented her finished quilt to In order to make this easier for you to
Debbie Capen the TMA at the Second International obtain tickets to sell or purchase, we
TM Symposium in Baltimore, MD will also have a link set up at the
in July 2001. We have discussed TMA website. All that you will need
Many of you have had the privilege how we could best offer this quilt for to do is print the tickets from this link
of meeting Ann Moran from Ireland. sale to the maximum number of and do the same with these tickets as
She has had transverse myelitis since TMA members, and have decided you would with the ones that I will be
1990, being paralyzed from the waist that this would best be done by distributing. All tickets will be put
down. Despite physical disadvan- announcing it in this newsletter. We into a container, and there will be a
tages, she takes on all challenges with are going to offer this beautiful quilt drawing for the quilt. This drawing
a very contagious enthusiasm. Ann by means of selling raffle tickets. will take place at a meeting of TMA
has traveled alone to the United States This will be a worldwide sale, but members in Southern California on
to attend both TM International sym- the sales of the tickets must be Saturday, May 31, 2003. To be
posiums, and another trip just for en- presented in US dollars. included in the drawing, I must
joyment. She has started a TM sup- receive your stubs by Saturday, May
port group in Ireland, has been inter- If you would like to see a picture of 24th.
viewed on the radio to promote the quilt, you may visit the TMA
awareness of TM, and this past sum- website at www.myelitis.org/quilt. If you have any questions, please
mer Ann single -handedly organized We will begin selling raffle tickets contact me either by email, letter or
an Information/Awareness day on immediately. The purchase price of telephone. Please, if you have access
July 5th with Dr. Douglas Kerr of the the tickets will be $2.00 for each to a computer, look at the picture of
Johns Hopkins Transverse Myelopa- ticket, and three tickets for $5.00. Ann’s quilt. It truly is beautiful. We
thy Center as a keynote speaker. The proceeds from the sale of the thank Ann for all of her hard work in
tickets will be donated to the TMA putting this together and we thank all
As many of you also know, Ann for operating costs. of the people that contributed their
started a project that she hoped would squares.
ultimately promote awareness of TM, This would be a great opportunity
would be a valuable keepsake for for those of you in church groups or Deborah Capen
somebody to hand down to loved other clubs to sell tickets to members P.O. Box 2084
ones for generations, as well as raise of your clubs and even members of Hemet, CA 92546
funds for operating costs of The your community. If you would like (909)658-2689
Transverse Myelitis Association. to receive quantities of tickets for dcapen@myelitis.org
Ann is a remarkably talented seam- selling, please contact me via email
stress and loves to make quilts. She at dcapen@myelitis.org. I can also Hello. My name is Kate Harris. I am
belongs to a quilting group in the be reached by telephone at (909)658- ten years old and I live in England.
town where she lives. Ann posted a 2689. You may also mail me a My brother, William, got Transverse
message to the TMIC list of her inten- request. My address is identified Raising Money for the TMA
tions to start this project, and asked below. I will be happy to send you
with Friendship Bracelets
for people to help her by making quilt batches of tickets. Once you sell
blocks and sending them to her. The Kate Harris
them, please have the person buying
outcome was that she received blocks each ticket fill out the stub with their
from Australia, Canada, the United name and contact information and
States and her own contributions. return the stub to you. Have the Myelitis when he was six years old; he
Once she received the blocks, Ann buyer keep the larger portion of the is now 12. During the summer term I
put them together to make a beautiful ticket. When you have completed decided that I wanted to raise money
“TM Quilt.” the sale of all of your tickets, please for The Transverse Myelitis Associa-
send the stubs to me along with a tion to help William and others like
The Transverse Myelitis Association Page 61
him. I made 70 friendship bracelets Transverse Myelitis Association. picture … we just need your help in
and my friends also made some, so in spreading the word about this very
total we had 120. We sold them one We won't stop until we have a cure - worthwhile fund-raising activity. It is
lunchtime at school together with it is the least we can do for our dear, amazing how many people you can
candles that I made out of beeswax sweet Rachel as she struggles daily reach if you simply send an e-mail to
and 90 cakes. If you don’t already with the effects of TM. everyone in your address book or
know, friendship bracelets are made include a short note in your holiday
from different coloured threads The Reading for Rachel program cards, for example.
woven/plaited together to make works like this. Children are
brightly coloured bracelets that you challenged to read as many books as In addition, we would like as many
give to your friends. We made £150 they can during a certain time period school systems to get involved in the
altogether. We really enjoyed making (week, weekend, month, etc.) They Reading for Rachel Program. It is
all the things for the sale and organis- then get sponsors who pledge and particularly effective if students can
ing it all ourselves. pay a certain amount of money for relate to this illness because TM
each book they read during this affects a family in their school. For
Reading For Rachel: How You period. When they are done, they example, last year, Reading for Rachel
Can Help collect the tax-deductible was promoted at Worthington Estates
Cathy Dorocak contributions from their sponsors Elementary School in Worthington,
Cathy@ReadingforRachel.org and send it directly to The OH. Pauline Siegel (who has TM)
Transverse Myelitis Association, teaches 2nd grade at this school. It was
referencing "Reading for Rachel.” It enormously successful because the
is that easy and it is such a children learned about the medical
wonderful learning experience in so condition that affects one of their
many ways! teachers at school and this was the
connection to Rachel. All of the
All of the material to learn about and students watched the video of Rachel
