A Focus On Rehabilitation Final Links

CE CREDITS
AVA I L A B L E
S E E P. 1 1 3
F O R D E TA I L S
M U LT I P L E S C L E R O S I S :
A FOCUS ON
R E H A B I L I TAT I O N
5TH EDITION
ROSALIND KALB, PHD, EDITOR

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Resource Center provides:
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variety of formats;
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clinical care.
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2012 National Multiple Sclerosis Society. All rights reserved.

W H AT S
INSIDE?
P R E FA C E.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
PA R T O N E : C L I N I C A L V I G N E T T E S . . . . . . . . . . . . . . . . . . . . 2
PA R T T W O : D I S E A S E O V E R V I E W . . . . . . . . . . . . . . . . . . . . . . 5
Pathophysiology. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Etiology.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Epidemiology. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Disease Course Classifications. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Diagnosis. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Symptoms. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Prognosis. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Treatment.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11
Source Materials. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
PA R T T H R E E : R E H A B I L I TAT I O N .. . . . . . . . . . . . . . . . . . . . . . . 24
The Unique Role of Rehabilitation in MS.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Restorative & Preventive Goals of Rehabilitation in MS.. . . . . . . . . . . . . . . . . . . . . 25
The Rehabilitation Team. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
Challenges in MS Rehabilitation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27
The Rehabilitation Paradigm.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30
Source Materials for Rehabilitation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47

PA R T F O U R : A P P E N D I X E S
A P P E N D I X A . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51
Disease Management Consensus Statement National MS Society
A P P E N D I X B .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53
Medications Commonly Used in MS
A P P E N D I X C .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58
International Classification of Impairments, Activities, & Participation
A P P E N D I X D . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60
Reprints of National MS Society Publications on Rehabilitation
A P P E N D I X E . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98
Rehabilitation Assessment Measures in MS
A P P E N D I X F . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102
Recommended Resources
A P P E N D I X G . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 108
Organizations of Note
A P P E N D I X H . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 113
Continuing Education
P R E FAC E
The progressive nature of multiple sclerosis
(MS), the unpredictability & variability of
its symptoms, and the emotional and social
changes it can cause, combine to create a
complex, clinical challenge for rehabilitation
professionals.
In the course of their work with people living with MS, rehab specialists evaluate and explain disease-related
impairments and provide interventions to maximize function, promote health, and prevent unnecessary
complications. This book provides an overview of MS and its treatment, with an emphasis on the unique role
of rehabilitation professionals in the treatment process.
This publication was originally adapted and updated from the book developed in conjunction with the 1999
professional teleconference, co-sponsored by the National Multiple Sclerosis Society and the Consortium of
MS Centers, entitled Multiple Sclerosis in 1999: A Focus on Rehabilitation. The expert panel for this teleconference
included Linda Morgante, RN, MSN, CRRN, Lois Copperman, PhD, OTR/L, and Cinda Hugos, MS, PT. We
gratefully acknowledge the review and revisions provided by Ms. Hugos and Dr. Copperman.
A Focus on Rehabilitation 1
PA R T O N E :
CLINICAL
VIGNETTES
The following vignettes serve to illustrate some VA L E R I E , a 31-year-old married
woman with a 5-year-old daughter,
of the medical, rehabilitative, and psychosocial teaches at the local high school.
She was diagnosed four-and-a-half
issues confronting people living with multiple
years ago, following her daughters
sclerosis (MS). The remaining sections of the birth, when she experienced an
episode of optic neuritis and
book will provide an overview of the disease numbness and tingling in her right
and its management, highlighting the role hand. She was treated with IV
methylprednisolone and started
of rehabilitation professionals in addressing on one of the disease-modifying
drugs. Her symptoms cleared, to
symptoms, maintaining function, preventing
be followed about a year later by
unnecessary complications, and promoting a second attack of optic neuritis,
an intensification of the sensory
wellness. symptoms, and severe fatigue.
The symptoms partially cleared

with a course of steroids, but
Valerie continued to experience
significant fatigue almost every
day. By the time she got home
from school, Valerie had no
energy left to do much of anything.
The lingering fatigue was beginning
to make her busy, satisfying life
feel unmanageable. In addition,
she sometimes had difficulty
seeing her computer screen or
managing tasks requiring fine
2 National Multiple Sclerosis Society

motor skills at home and around the school. With a letter prescribed baclofen to relieve
at work. Her handwriting from the doctor, the school was James increased spasticity and
deteriorated and small objects happy to provide Valerie with a recommended that he start on
tended to fall out of her hand. parking spot closer to the building, one of the disease-modifying
a first-floor classroom that was agents. The PT recommended
Valerie and her husband, Steven,
close to the bathroom, and a a cane to compensate for his
scheduled an appointment
short rest period in the middle weakness and fatigue. James and
with the neurologist to discuss
of the afternoon. the PT developed a stretching
Valeries new limitations. While
program for his spasticity and
Steven was willing and able to The neurologist also referred
an aerobic exercise program to
take on a larger share of the Valerie to an occupational
help with his endurance and
more physically-demanding therapist for additional energy
deconditioning.
parenting activities and house- saving strategies at home and at
hold responsibilities, Valerie and work, and for help with her A short time later, James
Steven shared a concern about sensory symptoms and occasional developed some problems with
her ability to maintain her visual problems. Valerie is now his bladder, including urinary
teaching job and still have the equipped with tools for writing, urgency and frequency. Having
energy to be a mom and wife. for holding objects more securely, had two bladder accidents, he
Neither wanted her to have to and for seeing her computer began wearing a protective pad
give up a career that gave her screen more clearly. With the whenever he went out of the
so much enjoyment and also encouragement of the OT, she house, and looked for the nearest
helped pay the bills. has also learned to ask for more bathroom any time he went to
help from her students who, an unfamiliar place.
Valeries neurologist referred her
she was delighted to discover,
to rehabilitation specialists for James was initially reluctant to
were happy to pass out papers,
help with energy management. discuss the urinary problems with
write on the blackboard, or run
The physical therapist (PT) his neurologist or nurse because
occasional errands to the office.
designed a personalized aerobic he found it all too embarrassing.
As Valerie continues to use more
exercise plan for Valerie to However, after reading on the
assistive equipment and adaptive
enhance her energy and talked National MS Society website
strategies, she has discovered that
to Valerie about a motorized (nationalMSsociety.org) about
these, too, have helped reduce her
scooter that would enable her the treatment of MS-related
fatigue and enhance her teaching.
to participate more comfortably bladder problems, he realized
in activities and outings with J A M E S is a 47-year-old that these problems are fairly
her family. Valerie followed the divorced accountant who lives common and readily managed.
therapists suggestion that she alone. Originally diagnosed This encouraged him to speak
talk to her school about some with relapsing-remitting MS openly with his neurologist and
reasonable accommodations at age 35, James had no major nurse, and he now manages
that would allow her to use her problems until five years ago, his bladder symptoms with
energy for teaching rather than when his MS started to become medication and intermittent
for simply navigating her way more progressive. The neurologist self-catheterization.
James MS progressed to the The PT helped James recognize In addition to his physical
point where he needed bilateral that his job was more threatened problems, James is now
support for walking. Although by his unsteady gait and tendency concerned that hes not able to
he had fallen a few times, he to fall than it would be by a new think as clearly as he used to.
was unwilling to switch from mobility aid. She helped him He has always prided himself
the forearm crutches to a select and obtain insurance on being highly organized, as
motorized scooter. While the coverage for a motorized scooter, well as a sharp, decisive thinker
scooter would reduce his fatigue which he now uses for the long who did a good job for his clients.
and enable him get around trips up and down the corridors Lately, he has made some
much more safely and easily, at work and between the building mistakes at work and feels that
James was afraid it would make and his car. During the day, his thinking is less organized.
him look more disabled. He James leaves the scooter in the Hes begun to feel as though its
didnt want to use any mobility closet and uses his forearm all slipping away from him. He
device that would threaten his crutches to walk around his office. recently heard a National MS
job or cause his colleagues in Using these mobility aids in Society online program about
the accounting firm to lose combination with the bilateral cognitive dysfunction and has
confidence in him. He was also ankle/foot orthoses recommended decided to ask the OT about
concerned that using a scooter by his PT, James has found this problem as well. n
would interfere with his ability to that he is much less fatigued.
meet women. Besides, James was Both he and his co-workers are
sure that if he started using a pleased with his productivity
scooter, he would lose his ability and new-found stability.
to walk. Once an avid athlete,
At those times when James still
James was clinging to the hope
feels particularly fatigued, he
that he would one day be able
finds it difficult to speak clearly.
to resume the sports activities
His words sometimes slur to the
that were so important in his life.
point that friends have teased
him about having one too
many. Fortunately, the speech
problems tend to occur late in
the day when James is less likely
to be speaking to clients. The
neurologist prescribed amantadine
to relieve the fatigue and referred
James to an OT to learn energy
effectiveness strategies. He also
referred James to a speech-language
pathologist for an evaluation.

PA R T T W O :
DISEASE
OVERVIEW
PAT H O P H Y S I O L O G Y PAT H O P H Y S I O L O G Y
ETIOLOGY Multiple sclerosis is thought to be an immune-mediated (most likely auto-
immune) disease that primarily affects the central nervous system (CNS)
EPIDEMIOLOGY
the brain, spinal cord, and optic nerves. Random attacks of inflammation (also
DISEASE COURSE called relapses or exacerbations) damage the myelin sheath (the fatty insulating
C L A S S I F I C AT I O N S substance surrounding nerve fibers in the white matter of the brain and spinal
cord) causing scarring (also called plaques or lesions). The name multiple
DIAGNOSIS
sclerosis comes from the multiple areas of scarring that characterize the disease
SYMPTOMS process. The inflammatory attacks along with the scarring they produce
occur randomly, varying widely in number and frequency from one person to
PROGNOSIS another. The scars along the myelin sheath interfere with the transmission of
nerve impulses, thereby producing the symptoms experienced by people
T R E AT M E N T
with MS. Because of the randomness of the plaques within the CNS, no
Treatment of Acute Exacerbations two people with MS will have exactly the same symptoms.
Symptom Management
Until fairly recently, it was believed that any damage to the nerve fibers
Disease Modification (axons) themselves was secondary and less substantial than the damage to
Psychosocial Support the myelin sheath. A study by Trapp et al. (1998), however, confirmed that
the nerve fibers can become irreversibly damaged as a consequence of the
S O U R C E M AT E R I A L S
immune systems attacks on myelin and the inflammation that occurs during
relapses. This irreversible axonal loss, which can occur even in the earliest
stages of the disease, is thought to be a major cause of the persistent neuro-
logic deficits in multiple sclerosis. Thus, symptoms may become permanent
when the ability to conduct nerve impulses is lost. In light of this
information, medical experts in multiple sclerosis recommend that early
intervention with one of the available disease-modifying agents be considered
for any person with a confirmed diagnosis of MS and active disease.
See the Disease Management Consensus Statement, Appendix A, page
51, for specific recommendations in the United States.
ETIOLOGY E N V I R O N M E N TA L GENETIC
While the precise cause of MS Migration patterns and MS is not hereditary like hair
is still unknown, decades of epidemiologic studies (that or eye color, for example. Support
research indicate that multiple take into account variations in for this conclusion comes from
sclerosis may be the result of an geography, socioeconomics, the fact that an identical twin
abnormal autoimmune response to genetics, and other factors) of a person living with MS
some infection or environmental have demonstrated that people has only a 25 percent chance
trigger in a genetically susceptible who are born in an area of the of developing MS rather than a
individual. Each of these factors world with a high risk of MS, 100 percent chance. However,
immunologic, environmental, and move to an area with a a person who has a first-degree
infectious, and genetic is the lower risk before 15 years of relative (e.g., a parent or sibling)
subject of intensive ongoing age, acquire the risk level of with MS, has a significantly
research. their new home. These data greater risk of developing MS
suggest that exposure before than a person with no MS in
MS is believed by most MS puberty to some environmental the family. Thus, while the risk
experts to be an autoimmune agent may predispose a person of MS in the general population
disease, in which the bodys to develop MS. is 1/750, it rises to 1/40 for a
immune system attacks apparently person who has a parent with
healthy tissues (i.e., the myelin MS, with the risk being higher
sheath surrounding the nerve INFECTIOUS
for girls than boys. Scientists
fibers and the nerve fibers them- While researchers do not yet theorize that MS develops in
selves) in the CNS. The exact know what factors within the individuals who are born with
antigen (the target that the environment cause MS to become a genetic predisposition to react
immune cells are sensitized active, most believe that some to some environmental agent.
to attack) remains unknown. unidentified infectious agent Exposure to that agent then
Recently, however, researchers either viral or bacterial is triggers the autoimmune response.
have been able to identify which responsible. Although dozens of Research has demonstrated a
immune cells are mounting viruses and bacteria have been higher prevalence of certain
the attack, how these cells are investigated to determine if they genes in populations with high
activated to attack, and some of are involved in the development rates of MS. Common genetic
the sites on the attacking cells of MS, we still do not know which, factors have also been found
that seem to be attracted to the if any, might be the culprit. in some families where there
myelin to begin the destructive is more than one person living
process. Researchers are looking with MS.
for highly specific immune
modulating therapies to stop this
abnormal immune response with-
out harming normal immune cells.

1A EPIDEMIOLOGY
MS is typically diagnosed between the ages of
INCREASING
D I S A B I L I TY 20 and 50. Although 90 percent of people are
diagnosed between the ages of 16 and 60, MS can
develop in infancy or well after the age of 60. MS
is more common in women than men by a ratio of
TIME 23:1, and appears more frequently in Caucasians
(particularly of northern European ancestry) than
in Hispanics or African Americans. The disease is
relatively rare among Asians and certain other
1B
groups. MS is more prevalent in temperate areas of
the world and relatively rare in the tropical areas
INCREASING closer to the equator. At the present time, it is
D I S A B I L I TY
estimated that there are more than 500,000 people
living with MS in the United States and Canada,
and more than 2.1 million worldwide.
TIME
FIGURE 1: RELAPSING-REMITTING MS DISEASE COURSE

C L A S S I F I C AT I O N S
The charts on the following pages (Figures 14)
2A
describe the results of an international survey of
disease patterns in MS conducted by Fred D. Lublin,
INCREASING
D I S A B I L I TY
M.D. and Stephen C. Reingold, Ph.D. (1996).
It is important to keep in mind that these disease

categories serve primarily as a tool for the development
TIME
of clinical research protocols, and as a guide for certain
types of treatment decisions. The disease categories
became a focus of attention for people living with
MS when they were used by researchers to identify
2B participants for the clinical trials of the disease-
modifying therapies, and then by insurance companies,
to determine a persons eligibility for reimbursement
INCREASING
D I S A B I L I TY of these drugs. Although the categories have come to
play a significant role in MS research and management
decisions, they were designed to be descriptive in
nature rather than a report card or rating scale of
TIME a persons disease.
FI G URE 2: SEC ONDARY-PROGRESSIV E M S
A particular individual may not fit neatly into one 3A
category or another. The categories can, however,
provide people living with MS and their healthcare
INCREASING
providers with a useful guide to treatment options. D I S A B I L I TY
RELAPSING-
REMITTING MS (RRMS) TIME
RRMS is characterized by clearly defined acute

attacks with full recovery (1A) or with residual deficit
upon recovery (1B). Periods between disease relapses
3B
are characterized by a lack of disease progression.
Approximately 85% of people are diagnosed initially
with relapsing-remitting MS. INCREASING
D I S A B I L I TY
SECONDARY-
PROGRESSIVE MS (SPMS)
TIME
SPMS begins with an initial relapsing-remitting

FIGURE 3: PRIMARY-PROGRESSIVE MS
disease course, followed by progression of variable
rate (2A) that may also include occasional relapses
and minor remissions and plateaus (2B). Natural
4A
history data suggest that of the 85% who start with
relapsing-remitting disease, more than 50% will
develop SPMS within 10 years; 90% within 25 INCREASING
D I S A B I L I TY
years. The full impact of the disease-modifying
therapies on this transition to progressive disease
in not yet known.
TIME
PRIMARY-
PROGRESSIVE MS (PPMS)
PPMS is characterized by progression of disability 4B
from onset, without plateaus or remissions (3A)
or with occasional plateaus and temporary minor INCREASING
D I S A B I L I TY
improvements (3B). Approximately 10% of people
are diagnosed with PPMS.
TIME
FIGURE 4: PROGRESSIVE-RELAPSING MS

PROGRESSIVE- n Evidence of plaques or
RELAPSING lesions in two distinct
areas of the CNS
MS (PRMS)
n Evidence that the plaques
PRMS, which is the least common occurred at discrete points
disease course, shows progression in time
from onset but with clear acute
n The plaques in the white

relapses, with (4A) or without (4B)
matter of the CNS have no
full recovery. Approximately 5%
explanation other than MS.
of people appear to have PRMS
at diagnosis. Because there is no specific test
for MS, and the time between
(Figures 1 through 4 adapted
attacks can range from months Studies of
from Fred D. Lublin, M.D.,
to years, the diagnostic process
and Stephen C. Reingold, depression in MS
can be a long and frustrating
Ph.D., Neurology, April 1996,
46:907911.)
one. In addition, the symptoms indicate that 50
are so variable and sometimes
so subjective, that peoples percent of people
DIAGNOSIS complaints may be ignored or living with MS will
misinterpreted as psychiatric.
There is no single test that can
Although the advent of magnetic experience a major
determine whether a person has
resonance imaging (MRI) has
MS. The diagnosis is a clinical depressive episode
greatly facilitated the diagnostic
one, made on the basis of medical
history, signs detected by the
process, MRIs of the brain are at some point
abnormal in only 95% of newly-
physician during a neurologic
diagnosed individuals. They over the course
exam, and symptoms reported
by the patient. A definitive
can therefore be used only as of the disease.
confirmatory evidence of the
diagnosis of MS requires the
disease. Other tests used to

following:
confirm the diagnosis and/or
rule out other problems include
visual evoked potentials and a
lumbar puncture.
SYMPTOMS The consensus from other PROGNOSIS
studies is that more than
As a result of the inflammatory 50 percent of people living Although prognosis in MS
process in the CNS, people with MS will experience some is uncertain, there are certain
with MS can experience any or degree of cognitive dysfunction factors that seem to predict a
all of the following symptoms: (LaRocca & Kalb, 2006; Rao et more favorable course:
fatigue, visual disturbances, al., 1991). A prevalence study n Female gender
spasticity, weakness, imbalance, found that 73.1 percent of
sensory changes, pain, bladder n Onset before age 35
people living with MS reported
and/or bowel dysfunction, sexual sexual dysfunction (Zorzon et n Monoregional (single
dysfunction, speech impairment al., 2001; 1999). Studies of area of CNS involvement) vs.
(dysarthria), swallowing problems depression in MS indicate that polyregional (multiple areas)
(dysphagia), emotional changes, 50 percent of people living attacks
and cognitive impairment. with MS will experience a n Complete recovery after an
major depressive episode at some exacerbation, leaving little or
In a large (N = 697), population-
point over the course of the no residual impairment
based survey of individuals with
disease a higher prevalence
MS (Aronson et al., 1996),
than is seen in other, equally Factors that tend to be associated
the following symptoms were
disabling chronic illnesses, with a poor prognosis include:
reported:
resulting in part from the
n Male gender
n Fatigue 88% disease process itself (Patten et
n Onset after age 35
n Ambulation problems 87% al., 2003; Minden et al., 1987).
n Brainstem symptoms such
n Bowel/bladder
as nystagmus, tremor, ataxia,
problems 65%
and dysarthria
n Visual disturbances 58%
n Poor recovery following
n Cognitive problems 44% exacerbations
n Tremor 41% n Frequent attacks
n Movement problems
Studies have also indicated that
in the arms 41%
although African-Americans
are less likely than Caucasians
to develop MS, they tend to
experience a more progressive
disease course (Naismith et al.,
2006).