participate in the Reading for Rachel and Pauline was able to share her
program is located on our website: story as well. Because of the success
www.ReadingforRachel.org or via a of the program at Pauline's home
link from the TMA website at school, it will be introduced to all of
www.myelitis.org. It includes a the elementary schools in the
letter from Matthew and Kevin that Worthington school district this year!!
talks about Transverse Myelitis and So please take the time to talk with
(440)572-5574 how it affected Rachel from the teachers, school administrators and
beginning to where she is today. In PTA's regarding this activity. Many
When Rachel first got sick on addition, children will be able to school systems have "Right to Read"
October 9, 1999, we were in such a print off pledge and sponsor forms, weeks and this is a good activity to tie
state of shock and sadness for our reminder notices/receipts describing into the events of that week.
baby girl. She was only 6 1/2 months the tax-exempt status of
old when TM struck, right when she contributions, and bookmarks to help In our particular school system, we
was just beginning to become mobile. them keep track of the books they have designated March as "Reading
Life had been so good, and overnight read. They will also see pictures of for Rachel month" since it is Rachel's
all that changed. Three years ago, as Matthew, Kevin and Rachel and they birth month. Please note, however,
a 1st birthday present for their sister, can even watch a short video clip of that contributions for Reading for
our sons, Matthew and Kevin (ages 6 Rachel in action! Rachel are gladly accepted throughout
and 4 at the time of Rachel's illness), the year. In addition, Reading for
thought of “Reading for Rachel", Here's how you can help! We would Rachel contributions have come from
where all funds collected would go like to get as many children affected a number of other sources and I would
towards research to find a cure for by TM in some way to get involved. like to share a few of those with you.
TM. This continues to be our gift of They can have TM or they can be The possibilities are endless, but the
hope to her since this has become our the child, grandchild, sibling, niece, end result is the same; money to fund
annual fund-raising event for The nephew, neighbor or friend, etc. of TM research.
someone who has TM. You get the
Page 62 The Transverse Myelitis Association
• Monetary contributions (not tied Rachel's Grandpa made of everyone in the TM community.
directly to any reading activity) birdhouses, sold them, and all of
have been received from the contributions were sent to As a monthly award winner, Cathy is
individuals and organizations, Reading for Rachel! now in the running for Volunteer of
including PTA units. • Memorial Contributions - the Year; the award for this honor
• Contributions from pre-schools contributions to Reading for would mean $2,500 for the Reading
were made for every book that Rachel have even come from for Rachel Fund of the TMA.
was read to students during a people in memory of someone
particular time period. who recently passed away. You go, girl!
• Individuals have sponsored our
own children's reading efforts Thank you in advance for helping us It is a tradition at St. Paul’s Nursery
from around the world. This promote Reading for Rachel in School to have a hop-a-thon in April
year, we will read a total of 93 whatever way you can. Please of each year to raise money for a
books - (one book for Matthew, contact me if you have any questions charitable cause. The 3- to 5-year-
Kevin and Rachel for each of the or need help in any way. olds who attend St. Paul’s select the
31 days in March). If you would Remember, together - we CAN and cause and raise money by getting
like to sponsor our children, WILL make a difference! pledges to sponsor each of them while
please contact me at the e-mail In July 2002 Cathy Dorocak was they hop 100 times.
address above. selected as CIGNA’s Volunteer of
• School Book Fairs - A percentage the Month and was awarded $500 to In 2001, St. Paul’s Nursery School
of the profits have been donated be donated to the charitable Transverse Myelitis
to "Reading for Rachel". organization of her choice. Cathy Hop-A-Thon
• Heart Grams - During Valentine's has donated the $500 to the Reading Steve and Colleen Blandford
week for the past two years, for Rachel Fund for TM Research of
children at one school purchased The Transverse Myelitis
paper hearts for 25 cents each. Association.
They wrote messages on them decided to hold its hop-a-thon for
Cathy Dorocak: CIGNA
and they were delivered to Caroline to raise money for The
Volunteer of the Month
students/teachers throughout the Transverse Myelitis Association. Our
school. daughter contracted TM when she was
• Penny War - This was done six months old. She was paralyzed
during "Disabilities Awareness Cathy was honored during a Town from the waist down. Caroline is five
Week" and was a very fun Hall Meeting held in the CIGNA years old and has had a good recovery
activity. Each grade level had a offices in Cleveland, the best from TM; she works very hard.
container in the lunchroom. location in the nation. Cathy is so
Students brought in as many deserving of this honor and award. The preschoolers at St. Paul’s decided
pennies as they could and they Her family established the Reading to hop for Caroline and The
put these into their own grade for Rachel Program as a way to raise Transverse Myelitis Association again
level's container. Students funds for TM research. She in 2002. We asked that the money that
brought in silver coins and they promotes the program throughout was raised be used for the TMA
put these into the other grade her community and in the TM Children’s and Family Workshop and
level's containers since the value community around the country and also to fund TM research. In addition
of the silver coins was subtracted around the world. Through her to the fundraiser at St. Paul’s, Michael
from the value of the pennies. tireless efforts, she and her family Flannery became involved in our
They loved sabotaging each other have raised thousands of dollars for efforts. Mr. Flannery is a reported for
and the grade with the highest net TM research. Her dedication and WCPO, an ABC affiliate in
penny value won! They won a her drive have helped to motivate Cincinnati, and has a program called
pizza party, but the actual value others to get involved in awareness “9 On your kid’s side.” He did a