T R E AT M E N T Many people feel better while A second option for the treatment
taking them, in part because of acute exacerbations is ACTH
Treatment strategies in MS fall steroids can sometimes have (H.P. Acthar Gel repository
into five general categories: a mood-elevating effect. The corticotropin injection). ACTH
chronic use of steroids, however, has been approved by the FDA
1. Treatment of acute
causes serious side effects including for this purpose since 1978.
exacerbations (attacks)
hypertension, diabetes, bone loss Although there was a period when
2. Symptom management (osteoporosis), cataracts, and its availability in the U.S. and
3. Disease modification ulcers. elsewhere became very restricted
4. Rehabilitation (to enhance and due to limited manufacturing
Short courses of steroids tend
maintain physical function) production, the product is once
to be well-tolerated by most
again available.
5. Psychosocial support people. Mood changes, however,
are relatively common, with
Categories 13 and 5 will be SYMPTOM
people reporting feeling high,
summarized here. Category 4, MANAGEMENT
energetic, and unable to sleep,
rehabilitation, is discussed in
and/or depressed, particularly as
the remainder of the book. Table 1 on the following pages
they come off the medication. A
presents the symptoms of MS,
small percentage of people may
the treatments recommended to
T R E AT M E N T experience quite severe disturbances
manage them, and the potential
OF ACUTE in mood or behavior. Lithium,
emotional and social impact
E X A C E R B AT I O N S divalproex (Depakote), and
of these symptoms on peoples
carbamazepine (Tegretol) have
Although the exact protocol may lives.
all been shown to be effective
differ, most neurologists use a in preventing or managing these
high-dose intravenous (IV) symptoms. Patients should be
corticosteroid agent such as alerted to these potential side effects
methylprednisolone plus sodium before taking corticosteroids, and
succinate. Most commonly used reminded that a person can react
is a 3- to 5-day course of treatment, very differently to corticosteroids
either in the hospital or as an from one course to the next.
outpatient, which may or may
not be followed by a gradually
tapering dose of an oral corti-
costeroid such as prednisone.
Steroids work to decrease acute
inflammation in the CNS, but
have no long-term benefits in MS.
TA B L E 1 : S Y M P T O M M A N A G E M E N T
& I T S P S Y C H O S O C I A L I M P L I C AT I O N S *
PSYCHOSOCIAL
SYMPTOM T R E AT M E N T
I M P L I C AT I O N S
A M B U L AT I O N P R O B L E M S
Spasticity SEE: SEE:
Spasticity Spasticity
Impaired balance INTERVENTION: n Resistance to use of mobility aids:

Referral to PT: mobility aids; exercise Perceptions of self:
damaged; weak; giving in
Others perceptions: less
intelligent; less competent
Weakness INTERVENTION:
Referral to PT: mobility aids; exercise

M E D I C AT I O N :
Fampridine-SR (Ampyra) to
improve walking speed
BLADDER DYSFUNCTION**
Failure to store (urgency, Anti-cholinergic/anti-muscarinic Fear of drinking liquids; anxiety

frequency, incontinence, nocturia) agents [oxybutynin (Ditropan); over loss of control; fear of
tolterodine (Detrol); hyoscyamine leaving the vicinity of bathroom;
sulfate; propantheline bromide embarrassment/shame; fear of
(Pro-Banthine); trospium chloride incontinence during intercourse;
(Sanctura); solifenacin succinate increased fatigue due to interrupted
(Vesicare)]; scheduled voiding; sleep
avoidance of diuretics
* Visit nationalMSsociety.org/PRCPublications to read the Clinical Bulletins and Expert Opinion Papers relating
to symptom management
** Invisible symptoms can be stressful since they tend to be ignored, misunderstood, or misinterpreted by other people.

PSYCHOSOCIAL
BLADDER DYSFUNCTION**
Failure to empty (urgency, Intermittent self-catheterization Anxiety about loss of control;

hesitancy, double voiding, (ISC); may require indwelling fear of ISC
feelings of incomplete emptying) catheter
Combined failure to store/ Combination of the above

failure to empty
BOWEL DYSFUNCTION**
Constipation Bowel training; high fiber diet; Discomfort; exacerbation

exercise; medication (e.g., softeners, of spasticity
mild laxatives, mini-enemas)
Fecal impaction Manual disimpaction Discomfort; embarrassment
Diarrhea Disimpact and relieve constipation Discomfort; embarrassment

(usually from constipation)
Fecal incontinence Bowel program; anticholinergic Loss of control; anxiety about

medication (for hyperreflexic leaving home/being around
bowel) others; shame
PSYCHOSOCIAL
COGNITIVE SYMPTOMS**
n Memory impairment INTERVENTIONS: INDIVIDUAL:
Cognitive rehabilitation Denial; anxiety; loss of self-

n
Impaired attention/
n Restorative approach: direct esteem/self-confidence;
concentration
retraining exercises (have only depression; may interfere with
n Slowed processing speed
limited benefit for daily activities) self-care and independence
n Impaired executive functions INTERPERSONAL:
n Compensatory approach: aims to
n Impaired spatial relations improve function via substitution Family strain; marital strain;
n of compensatory strategies/tools impaired communication;
Impaired word-finding
for the impaired function role shifts within the family
ability
E M P LO Y M E N T:
M E D I C AT I O N S :
Note: Cognitive deficits are often Major cause of high unemployment
Donepezil hydrochloride (Aricept)
missed in a standard neurologic rate in people living with MS
may be useful; disease-modifying
exam.
agents may be beneficial H E A LT H C A R E :
May affect communication

with providers and compliance
with treatment
F AT I G U E * *
PRIMARY (NEUROLOGIC): INTERVENTIONS: Inability to carry out activities at

Overwhelming lassitude or Referrals to PT and OT; naps; home and at work; fatigue of this
tiredness that can strike at any moderate aerobic exercise; work magnitude is depressing; invisible
time of day simplification; use of assistive symptom that is easily misinter-
SECONDARY:
devices (e.g., electric scooter); preted by others
Resulting from disturbed sleep; cooling strategies/devices
depression; extra exertion due M E D I C AT I O N S :
to impairments; medications Amantadine (Symmetrel);

modafinil (Provigil); fluoxetine
(Prozac)

PSYCHOSOCIAL
S E N S O R Y P R O B L E M S / PA I N * *
SENSORY SYMPTOMS No treatment required unless Anxiety; discomfort;

(FROM LOSS OF MYELIN):
interfering with function; clumsiness; fatigue
Numbness, tingling
medication if necessary; increased by medications
referral to PT/OT if necessary and interrupted sleep
P R I M A R Y PA I N M E D I C AT I O N S : Medications increase fatigue

(FROM LOSS OF MYELIN):
Carbamazepine (Tegretol);
n Trigeminal neuralgia gabapentin (Neurontin);
(sharp facial pain) phenytoin (Dilantin); duloxetine
(Cymbalta); baclofen (Lioresal)
SURGERY:
Radiofrequency rhizotomy;
radiofrequency electro-
coagulation; glycerol rhizotomy
n
Dysesthesias (electric M E D I C AT I O N S : Medications increase fatigue
shock-like sensations in Same as above, or topical application
trunk or extremeties) of capsaicin cream)
n Numbness, tingling: High-dose IV steroids Steroids can affect mood

Retro-orbital pain
(with optic neuritis)
S E C O N D A R Y PA I N Analgesics; gait training; assess- Discomfort

( M U S C U L O S K E L E TA L ) :
ment of all seating (home, auto- Note: People often told by doctors
Resulting from poor posture/
mobile, work, and wheelchair/ that MS does not cause pain.
balance in ambulatory
scooter)
individuals or improper use/
fitting of wheelchair
PSYCHOSOCIAL
SEXUAL DYSFUNCTION**
P R I M A R Y ( R E S U LT O F Evaluation of medications that INDIVIDUAL:

N E U R O L O G I C I M PA I R M E N T ) :
might be interfering with sexual Significant impact on
Impaired arousal; sensory gratification; self-esteem;
function (e.g. antidepressants)
changes; reduced vaginal self-confidence; difficult/
MEN:
lubrication; erectile embarrassing to discuss
dysfunction; inability to Oral medications (sildenafil
with healthcare providers
reach orgasm Viagra; vardenafil Levitra;
tadalafil Cialis); injectable INTERPERSONAL:
or insertable medication Significant impact on

(alprostadilProstin VE, intimate relationships:
Muse); prosthetic devices n Sexual activity can be
WOMEN: difficult, exhausting, painful,
Lubricating substances; and unsatisfying
enhanced stimulation n Lack of arousal can be
misunderstood and resented
S E C O N D A R Y ( R E S U LT I N G F R O M Effective management of MS by partner
OTHER MS SYMPTOMS):
symptoms to reduce impact on n Learning new ways to be
Fatigue; spasticity; bladder/
sexual function intimate can be frightening
bowel problems; sensory changes
and difficult
interfere with sexual activity
n Caregivers may become
Note: Impaired arousal, erectile disinterested in, or
dysfunction, and inability to uncomfortable with,
reach orgasm can also result from their disabled partner
medications taken to relieve n Person living with MS may be
other symptoms, most notably
reluctant to become intimate
antidepressants.
with new partner

PSYCHOSOCIAL
SEXUAL DYSFUNCTION**
T E R T I A R Y ( R E S U LT I N G Individual and couples counseling Same as listed on page 16

F R O M D I S A B I L I T Y - R E L AT E D
AT T I T U D E S / F E E L I N G S ) :
and education
Feeling unattractive; unable
to attract a partner; believing
sexuality is incompatible with
disability
S PA S T I C I T Y

Phasic spasms (flexor

n 1. Rehabilitative PT (stretching;
or extensor) gait assessment)
Sustained increase in
n
muscle tone 2. Oral medications (baclofen Oral medications increase

Lioresal; tizanidine fatigue and weakness
Spasticity can range from
Zanaflex; diazepam Valium)
relatively mild to quite severe,
and treatment is approached
in a step-wise fashion 3. Intrathecal baclofen pump Surgical implantation of pump
in abdomen can be frightening
Note: Some degree of spasticity
may be required to support
weakened limbs. 4. Botulinum toxin injections
into individual muscles
5. Surgery Severing of tendons is irreversible
PSYCHOSOCIAL
SPEECH/SWALLOWING PROBLEMS**
Dysarthria poorly
n Assessment; exercise program; Slurring can be misinterpreted
articulated, slurred speech training with augmentative or as drunkenness or lack of
alternative communication intelligence; slow, slurred
devices, if needed speech interferes with
communication
n Dysphagia difficulty in Assessment; oral exercise program; Fear of loss of control,

swallowing that can lead modified diet; non-oral feeding choking; food needs to
to aspiration and/or strategies, if needed be blenderized; eating
inadequate nutrition is exhausting; loss of
pleasurable mealtimes;
loss of ability to eat orally
TREMOR
Involuntary movements of the INTERVENTIONS: Fear of loss of control

arms, legs, or head; tremor can Balance/coordination exercises; severe tremor is a major
be the least treatable and most weights on limbs or utensils threat to independence
debilitating symptom of MS
M E D I C AT I O N S : Medications can
Propranolol; clonazepam (Klonopin); increase fatigue
primidone (Mysoline); isoniazid
(Laniazid); buspirone (BuSpar);
ondansetron (Zofran)

PSYCHOSOCIAL
VERTIGO
Severe dizziness and nausea Oral medication (meclizine Vertigo interferes with
caused by inflammation in Antivert); IV fluids and high dose functioning at home and
the brainstem corticosteroids if nausea prevents at work; steroids can
the use of oral medications impact mood
V I S U A L I M PA I R M E N T * *
n Optic neuritis temporary M E D I C AT I O N S : Visual symptoms can threaten

loss or disturbance of vision, High-dose corticosteroids independent functioning (e.g.,
often accompanied by pain; driving), increase fatigue, and
may also cause blind spot interfere with activities at work
(scotoma) in center of vision and at home
n Diplopia double vision M E D I C AT I O N S : Steroids can impact mood

High-dose corticosteroids
n Nystagmus rhythmic M E D I C AT I O N S : Medication can

jerkiness or bounce in one Clonazepam (Klonopin) if necessary increase fatigue
or both eyes INTERVENTIONS:
Training in visual compensation,

environmental modifications,
adaptive equipment, as needed
SYMPTOM n While some symptoms are DISEASE
MANAGEMENT easy for people to associate M O D I F I C AT I O N
with a disease that affects the
(CONTD.)
nervous system including Since 1993, the U.S. Food and
sensory problems, weakness, Drug Administration (FDA)
DISCUSSING has approved several medications
loss of balance, or visual
D I F F I C U LT T O P I C S for use in multiple sclerosis. For
symptoms, people may
W I T H Y O U R PAT I E N T S the first time, we have the ability
neglect to mention other
As demonstrated in Table 1, problems that they assume to reduce disease activity for
MS can cause a wide variety are unrelated to the MS (e.g., many people living with MS.
of symptoms. Identifying and fatigue, bladder or bowel These medications are not designed
discussing a persons symptoms changes, sexual dysfunction, to cure MS or provide relief from
can be challenging at times, for cognitive changes, or pain). current symptoms in fact, the
several important reasons. effects on the disease may not be
For all these reasons, it is immediately apparent. However,
n While some changes are readily important to do a complete each of these medications has been
apparent such as walking assessment at every visit, asking shown in phase III clinical trials
problems, speech impairments, about symptoms or changes to provide significant long-term
or tremor others, including whether or not a person has benefit for people with relapsing
fatigue, bladder and bowel mentioned any difficulties. It forms of MS. Unfortunately,
changes, and cognitive and is equally important to make no medications have yet been
emotional changes, are less sure that people living with approved for the treatment of
visible to the observer. MS have access to accurate and primary-progressive MS.
comprehensive information
n While some symptoms are
about the disease so that they And none of these medications
relatively easy for people to
are aware of the kinds of changes are recommended for use by
discuss like fatigue, or
and symptoms it can cause. women who are pregnant or
double vision, stiffness, or
Publications about virtually trying to become pregnant, or
pain others are more
every aspect of MS and its who are breastfeeding. Women
embarrassing, such as cognitive
management can be downloaded should be encouraged to discuss
symptoms, bladder and bowel
from the National MS Society all of their medications with
dysfunction, sexual dysfunction,
website nationalMSsociety.org or their physician and/or nurse
and even depression.
requested in hard copy by calling prior to trying to conceive.
Note: The series entitled 800-344-4867). The Society is
Talking with Your MS The most current information
happy to make materials available
Patients about Difficult for clinicians about the disease
for you and your patients.
Topics can be downloaded modifying therapies can be
in PDF format from the found on the Societys website at
Societys professional website nationalMSsociety.org/DMTUpdate
at: nationalMSsociety.org/PRC and for patients at nationalMS-
Publications. society.org/Treatments.

Ongoing clinical trials are listed at: n Therapy should be continued the North American Research
nationalMSsociety.org/ClinicalTrials. indefinitely unless there is clear Committee on Multiple Sclerosis
Since new trials are announced lack of benefit, intolerable side (NARCOMS) found that one-
periodically, and additional effects, or a better therapy is third of people stop treatment
information becomes available identified. within the first nine months.
as trials are completed, it is n Natalizumab is generally The major obstacle to long-term
important to check these sites recommended by the FDA use of these treatments was the
on a routine basis. for patients who have had an perceived lack of effectiveness
inadequate response to, or as evidenced by the fact that the
THE ROLE are unable to tolerate, other symptoms stayed the same or
O F E A R LY multiple sclerosis therapies. got worse.
INTERVENTION
n Immunosuppressant therapy These therapies are known to
Based on clinical experience with with Novantrone may be be partially effective i.e.,
the interferon beta medications considered for selected they slow disease progression
and glatiramer acetate and relapsing patients with but do not stop progression or
the results of recent studies worsening disease. cure the disease. This means
confirming that early relapses that people are stopping the
The full text of the Consensus
can cause permanent axonal medications because they do not
Statement, which is currently
damage as well as destruction of understand why they are taking
under revision, can be down-
myelin, the National MS Society them in the first place. They start
loaded from the website at:
Clinical Advisory Board (NCAB) with unrealistic expectations, and
nationalMSsociety.org/Consensus.
supports early intervention with stop in frustration when those
one of these agents. The Consensus expectations are not met. Based
ADHERENCE on these findings, the researchers
Statement by the NCAB (last
TO THE DISEASE recommended improved education
revised in 2008 see Appendix C)
MODIFYING for people living with MS and
recommends that:
THERAPIES their families in order to bring
n Initiation of therapy with an their expectations more in line
The challenge to medical and
immunomodulatory medication with those of their physicians.
mental health providers is to
should be considered as soon as They further recommended
support the patients optimism
possible following a definite careful monitoring by healthcare
and hope for a benign disease
diagnosis of MS with active providers, in order to address
course while emphasizing the
disease, and may also be patients concerns, clarify
potential benefit of early treatment
considered for selected patients misconceptions, and manage
for a disease that is chronic,
with a first attack who are at side effects (NARCOMS, 1999).
unpredictable and largely invisible.
high risk of MS.
At the present time, about 60
percent of the 400,000 individuals
with MS in the U.S. are receiving
treatment with one of the disease-
modifying therapies. A study by
It has been demonstrated 3. Preparation stage: The patient PSYCHOSOCIAL
that interventions to promote expresses a determination to SUPPORT
adherence will be more effective start treatment within the next
if they match the patients month and together with the Psychosocial support is the fifth
readiness for change (Cassidy, physician and nurse, chooses major category of treatment in
1999). The Transtheoretical the most appropriate of the five MS, encompassing:
Model of Behavior Change as it available drugs. The providers
1. Disease-related education (more
applies to MS comprises several role is to work with the patient
recently termed psychoeducation
stages. While this is essentially to develop a treatment regimen,
a supportive educational
a nursing model, the principles address financial arrangements,
process designed to enhance
are basically the same for all and establish a support system.
peoples understanding of
health professionals working 4. Action stage: The patient is the disease, adaptive coping
with persons with MS. engaging in therapy with one of strategies, and available
1. Pre-contemplative stage: the five agents. The providers resources)
The newly-diagnosed patient role is to be available to address
2. Diagnosis/treatment of
is not yet contemplating concerns, problem-solve, and
emotional and/or cognitive
treatment (Im not sick provide continuing support.
problems
enough for that yet). The 5. Maintenance stage: Patients
3. Family interventions designed
providers role is to explore strive to adhere to commitment
to support family members
the patients understanding to treatment. Professionals
efforts to cope with the intrusion
of MS, personal beliefs about continue to provide support
of MS into the household
therapy, and perceived obstacles and follow-up, reinforce realistic
to starting therapy in an effort expectations, and repeat the 4. Support for peoples efforts to
to foster awareness of the disease intervention stages in the event remain productively employed
and understanding of his/her that the patient goes off therapy as long as they are able and
personal barriers to treatment. (Cassidy, 1999; Holland et interested, and to transition out
al., 2001). of the workforce when, and if, it
2. Contemplative stage: The
is necessary to do so
patient is actively considering
therapy but with some 5. Helping individuals with MS
ambivalence. The providers and their families to access
role is to educate with a focus available resources n
on anticipated benefits, the
risks associated with no
treatment, and a clarification
of the patients goals.

SOURCE Holland N, Wiesel P, Cavallo P, Rao SM, Leo GJ, Bernardin
et al. Adherence to disease- L, Unverzagt F. Cognitive
M AT E R I A L S
modifying therapy in multiple dysfunction in multiple
Aronson KJ, Goldenberg E, sclerosis: Part I. Rehabilitation sclerosis. I. Frequency,
Cleghorn G. Socio-demographic Nursing 2001; 26(5):172176. patterns, and prediction.
characteristics and health status Holland N, Wiesel P, Cavallo Neurology 1991; 41:685691.
of persons with multiple sclerosis P, et al. Adherence to disease- . Vollmer TL, Hadjimichael O.
and their care givers. MS modifying therapy in multiple The cause of non-adherence
Management 1996; 3(1):617. sclerosis: Part II. Rehabilitation to disease-course altering
Cassidy CA. Using the trans- Nursing 2001; 26(6): 221226. therapies. Multiple Sclerosis
theoretical model to facilitate Lublin FD, Reingold SC. 1999; 5 (supplement 1):S97.
behavior change in patients Defining the clinical course of Zorzon M, Zivadinov R, Boxco
with multiple sclerosis. Journal of multiple sclerosis: Results of an A, et al. Sexual dysfunction in
the American Academy of Nurse international survey. Neurology multiple sclerosis: A case-
Practitioners 1990; 11:281287. 1996; 46:907911. control study. 1. Frequency and
DeLuca J. What we know about Minden SL, Orav J, Reich P. comparison of groups. Multiple
cognitive changes in multiple Depression in multiple sclerosis. Sclerosis 1999; 5(6): 418427.
sclerosis. In LaRocca N & Kalb R. General Hospital Psychiatry 1987; Zorzon M, Zivadinov R,
Multiple Sclerosis: Understanding 9:426434. Monti Bragadin L, et al. Sexual
the Cognitive Challenges. dysfunction in multiple sclerosis:
Minden SL, Schiffer RB. Affective
New York: Demos Medical A 2-year follow-up study. Journal
disorders in multiple sclerosis:
Publishing, 2006. pp. 17-40. of the Neurological Sciences
Review and recommendations
Feinstein A, Feinstein K. for clinical research. Archives of 2001; 187(1-2):1-5.
Depression associated with Neurology 1990; 47:98104.
multiple sclerosis: Looking
Naismith RT, Trinkhaus K,
beyond diagnosis to symptom
Cross AH. Phenotype and
expression. Journal of Affective
prognosis in African-Americans
Disorders 2001; 66(23):
with multiple sclerosis: a
193198.
retrospective chart review.
Hadjimichael O, Vollmer TL. Multiple Sclerosis 2006; 12(6):
Adherence to injection therapy 775-81.
in multiple sclerosis. Neurology
Patten SB, Beck CA, Williams
1999; 52(supplement 2):A549.
JVA et al. Major depression in
multiple sclerosis. A population-
based perspective. Neurology
2003; 61: 1524-1527.
PA R T T H R E E :
THE UNIQUE ROLE Although we now have disease- Rehabilitation specialists target
O F R E H A B I L I TAT I O N modifying therapies available the following impairments in
IN MS to help slow the progression of their work with individuals with
multiple sclerosis, most people MS: fatigue, weakness, spasticity,
R E S T O R AT I V E & living with MS will continue to cognitive impairments, imbalance,
PREVENTIVE GOALS OF have limitations. Rehabilitation sensory loss, ataxia/tremor, pain,
R E H A B I L I TAT I O N I N M S in MS involves the intermittent or paraparesis, speech and swallowing
ongoing use of multidisciplinary problems, visual disturbances,
strategies to promote functional and bowel and bladder problems.
T H E R E H A B I L I TAT I O N
independence, prevent comp- The goal of these rehabilitation
TEAM
lications, and enhance overall interventions is to reduce
quality of life. It is an active disablement, as defined by
CHALLENGES IN MS
process directed toward helping the World Health Organization
the person recover and/or (WHO) in the International
maintain the highest possible Classification of Impairments,
T H E R E H A B I L I TAT I O N level of functioning and realize Activities, and Participation:
PA R A D I G M his or her optimal physical, A Manual of Dimensions
mental, and social potential of Disablement and Health
given any limitations that exist. (ICIDH-2). Disablement is an
The National Clinical Advisory umbrella term used to describe
Board of the National MS Society the consequences of any health
has adopted a series of recommen- condition (disease, disorder,
dations to provide guidance to or injury) on a persons body
health professionals, insurers, structures or functions, personal
and policy makers regarding the activities, and participation in
appropriate use of rehabilitative society. Although rehabilitation
therapies in MS (See Rehabilitation interventions cannot reverse the
Consensus Statement, Appendix D; neurologic damage caused by MS,
also available in PDF format at they can reduce disablement by:
nationalMSsociety.org/Expert-
n Minimizing the impact of
OpinionPapers.
existing impairment(s) on
day-to-day functioning

n Enhancing the persons ability modifications, and prevent injuries When multiple sclerosis has a
to carry out daily activities and and unnecessary complications. progressive course, rehabilitation
participate to the fullest extent While each intervention might be interventions are also designed
possible in all of his or her life of relatively short duration, the to help people maintain maximal
roles expectation is that the chronic, function in the face of disease
often progressive nature of MS will progression, and prevent injuries
necessitate repeated assessments and complications resulting
THE UNIQUE
and interventions over the course from immobility. Remaining
ROLE OF of the illness. stable, or holding ones own,
R E H A B I L I TAT I O N replaces improvement as the
IN MS targeted outcome. It is important
R E S T O R AT I V E
to keep in mind that accepting
In general medical practice, & PREVENTIVE limitations of function at any
the skills of rehabilitation GOALS OF point in the disease process
professionals are called upon can be emotionally devastating.
following a patients acute injury Rehabilitation professionals and
or illness, with the goal being one IN MS mental health professionals may
of partial or complete recovery. In multiple sclerosis, rehabilitation have a critical role to play in
The specialist enters the picture has both restorative and helping people living with MS
to solve a problem, and leaves preventive goals. Restorative modify their expectations and
when the problem is solved. rehabilitation is designed to help develop realistic goals, while
Rehabilitation specialists have the person reach his or her highest maintaining their self-esteem in
a somewhat different role in a physical, emotional, and functional the process.
chronic disease like MS. From level given the limitations imposed
the time of diagnosis onward by the illness. Thus, individuals
even before the advent of obvious
THE
who have recently experienced an
impairment the rehabilitation exacerbation and accompanying
specialist can provide education decrease in functional abilities, TEAM
and treatment designed to may require rehab interventions
promote good health and general The team concept is critical
designed to help them regain as
conditioning, reduce fatigue, and to the rehabilitation of people
much as possible of their previous
maximize participation in all life living with MS whether or
functional abilities. While total
roles. With the progression of not the various members of the
restoration of function may not
the disease, the rehabilitation team actually work in tandem
be possible, the goal is always
specialists role becomes a more within a single setting. Because
to maximize independence,
active one, involving structured, MS strikes at the peak years of
productivity, comfort, and self-care
problem-focused interventions career formation and family
while minimizing the impact of
to manage symptoms, enhance life, and because it can affect
the impairment and secondary
function, facilitate activities of so many different physical and
complications on the persons
daily living, identify appropriate psychological functions, it
activities and participation.
assistive devices and environmental demands the coordinated efforts
of an interdisciplinary team of and before medical or psychosocial PHYSICAL
professionals working collabora- crises have had a chance to develop. THERAPIST
tively with the person with MS These early interventions can
and his or her care partners begin the educational process The physical therapists goal is to
(significant other, other family that will help the person living evaluate and improve movement
members, paid assistant(s)). with MS to become an active, and function, with particular
well-informed partner in his or emphasis on physical mobility,
her own care. balance, posture, exercise, and
PERSON LIVING
fatigue and pain management. As
WITH MS part of the rehabilitative process,
NURSE
As the hub of the rehabilitation physical therapy helps people
team, the person living with The nurse generally functions meet the mobility challenges with
MS and his or her care partners as the teams coordinator. While exercise and the appropriate use
are the driving force behind the this nursing role may vary from of ambulation aids. Physical
rehabilitation process. In order one setting to another, it is therapy also assists people in
for the process to be successful, the generally true that the nurse, managing the physical demands
needs and priorities of the person who has the most frequent in their family, work, and social
living with MS must always serve contact with the person living lives while accommodating the
to guide the rehabilitation plan. with MS, is in the best position physical changes brought about
The other members of the team to identify the persons ongoing by the disease.
educate the person living with needs and coordinate referrals
MS about his or her options for to, and communication with, O C C U PAT I O N A L
care, and work collaboratively other team members. The nurse THERAPIST
with that person, and each other, can also serve in the role of case
to coordinate and facilitate the manager for those individuals The occupational therapists
interventions that are chosen. living with MS who are unable role on the rehabilitation team
or unwilling to handle that is to help people maintain the
role themselves. As a member everyday skills that are essential
PHYSICIAN
of the rehabilitation team, the for independent living and that
(Generally a neurologist or nurse provides education about allow for productivity at home
physiatrist): The physician often MS, teaches self-management and at work. The major areas
functions as the team leader. skills (self-injection and symptom targeted by the occupational
Beginning with the initial management strategies, bowel/ therapist include: fatigue,
assessment, the physician works bladder care, and skin care), cognition, upper body strength
with the person to identify treat- facilitates referrals, and provides and coordination, the use
ment needs and initiate the ongoing support for the rehab- of assistive technology, and
treatment process. Ideally, referrals ilitation process. instruction in behavioral and
to rehabilitation specialists are environmental modifications to
made during these early days of maintain maximal home, work,
treatment, while problems are and community participation.
smaller and more manageable,

SPEECH-LANGUAGE CHALLENGES We also need to be able to convey
PAT H O L O G I S T this message to people living
IN MS
with MS and their care partners.
The speech-language pathologist R E H A B I L I TAT I O N Most people are accustomed to
primarily addresses problems the acute illness model in which
MS has several relatively
resulting from impaired muscle one gets sick, gets treatment,
unique characteristics that make
control in the lips, tongue, soft and gets well. The challenge
rehabilitation interventions
palate, vocal cords, and diaphragm, posed by a chronic illness is to
particularly challenging:
which interfere with speech maintain a positive, hopeful
production, voice quality, and outlook in the face of disease
swallowing. The goals are to MS IS A progression. The person living
promote effective communication CHRONIC DISEASE with MS needs to deal with the
and identify and address realities of MS whatever they
Although significant progress
swallowing problems that can turn out to be and recognize
has been made in our efforts
compromise a persons health, that disease progression is not
to alter the course of MS, it
comfort, and safety. Speech- a sign of personal weakness or
remains an incurable disease.
language pathologists are also failure. He or she needs to be
For healthcare professionals who
involved in the assessment able to acknowledge the limitations
are used to achieving a cure or
and management of cognitive posed by the disease and establish
bringing an end to a problem,
dysfunction in people living personal goals that are possible
MS poses a daunting challenge.
with MS, particularly as it to achieve. Thus, the goal to be
MS forces us to re-frame our
relates to communication. able to walk without assistance
treatment priorities and change
may need to be replaced by the
the yardstick by which we
ADDITIONAL goal to remain comfortably
measure our successes. The person
R E H A B I L I TAT I O N and independently mobile. We
we treat today will probably be
need to maintain our confidence
RESOURCES back often more impaired
and hope in the rehabilitation
than the first time, and less
The comprehensive rehabilitation process so that we can pass it on
impaired than the next time.
team must have access to a variety to our clients when their own
We need to learn to measure
of other resources, including faith in the process is challenged.
our degree of success not by our
psychologists, neuropsychologists, ability to make the person well, Within the context of a chronic,
social workers, dieticians, orthotists, but by our ability to help that often disabling disease like MS,
vocational rehabilitation specialists, person function optimally and the persons outlook fluctuates
and any other professionals whose maximize his or her quality of between hopelessness and hope.
services might be enlisted to life given the current level of As defined by Morgante and
enhance a persons health and impairment. McCann (2002), Hope is the
safety, functional independence,
smallest or largest expression of
and quality of life.
the spirit of optimism.
to, the rehabilitation process.
Rehabilitation specialists need
to be creative in supporting
HOPEFUL VS: HOPELESS the persons efforts to re-adjust
ABLE TO VERBALIZE GOALS FEELS SAD his or her goals as the disease
M O T I VAT E D T O A C H I E V E G O A L S SHOWS LOSS OF INTEREST
changes from day-to-day or
H A S P O S I T I V E AT T I T U D E H A S N E G AT I V E AT T I T U D E
U T I L I Z E S S U P P O R T/ IS UNABLE TO ACHIEVE GOALS
year-to-year, while emphasizing
ENERGY OF OTHERS
SHOWS LACK OF ENERGY the importance of adaptive
E X PA N D S B O U N D A R I E S I N A B I L I TY TO U S E R E S O U R C E S
modifications.
M S I S A S S O C I AT E D
WITH HIGH LEVELS
FIGURE 5
O F F AT I G U E
While this concept was conceived realistic goal-setting cannot be Fatigue, the most common
within the field of nursing, it over-emphasized. The goals symptom reported by people
pertains equally to any health- must be flexible and problem- living with MS, is caused by the
care provider working with focused so that they can be disease itself (called primary MS
individuals with MS. We are altered in response to changes in fatigue), as well as by secondary
all in a position to provide the the disease. In addition, it is critical factors associated with the disease.
resources needed to promote that the therapist, patient, and Common secondary causes
optimism and hope, and prevent even the patients care partner(s) of fatigue include weakness
hopelessness and despair. To do share an understanding and (including nerve fiber fatigue)
this, we must be sensitive to these acceptance of the goals being leading to disability, sleep
feelings in ourselves as well as in targeted at any given point in time. disturbance, aerobic and muscular
the people with whom we are deconditioning, side effects of
The variability of MS also has an
working. Figure 5 is a diagram medications, other medical
impact on treatment adherence.
representing the fluctuations from conditions, heat sensitivity,
The person with relapsing disease
hope to hopelessness and back and depression. Rehabilitation
may find it difficult to adhere to a
again that are present in all of us. professionals should be alert
treatment regimen during periods
of remission, because of a wish to these potentially treatable
MS IS to believe that the MS has secondary sources of fatigue.
CHARACTERIZED disappeared forever, and during For people living with MS
B Y VA R I A B I L I T Y & relapses because of increased who find it difficult to make it
U N P R E D I C TA B I L I T Y fatigue, debilitating symptoms, through their daily activities,
and feelings of anger or despair. there is often little energy left
Because MS is so variable from In addition, the day-to-day for therapy visits, exercise
one individual to the next, and unpredictability of the disease can programs, or any other types of
from time to time in any given gradually chip away at a persons interventions.
individual, the importance of confidence in, and commitment