of all the silver coins, in addition and fundraising activities. program about Caroline and about the
to all the pennies, more than hop-a-thon. He also asked for pledges
made up for that! We are so proud of Cathy’s honor and participated in the fundraising.
• Sales of anything!! - Last year, and her accomplishments. We are so
grateful for her hard work on behalf Through Caroline’s efforts and those
The Transverse Myelitis Association Page 63
of her friends at St. Paul’s, and well-coordinated rehabilitation ser- educational materials, plus
through the generous support of vices, and realized that education of maintaining the website.
Michael Flannery, the hop-a-thon was the public as well as medical person-
able to raise $10,170.40 for The nel about the TMA and the Johns Prior to this event, Arlene considered
Transverse Myelitis Association. Hopkins TM Center is vitally impor- herself a very reluctant fundraiser,
Dana was a healthy, athletic ten year tant work. Physicians who access with asking anyone for money an
old girl until July 2001 when she the JHTMC website (http:// onerous task. She was amazed at the
contracted Transverse Myelitis (TM) www.hopkinsmedicine.org/jhtmc/) generosity of family and friends. The
and became paralyzed from the waist will find detailed information to as- fundraiser proved attractive to
down. She came home after a sist them in the diagnosis and treat- everyone because it was based on
month’s stay at Children’s Hospital ment of a patient who has non- Dana’s daily efforts, and her progress
San Diego, uncertain of what the traumatic spinal cord injury, and could be followed on the fundraiser
future held for her. Thanks to caring there is good general information for website, adding excitement for all.
family, friends, classmates, doctors non-physicians as well. The Mathewson Family hopes that
and therapists, she is slowly regaining other members entertain the
use of her legs. There is virtually no research or possibility of a fundraiser of their own
support funding for rare diseases like for the TMA and help raise awareness
TM from the federal or state of the disease that affects all our
Dana’s Hopathon Fundraiser governments, and the TMA receives families.
Raises $6100 for The support only through donations of its
Transverse Myelitis Association members (there is no membership Our mom has Transverse Myelitis.
http://spiff.ucsd.edu/Dana/ fee). The physicians, counselors and She first got sick in 1997. She is a
every officer of the TMA are nurse and was the boss on an OB
volunteering their time and services floor. When she got TM, she had
to help educate patients, caretakers some other problems that the doctors
Dana and her family attended the and physicians. Although there is no found at the same time. She had an
first-ever Pediatric TM Workshop in staff salary overhead, the costs to AVM in her brain and had brain
Columbus, Ohio in July 2002. The maintain the TMA are significant – surgery in February 2000. She has an
Workshop was sponsored by The the costs of publishing a biennial aneurysm and seizures, too. Right now
Transverse Myelitis Association newsletter containing current the big problem is the TM. We wanted
(TMA) and moderated by Douglas literature and articles written by the to help her get better.
Kerr, M.D., chairman of the Johns medical board, along with office
Hopkins Transverse Myelitis Center supplies and mailings must come
(JHTMC). The Center is the only one from donations. Hoopathon for the TMA and
of its kind in the country dedicated to TM Research
studying the epidemiology, potential Dana attends physical therapy twice Adam New
causes and mechanisms of spinal cord weekly, and was learning how to hop
injury in TM. The Workshop allowed and jump over a rope. This
Dana’s family to meet 24 other fami- relatively recent development was
lies who had children with the illness, the basis for a fund-raiser; the There are three kids in the family.
and learned that TM is a rare disease, Mathewson family counted the Laura is our sister. She is in college at
striking 1 in a million people, and of number of consecutive hops Dana Emory and Henry. She was home on
these, approximately 10% are pediat- could make, once a day, for one break. I am Adam and I am 14.
ric cases. The illness is often misdi- month. Pledges per hop or fixed William is 16. The three of us tried to
agnosed or there is a delay in diagno- donations were collected, with all think of a way to raise money for
sis – with dire consequences for the proceeds going to the TMA. The research to find a cure for TM. We
patient. Dana’s parents are both pedi- fundraiser was extremely successful, know about it because of our mom.
atric physicians and were concerned with Dana accomplishing 186 hops Her side is numb. She uses a cane to
that there were perhaps missed oppor- and raising more than $6,100. These walk. She cannot tell when things are
tunities for better outcomes due to funds were applied to the hot or cold. Her feet feel like they are
lack of awareness by treating medical Association’s general fund for the burning on fire. Her hands and fingers
personnel. They were also concerned purpose of printing and mailing the are like pins and needles and always
that many families were not receiving TMA newsletters and other hurt. She is upset a lot, too. We
Page 64 The Transverse Myelitis Association
decided that we needed to do Ryan Rodriquez, age 13 this logo. If your state or country
something that we were good at so we Joseph Moore, age 13 support group designs a logo, you can
would get a lot of money. How many of you woke up this send it to us, and we will consider the
morning with the following goals: sale of logo items from your page of
We talked about it and when Laura I want to make a fashion statement; the support group site as we have for
came home on break that’s when we I want to foster awareness of the Ohio group. The TMA makes a
decided to shoot basketball free Transverse Myelitis and the TMA; small percentage on the sale of the
throws. We collected pledges and and logo store items.
donations from our families, friends I want to raise money for the TMA.
and neighbors. Most people gave 10 Be the fashion plate you have always
cents or 25 cents for each made free What a coincidence; we have the dreamed about. Help to foster TM and
throw, but some people gave a same goals. And, we have great TMA awareness among your friends
donation. A reporter from the local news for you. We have established a and neighbors. Help us fund the
newspaper came to do an interview web-based logo store through important work of The Transverse
about the fundraiser. We were happy Cafepress. Myelitis Association.
because she mentioned TM, the http://www.myelitis.org/store.htm www.CharityWave.com
symptoms, and that it needs to get Making a Contribution On-line
research for a cure. Mom had to talk Internationally and from the US
to Mr. Oliver, the principal at the high The TMA Logo Store
school. He let us use the gym. Laura Jim Lubin and Sandy Siegel CharityWave was created by Wave
set rules and she and mom made sure Systems Corporation. CharityWave is
we didn’t cheat. a free online contribution service.
You can purchase numerous items CharityWave absorbs the costs associ-
My best friend, Ryan, wanted to help with the TMA logo, as well as the ated with processing charitable trans-
and so did my friend, Joseph. They beautiful Reading for Rachel and actions, and guarantees that every dol-
both like my mom a lot. Laura and Children’s Workshop logos designed lar contributed goes directly to the
mom joked that we needed some by the brilliant and talented graphic TMA. They also pay all of the credit
estrogen to shoot basketball. My artist, Nik Niland. We have card processing fees for donations up
mom’s friend, Lisa, let her daughter purchased many t-shirts, coffee to $500. There are no administrative
miss school to come shoot hoops with mugs, and sweat shirts, and the or processing fees charged to you or
us. She said that this was an important quality of the items is exceptional.
Making Donations to the TMA
life lesson that could not be learned at There are new items offered all of
school. The day of the shootout, we the time, some of which are On-Line: from the United States
practiced for awhile before the clock seasonal, so you need to check back and Internationally
started. William and I are both good at the store often. There are also
at basketball and we were ready for it. occasional sales, sometimes
When we were shooting, a lady came including free shipping. The logo the TMA. When you make a donation
into the gym. She had the newspaper store items would make wonderful to the TMA using CharityWave, they
article with her. She said that she was Christmas and Hanukah presents. will send you an electronic receipt. In
on her break and wanted to bring us a No family member should be the US, this receipt may be used for
donation. It was cool. After four without an ample supply of TMA income tax purposes. Please check the
hours of shooting basketballs, our logo boxer shorts. tax laws in your country to determine
arms hurt badly. Amanda could only the purpose of this receipt.
shoot for three hours. I made 237 Some of the clothing items also
shots, William made 348, Ryan made come in children’s sizes. During the To make a contribution to The Trans-
167, Joseph made 234, and Amanda Children’s and Family Workshop in verse Myelitis Association using
made 101. We made $1,682.92 for Columbus, many of the families had CharityWave, go to their web site us-
TM research and we had fun. on their Children’s Workshop t- ing their address in your browser or by
shirts; it was very cool seeing all of clicking on the link from the TMA
Adam New, age 14 the kids in their logo shirts! The web site. You may also go directly to
William New, age 16 Ohio TM Support Group has the charity list by using the following
Laura New, age 20 designed a logo for their group; there address:
Amanda Yuhase, age 13 are Cafepress items being sold with https://prodpub.wavesys.com/cw/
The Transverse Myelitis Association Page 65
charitylist.asp. credit card statement will show
You may scroll down to The Trans- If you live in the United States, you Network for Good’s name instead of
verse Myelitis Association which ap- can make donations to The Trans- the TMA. Please be assured that 100%
pears in the list or type our name into verse Myelitis Association by visit- of your donation goes directly to the
the search tool. Once in the TMA area ing NetworkForGood.org – Jim has TMA; the transaction and credit card
of their site, you can click on the also created links to this site from verification is processed by Network
amount you would like to donate, or the TMA web site. The TMA will for Good and PipeVine. You will
fill in an amount in the space pro- receive 100% of your donations. We receive a record of your contributions
vided. You will be given the opportu- pay no fees, charges or commissions for tax purposes.
nity to make the contribution in honor on the contribution. Network for
of someone or in the memory of Good covers all of the transaction Please keep us informed of any
someone. You will also have the op- costs associated with collecting and changes to your mailing address, your
portunity to specify as to whether you distributing contributions, including phone number and your email address.
would like the person you are honor- the fees charged by the credit card You can send changes to me via email
ing or their family, to be notified of companies. When you make a con- at ssiegel@myelitis.org; you can send
the donation via an email. tribution using Network for Good, changes to me by mail, you can call
you may specify how you would like me (614)766-1806; or you can fill out
We are thrilled to have an easy, safe your donation to be used; Network a change of information form on the
and private way for people from for Good passes along your request web site: http://www.myelitis.org/
around the world to support your As- with the donation. For instance, you memberform.htm – just click on the
sociation. As we do not charge mem- can specify that you would like your box indicating that you are changing
bership fees, we are dependent on our donation to be used for the general existing information.
members to offer their generous sup- operating costs of the TMA, such as
port of our activities. Please help us to for the printing and mailing of the The Association does all of our
provide you with the quality of ser- newsletters; or you can request that mailings using the postal service bulk,
vice that you so much deserve! your donation be used for TM re- not-for-profit rate within the United
search. States and our territories and
NetworkForGood.org protectorates. We save a considerable
Making a Contribution On-line within You can dedicate donations to some- amount of money by doing our
the US one or make donations on behalf of
another person; Network for Good We Don’t Want to Lose You
Helping.org was developed by the passes along the dedication request And Finding You Has Become