These may readily come to DEPRESSION IS COGNITIVE
be seen as extra burdens on P R E VA L E N T I N M S DYSFUNCTION
an already overburdened day. OCCURS IN HALF
Furthermore, people living with Depression is more common
in MS than in other chronic OF THE MS
MS often resist using the kinds
of gait/mobility assistive devices diseases, including those that are P O P U L AT I O N
that would help them manage equally disabling. At least 50%
Cognitive dysfunction is common
their fatigue because they do not of people living with MS will
in MS. Approximately 5060%
want to give in to the disease. experience a major depressive
of people living with MS will
Effective fatigue management and episode at some point in the
experience some degree of
education are the keys to this course of their illness. Although
impairment over the course of the
particular challenge. People living the reasons for this are not clear,
illness. While for most, the changes
with MS and their care partners it appears that depression in MS
will be relatively mild, and there-
need to be educated about the is related not only to the stresses
fore manageable with the use
causes of fatigue and effective it imposes on everyday life, but
of appropriate compensatory
fatigue management strategies also to lesion damage and atrophy
strategies, approximately 10% of
including exercise, the use of in particular areas of the brain.
those with cognitive dysfunction
assistive devices as tools to reduce And there is suggestive evidence
will experience changes severe
fatigue and enhance independent that immune abnormalities may
enough to interfere significantly
functioning, good sleep hygiene, be involved as well. Whatever
with daily functioning. Among
emotional well-being, and its causes, however, depression
the cognitive problems that can
medication management. The can profoundly impact our
occur in MS, the ones most
National MS Society has created rehabilitation efforts. A person
commonly seen include: memory
a small-group video training series who is depressed or dysphoric
impairment, problems with
entitled Fatigue: Take Control, finds it difficult if not impossible
attention and concentration,
which can assist rehab professionals to collaborate in his or her own care.
slowed information processing,
efforts to treat fatigue. The series, The rehabilitation team can only
impairments in executive functions
based on the Clinical Practice succeed if the person living with
(i.e., the ability to plan, organize,
Guideline, Fatigue and Multiple MS is an active, participating
and problem-solve), visual-spatial
Sclerosis, developed by the Multiple member. Therefore, adequate
deficits, and word-finding
Sclerosis Council for Clinical assessment, diagnosis, and treat-
difficulties.
Practice Guidelines, is available ment of depressive symptoms
by calling 1-800-344-4867. are essential to the rehabilitation Degree of cognitive impairment
process. in MS is unrelated to severity of
physical disability. A person with
significant physical impairment
might remain cognitively intact
while a person with no physical
limitations might demonstrate
significant cognitive deficits.
research in MS rehabilitation
will also attempt to identify new
types of treatment protocols,
I N I T I A L A S S E S S M E N T/ GOAL SETTING
R E - E VA L U AT I O N including those that move beyond
the goal of optimizing functional
R E H A B I L I TAT I O N recovery with compensatory
PA R A D I G M
techniques to therapies that
OUTCOMES actually enhance neuronal
ASSESSMENT INTERVENTIONS
compensation and nervous system
regeneration. The future of MS
rehabilitation will be looking
to exploit the nervous systems
FIGURE 6 capacity for reorganization and
recovery (Aisen, 1999).
In addition, cognitive impairment in the care of people living with
can occur very early in the disease, MS. Early specialists argued In the meantime, the goal is
even as one of the presenting that there was no justification to intervene in ways that help
symptoms, or appear much later for rehabilitation in a chronic, people regain a sense of control
in the disease course. Therefore, progressive illness. Why put over their bodies and their lives,
we cannot make any assumptions effort and resources into people and increase their self-esteem.
about a persons cognitive status who would only get worse? Rehabilitation, regardless of the
based on physical symptoms or Research demonstrates, however, discipline that is providing the
time since diagnosis. that multidisciplinary rehabilita- care, is a process not of curing,
tion programs are beneficial for but of self-healing, both physical
A persons ability to participate and emotional.
people living with MS (Baker
effectively in the planning
et al., 2001; Mathiowetz et al.,
and implementation of the
rehabilitation process will
2001; Aisen, 1999; Freeman et THE
al., 1999; Solari et al., 1999;
depend, at least in part, on his R E H A B I L I TAT I O N
LaRocca & Kalb, 1992).
or her cognitive status. There- PA R A D I G M
fore, the interventions we offer Even in the presence of deterior-
need to take into account any ating neurologic status, people The rehabilitation process is
cognitive problems that might receiving intensive rehabilitation both multidimensional and
interfere with that participation. have demonstrated improvements dynamic. Using the paradigm
Our communication style, teaching in activity level and participation, shown in Figure 6, each member
strategies, and intervention as well as emotional well-being. of the team is working with the
methods must be suited to the Future research is needed to person living with MS to enhance
persons cognitive abilities and determine the relative efficacy of or preserve function in a given
deficits. It is because of these different lengths of inpatient area.
challenges that rehabilitation only rehabilitation stay and outpatient
recently came to have a major role rehabilitation programs. Future

Since goal-setting always leads
to further interventions, and PHYSICAL
THERAPY
interventions are always followed
by outcomes assessments and
re-evaluation, the process is
theoretically a never-ending NURSING
PERSON WITH O C C U PAT I O N A L
THERAPY
M U LT I P L E S C L E R O S I S
one. Furthermore, the person
living with MS may be working
simultaneously on a different set
of goals with each member of SPEECH/
LANGUAGE
the team. It is possible, there-
fore, to visualize this process as a
set of interlocking rings (Figure 7), FIGURE 7
with the person with MS being
the unifying link. whose care they share. Beginning The initial assessments set the
in this earliest phase of the stage for the rehabilitative
rehabilitation process, the person process by establishing a base-
THE INITIAL
with MS takes center stage, line for the various aspects of a
ASSESSMENT
providing the focus and direction persons functioning. Because of
The quality of our rehabilitation of the assessment process. the unpredictable nature of the
interventions can only be as good disease, however, re-assessments
While each rehabilitation specialty
as the assessments on which they are recommended whenever there
has its own particular assessment
are based. Since the person living is a sustained change in a persons
protocols, they share a commitment
with MS may be experiencing a condition. While the ideal situation
to the biopsychosocial approach to
range of interrelated problems, would allow for the individual
disablement. Within this bio-
the ideal approach to assessment specialist to schedule periodic
psychosocial model, as defined by
is a collaborative one, in which assessments, the realities of the
the ICIDH-2 of the World Health
the members of the rehabilitation current healthcare environment
Organization (see Appendix C),
team pool their findings. Using seldom allow for this. In most
assessment is required not only
this information, they can work cases, it is the nurse who has
of a specific impairment, but
with the person with MS to frequent enough contact with
of the consequences of that
identify areas of potential change, a person to identify sustained
impairment for a persons daily
and establish priorities for the changes in his or her condition
activities and participation in
interventions that are needed. that warrant referral back to the
his or her world. Given our
Even those rehabilitation specialists rehabilitation specialist for a
current healthcare systems, quick
who work independently, on thorough re-assessment.
and efficient patient assessments
a private referral basis, will
are essential.
find it mutually beneficial to
communicate with one another
about a person living with MS
GOAL SETTING Since the person may tend to members with valuable insights
focus on goals that are unrealistic regarding the patients motivation,
Once the members of the (e.g., My only goal is to walk problem-solving skills, and family
rehabilitation team have completed unassisted.), it is the responsibility process. The nurse effectively
their individual assessments, of the rehabilitation team to functions as a coordinator or
they can begin to work with one provide adequate emotional care/case manager, overseeing
another, and with the person support while educating the cost- effective, efficient, and
living with MS, to establish person about the importance of beneficial coordination of
meaningful treatment goals. realistic goal setting for meeting therapies.
This is a critical point in the his or her priorities. Trading
intervention process because unrealistic goals for realistic ones E VA L U AT I O N
appropriate goals are the key to can be a painful process. The
a successful outcome. Realistic person may need the additional At the time of initial contact,
goals based on accurate baseline support of a psychotherapist at and periodically throughout the
assessment prevent us from this time, particularly if his or her course of the disease, the nurse
encouraging the person to reluctance or inability to engage evaluates the persons overall
function below his or her actual in realistic goal-setting is blocking health status and identifies
capacity, or to overcompensate the rehabilitation process. specific needs in the areas of:
by attempting to achieve activity
n MS education: including
levels beyond realistic expectations
(LaBan et al., 1998). INTERVENTIONS information about the disease,
available treatments and
The role of the rehabilitation NURSING symptom management
specialist in this process is to The nurse involved in rehabilitation strategies, and helpful resources
help the person living with MS of the person with MS functions n Medical symptom management:
understand the problems he or as a change agent and patient focusing on implementation
she is experiencing, and the advocate, empowering a patient of the physicians prescribed
treatment/management options and family to know, envision, and interventions
that are available to address those evaluate options and to work n Self-care strategies: including
problems. Because the goal of together formulating problem- bowel and bladder regimens
rehabilitation is to enhance solving strategies and behaviors and self-injection techniques
function within the context of to achieve outcomes. In addition
a persons life, rehabilitation n Referrals to other members
to providing direct physical care,
specialists need to take particular of the rehabilitation team:
the nurse evaluates the health
care to elicit and address the assessing the need for evaluations
status of the patient, helps
persons own priorities. A person and interventions by specialists
determine short- and long-term
whose goals are being ignored is on the team
goals, interprets medical terms,
unlikely to bring much enthusiasm acts as a resource for community
or persistence to the rehabilitation services, and provides education
process. for the patient and family. Often
the nurse can provide fellow team

n Treatment adherence: focusing NURSING INTERVENTIONS n Training and support for
primarily on the persons immunomodulating therapies:
The specific interventions carried
compliance with early treatment The nurse has a primary role in
out by the nurse fall under three
recommendations and adherence education and training in the
main categories: education and
to the immunomodulating use of immunomodulating
support; implementation of
therapy protocol therapies. The nurses availability
symptom management strategies;
n Cognitive status: alerting team to clarify and reiterate the
and training and support for
members to early signs of rationale for early treatment
immunomodulating therapies.
cognitive changes that might in MS, teach self-injection
interfere with the treatment n Education and support: The nurse techniques, outline management
process is a supportive presence through- strategies for possible side effects,
out the persons experience of and provide support during
n Emotional well-being:
MS providing comprehensive the learning and adjustment
assessing the persons emotional
but comprehensible information phase, seem to be key elements
state and the presence of
about MS, responding to in promoting adherence to
depressive symptomatology
questions, clarifying commun- treatment.
n Psychosocial adjustment: ications to and from the physician,
assessing the persons support identifying useful resources, and PHYSICAL &
system, family relationships and helping to ensure that the person O C C U PAT I O N A L
communication, and employment is a comfortable and informed THERAPY
situation participant in his or her own
n care. The information and ongoing The primary goal of physical
Personal assistance: assessing
support provided by the nurse is and occupational therapy (PT
the persons need for help with
often a determining factor in the and OT) in MS is to minimize
personal care or household
persons ability to understand and the impact of existing impairments
management
follow through with the treatment on a persons ability to carry out
In many respects, the nurse recommendations of the members daily activities and participate
functions as the eyes and ears of of the rehabilitation team. comfortably and effectively in
the team, providing information his or her world. To accomplish
n Implementation of medical
and feedback to team members this goal, PTs and OTs must
management strategies: The
about the persons physical, have an in-depth, working
nurse assists the person with MS
emotional, and cognitive state, knowledge of multiple sclerosis and
in implementing the physicians
and ability to be an active the symptoms it can cause, and
symptom management strategies
participant in his or her own care. be able to translate the multiple,
(see Table 1, pages 1219).
Having identified the persons often interactive, presenting
needs, the nurse acts to coordinate complaints into their underlying
the necessary interventions, impairments. Regardless of the
thus helping to ensure that the specific impairment(s) being
identified needs are adequately addressed, however, the strategies
addressed. utilized by these specialists
emphasize a thorough assessment.
For additional information n Modification and compensation n Self-management via skills
about the role of physical and more than restoration: While training and the use of
occupational therapy in MS, some restoration of function adaptive equipment: A primary
refer to the Clinical Bulletins, may occur following an acute objective of PT/OT interventions
Occupational Therapy in exacerbation, the primary is to help people with MS learn
Multiple Sclerosis Rehabilitation emphasis in OT and PT is on to manage their own disease
and Physical Therapy in teaching the person effective as comfortably and effectively
Multiple Sclerosis Rehabilitation ways to compensate for existing as possible. Skills training and
in Appendix D or at nationalMS impairments and make the the proper use of adaptive
society.org/ClinicalBulletins. necessary adaptation to equipment will make it possible
behavioral and environmental for people to keep their lives as
E VA L U AT I O N modifications. It is these full, active, and satisfying as
adaptations that will allow they want them to be. PT and
A thorough neuromusculoskeletal the person to remain functionally OT are discussed together in
evaluation provides baseline independent and productive, this section because there is
information about the persons regardless of the extent of considerable overlap in the
physical status and present level impairment. evaluation and treatment
of function. The initial evaluation strategies used by these two
n Education, support, and
should include assessment of all specialty areas. Furthermore,
motivation: A major focus of
symptoms currently affecting the same problem that is treated
the interaction between the
the individuals performance, with PT in one setting may well
therapist and the person with
including those listed in Appendix be treated by OT in another
MS is motivational. The therapist
E, pp. 108-111. The evaluation setting. The following factors
helps the person to understand
focuses on the following areas: are likely to determine which
the connection between the
n Early intervention: Early intervention being prescribed of these specialists evaluates/
intervention can help people (e.g., exercise regimen, assistive treats a particular person
continue to function effectively device, environmental with MS:
in their life roles and prevent modification, etc.) and the
The persons insurance plan,
premature retirement from the persons own goals. It is only which may cover one specialty
workforce. The increased stability with this understanding that but not the other
provided by the new disease- the person will develop the
The particular background
modifying drugs allows more motivation and commitment and training of the OT and
opportunities for therapists to necessary to follow through PT at a given facility
intervene to preserve a persons on a lifetime of adaptation

The availability of only
individual activities and overall and change.
one of these specialists in a
participation.
given facility or geographic
area
Institutional variation

ASSESSMENTS & n Be realistic, given the persons the realities of todays healthcare
INTERVENTIONS goals, abilities, and resources: system(s) preclude ongoing PT/
For example, prescribing a OT interventions for people
Taking these factors into
water exercise program for a living with MS, the continuity of
account, Table 3 (see p. 36-38)
person who dislikes the water, care can be assured with periodic
presents the assessments and
has no access to a swimming reassessment to update the
interventions used by PT and/or
pool, or whose presenting recommendations for exercise,
OT to address specific impair-
complaint is overwhelming energy effectiveness strategies,
ments, and points out specific
fatigue that prevents her from behavioral and environmental
areas in which one or the other
lasting a full day at work, is modifications, and assistive
specialty is most likely to be
unlikely to prove beneficial. technology.
involved.
A successful intervention for
With the advent of disease-
In order for interventions to be this person would identify the
modifying agents to prolong
successful, they must: possible source(s) of her fatigue,
time between attacks and slow
and evaluate and modify her
n Target the appropriate disease progression, PT and OT
home and work environment
underlying impairment: interventions are more important
and energy effectiveness
A thorough and careful and more cost-effective than ever
strategies. The intervention
assessment should precede before. Therapy interventions
should also evaluate her need
any intervention in order to have the potential to last longer
for assistive equipment, provide
ensure that the sources of and have a greater impact on
training in its use, and provide
the presenting complaint peoples efforts to live comfortable
her with an aerobics exercise
have been correctly identified. and satisfying lives with MS.
program that fits realistically
n Be consistent with the persons into her lifestyle.
goals: The person with MS is the SPEECH & LANGUAGE
focal point of the rehabilitation Although the table lists various
scales and questionnaires among Speech-language pathologists
effort. His or her goals need to
the assessment strategies, it is play an integral role in the
drive the rehabilitation process
important to remember that rehabilitation of people living
if the process is to succeed.
most have not been standardized with MS. Their focus is in three
When people understand the
in MS. PT and OT assessments primary areas the assessment
connection between their own
of people living with MS involve and treatment of speech, swallowing,
goals and the recommended
a mixture of art and science, and cognitive disorders. Along
treatment interventions, they are
calling upon the professional with neuropsychologists and
more likely to follow through with
to be thorough, intuitive, and occupational therapists, speech-
treatment recommendations.
creative in his or her approach. language pathologists provide
Ideally, persons with MS should evaluations of cognitive function
be re-evaluated periodically and provide interventions to help
by PT and/or OT because the cognitively-impaired individuals
symptoms of MS can change function more comfortably and
significantly over time. Although effectively.
TA B L E 3 : C O M P L A I N T S ,
ASSESSMENTS, & INTERVENTIONS*
F AT I G U E
Modified Fatigue Impact Scale; 25-foot walk; Manual Energy effectiveness strategies; aerobic exercise program;
Muscle Test before and after 6-minute walk; aerobic equipment modifications (mobility, self-care, and ergonomic);
fitness assessment (before prescribing aerobic program); environmental and behavioral modifications (home and
equipment assessment; activity diary; Sleep Questionnaire; job-site); transportation
evaluation of medications for impact on fatigue level;
depression instrument
F A L L I N G / W A L K I N G D I F F I C U LT I E S
Manual Muscle Test; 25-foot walk; 6-minute walk; gait Gait training; gait assistive devices; behavioral and
analysis; analysis of environment and tasks; vestibular environmental modifications; powered mobility
and sensory/proprioceptive assessments; safety evaluations equipment; cooling strategies
WEAKNESS
Manual Muscle Test; Dynamometer; Pinch Meter; Exercises for deconditioning; adaptive equipment;
gait analysis; analysis of environment and tasks environmental modifications; cooling strategies
POOR BALANCE
Vestibular, proprioceptive, sensory, spasticity, and gait Vestibular exercise program; supportive footwear; gait
analyses; Berg Balance Scale; 6-minute walk; 25-foot assistive devices; gait training; behavioral modification;
walk; Manual Muscle Test environmental modification; cooling strategies
S T I F F N E S S , S PA S M S , S PA S T I C I T Y
Range of motion; Ashworth or Modified Ashworth; Stretching exercise program; environmental modifications;
assessment for baclofen pump if severe cooling strategies; standing frame; AFO; positioning;
baclofen pump