AOL Time Warner Foundation to with the donation. Individuals are Very Expensive
serve the nonprofit community by also given the option to send an e-
providing comprehensive online re- card to the person for whom they
sources and tools to help nonprofits made the donation. mailings in this fashion.
integrate the power of the Internet Unfortunately, when you move and
into their strategic planning and to or- Network for Good does not accept don’t provide us with the change, our
ganize, recruit, fundraise and publi- in-kind donations, such as clothes, mail will not be forwarded to you,
cize their mission and successes cars or other items. You can use Net- after your grace period, and this class
online. Helping.org was used as a work for Good, however, to locate of mail is not returned to the sender.
foundation to build the Network for charities in your area that may ac- Thus, we have no idea as to whether
Good Web site. Helping.org has cept in-kind donations. In addition, you received the mailing or not, and
joined Network for Good MissionFish.com, an online auction we are not made aware of the change
(networkforgood.org), a coalition of site, enables users to donate in-kind by the post office.
leading Internet companies and non- items for auction with the proceeds
profit organizations that has devel- benefiting charity. Other sites such As a result of this situation, I had to
oped extensive online resources and as InKindex.com and do a mailing this year that was
tools to make it even easier for indi- GiftsInKind.org also offer informa- devoted to checking the accuracy of
viduals to donate, volunteer, speak tion on making in-kind donations. the TMA membership database. The
out on issues and make more in- process involved a lot of work, a lot of
formed decisions about supporting the When you make a donation to the money and about four months of time
causes they care about. TMA using Network for Good, your to complete. I had to make hundreds
Page 66 The Transverse Myelitis Association
of changes to our member’s The Transverse Myelitis Association 2001 Donors
information and we lost about 200 We would like to express our deepest gratitude to the persons and the
people due to our inability to find organizations that support the work of The Transverse Myelitis Association. It
them via the mail, email or phone. I is through their generosity that we are able to offer the services to our
have to say that it was very painful to membership; they also make possible the expansion of services to our existing
lose that many people in such a short and future members. The following persons and organizations made
period of time. And the cost to the donations to The Transverse Myelitis Association in 2001. The donations
Association is substantial, because made by members of the Board of Directors include non-reimbursed
until we perform a mailing to correct
the address information, the materials
we are mailing to a bad address just Linda Combs James Lubin
ferment on some post office floor. Alan and Kelly Conner Charles and Tracey Lyle
James and Sylvia Darby Joyce Mackiewicz
These are wasted printing and postage
Owen and Ann Davis Joanne Massello
costs. Robert and Myrna Dekoff William and Geraldine McCarty
Charles and Sandra Deming Cynthia McKee
Please keep your information current. John Desmarteau, M.D. Lorie McMullen
Your diligence is greatly appreciated. Dorothy Destephano Camille Mitchell
Debra Dougherty John and Sharon Moore
Marie Drach Kerry Morgan
David and Colleen Du Rette Jean Myers
http://www.myelitis.org/newsletters Joseph and Patricia Dudek K & K Neuendorf
Bobbie and Iola Durdin Ray and Ruby Norman
The web version of the TMA newslet- Tamani Eaton Vicki and Stephen Nye
ter includes color graphics and photo- Edward and Marion Enners Wanda Osborne
Marlene Evans Neal Palmisano
graphs. When you submit an article,
Mary Ann Ewart Jason Passino
consider including photographs or Frank and Rose Fialkowski Edwin Pena
color graphics You can send photos Russell and Sherry Fink Debrah Phillips
or graphics to me via an email attach- Andrew and Patricia Galanski Roland and Doris Phinney
ment or you can send it through the Gard & Associates Giselle M. Pierre-Nicholls
Frances Garrigan Raymond and Phyllis Pirtle
postal service and I will scan it and Gerald's of Northville, Inc. Janis Pittman
return it to you. Please be sure to pro- Darlene Getz Capt. J.P. Prestwich
vide me with captions for the photo- Vivian and John Giuntini E.R. Raulerson
graphs. Dennis and Elesia Glasser Ronald Reedy
$5-25 Deana Green Patricia and Donald Rennie
Jacob and Bonnie Griswold Regina Richards
Action Concrete Linda and Roger Gruss James and Debra Rockovich
Dana Alexander John and Eunice Halverson Joseph and Lorraine Romagnano
Ralph and Joan Allen Michael and Jill Hammond Michael Rowland
Fred and Cleora Armbruster Natalie Hanson Marrion Rutkowsky
Elizabeth Arroyo Gordon and Susan Harkins Albert Salerno
Lara and James Bailey Maernoy and Frankie Harrison Linda Scalzo-Dierdorff
Doris Ballou Michael and Noreen Hartman Norman and Margaret Scheiwe
Michael Ball Michael and Jo-Ann Hedderich Joseph Schreiber
Jenny Bannist Helen Fullard SCDL George and Jane Scurfield
Frederick and Joyce Beiner Barry and Lynne Hellman K. Lee Sharp
Alice Birkenmeier Robert Hijar and Or Mara Seaton Truman and Carlene Shultz
Sandra Blake Patricia Holt Harold and Ann Sorley
Marvin and Helene Blaustein Judith Humphrey Robert and Karen Spielman
Richard and Bonnie Brickhouse Edward and Lucille Jaworski Chris and LaRae Starr
Donna and Richard Brown Barbara Jenkins Dave and Joan Taylor
Conrad and Margaret Brown Theodore Jennings The Guided Tour
Martin and Bonnie Brozosky Carl and Dorothea Kaschube Georgia Thrower
T.J. Buccitelli Marcia Keener Vera Thyes
Dale and Mary Callaghan Ronald and Donna Kucera Eileen Tiam -Fook
Douglas and Judy Carlson Edward and Ruth Lachmayer Jacques Mann Ttee
Barbara and Jude Carluccio Terry Landry Jane Young Ttee
Gladys Coffey Memorial: Rev. John and Patricia Lekander Jerry and Diane Vecchione
Thelma Rollins Barbara Synhorst Libby Darian and Amy Vietzke
Brian and M. Cissel Collins Jacqueline Boone Long Nancy Vroom
The Transverse Myelitis Association Page 67
Mark and Joan Wabschall Marie Miller Mile High United Way
Amy and Lee Warner Dorothy Monahan Peggy Miller
Marjorie and Charney Weber Paul and Susan Moskowitz Lee Ann Miller-Elliott Memorial:
John and Carol Weiss Ross Newby Memorial: William and Esther Kendig