COGNITIVE CHANGES (OT)
Referral to a neuropsychologist; Modified Fatigue Impact Instruction on compensatory strategies; assistive devices
Scale; Perceived Deficits Questionnaire; PASAT and and environmental modifications
possibly other neuropsychological screens
R E D U C E D M A N U A L D E X T E R I TY ( OT )
9-Hole Peg Test; Box and Block; Dynamometer; Environmental modification; behavioral modification;
Pinch Meter; Semmes-Weinstein Sensory Test; voice-activated software; bigger grips; assistive devices;
spasticity; coordination stretching; positioning
PA I N
Trigger point assessment; pain scales; posture Equipment/seating modifications; relaxation; exercise;
assessment; equipment/seating assessment; central pain management techniques; behavioral/environmental
vs. peripheral symptoms modifications
T R E M O R / ATA X I A
9-Hole Peg Test; ADL assessment; 25-foot walk; Gait assistive devices; powered mobility equipment;
Manual Muscle Test; safety evaluation; Canadian weighting; proximal stabilization; behavioral modification
Occupational Performance Measure (COPM); FIM,
or other ADL assessment
SENSORY CHANGES (INCLUDING PROPRIOCEPTION)
Proprioception; Semmes-Weinstein Sensory Test; Larger grips; textured surfaces; supportive footwear;
hot/cold discrimination voice-activated software; sensory precautions
POOR VISION (OT)
Visual acuity; tracking; peripheral vision; visual- Behavioral modification; environmental modification
perceptual assessment
DECREASED FUNCTIONAL INDEPENDENCE
COPM; FIM, or other ADL assessment Assistive equipment; powered mobility equipment;
behavior and environmental modifications
* Examples presented should not be considered exhaustive.
TA B L E 4 : R A N K O R D E R O F
D E V I AT I O N S I N S P E E C H & V O I C E I N M S
PERCENT (N=168) D E V I AT I O N DESCRIPTION
77% Loudness control Reduced, mono, excess or variable
72% Harsh voice quality Strained, excess tone in vocal cords
46% Imprecise articulation Distorted, prolonged, irregular
39% Impaired emphasis Phrasing, rate, stress, intonation
37% Impaired pitch control Monopitch, pitch breaks, high, low
35% Decreased vital capacity Reduced breath support

and control
24% Hypernasality Excessive nasal resonance

Because the subject of cognitive The most common speech and n Respiration: use of the
dysfunction and its management voice disorders in MS have been diaphragm to fill the lungs
is covered in depth in Multiple characterized by Darley and fully, followed by slow,
Sclerosis: A Model of Psychosocial colleagues as mixed spastic-ataxic controlled exhalation for
Support, the emphasis here will be dysarthria, consisting of impaired speech
on the rehabilitation of speech and loudness control, voice harshness, n Phonation: use of the vocal
swallowing problems. defective articulation, impaired cords and airflow to produce
emphasis, and impaired pitch voice of different pitch,
MS lesions in the brain can
control. Mixed dysarthria results loudness, and quality
interfere with muscle control
from bilateral, generalized
in the lips, tongue, soft palate, n Resonance: raising and lowering
lesions in multiple areas in the
vocal cords, and diaphragm. of the soft palate to direct
cerebral white matter, brainstem,
These muscles control speech the voice to vibrate in either
cerebellum, and/or spinal cord.
production and voice quality as the mouth or nose, further
The speech processes in MS may
well as the process of swallowing. affecting quality
improve with remission of the
disease and worsen during n Articulation: quick, precise
DYSARTHRIA movements of the lips, tongue,
exacerbations. Furthermore,
MS-related fatigue can periodically and soft palate for clarity of
(For additional information
alter a persons ability to speak speech
see Appendix D, page 60)
clearly. Therefore, the evaluation, n Prosody: combination of the
Dysarthria is defined as impair-
goal-setting, and intervention preceding elements to create a
ments of articulation, voice,
components of rehabilitation natural flow of speech, with
or resonance, resulting from
need to take into account this adequate rate, appropriate
neurologic disease, injury, or
variability in symptoms. pauses, and meaningful
surgery. Approximately 41% of
variations in loudness and
individuals with MS will
E VA L U AT I O N emphasis to convey meaning
experience voice (dysphonia)
and articulation problems The evaluation of the speech-
T R E AT M E N T G O A L S
(dysarthria) in the course of language system determines
their disease. These deficits are which areas are contributing to Not every MS patient with
more likely to occur in those the communication problems, dysarthria is a potential
people with demyelination in and provides the basis for goal- candidate for treatment
the brain stem, cerebrum, and setting and development of a (Johns, 1978).
cerebellum. The severity of treatment plan. An evaluation
symptoms will tend to correspond should assess the following
with overall disease severity, but elements of normal speech
not with duration of illness, age, (Sorensen, 2008):
or age of onset. The prevalence
of MS-related speech and voice
problems is presented in Table 4
(Darley et al., 1972).
A persons suitability for treatment The following questions can T R E AT M E N T
will depend upon several factors, be used to guide appropriate INTERVENTIONS
including: the severity of the referrals to a speech-language

The treatment for spastic-ataxic
disease course and speed of pathologist (Sorensen, 2000):
dysarthria is different in scope
progression; the number and
1. Are problematic speech and and expected outcome from the
types of speech problems the
voice characteristics detracting treatment for the dysarthria seen
person has; the persons cognitive
from the message that is being in Parkinsons disease or following
and emotional status; and the
communicated? a cerebrovascular event. The goal
availability of supportive
in MS is to identify any problems
communication partner(s). 2. Are speech and voice
with respiration, phonation,
Realistic goal-setting in the adequate for the persons daily
articulation, resonance, and
treatment of persons with MS communication needs (keeping
prosody, and work to strengthen
recognizes that recovery of in mind that the needs of an
and/or maintain motor skills
normal speech and neuro- unemployed person who lives
that facilitate functional verbal
muscular function is unlikely with a spouse of 20 years are
communication. The treatment
to occur. Therefore, therapy different from those of a teacher
strategies utilized in MS will vary
should be focused primarily or public speaker)?
with the specific symptoms as
on enhancing communication 3. Are speech, voice, and well as the individuals capabilities
and ensuring that the person is communication problems and willingness to participate in
communicating at the optimal interfering with the persons treatment (Merson & Rolnick,
level given his or her remaining quality of life (e.g., resulting 1998).
level of function. Unfortunately, in social isolation or problems
referrals to the speech-language on the job)? The treatment strategies for
pathologist are frequently made spastic-ataxic dysarthria may
4. Are speech, voice, and
only after the person has become include both pharmacologic
communication problems
severely impaired. interventions and rehabilitative
perceived as troublesome by
techniques. See Table 5 (adapted
The earlier a person is referred the patient or family?
from Sorensen, 2000) for an
for help in this area, the more
overview of treatment strategies.
potential there is for maintaining
adequate, comfortable speech.
It is incumbent on the entire
rehabilitation team to be alert
to early signs of speech-language
deficits so that interventions can
be made in a timely fashion.
(Klitzke & Schapiro, 1991).

TA B L E 5 : T R E AT M E N T I N T E R V E N T I O N S
F O R M S - R E L AT E D S P E E C H P R O B L E M S
PROBLEM T R E AT M E N T A P P R O A C H E S
LOUDNESS CONTROL
REDUCED LOUDNESS n Medication trial for spasticity and/or fatigue

n Proper positioning, head/trunk support
n Breath support and control exercises
n Improved diaphragmatic breathing technique
n Spirometer to monitor inspiration for speech
n Tape recorder or speech lab computer software to monitor loudness
n Practice of phrasing (maximum # or words/breath unit)
when reading aloud and talking

n Portable voice amplifier
Tape-recording of passages to practice reading aloud with specific

MONOLOUDNESS n
words underlined to enhance meaningfulness

n Transfer of new skill from oral reading to conversation
E X C E S S & VA R I A B L E L O U D N E S S n Medication trial for tremor and ataxia

n Proper sitting posture, trunk stabilization, head control
n Relaxation techniques and EMG/biofeedback to promote
smooth respiration for speech and easy onset of voicing

n Tape recorder or speech lab computer software to monitor
loudness bursts
n Practice of new skill during oral reading and conversation
VO I C E Q U A L I TY
HARSH, STRAINED n Medication trial for spasticity

n Relaxation techniques/biofeedback to monitor laryngeal
muscle control
n Open mouth and yawn-sigh approaches during speech drill
n Tape recorder and computer software such as Visi-Pitch for
identifying and matching target voice quality

n Practice of new skill in words, sentences, and conversation
H Y P E R N A S A L I TY n Soft palate exercises to improve velo-pharyngeal competence

n Increased breath support
n Articulation drill with plosives and their contrasting nasal glides
n Open mouth approach to direct more oral than nasal air flow
n Slowed rate of speech to allow extra time for velar movements
n Tape-recording to identify and match target voice quality
n Practice in words, sentences, and conversational groups
VOCAL TREMOR n Medication trial for tremor and ataxia

n Evaluation for botulinum toxin
n Proper sitting posture, trunk stabilization, head control
n Relaxation techniques and EMG/biofeedback to control tremor
n Tape recorder and speech lab computer software for monitoring
phonation breaks and identifying target voice quality

n Practice during reading aloud and conversation

A R T I C U L AT I O N
P R E C I S E A R T I C U L AT I O N
IM n Medication trial for spasticity, tremor, ataxia, and/or fatigue
O R I R R E G U L A R A R T I C U L AT O R Y

BREAKDOWNS n Oral exercise to improve range of motion, strength, speed, and coordination
n Enhancement of breath support and respiratory control
n Relaxation techniques and EMG/biofeedback to monitor and control
n Tone and movement of specific articulators and the timing of respiration,
phonation, and articulation

n Identification of error patterns; articulation drill
n Practice of behavioral compensations: slow rate; overarticulation; phrasing
n Use of pacing board or delayed auditory feedback unit to slow speech rate
n Use of tape recorder or speech lab computer software to monitor articulation
n Practice of new skill during reading aloud and conversational groups
n Training of dysarthric speaker to attend to listener and solicit feedback;
training of communication partners to provide cues

n Use of alternative communication devices
PROSODY
REDUCED LOUNESS Stress patterning techniques to practice natural variation in loudness and
pitch of key words
MONOLOUDNESS Use of tape recorder to compare monotonous patterning with stress patterning
MONOPITCH Practice of emphasis on most important word in a Q&A drill
REDUCED, EXCESS, OR EQUAL STRESS Read-aloud tasks utilizing underlined key words; use of tape recorder to self-
evaluate effectiveness of different stress parameters (loudness, duration, pitch)
E X C E S S & VA R I A B L E L O U D N E S S Use of speech lab computer software to visualize and match targeted
variations in fundamental frequency and intensity
S L O W O R VA R I A B L E R AT E Controlling speech rate by interjecting pauses in logical places; use of rigid

rate control devices such as a pacing board, DAF unit, or alphabet board
supplementation, with plan to achieve rate control without devices
n Because dysarthria typically n Rehabilitative techniques such as communication boards,
combines spastic and ataxic include helping the person to: alpha-numeric keyboards, speech
elements, either of which can Slow the rate of speech in synthesizers, and sophisticated
be complicated by the persons order to allow the tongue computer software that can
fatigue level, medications that to compensate for loss supplement or completely replace
address these underlying of speed, strength, and verbal communication skills.
problems may enhance speech coordination The choice of an AAC will be
production and communication. dependent upon the persons
Improve articulation by
While no drug trials have physical and cognitive abilities,
pronouncing words, or even
specifically been done in MS- social support, and willingness to
individual syllables separately
related speech disorders, the make use of this type of assistive
and deliberately (i.e., over-
following interventions may technology.
pronouncing syllables and
prove beneficial:
words)
Oral spasticity medications DYSPHAGIA

Over-articulate certain
such as baclofen (Lioresal)
consonants in order to (for additional information
or tizanidine (Zanaflex) to
prevent their being slighted see Appendix D, page 60)
reduce excess muscle tone
or omitted
in the diaphragm, vocal Dysphagia is defined as a
cords, lips, jaw, tongue, and
Control phrase shifts and difficulty in swallowing. It is
soft palate reduce phrase length a neurologic or neuromuscular

Injections of botulinum Increase voice power symptom that can result in
toxin to treat adductor aspiration of food particles or
(Merson & Rolnick, 1998; Smith liquids into the lungs, slowed
spasmodic dysphonia,
& Scheinberg, 1996; Klitzke & swallowing, or both. Dysphagia
abductor spasmodic
Schapiro, 1991) may result when lesions in the
dysphonia, and vocal
tremor brainstem alter the functioning
Once the person has achieved
of the brainstem and cranial
Oral medications of some improvement in articulation,
nerves. The type of swallowing
various types that may he or she can begin to establish
disorder will depend on how
help to reduce tremor, normal syllabic stress and word
many, and which, cranial
including propranolol emphasis by varying the loudness,
nerves are affected. Those having
(Inderal), clonazepam altering the pitch, and varying the
significant control of the
(Klonopin), primidone duration of syllables to produce
muscles for swallowing include
(Mysoline), laniazid more normal-sounding speech.
the trigeminal (5th), facial
(Isoniazid)
In the event that a persons (7th), glossopharyngeal (9th),

Oral medications to oral communication becomes vagus (10th), spinal accessory
reduce fatigue, including unintelligible, there are a variety (11th), and hypoglossal (12th)
amantadine (Symmetrel), of augmentative and alternative cranial nerves.
modafinil (Provigil) communication (AAC) devices