Patricia and David Wheeler Frank and Janet Hargrove Ralph and Ann Ludwick
Jaqueline Whitfield Robert and Irene O'Brian Richard and Luise Renner
Judith Wilkinson George Perdue Ray and Charlene Schapker
Carol Williams Bernie and Penny Pfiester Bill and Vickie Sherman
Clara Williams 'Lyn Pignon Sylvester and Virginia Spinetta
Donald and Marilyn Wingfield Robert and Denise Pluhatsch William Stewart Memorial:
Donald and Sheila Young Ross and Linda Plunkett John Burns
Donald Young Phyllis Pollock Terry and Jane Thomas
Jane Young Powells Grocery United Way of Northeast LA
Richard Zemba Capt. J.P. and Viginia Prestwich Richard and Nancy Wagoner
Ting Pun Richard Wright
$25-50 Meryl Reyman Carl and Janice Yoder
Irving and Regina Richards
Fred Amsel Lauro and Barbara Rozul $100-200
Jean Anthony Stephen and Linda Rubarski
Art of Murf, Inc. Kenneth and Emily Safko Thomas and Melissa Adams
Mr. Everette Barzie Jerome Sandau Subbash Domir
Benjamin Broome Harold and Marilyn Schlegel Dan and Cathy Dorocak
Katherine Bryan Mike and Linda Sirotka Frank and Janet Hargrove
Nancy Campbell VJ & DJ Smeltzer Hargrove Construction, Inc.
Arthur Caplin Margaret Smith Ted Kohler
Frank Carone Thomas and Jean Snyder Nancy Mackiewicz
Charles and Violet Chandler James and Deborah Stephens R.E. Landscape Services, Inc.
David and Roberta Charak Esther Stone Monique Sanders
Richard and Margaret Chassee Harold Sullivan Memorial: Susan Schneider
Daniel and Barbara Cole David and Suzanne Dudley John and Margaret Stover
Paul and Sandra Consalvo Dave and Joan Taylor United Way of King County
Melinda Craine Michael Teaters Memorial: Randolph and Marie Walker
Gerard and Ruth Dreyer Robert and Carol Frederick Janice Weiner
Michael and Nedra Eagle The Chase Manhattan Foundation Lois Young/NE PA Industrial Resource
William Ehrke Kirk Traenkner Center
John and Mildred Eidsness US Bancorp
Gladys Figueroa Escobar David Walls $200-300
Bonnie Evans Calvin and Margherita Wang
Asma Fadra Marlene Word Lynne Chafetz
John and Sheila Fitzell Beverly Christensen
H. Arnold and Adrien Gefsky $50-100 Kenneth D'Orazio
Lou Alice and Thomas Gillespie Geri and Bernard Dubrow
Catherine Gloeckler Aetna Foundation Walter and Maureen Hallagan
William and Penelope Gray Bruce and Janet Andrews Maureen Hogan and Andrew Riebs
Deana Green James and Lisa Andrews Maurice and Patricia Knowlton
Dianne Gregorich Ester Bailey Lori Malloy
Teresa Harnischfeger Jean Blackwell Peter Moore
Gerald Haynes Alexander and Ann Bottino James and Susan Pendelton
Jacob Thomas Hoover Memorial: Freeda Burford Kelly Rousseau Memorial:
Richard and Louise Keeler Joyce and William Cashman Steven and Michele Greiner
Henry and Dorothy Zimmer Ross and Leslie Chapin Lake Superior State University
William and Kathleen Hutcherson Congregation Beth Tikvah Rabbi Fund John and Nancy Larsen
Susan Hutchinson Charles and Sandra Deming Lynne Rousseau
Jimmy Garner Construction Charles Fisher Robert and Linda Smith
James and Therese Kendrick Mary Hogan Tim and Nancy Spradling
Eva Koeniger Patricia Janes Richard and June Vance
VA Lambell Richard Jett
Dr. Alexander Lerch James and Beatrice Jonas $400-500
Patricia Loesch Dorothea and Carl Kaschube
Jennifer Mestayer Franklin and Cheryl Kurtz Anchor Environmental, L.L.C.
June Meyer Jackie Landry Colorco
Paul and Evelyn Miller Christopher Lodge Richard and Mary Ellen Davison
Charles and Margaret Miller Cyril Mansperger, D.D.S. C. Thomas Gnewuch
Jim and Cindy Miller Cynthia McLeroy Barry and Mary Kercher
Page 68 The Transverse Myelitis Association
William and Emmy Lawrence Richard and Janice Hollander nual Report for 2001. The TMA
Robert and Linda Malecky Mr. & Mrs. Barron Lange (General) Fund column presents all
Roman Manufacturing, Inc. Lawrence and Michele Leach
Pat Starr John Lloyd funds received and expended directly
Dr. Mary McGarry by TMA as recorded in the Associa-
$600-700 Mr. & Mrs. Michael McGarry tion’s financial account. The Total
Mullin and Mullin Insurance, Inc. Donations and Expenses to Benefit
David Nord Memorial: Hamlet and Diana Newsom TMA column is presented to help con-
Brian Higa and Associates Optometrists Ralph and Jean Reynolds
Dan and Jill Eastburg Risk and Insurance Management vey the total costs of providing TMA
Raymond and Linda High Society, Inc. member services during 2001. This
Jerry and Paulette Johnson Delores Rudis column includes funds/activities re-
Darrell and June Nord Christine Sigman ported in the TMA (General) Fund as
Phyllis Nord, Nokomis Square Co-op Paul and Jane Smaldone
Marilyn Steen
well as non-reimbursed expenses paid
Murray and Janice Nord
Richard and Rose Nord Synergy-Fitzhugh Insurance by members of the Board of Directors.
Lois Schenfeld Frank and Florence Zuvich These non-reimbursed expenses also
Tuller Family Trust are shown as Donations made by
Brenda Visser $2,000-2,500 Board of Directors under Revenues.
The Donations made by Board of Di-
$1,000-2,000 Dick and Deanne Gilmur
rectors line item presents the amount
Michael and Debbie Capen $3,000-4,500 of funds spent by members of the
Foundation for the Carolinas Board of Directors that were not reim-
Myk and Paula Lazzeri Blandford Hopathon Fundraiser; bursed by the TMA (General) Fund.
Gilbert Ramsteck Memorial: Steve & Colleen Blandford
Brett and Joan Accardo Kenneth and Julie Jones
Stuart Christian Reading for Rachel Fundraiser
Barry Cohen
Vincent and Elaine Colotti
Virginia Di Pasca $5,000-$6,000
Richard and Irene Farrell
Martha Fitzgerald Claddagh Foundation, Inc.; Jack and
Frank and Eleanore Foti Joanne Callahan
Penny Hallenback
John and Jane Ingrilli $7,000-7,500
Kathy Mezrano
Carol and William Mitchell Sandy and Pauline Siegel
Michael and Susan Morris
Mary Jean Murphy
$11,000-12,000
Margaret Quist
Donald Ramsteck
Children's Workshop Donations
Donald and Susan Ramsteck
Edward and Kathleen Ramsteck
Justin and Mary Ramsteck $45,000-50,000
Helen Reichenbach
Mr. and Mrs. Stuart Reid Kevin's Cause Fundraiser; Tom and
Margaret Riefenstahl Jeanne Hamilton
Anthony and Mary Anne Russo
Joseph and Doris Schlinkert
Regina Schlossberg
Lorraine Schneider
Joan and Stephen Smaldone
Frederick and Jean Smith
Richard and Veronica Tepe The Transverse Myelitis
Kathy and Thomas Wiszowaty Association 2001 Statement of
The New York Community Trust
Catherine West Memorial: Financial Activities (in US
Elizabeth Adler Dollars)
Steve and Beth Asher Paula Lazzeri
Mary Ball
Dorothy Ball The following tables present The
Barbara Bennett
First Baptist Academy H.S. PTF Transverse Myelitis Association An-
The Transverse Myelitis Association Page 69