The term swallowing refers to These problems can occur in Signs of aspiration or potential
a complex, but safe and efficient combination, and may worsen or aspiration include:
process that occurs in four stages: change with disease progression.
n Gurgly quality of the voice
Swallowing problems can appear
1. Oral preparatory: foods are n Coughing, sputtering, or
or worsen during an exacerbation,
placed in the oral cavity, choking before, during, or
and improve or subside during
chewed, manipulated, and after eating or drinking
periods of remission. There-
formed into a bolus.
fore, periodic evaluations are n Cyanosis
2. Oral stage: the bolus is recommended for individuals
n Rales
propelled backward by the who have evidenced swallowing
tongue, in turn triggering the n Wheezing
difficulties.
swallowing reflex at the point n Fever
of the anterior faucial arches. The signs of a swallowing
n Increased mucous production
problem include:
3. Pharyngeal: as the swallowing
n Repeated pneumonias
reflex is triggered, the soft n Pocketing of food in the mouth
palate closes the passage to n Multiple swallows on a single It is important to note that
the nasal cavity, pharyngeal mouthful of food approximately 40% of all
peristalsis squeezes the bolus individuals with dysphagia do
n Unexplained weight loss or
through the pharynx, the not present with obvious signs
dehydration in association
larynx elevates and closes of swallowing distress such as
with slowed eating
at three sphincters, and the choking or coughing. Neither
cricopharyngeal sphincter n Hoarse, weak voice the person with MS nor family
relaxes to allow the bolus to n Temperature rise 30 minutes members may be aware of the
pass into the esophagus. to an hour after eating swallowing problems. The
4. Esophageal: the bolus passes n
person with MS may not be
Frequent throat-clearing
through the cricopharyngeal able to feel any of the changes
during meals
sphincter and moves through that are occurring, and the
n Reported changes in diet
the esophagus to the stomach. changes may have occurred so
n Drooling gradually over time that the
The most common problems family is not aware of them
n Regurgitation
seen in persons with MS include: either. Silent aspiration occurs
n Decreased intake of food
n
when liquid or food particles are
Delayed swallowing response
n Reports of food sticking aspirated into the lungs without
n Reduced pharyngeal peristalsis in the throat any associated discomfort,
n Reduced laryngeal function coughing, or other obvious signs.
If any of these symptoms are
n Reduced lingual function observed by the person with
n Reduced sensation in the oral, MS, the healthcare team, or
pharyngeal, and laryngeal areas family members, a referral for a
swallowing evaluation should
be made.
E VA L U AT I O N A weak, breathy tone and reflex, reduced pharyngeal
significant air escape may indicate peristalsis, weak airway closure,
The assessment of swallowing
difficulty in maintaining closure cricopharyngeal muscle dys-
dysfunction consists of four parts
of the airway during the swallow, function, reduced sensation,
detailed interview, clinical
or in expelling material from the and/or functional/behavioral
evaluation, mealtime evaluation,
airway. The meal-time evaluation abnormalities. Observations
and videofluoroscopy. The
provides information about the can also be made of the persons
detailed interview of the person
persons ability to chew and posture and head position, and
with MS and family members is
swallow a variety of food textures, their impact on swallowing.
designed to identify the following:
eat without pain, coughing, or
n Food preferences choking, and manage a meal T R E AT M E N T G O A L S
n
without excessive fatigue. The
Changes in food preferences- The goals of a swallowing
speech-language pathologist
particularly those relating intervention are to help the
is also alert to signs of silent
to texture person maintain his or her
aspiration such as watering of
n History of swallowing difficulties the eyes, loss of breath or voice, nutritional status while eating
n Typical meal patterns or gurgling sounds in the throat. safely, and to facilitate independent
eating and swallowing for as
n Changes in meal patterns Videofluoroscopy, also called a long as it is possible.
or habits modified barium swallow (MBS),
n History of weight fluctuation is a radiographic procedure T R E AT M E N T
n Fluid intake that provides a view of the INTERVENTIONS
oropharyngeal anatomy and
n Poor tongue control:
During the clinical evaluation, physiology as the person swallows
the speech-language pathologist 1) compensatory positional
a variety of barium-coated
reviews the persons swallowing changes (e.g., holding the
liquids, soft foods, or cracker
history and examines the structure head forward when preparing
mixes. This procedure allows
and function of all visible parts of the bolus for swallowing, and
the swallowing rehabilitation
the eating/swallowing mechanism. then throwing it back to allow
team (typically consisting of the
The structure and function of the bolus to fall into the pharynx),
speech-language pathologist,
the pharynx and larynx can be or 2) exercises to increase
radiologist, radiology technician,
indirectly examined by placing tongue range of motion, strength,
and perhaps the OT) to assess
fingers on the jaw, hyoid bone, and control, to prevent the bolus
the persons ability to chew and
and thyroid cartilage areas while from entering the pharynx
transfer the food bolus from the
the person swallows. If the swallow prematurely.
oral cavity to the oropharynx
reflex is present the larynx should without leakage into the larynx.
rise. To obtain information about This procedure identifies the
airway strength and protection, presence of aspiration as well as
the clinician then asks the person the reasons for its occurrence,
to clear the throat, cough, and including impaired tongue
vocalize a loud sustained tone. movement, delayed swallowing

n Impaired swallowing reflex: n Severe, intractable dysphagia: intervention with a particular
1) head flexion in preparation managed through the use of outcome in mind, as well as
for swallowing, in order to non-oral feeding alternatives. the means we are going to use to
enlarge the vallecular space, The percutaneous endoscopic evaluate that outcome. n
help to trap the material in gastrostomy (PEG) is a safe,
the valleculae during the reflex simple, inexpensive, and reversible
SOURCE
delay, and reduce the risk of method of providing enteral
aspiration; 2) a diet of thicker nutrition. The PEG is inserted M AT E R I A L S F O R
foods and liquids that tend to into the stomach under endo- R E H A B I L I TAT I O N
enhance the reflex trigger by scopic guidance and a liquid
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Incomplete closure of the
distention, and fecal impaction. psychological and functional
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interventions in treating
supraglottic swallow procedure
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APPENDIX A:
N AT I O N A L
M S S O C I E TY
CONSENSUS
S TAT E M E N T
R E C O M M E N D AT I O N S n The Society recognizes that n Treatment with mitoxantrone
the factors that enter into a may be considered for selected
The Executive Committee of
decision to treat are complex relapsing patients with
the National Clinical Advisory
and best analyzed by the worsening disease or patients
Board of the National Multiple
individual patients neurologist. with secondary-progressive
Sclerosis Society has adopted
n Initiation of treatment with an multiple sclerosis who are
the following recommendations
interferon beta medication or worsening, whether or not
regarding use of the current MS
glatiramer acetate should be relapses are occurring.
disease modifying agents (in
alphabetical order): considered as soon as possible n Patients access to medication
following a definite diagnosis should not be limited by the
glatiramer acetate of MS with active, relapsing frequency of relapses, age, or
(Copaxone) disease, and may also be level of disability.
interferon beta 1a considered for selected patients n Treatment is not to be stopped
intramuscular (Avonex) with a first attack who are at while insurers evaluate for
high risk of MS.* continuing coverage of
interferon beta 1a
n Natalizumab is generally treatment, as this would
subcutaneous (Rebif)
recommended by the Food put patients at increased risk
interferon beta 1b
and Drug Administration for recurrent disease activity.
(Betaseron)
(FDA) for patients who have
mitoxantrone (Novantrone) had an inadequate response to,
natalizumab (Tysabri) or are unable to tolerate, other
multiple sclerosis therapies.
n Therapy is to be continued INTRODUCTION must be sustained for years.
indefinitely, except for the Cessation of treatment may
The management of multiple
following circumstances: there result in a resumption of
sclerosis (MS) has been substantially
is clear lack of benefit; there pre-treatment disease activity.
advanced by the availability of
are intolerable side effects;
the disease-modifying agents, Clinical trials are designed to
better therapy becomes
glatiramer acetate and interferon evaluate the smallest number of
available.
beta 1a and 1b, mitoxantrone, and people, over the shortest period
* A relapse (also known as an natalizumab. A number of positive of time, at the lowest cost. In
exacerbation or attack) is outcomes have been demonstrated order to accomplish this, inclusion
conventionally defined as in people with relapsing disease: criteria are necessarily narrow.
the development of new or reduction in the frequency of These restricted parameters of
recurring symptoms lasting at relapses [Betaseron; Avonex; clinical trials are not intended to
least 24 hours and separated Copaxone; Rebif; Novantrone; regulate subsequent clinical use
from a previous attack by at Tysabri]; reduction of brain lesion of the agent. With demonstrated
least one month. development, as evidenced by benefit to people living with MS
magnetic resonance imaging from continued use of glatiramer
n All of these FDA-approved
(MRI) [Betaseron; Avonex; acetate, interferon beta 1a, or
agents should be included in
Copaxone; Rebif; Novantrone; interferon beta 1b, it is critical
formularies and covered by
Tysabri] and the possible reduction that these therapies be made
third party payers so that
of disability progression [Betaseron; available early in the disease
physicians and patients can
Avonex; Copaxone; Rebif; process to appropriate candidates
determine the most appropriate
Novantrone; Tysabri]. as indicated in the labeling of
agent on an individual basis;
each of these medications, and
failure to do so is unethical Based on several years of
that mitoxantrone and natalizumab
and discriminatory. experience with glatiramer
be available for judicious use
n Movement from one disease- acetate, interferon beta 1a and
in aggressive relapsing disease
modifying medication to 1b and mitoxantrone, and the
and for those not responding to
another should occur only for more recent experience with
other disease-modifying therapies.
medically appropriate reasons. natalizumab, it is the consensus
of researchers and clinicians If a copy of the entire document
n None of the therapies has been
with expertise in MS that these with references is desired,
approved for use by women
agents are likely to reduce future call 1-800-344-4867 or go to
who are trying to become
disease activity and improve nationalMSsociety.org/Consensus. n
pregnant, are pregnant, or
quality of life for many individuals
are nursing mothers.
with relapsing forms of MS,
including those with secondary
progressive disease who continue
to have relapses. For those who
are appropriate candidates for
one of these drugs, treatment

APPENDIX B:
M E D I C AT I O N S
C O M M O N LY
USED IN MS
GENERIC NAME B R A N D N A M E 2 USAGE IN MS
adrenocorticotropic H.P. Acthar Gel Acute exacerbations

hormone (ACTH)
alprostadil Prostin VR Erectile dysfunction
alprostadil MUSE Erectile dysfunction
amantadine Symmetrel Fatigue
amitriptyline Elavil Pain (paresthesias)
baclofen Lioresal Spasticity
baclofen (intrathecal) Intrathecal Baclofen (ITB) Spasticity
bisacodyl1 Dulcolax Constipation
bupropion Wellbutrin Depression
1
Available without a prescription. 2
Available in US and Canada unless otherwise noted.
Note: The materials in this appendix are adapted with permission from Rosalind C. Kalb (ed.), Multiple Sclerosis:
The Questions You Have; The Answers You Need (4th ed.). New York: Demos Medical Publishing, 2008. They are
also available on the website of the National MS Society (nationalMSsociety.org) in the Treatments section.
carbamazepine Tegretol Pain (trigeminal neuralgia)
ciprofloxacin Cipro Urinary tract infections
citalopram Celexa Depression
clonazepam Klonopin Tremor; Pain; Spasticity
dalfampridine (formerly called Ampyra Walking

fampridine, 4-aminopyridine,
and 4-AP)
dantrolene Dantrium Spasticity
desmopressin DDAVP nasal spray; DDAVP tablets Urinary frequency
dexamethasone Decadron Acute exacerbations
diazepam Valium Spasticity (muscle spasms)
docusate1 Colace Constipation
docusate1 Enemeez Mini Enema Constipation
duloxetine hydrochloride Cymbalta Depression; Neuropathic pain
fluoxetine Prozac Depression; Fatigue
gabapentin Neurontin Pain
glatiramer acetate Copaxone Disease modifying agent
1 Available without a prescription. 2


glycerin1 Sani-Supp Suppository Constipation
hydroxyzine Atarax Itching
imipramine Tofranil Bladder dysfunction; Pain
interferon beta-1a Avonex Disease modifying agent
interferon beta-1a Rebif Disease modifying agent
interferon beta-1b Betaseron; Extavia Disease modifying agent
isoniazid Laniazid; Nydrazid Tremor
magnesium hydroxide1 Phillips Milk of Magnesia Constipation
meclizine Antivert Nausea; Vomiting; Dizziness
methenamine Hiprex, Mandelamine Urinary tract infections

(preventive)
methylprednisolone Depo-Medrol; Solu-Medrol Acute exacerbations
mineral oil1 Constipation
mitoxantrone Novantrone Disease modifying agent
modafinil Provigil Fatigue
natalizumab Tysabri Disease modifying agent

nitrofurantoin Macrodantin Urinary tract infections
nortriptyline Pamelor Depression
oxybutynin Ditropan Bladder dysfunction
oxybutynin chloride Ditropan XL Bladder dysfunction

(extended release formula)
oxybutynin Oxytrol Bladder dysfunction

(transdermal patch)
papaverine Erectile dysfunction
paroxetine Paxil Depression
phenazopyridine Pyridium Urinary tract infections

(symptom relief)
phenytoin Dilantin Pain (dysesthesia)
prazosin Minipress Bladder dysfunction
prednisone Deltasone Acute exacerbations
propantheline bromide Pro-Banthine Bladder dysfunction
psyllium hydrophilic mucilloid1 Metamucil Constipation
sertraline Zoloft Depression


sildenafil Viagra Erectile dysfunction
sodium phosphate1 Fleet Enema Constipation
solifenacin succinate Vesicare Bladder dysfunction
sulfamethoxazole + Bactrim; Septra Urinary tract infections

trimethoprim combination
imipramine Tofranil Bladder dysfunction; Pain
tadalafil Cialis Erectile dysfunction
tamsulosin Flomax Bladder dysfunction
terazosin Hytrin Bladder dysfunction
tizanidine Zanaflex Spasticity
tolterodine Detrol Bladder dysfunction
trospium chloride Sanctura Bladder dysfunction
vardenafil Levitra Erectile dysfunction
venlafaxine Effexor Depression
1
Available without a prescription. 2
APPENDIX C:
I N T E R N AT I O N A L
C L A S S I F I C AT I O N
O F I M PA I R M E N T S ,
ACTIVITIES, &
PA R T I C I PAT I O N
A MANUAL OF
DIMENSIONS OF DISEASE I M PA I R M E N T S DISABILITIES HANDICAPS
DISABLEMENT
of this growing segment of the A disease or condition was seen
A N D H E A LT H population. to cause certain impairments
(ICIDH-2) of body structure or function
The ICIDH-2 is a revision of
(impairment). These impairments
The ICIDH-2 is an international the International Classification
might interfere with a persons
classification system designed of Impairments, Disabilities,
abilities (disability), potentially
to describe the personal and and Handicaps (ICIDH) that
preventing the person from being
social consequences of health was developed by the World
able to function fully in society
conditions, including diseases, Health Organization (WHO) in
(handicap).
disorders, and injuries. With the 1980. The initial ICIDH was
increasing prevalence of chronic a classification of disablements Twenty years of experience
and non-communicable illnesses, an umbrella term covering with this model found it to be
and the aging of the population, three dimensions: 1) impairment; lacking in certain areas. While
the consequences of health 2) disability; and 3) handicap it was not designed to be a
conditions have come to include that could be visualized in the linear, or causal model, it was
the life-long management needs above diagram. too easily interpreted as such.

H E A LT H C O N D I T I O N
(DISORDER/DISEASE)
I M PA I R M E N T AC T I V I TY PA R T I C I PAT I O N
C O N T E X T U A L FAC TO R S
E N V I R O N M E N TA L
PERSONAL
FIGURE 8
It failed to allow for movement health conditions within their

from handicap and disability back societal context (including
to impairment, and it did not societys role in either facilitating
adequately reflect the role of the or hindering that participation).
social and physical environment
As can be seen in Figure 8,
in the disablement process.
ICIDH-2 is an interactive rather
ICIDH-2 attempts to provide than a unidirectional model that
a multi-dimensional and multi- implies a dynamic interaction
perspective approach to the between the disease and contextual
concept of disablement. The factors (i.e., environmental and
concept of disability has been personal factors). Environmental
replaced by activity, which deals factors might include attitudes of
with a persons ability to execute society, architectural barriers, the
particular tasks or activities in legal system, etc., while personal
everyday life. The concept of factors might include gender, age,
handicap has been replaced by other health conditions, lifestyle,
participation, which refers to the coping styles, education, and
total experience of people with so on. n
APPENDIX D:
REPRINTS
O F N AT I O N A L
M S S O C I E TY
P U B L I C AT I O N S O N
R E H A B I L I TAT I O N : R E H A B I L I TAT I O N : R E C O M M E N D AT I O N S
R E C O M M E N D AT I O N S
FOR PERSONS WITH MS
FOR PERSONS WITH MS
Expert Opinion Paper An Expert Opinion Paper from the National Clinical Advisory
Board of the National Multiple Sclerosis Society
PHYSICAL THERAPY IN
M S R E H A B I L I TAT I O N
R E C O M M E N D AT I O N S
Clinical Bulletin
The National Clinical Advisory Board (MAB) of the National Multiple
OCCUPATIONAL THERAPY Sclerosis Society has adopted the following recommendations to provide
I N M S R E H A B I L I TAT I O N guidance to physicians, nurses, therapists, insurers, and policy makers,
Clinical Bulletin regarding the appropriate use of rehabilitative therapies in MS. This
document addresses physical rehabilitation. Cognitive and vocational
DYSARTHRIA rehabilitation will be addressed in future documents.
Clinical Bulletin
DEFINITION
SWALLOWING
DISORDERS Rehabilitation in MS is a process that helps a person achieve and maintain
Clinical Bulletin maximal physical, psychological, social and vocational potential,

and quality of life consistent n Patients who present with any n Research and professional
with physiologic impairment, functional limitation should experience support the use of
environment, and life goals. have an initial evaluation and rehabilitative interventions***
Achievement and maintenance of appropriate management. in concert with other medical
optimal function are essential in n Assessment for rehabilitation interventions, for the following
a progressive disease such as MS. services should be considered impairments in MS:
While the disease course cannot early in the disease when Mobility impairments
be altered by rehabilitation, a behavioral and lifestyle changes (i.e. impaired strength, gait,
growing body of evidence indicates may be easier to implement. balance, range of motion,
that improvement in mobility, n The complex interaction of motor, coordination, tone and
activities of daily living (ADL), sensory, cognitive, functional, endurance)
quality of life, prevention of and affective impairments in an Fatigue
complications, reduction in health unpredictable, progressive, and Pain
care utilization, and gains in safety fluctuating disease such as MS,
Dysphagia
and independence, may be requires periodic reassessment,
realized by a carefully planned monitoring, and rehabilitative Bladder/bowel dysfunction
program of exercise, functional interventions.
Decreased independence in
training, and activities that address n The frequency, intensity and activities of daily living
the specific needs of the individual. setting of the rehabilitative Impaired communication
Thus, rehabilitation is considered intervention must be based
Diminished quality of life
a necessary component of comp- on individual needs. Some
rehensive, quality health care for (often caused by inability
complex needs are best met in
people living with MS, at all to work, engage in leisure
an interdisciplinary, inpatient
stages of the disease. activities and/or to pursue
setting, while other needs are
usual life roles)
n The physician* should best met at home or in out-

Depression and other
consider referral of individuals patient settings. The health care
team should determine the affective disorders
with MS for assessment by
rehabilitation professionals** most appropriate setting. Cognitive dysfunction
when there is an abrupt or Whenever possible, patients n Appropriate assessments and
gradual worsening of function should be seen by rehabilitation
outcome measures must be
or increase in impairment that therapists who are familiar with
applied periodically to establish
has a significant impact on the neurological degenerative
and revise goals, identify the
individuals mobility, safety, disorders.
need for treatment modification,
independence, and/or quality and measure the results of the
of life. intervention.
* Or nurse practitioner or physicians assistant.

** Includes: rehabilitation physician, occupational, physical, speech and language therapists and others.
*** Includes: exercise, functional training, equipment prescription, provision of assistive technology, orthotics prescription,
teaching of compensatory strategies, caregiver/family support and education, counseling, and referral to community resources.
n Known complications of MS, BACKGROUND (Liu et al., 2003). Another study
such as contractures, disuse showed a significant decrease in
atrophy, decubiti, risk of falls, While multiple sclerosis is highly length of stay in a rehabilitation
and increased dependence variable, most patients experience inpatient unit for patients who
may be reduced or prevented functional losses and increasing were given more intensive
by specific rehabilitative impairment over time. Many rehabilitation therapies (Slade
interventions. people living with MS face et al., 2002). Patients with
obstacles accessing rehabilitative progressive MS who received
n In a fluctuating and progressive
services because of inadequate out-patient rehabilitation,
disease, maintenance of function,
referrals and/or inadequate third experienced reductions in fatigue
optimal participation, and quality
party coverage. The National and MS related symptoms
of life are essential outcomes.
MS Society determined that a (DiFabio et al., 1997, 2003).
n Maintenance therapy includes statement by its expert medical Furthermore, a physiotherapy
rehabilitation interventions advisors was therefore necessary program conducted at home
designed to preserve current to support the use of rehabilitative or in a hospital outpatient clinic
status of ADLs, safety, mobility, interventions and thus promote resulted in significant improve-
and quality of life, and to reduce physician referral to these services ments in mobility, subjective well-
the rate of deterioration and and third party coverage of them. being, and mood in patients with
development of complications.
A number of studies have chronic MS (Wiles et al., 2001).
n A thorough assessment for This study suggests that ongoing
demonstrated positive outcomes
wheelchairs, positioning devices, physiotherapy might be necessary
of rehabilitation on people living
other durable medical equipment for sustaining improvement
with MS, and data support the
(DME) and environmental in mobility or prevention of
use of rehabilitative interventions
modification by rehabilitation deterioration. Other studies
for a number of specific MS
professionals is recommended demonstrated positive impact of
impairments. Patients with MS
and will result in the use of the multidisciplinary rehabilitative
who received multidisciplinary
most appropriate equipment. care on the daily life of patients
rehabilitation in addition to IV
n Regular and systematic steroids demonstrated increased with multiple sclerosis (Freeman
communication between the improvement in functional status, et al., 1999; Solari et al., 1999).
referring health care provider mobility, quality of life, and In studies regarding access to
and rehabilitation professionals disability over those who received rehabilitation services by people
will facilitate comprehensive, steroids alone (Craig et al., 2003). with disabilities, respondents
quality care. A study of the effect of inpatient report difficulty in accessing
n Third party payers should cover rehabilitation on individuals services, largely due to insurance
appropriate and individualized with relapsing/remitting (RR) coverage limitations (Beatty et al.,
restorative and maintenance MS suggested that inpatient 2003). Many insurance policies and
rehabilitation services for people rehabilitation is useful for patients state/federal regulations require
with MS. with incomplete recovery from that rehabilitation services be
relapses who have accumulated restorative rather than oriented
moderate to severe disability to maintenance of function and

prevention of avoidable disability The task force conducted a ROLE OF THE
and complications. However, comprehensive review of the N AT I O N A L M S
for individuals with chronic, literature and compiled pro- S O C I E TY
progressive or disabling conditions fessional opinion based on the
such as MS, maintenance therapy literature and clinical practice. The National MS Society
is critical for preserving overall The National Clinical Advisory mobilizes people and resources
health and functioning, main- Boards Executive Committee to drive research for a cure and
taining independence, avoiding provided final review and approval to address the challenges of
institutionalization, and preventing of the document. everyone affected by MS. Various
secondary medical conditions strategies are employed to do so,
and the associated need for costly including professional education
USE OF THE
hospitalizations that may include and advocacy. As a representative
RECOMMENDATIONS
surgeries. body and advocate for people
The National MS Society living with MS and medical/
While additional research is health professionals who provide
rehabilitation and MS statement
needed, recent findings along their care, the Society is positioned
is an educational and advocacy
with expert opinion and clinical to provide structure and support
tool. It will be a component of the
experience demonstrate the for the development of an expert
Societys professional education
value of rehabilitation in MS. opinion document to facilitate
programs and will be used to
Physicians should prescribe access to rehabilitative therapies
promote increased access to
appropriate rehabilitation for disease management. The
rehabilitative therapies through
therapies for their patients with National MS Society has a nation-
legislative and regulatory
MS and insurers should cover wide network of chapters and
determinations. It will serve
these therapies. regular contact with persons living
as a communication device for
interactions with insurers both with MS and their families as well
PROCESS nationally and locally. It supports as with health care professionals.
self-advocacy for persons with This extensive network and process
The clinical care committee
MS and will encourage them for dissemination of information
of the National MS Societys
to talk with their health care will ensure that the recommen-
National Clinical Advisory Board
providers and insurers about dations regarding rehabilitation
identified the need to develop
whether rehabilitation is indicated. and MS will be communicated to
and periodically update a formal
providers, insurers, and people
position about rehabilitation as a
living with MS.
necessary component of quality
health care for people living with
MS, at all stages of the disease.
They convened a multidisciplinary
task force of MS experts to
develop recommendations.
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Effects of intensive phonatory- of neurological rehabilitation in CONSENSUS
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on voice in two individuals with Dev 2000; 37(4):455461. TA S K F O R C E
multiple sclerosis. J Med Speech- Vahtera T. Pelvic floor n George H. Kraft, MD, Co-Chair
Lang Path 2001; 9(2):141151. rehabilitation is effective in Professor, Rehabilitation Medicine
Slade A, Tennant A, Chamberlain patients with multiple sclerosis. Adjunct Professor, Neurology
MA. A randomised controlled Clin Rehabil 1997; 11(3): University of Washington
trial to determine the effect of 211219. Seattle, WA
intensity of therapy upon length Vanage SM, Gilbertson KK, n Randall T. Schapiro, MD, Co-Chair
of stay in a neurological Mathiowetz V. Effects of an Director, The Schapiro Center
rehabilitation setting. J Rehabil energy conservation course for Multiple Sclerosis at The
Med 2002; 34(6):260266. on fatigue impact for persons Minneapolis Clinic of Neurology
Solari A, Filippini G, Gasco P, with progressive MS. Am J & Clinical Professor of Neurology
et al.Physical rehabilitation has Occup Ther 2003; 57(3): University of Minnesota
a positive effect on disability in 315323. Golden Valley, MN
multiple sclerosis patients. Wiles CM, Newcombe RG, n Aliza Ben-Zacharia, RN,
Neurology 1999; 52:5762. Fuller KJ, et al. Controlled CRRN, MSN, ANP-C
Steultjens EM, Dekker J, Bouter randomized crossover trial of The Corinne Goldsmith Dickinson
LM et al. Occupational therapy the effects of physiotherapy Center for Multiple Sclerosis
for multiple sclerosis. Cochrane on mobility in chronic multiple The Mount Sinai Medical Center
Database Syst Rev 2003(3): sclerosis. J Neurol Neurosurg New York, NY
CD003608. Psychiatry 2001; 70:174179.
n Francois Bethoux, MD
Stuifbergen AK, Becker H, Wiles CM, Newcombe RG, Director, Rehabilitation Services
Blozis S, Timmerman G, Fuller KJ, Jones A, Price M. Use The Mellen Center at The
Kullberg V. A randomized of videotape to assess mobility Cleveland Clinic Foundation
clinical trial of a wellness in a controlled randomized Cleveland, OH
intervention for women with crossover trial of physiotherapy
n Debra Frankel, MS, OTR
multiple sclerosis. Arch Phys Med in chronic multiple sclerosis.
Senior Consultant
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National MS Society
Svensson B, Gerdle B, Elert J. 256263.
Cambridge, MA
Endurance training in patients
n Deborah Hertz, MPH
with MS: Five case studies. Phys
National Director,
Ther 1994; 74:10171026.
Medical Programs
Thompson AJ. Progress in National MS Society
neurorehabilitation in multiple New York, NY
sclerosis. Demyelinating
diseases. Current Opinion in
Neurology 2002; 15:267270.

n Nancy Holland, EdD, RN, MSCN THIS ADVISORY n Fred Lublin, MD
Vice President, Clinical Programs S TAT E M E N T W A S Corinne Goldsmith Dickinson
National MS Society REVIEWED & ADOPTED Center for Multiple Sclerosis
New York, NY BY THE EXECUTIVE The Mount Sinai Medical Center
n Nicholas LaRocca, PhD COMMITTEE OF THE New York, NY
Director, Healthcare Delivery N AT I O N A L C L I N I C A L n Henry McFarland, MD
and Policy Research ADVISORY BOARD OF Neuroimmunology Branch
National MS Society T H E N AT I O N A L M S NINDS: National Institutes of Health
New York, NY S O C I E TY Bethesda, MD
n Nancy Mazonson MS, OTR/L n Aaron Miller, MD Chair n John Noseworthy, MD
Braintree Rehabilitation Hospital Corinne Goldsmith Dickinson Center Department of Neurology
Metrowest Medical Center Center for Multiple Sclerosis Mayo Clinic and Foundation
Natick, MA The Mount Sinai Medical Center Rochester, MN
n Patricia Provance, PT New York, NY n Kottil Rammohan, MD
Maryland Center for n Jeffrey Cohen, MD Department of Neurology
Multiple Sclerosis/Kernan The Mellen CenterU10 Ohio State University
Rehabilitation Hospital Cleveland Clinic Foundation Columbus, OH
Baltimore, MD Cleveland, OH n Richard Rudick, MD
n Ken Seaman, MA, PT, ACCE n George Garmany, MD The Mellen Center U10
Physical Therapy Department Associated Neurologists Cleveland Clinic Foundation
University of Delaware Boulder, CO Cleveland, OH
Newark, DE n Andrew Goodman, MD n Randall Schapiro, MD
n Kathryn M. Yorkston, PhD Department of Neurology The Schapiro Center for
Rehabilitation Medicine University of Rochester Multiple Sclerosis at The
University of Washington Medical Center Minneapolis Clinic of Neurology
Seattle, WA Rochester, NY Golden Valley, MN
n Barbara Green, MD n Randolph B. Schiffer, MD
St. Johns Mercy Medical Center Texas Tech Health Sciences Center
St. Louis, MO Lubbock, TX
n Kenneth Johnson, MD n Donald Silberberg, MD
Maryland Center for MS Department of Neurology
University of Maryland University of Pennsylvania
School of Medicine Medical Center
Baltimore, MD Philadelphia, PA
n Stanley van den Noort, MD Unlike most other neurological n An elevated core body
Department of Neurology disorders, including spinal cord temperature (from over-
University of California at Irvine injury, traumatic brain injury, heating, overexertion, or
Irvine, CA and stroke, there is no fixed infection with fever)
n Jerry Wolinsky, MD deficit in MS; symptom profile, n Certain medications, such
Department of Neurology lesion burden on MRI, and as those used to treat
University of Texas Health disease course vary over time. spasticity and pain
Science Center Therapists must be prepared to
n Obesity
Houston, TX treat each MS patient individually,
and with flexibility, over the n Disrupted sleep (caused by
long term. bladder urgency, periodic limb
PHYSICAL movements, spasticity, and
In the treatment of people living
THERAPY IN MS pain, among other factors)
with MS, there are no protocols
R E H A B I L I TAT I O N or time limits just a unique
n Affective disorders such
as depression
National MS Society opportunity to employ numerous
problem-solving skills, interventions, n Stress
Clinical Bulletin by
Patricia G. Provance, PT, MSCS and resources. And because MS n Other medical conditions,
affects not just an individual, such as anemia
but a whole family, it is a disease
INTRODUCTION that benefits from a team approach Many other invisible symptoms
making coordination and are cause for frustration in
Rehabilitation is an important
communication with other patients, including impairments
part of health care delivery for
health care providers extremely of sensation, vision, cognition,
persons with multiple sclerosis.
important. bowel and bladder, and sexual
Since the majority of people are
function all of which need to
diagnosed between the ages of
be acknowledged and addressed
20 and 50, the challenges of MS CLINICAL
by the rehabilitation specialist.
affect those at the peak of their CHALLENGES
career and childrearing years.
Although MS can affect children MS poses a variety of clinical
and tens, it is much less common challenges that can impact therapy
that this age group. interventions: For example,
the very common symptoms of
Rehabilitation team members weakness and fatigue caused by
need information, experience, impaired nerve conduction in
and sensitivity relating to the central nervous system, can
the variability of symptoms be exacerbated by a variety of
between individuals, and to the factors:
unpredictable and fluctuating
nature of this challenging,
generally progressive disease.

THE ONGOING INTERVENTIONS PROGRESSIVE DISEASE
ROLE OF PHYSICAL THROUGHOUT THE Patients with primary-progressive
THERAPY IN MS DISEASE COURSE MS do not have remissions; their
The role of physical therapy will AT T H E T I M E functioning declines gradually,
vary across the disease course. In OF DIAGNOSIS but steadily, over time. Patients
general, however, interventions who transition from relapsing-
Patients newly diagnosed with remitting MS to secondary-
should focus on helping the
MS benefit from education, progressive MS are not able
patient to achieve and maintain
support and a baseline evaluation to return to baseline (due to
optimal functional independence,
by an experienced PT. At this progression of the disease that
safety, and quality of life, with
time, misunderstandings about occurs between exacerbations)
the understanding that needs
the disease and its management, and demonstrate a slow decline
will vary and likely grow over
the importance of appropriate in function. Because both
time. In all care delivery models
exercise/activity, fatigue issues, groups have a huge emotional
inpatient (acute, transitional,
and any subtle gait or balance burden in addition to their
rehabilitation or long-term care),
impairments can be addressed. physical challenges, physicians
outpatient, or home care
Follow-up should be on an as are encouraged to refer a person
physical therapists (PTs) must:
needed basis. proactively to PT rather than
n Be prepared to educate waiting until he or she is
patients and their care FOLLOWING ACUTE struggling. Focus should be on
partners about the critical E X A C E R B AT I O N S support, resourcing, avoiding
role of rehabilitation, provide de-conditioning, maintaining
training in specific strategies, Physical therapy following an safety, and maximizing health
and provide resources for acute exacerbation (also called and independent function.
equipment and accessible, a relapse or attack) should have Assessment of the need for
appropriate community the goal of carefully helping mobility aids now and in the
programs. the person return to baseline future is essential for these
functioning. It is customary to patients, and it is especially
n Be ready to assist with case-
wait two weeks after the attack beneficial for the PT to assist the
management and provide
before starting or resuming out- physician in assuring that the
emotional support.
patient PT, because of weakness, appropriate detailed prescription
lack of sleep from IV steroids, or letter of medical necessity
or other factors. (LOMN) is provided.
A D VA N C E D M S spread out over several follow-up Other tests that are useful include:
sessions to avoid patient burn-
Patients in advanced stages n Berg Balance Scale
out and frustration. If a patients
of MS have significant disease n Tinetti Gait and Balance
primary problem is wobbly
burden, are non-ambulatory, Assessment
walking, for example, a gait
and at risk for other secondary
assessment should be performed n Activities Specific Balance
health conditions. Physical
both at the beginning and the Confidence (ABC)
therapy for this population
end of the initial session to
will likely be focused on seated n Timed Up and Go (TUG)
determine impact of fatigue on
trunk positioning and control, n Dynamic Gait Index (DGI)
weakness and balance. It is also
transfers, upper extremity
very important to have a variety n Functional Independence
strength,respiratory function,
of trial ambulation aids in the Measure (FIM)
and equipment needs. The use
clinic to introduce them to n
of standing devices or standing 2-minute walk, 6-minute walk
the patient (initial reluctance
wheelchairs can be very helpful, n Borgs Rate of Perceived
to accept an aid is common)
providing weight bearing on the Exertion17
and to determine best fit for
long bones, stretching to ease
the physician prescription. Two compelling articles by
spasticity, relief for bowel and
bladder, and improved respiration The use of some standardized Pearson and colleagues8,9 challenge
and speech projection. assessment tools17 in the assessment the usefulness of many current
process is recommended; however clinical ambulation measures. He
few of those tests routinely proposes that the gold standard for
PHYSICAL THERAPY measuring ambulatory mobility
used in PT have been evaluated
ASSESSMENT in neurological disorders should
specifically for the MS population.
At the initial session, taking a The few measures currently be the total ambulatory activity
thorough history is critical. The standardized for MS are: undertaken by an individual
history should include date of in their usual environment in
n MS Functional Composite performing their usual range of
diagnosis, date and nature of
(MSFC), which includes the daily activities. This may herald
initial symptom(s), other health
25-foot walk increased use of pedometers,
conditions, medications, prior
level of activity, and top three n Expanded Disability Status accelerometers,10 or even global
problems in the order that they Scale (EDSS) performed by positioning systems as better
interfere with quality of life. trained physicians and nurse measures of true activity over time.
This prioritization will guide the practitioners
The PT evaluation can include a
goal-setting. n MS Fatigue Impact Scale (MSFIS) broad overview, so its important
The PT evaluation should be n Disease Steps (DS) to prioritize time spent, with the
structured to respect fatigue, patients primary issues addressed
n MS Walking Scale-12 (MSWS-
but provide a good overview first.
12), a patient self-report
of the patients baseline. Some
standardized testing might be