The Transverse Myelitis Association Treasurer's Annual Report 2001

Total Donations and


TMA Funds Expenses to Benefit TMA
INCOME
amazon.com Donations 109 109
Children's Workshop Donations 12,351 12,351
Endowment Donations 1,590 1,590
General Donations 35,498 35,498
iGive.com Donations 57 57
Research Donations 57,084 57,084
Endowment Interest 198 198
Interest Income 1,395 1,395
1st Symposium Video Sales 80 80
Donations made by Board of Directors 12,127

TOTAL INCOME 108,362 120,488

EXPENSES
1st Symposium Video Production 125 125
2nd Symposium 576 576
Bank Fees (cashier checks, merchant svcs) 112 112
Board Meeting Expenses 4,306
Domain/Web-site 309 519
Internet Access 1,141
Johns Hopkins Research Fund 1,195 1,195
Membership Fees 60
Mileage and Parking 132
Office Equipment 1,194
Office Supplies 1,644
Postage 9,344 10,393
Printing 14,798 15,963
Secretary of State Fees 70 70
Telephone and Fax 1,226

TOTAL EXPENSES 26,529 38,656

Net Income 81,833 81,833

Transverse Myelitis Association 2001 Statement of TMA Account Balances

Operating Fund 43,052.49


Research Fund 55,888.91
Children's Workshop Fund 12,351.00
Endowment Fund 9,491.57
Endowment Interest 281.00
Page 70 The Transverse Myelitis Association

Finding Information Workshop it could happen to a person with TM,


it has been talked about on the tmic.
About Transverse http://www.myelitis.org/events.htm
Every message that has been posted to
Myelitis A tremendous amount of the tmic has been archived. Jim has a
information on TM has been made search engine set up so that you can
available at the TMA Symposia and do a concept search of the archives.
The TMA Newsletters
Children’s Workshop. This This archive represents a tremendous
information is available through the resource to our community; one
http://www.myelitis.org/newsletters
events link. Clicking on highlights which, I believe is not used to its full
will take you to the program agenda. potential. Allow me to provide an
If you became a member of the TMA
The information is organized by example of how I believe you might
after 1997, you probably have not
presenter throughout each program consider using the archive. Let’s say
been mailed all of the TMA
agenda. You can review information your doctor has suggested a particular
Newsletters. The first newsletter was
in a number of formats. Handouts procedure for you, such as the use of a
published in January 1997. When a
from the presentations are available baclofen pump, and you decide that
person becomes a member of the
in pdf format. Some of the you would like to think about it before
TMA, one of the items they receive
PowerPoint presentations are moving forward. You can enter
from the Association is the most
available. Also, there is streaming baclofen pump into the tmic search
recently published newsletter. We do
video of the presentations from the engine and every message that
not mail out back issues of the
Second International Symposium in contains the words baclofen pump will
newsletters primarily because it
Baltimore and from the Children’s be retrieved from the archive. Not
would entail an enormous expense to
and Family Workshop in Columbus. only can you read what the messages
do so. Pauline has already observed
Jim and I are currently reviewing communicate about the pump and
that our home’s décor already reflects
video from the First International people’s experiences with it, you can
late twentieth century warehouse.
Symposium in Seattle. We will be also identify their email addresses
posting some of the presentations from the messages. You can then
If you are looking for information
from this symposium within the next contact these people yourself and ask
about TM, it is important that you
year. There is an enormous amount follow-up questions. You will get a
read the earlier versions of the
of information about TM in these wide range of opinions about every
newsletter that were published before
presentations. If you are searching subject. Ultimately, you will be a
you became a member. Jim has
for information about TM, I strongly much more informed patient when
posted all of the newsletters on our
urge you to watch these videos. you discuss these issues with your
web site. He has them posted in a
physician.
printable format which will save your
color cartridge by not printing the The TMIC Archives
color background. Also, beginning The Johns Hopkins Transverse
with Volume 4 Issue 2 of the http://www.myelitis.org/tmic Myelopathy Center
newsletter, the web version includes
color graphics and photographs. I The Transverse Myelitis Internet http://www.myelitis.org/jhtmc
would encourage you to print and Club Archives also represent an
read these newsletters, if you have not enormous amount of information The Johns Hopkins Transverse
already done so. about TM. Jim established the tmic Myelopathy Center web site provides
in 1994. Since its inception, a great deal of information about TM.
If you do not have internet access, hundreds of people with TM and Dr. Kerr has compiled information on
please find a friend or relative who their caregivers have been the web site about Transverse Myelitis
will print the newsletters for you. participating in this community of and about the Center. If you are
Most public libraries around the information sharing and support. seeking information about TM, it
country have access to the internet The site provides a valuable patient would be important to read all of the
and will allow you to do this printing. perspective on all of the physical, information on the JHTMC site.
emotional, psychological and social
issues which are experienced by NIH TM Fact Sheet
TMA Symposia and Children’s children and adults who have TM. If
The Transverse Myelitis Association Page 71
http://www.myelitis.org/nih computers and the internet. He is hard work and dedication. No one
always looking for ways to create an works harder than Jim to provide
The National Institute of Neurological electronic form for information we information and support to the TM
Disorders and Stroke, National are trying to collect from our Community. Jim brings so many
Institutes of Health has prepared a members. He is always on the hunt talents and gifts to our Association.
fact sheet and brochure with good for newspaper articles or stories on We are all so fortunate to have him
information about TM (July 2001). the television about people with TM; working for our cause. I am so truly
Jim has created a link for the TM Fact he posts this information on the site blessed to have him for a friend.
Sheet from our web site, as noted regularly. He is on the constant Thank you, Jim.
above. The brochure can be ordered lookout for internet relationships
on-line from this site; an electronic with various companies and
order form is provided. You can also organizations which create
call the NINDS Office to order the fundraising opportunities for the
brochure (NIH Publication No. 01- TMA. And he works at making the
4841) at (301)496-5751. site look both very professional and
really great. Jim has helped to make
disABILITY Information and the TMA look like an organization
Resources with a staff of two hundred people
located in a large office building. I
http://www.makoa.org once had a man admire our site and
compliment our IT Staff, making it
Jim’s disABILITY Information and sound as though the site were
Resources site is the most created and maintained by a group of
comprehensive collection of 20 people. I laughed and told him
information on disability issues that I that our IT Staff was Jim Lubin.
have found on the internet. His site People find my phone number on the The Transverse Myelitis Association
covers everything. If you have not main page of the web site and call is proud to be a source of information
reviewed this site, please do so. You me. They are always surprised to about Transverse Myelitis. Our
will not find a more useful collection hear that I am talking to them from comments are based on professional
of information anywhere. If the my kitchen while I’m making advice, published experience and
subject relates in any way to the dinner. expert opinion, but do not represent
resources of interest to a person with therapeutic recommendations or
TM, you will find it on this site. In the past month, I have received prescriptions. For specific information
requests for help from people with and advice, consult a qualified
TM from Panama, Jamaica, physician. The Transverse Myelitis
http://www.myelitis.org Pakistan, England, Denmark, Italy, Association does not endorse
Brazil, Australia, Germany and from products, services or manufacturers.
Jim has recently made modifications all across the United States. And Such names appear in this publication
to the TMA web site. Our web site is Jim has found ways to have sections solely because they are considered
a continual work in progress. Jim is of our site translated into eight valuable information. The Transverse
constantly tinkering with it. The different languages besides English. Myelitis Association assumes no
changes are directed at providing He is currently engaged in a project liability whatsoever for the contents or
people with the most accurate, useful with Ursula Mauro, our Germany use of any product or service
and up-to-date information possible. TM Support Group leader, to have mentioned.
Jim is always looking for ways to the membership form available in
make it easier to find information and German to assist our new German-
to more easily navigate through our speaking members. He is also
site. He works tirelessly at trying to working on a bulletin board system,
automate as many processes as in German, for our Germany TM
possible. He has made becoming a Support Group.
member of the TMA a very easy
experience for people; even those Every time I receive one of these
who have little experience with messages, I am reminded of Jim’s
Page 72 The Transverse Myelitis Association
Membership Listing and groups continue to be initiated and change your listing status. Jim has
existing support groups are growing. established a support group page on
Participation in Support If you have indicated that you do our web site: http://
Groups not want to be listed in the www.myelitis.org/support.htm.
membership directory, the TMA You can learn of new support
If you signed up for membership to will not share your name and groups and keep track of upcoming
The Transverse Myelitis information with the support group events of existing support groups by
Association using the form on our leaders. The lists I send to the regularly checking back on this site.
web site, you were given the option support group leaders are used
as to whether you wanted to be primarily for invitations to support The listing will make it possible for
listed in the membership directory. group meetings. you to participate in a TM support
If you checked the box that you did
group when one is initiated in your
not want to be listed, the TMA will If you are currently not listed in the area. Your listing will also make
not divulge your name or directory, and would like to become you available as a resource to
information to any other TMA involved in a support group if one someone in your area who may
member. exists in your area or be notified of a need your help. As TM is a rare
new support group, should one be condition, we need to be there for
There are TM support groups initiated in your area, please call, each other to share information and
operating all over the country and send me an email or a letter and let support. Please consider being
all over the world. New support me know that you would like to listed in the TMA membership
directory.

The Transverse Myelitis Association


Sanford J. Siegel
1787 Sutter Parkway
Powell, Ohio 43065-8806

Gregory N. Barnes, Adam I. Kaplin,


Leslie Morrison, Frank S. Pidcock
join The Transverse Myelitis
Association Medical Advisory Board