POSTURE, TRUNK (with large swivel wheels for MOTOR FUNCTION
CONTROL, BALANCE, easier maneuvering outdoors
Assessment should focus on gross
TRANSFERS and on carpets, a flip-up seat
strength, with emphasis on function,
without a front cross bar for
It is important to assess seated in the extremities and trunk. Focus
more erect posture when walking
and standing posture and static specific muscle testing on problem
and the opportunity to sit and
and dynamic balance. Balance areas to minimize fatigue. Quality
rest when needed, a flexible
impairments are common in MS, and control of movements, as well
backrest, and user-friendly
increasing the risk of falls.1113 as substitution patterns, need to be
hand-brakes). Other effective
When appropriate, transfers to noted. A key is to prevent or correct
ambulatory aids for patients
and from bed, chair, toilet, car secondary or disuse weakness,
with foot drop include custom
and floor should be evaluated commonly seen in persons with
ankle-foot-orthoses (AFOs)
noting quality, safety, and MS who have assumed a sedentary
made of lightweight plastics
level of assistance needed. Begin lifestyle or embraced compensatory
articulated or solid or the
a fall risk/safety profile to guide movement patterns. Weakness due
newer ultra lightweight carbon
treatment planning. to inactivity and poor posture is
composite materials, hip-flexion-
frequently found in the trunk,
assist-orthoses (HFAO), or the
A M B U L AT I O N / lower abdominals, gluteus medius
new wireless functional electrical
M O B I L I TY and maximus, middle and lower
stimulators (FES).
trapezius, and high anterior next
For the ambulatory individual, flexors. Muscle imbalances of
the desire to continue walking RANGE OF
anterior/posterior tightness
or to walk better is usually a MOTION (ROM)
versus weakness (such as the
primary goal. Vision, sensation, iliopsoas and gluteus maximus)
Both passive and active functional
vestibular or cerebellar deficits, frequently respond favorably to
ROM should be assessed in the
spasticity, muscle weakness, a corrective exercise program and
extremities and trunk, limiting
fatigue and shoe wear need to postural correction and awareness.14
detailed goniometric measurement
be considered in addition to
to noted problem areas for time
posture and balance. The most
and fatigue reasons. Sedentary or NEUROLOGICAL
appropriate ambulation aid(s)
inactive persons with MS often FUNCTION
should normalize the gait
present with significant tightness in
pattern with improved alignment, Assessment of neurological
hip flexors, adductors, hamstrings
stability, control and confidence symptoms is necessary for
and heel cords. Limited overhead
and a decrease in energy expenditure. development of treatment
reach is often noted in those with
A persons needs often vary with interventions (to supplement
slumped posture due to tightness
level of fatigue, temperature, pharmacologic therapies) for
in the pectoralis minor, major and
distance to be walked or time of improved safety, control and
latissimus dorsi. Poor head control
day. Popular options are folding function. Common problems
due to postural and substitution
canes (with palm grip handles), include abnormal tone
patterns often leads to tightness
lightweight forearm crutches, usually hyper-tonicity (which
in the upper trapezius and
and four-wheeled rolling walkers may be constant, fluctuating,
posterolateral cervical muscles.14
or intermittent) clonus, A scooter (or power operated GOAL SETTING &
and tremors (can be resting, vehicle) is useful for individuals T R E AT M E N T P L A N S
intention or both). Note with significant fatigue, weakness,
interference with function. paraparesis or ataxia who retain It is essential that the short-term
Other deficits relate to coord- good dynamic sitting balance therapy goals be patient driven
ination, sensation (hyper or and transfer skills. A power (their wish list), functionally
hypo), proprioception and wheelchair would be more focused, realistic and attainable.
pain. Referral to a neurologist, appropriate for individuals who Each PT should attempt to teach
physiatrist, or pain specialist for are minimally or non-ambulatory corrective exercises and activities
additional treatment interventions and require additional seat and that can easily be followed in
may be warranted. trunk support. In all cases, the home or community to
consideration must be given to supplement any clinic equipment
vision, cognition, safety awareness, that might be used. Some food
R E S P I R AT O R Y
and access to home and vehicle. for thought: If leg weakness,
FUNCTION
fatigue, and impaired gait are
It is important to recognize that primary issues, the patient will
O T H E R I M P O R TA N T
respiratory problems are common benefit more from functional
C O N S I D E R AT I O N S
in more disabled patients, but also activities done in (supported)
exist in a large number of persons Persons with MS have many standing than s/he will from 3
with MS that have minimal other issues that need to be sets of 10 leg lifts or 20 minutes
disability. considered as part of the PT on a stationary bicycle. There is
evaluation, goal-setting and a lot to be said for specificity of
W H E E L E D M O B I L I TY when making referrals to other training with this population.
team members. In addition to In every case, fatigue must be
The use of a wheelchair or scooter vision, cognition and speech respected, over-heating avoided,
is often appropriate when long or swallowing problems, its and rest intervals provided
distances must be covered and important to consider each excellent opportunities for
energy conservation is required, patients support/social network, education and resourcing (which
allowing needed community access. emotional stability (depression should be billed as therapeutic
Some persons with MS prefer a is common), and vocational/ activities) during the treatment
standard wheelchair because of homemaking history. session. Long-term goals should
its portability, but adequate upper include an effective home and
body strength and endurance are community program with less
needed. In most cases, motorized dependence on formal physical
wheeled mobility is the better therapy.
choice for long term independence.

HOME PHYSICAL EXERCISE & MS of the special needs of those
THERAPY with MS and be willing to
Historically, exercise was modify the programs appropriately.
PROGRAMS something to be avoided by MS Day Programs are another
The key components of a success- persons with MS, as physicians excellent outlet for therapeutic
ful home program are that it is feared the ramifications of fatigue recreational and social activities.
enjoyable, varied, goal-oriented and overheating. As a result,
and realistic. Compliance issues generations became de-conditioned
prematurely due to inactivity. FOLLOW-UP
include fatigue, poor motivation,
depression, lack of needed support Although the benefits of exercise Optimal follow-up for outpatient
or assistance from family and and activity have long been therapy will vary according to
friends, time constraints, and recognized as an important part individual needs, and typically
cognitive dysfunction (usually of wellness, it was felt that this varies from the traditional
short-term memory, attentional, could not be tolerated by those (orthopedic or fixed deficit
or sequencing deficits, which challenged by MS. Petajan15 and neurological condition) model of
requires the therapist to provide colleagues published a pivotal 23 times/week for 68 weeks.
the exercises in written instructions study in 1996 that demonstrated Dedicated one-on-one sessions
and pictures). Emphasis needs to the tolerance for and benefits should be scheduled as needed
be placed on corrective exercises of aerobic training for some since the need for rehabilitation
to: (1) improve function (restoring individuals with MS. Since then, is life long and likely to increase
alignment, mobility, and strength/ the literature has slowly increased with age. Consideration must
endurance lost due to inactivity/ in quality and volume to show be given to the numerous
disuse or compensatory movement positive statistical outcomes for compliance challenges, including
patterns), (2) manage spasticity various interventions to improve transportation, weather (cold
(slow stretching, cold packs, balance, gait, endurance, strength causes stiffness, high heat and
controlled position changes), and and quality of life (QOL).1531 humidity cause weakness), and
(3) control energy management A guideline: All exercises and lack of energy, motivation or
(careful pacing, flexible work and activity should be a challenge, support. Continuity with therapy
activity schedules, pro-active but never a struggle. provider(s) is another important
resting vs. reactive collapse, Ideally, many persons with consideration for improved
avoiding overexertion/overheating, MS will eventually be able to compliance with follow-up.
and sub-stitution of less stressful/ participate in community-based Initially it might be appropriate
strenuous/frustrating activities). activity programs such as water for patients to be scheduled 12
Compliance is enhanced if the exercise in a cool (<85 degrees) times a week to meet short-term
patient notes slow steady progress pool,32 gentle yoga,33 tai chi34 goals. Then the frequency should
toward reaching the goals of (or water-based tai chi), hippo- lessen to weekly or every other
improved symptom management therapy,35 or carefully guided week until symptoms are
and increased activity and fitness center and aerobic activities. controlled and an effective home/
participation both at home and In each case, its important that community program has been
in the community. the program leader be aware established.
At that time follow-up should SUMMARY A FINAL QUOTE
be prn to revise or augment WORTH SHARING
the program or trouble-shoot Physical therapists are extremely
important members of the With the advent of disease
any new problems.
health-care team for persons modifying agents to prolong
Another major factor is insurance with MS, as this challenging time between attacks and slow
constraints, since the patient disease can be frustrating for the disease progression, OT and PT
may have limits on number of patient, therapist, and family. interventions are more important
visits per year, per condition, or There are no special treatments and more cost-effective than ever
per lifetime. Physical Therapists to learn, but to be a successful MS before. Interventions have the
have the opportunity to advocate therapist, one must be willing to: potential to last longer and have
for coverage of appropriate and greater impact on improving
n Learn about this unique
cost-effective follow-up for this quality of life.37
challenging chronic condition, since chronic disease
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O C C U PAT I O N A L FOCUS OF enable participation in mean-
O C C U PAT I O N A L ingful occupations. Intervention
THERAPY IN MS
THERAPY can be preventive, educational,
R E H A B I L I TAT I O N compensatory, remedial, or
National MS Society
Occupational therapists focus on consultative in nature, and
Clinical Bulletin by Marcia
occupation, which is defined involves the therapeutic use
Finlayson, PhD, OT (C), OTR/L
as all of those tasks and activities of purposeful and meaningful
that take our time and energy, goal-directed activities to achieve
and provide meaning and focus therapy goals. For people living
Multiple sclerosis (MS) is a
in our everyday lives (Canadian with MS, intervention may also
chronic, frequently progressive
Association of Occupational focus on maintenance of current
disease of the central nervous
Therapists, 1997). Occupational functional abilities.
system that is usually diagnosed
therapists identify and evaluate
between the ages of 20 and
functional challenges, and offer
50. While MS can result in PROCESS OF
interventions to address three
considerable disability, it does O C C U PAT I O N A L
broad areas of occupation:
not significantly reduce life THERAPY SERVICE
expectancy. Consequently, people n Self-care activities including DELIVERY
living with MS are often required functional mobility, dressing,
to manage some level of MS- bathing, grooming, and eating Occupational therapists offer
related disability for many their services in a wide variety of
n Productive activities
years, making rehabilitation an settings including community and
including paid work, home
important part of their health- home care agencies, outpatient
management, caregiving, and
care. Occupational therapists clinics, rehabilitation hospitals,
volunteer activities
are integral members of the MS skilled nursing facilities, acute care
n Leisure activities including
healthcare team, working with facilities, school systems, and
involvement in social and private practices. Occupational
patients and their families to
recreational pursuits therapy services are covered by most
develop and implement practical
solutions to the challenges of health insurance plans. Regardless
Occupational therapy focuses
everyday living with MS. The of the setting in which they work,
on enabling people to participate
intent of this clinical bulletin is occupational therapists in most
in those occupations that have
to describe the general focus of states require a physicians referral
value and meaning to them.
occupational therapy, explain in order to provide evaluation and
Evaluation by an occupational
the process of occupational treatment. In some locations
therapist identifies the current
therapy service delivery, and treatment that is not medically
and anticipated occupational
give an overview of the typical related, or that is consultative
challenges an individual is
roles and activities of occupational or educational in nature, does
experiencing due to disease,
therapists in MS care. not require a referral. For more
disability, injury or change in
information about the referral
life roles. Intervention then
requirements in a particular
focuses on removing or reducing
jurisdiction, contact the state
those challenges to promote and
office of professional regulation or P E R S O N A L FAC TO R S : O C C U PAT I O N A L
the state occupational therapy FAC TO R S :
n Symptoms of MS and other
association.
health conditions (e.g., fatigue, n The physical demands of the
Once a referral is received, the pain, balance) task or activity (e.g., need to
occupational therapy process n Physical capacities (e.g., bend, reach, lift, carry)
starts with a thorough, client- strength, joint motion) n The cognitive and perceptual
centered evaluation. Initially, demands of the task/activity
n Cognitive and perceptual
the occupational therapist (e.g., need to multi-task,
capacities (e.g., memory,
focuses on learning about the remember complex sequences,
attention, problem solving,
specific tasks and activities a visual-spatial demands)
visual-spatial abilities)
client is concerned about being
n The steps and sequencing of the
able to continue to do, is having n Psychological and emotional
issues (e.g., self-efficacy, activity (e.g., number of steps,
difficulty doing efficiently or
mental health) flexibility of sequences)
safely, and/or is interested in
starting to do again or for the first n The temporal aspects of the
n Specific skills and knowledge
time. Typically, the occupational relative to performance of the activity (e.g., when it is
therapist will use a structured tasks and activities in question performed, for how long)
interview for this part of (e.g., knowledge of meal n The need for or use of specific
the evaluation process. Two preparation) tools and technology during
commonly used tools include the activity (e.g., computer,
the Canadian Occupational appliances, adapted devices)
E N V I R O N M E N TA L
Performance Measure (Law et
FAC TO R S :
al., 1998) or the Occupational The process of identifying factors
Performance History Interview n Physical environment (e.g., that restrict or support current
II (Kielhofner et al., 2004). accessibility, use of assistive performance can involve a wide
technology) range of evaluative procedures.
After learning about the tasks and For example, the evaluation of
n Social environment (e.g.,
activities a client wants or needs personal factors may involve
to perform, the occupational presence and type of social
physical assessments such as
therapist will then move on to supports)
goniometric measures for joint
identify the factors that are n Cultural environment range of motion, or manual
restricting or supporting current (e.g., values, expectations) muscle testing for strength. An
performance. Occupational n Socio-economic issues occupational therapist may also
therapists focus on three specific (e.g., cost) use questionnaires such as the
types of factors (Canadian Fatigue Impact Scale (Fisk,
Association of Occupational Pontefract, Ritvo, et al., 1994) or
Therapists, 1997): the Perceived Cognitive Deficits
Scale (Sullivan, Edgley, & Dehoux,
1990) to evaluate relevant factors.

Depending on the setting in which O C C U PAT I O N A L include adjusting the lighting in
they work, some occupational THERAPISTS Elizabeths office, repositioning
therapists develop significant IN MS CARE her monitor and obtaining an
expertise in cognitive evaluations, anti-glare filter to reduce glare,
particularly ones that involve The focus of occupational and adjusting the accessibility
the performance of contextually- therapy on the persons ability options available through her
relevant functional activities to participate in valued and computer settings to maximize
(Katz, 2005). Evaluation of meaningful everyday activities is contrast and font sizes.
environmental factors is ideally relevant throughout the course of
MS. Beginning with the diagnosis, Adjustments in lighting and
achieved through a home or
the prevention of activity curtail- contrast were also made in
workplace visit done together
ment and secondary disability is Elizabeths home to address
with the patient and family. If such
critical; throughout the advanced her visual changes, particularly
a visit is not possible, interviews
stages of the disease, maintenance in the areas where she must
with the patient, family, or other
of function and compensation supervise her childs safety.
relevant individuals can be used to
for lost function are necessary. Elizabeth is comfortable
obtain the information necessary
To illustrate the different ways using new technologies, so the
for determining the extent to
that occupational therapists may occupational therapist works
which the patients environment
work with people living with with Elizabeth to select and set
is supporting or restricting
MS, several case illustrations up a personal digital assistant
performance of tasks and activities.
will be shared. (PDA) to compensate for some
At this point in the occupational of her memory problems. The
therapy process, the occupational PDA is set up to give Elizabeth
CASE #1
therapist has worked with the reminders to take medications,
patient to identify what tasks Elizabeth is a 35-year-old go to appointments, and do
and activities he/she wants or woman who was recently shopping and banking tasks.
needs to do, and the factors that diagnosed with MS. She works The occupational therapist also
are restricting or supporting part-time as a data processor and teaches Elizabeth how to analyze
performance. This information is the mother of an active two- and modify her activities and
is then used to set goals for year old. Visual and cognitive use adapted equipment in order
intervention. Occupational changes and extreme fatigue to reduce her energy expenditure
therapy interventions may focus are making it difficult for her and manage her fatigue.
on prevention, education for to fulfill her responsibilities.
health and disease management, To enable Elizabeth to continue CASE #2
compensation or remediation for working and parenting, the
lost or restricted abilities, or occupational therapist offers Mark is a 47-year-old man who
maintenance of function (Pedretti several interventions: The has primary progressive MS.
& Early, 2001; Trombly & therapist works with Elizabeth He lives alone and uses a power
Radomski, 2002). to make modifications at her wheelchair full-time. Mark just
work-place to accommodate hired a personal care attendant
her visual symptoms. Changes to help him with daily self-care
tasks. Mark has not previously The occupational therapist also Throughout these interactions,
directed a personal care aide shows Mark and the personal care the occupational therapist utilizes
and wants to ensure that he attendant how to check and cognitive behavioral techniques
gets the help he needs in a maintain the safety of his wheel- to address Georgias fear of falling.
safe and respectful manner. chair and transfer equipment. Together they plan strategies for
The occupational therapist Georgia to use when she does fall
works with Mark to develop CASE #3 so that she feels confident in her
strategies for communicating ability to handle the situation.
his needs to his personal care Georgia is a 67-year-old woman Finally, the occupational therapist
attendant, for example, explaining whose MS has recently become coaches Georgia on ways to
what he needs, giving clear progressive. She is experiencing reconnect with her friends and
directions about how to help, an increased number of falls, community activities in order to
and providing constructive which has caused her to become reverse her social isolation and
feedback about the attendants quite fearful. Her fear has led prevent depression.
actual performance of duties. to a curtailment of her activities
The occupational therapist and increasing social isolation.
CASE #4
has Mark role play different Since Georgia does not like to
communication situations to exercise, the occupational therapist Amy is a 50-year-old woman
increase his confidence in his shows her ways to increase her who has been hospitalized for a
ability to direct his personal lower extremity strength and recent exacerbation that resulted
care attendant. Once Mark feels maintain her balance while doing in loss of function on her left
comfortable giving direction everyday activities like cooking side. It is very important to
and feedback, the occupational and cleaning. The occupational Amy that she be able to prepare
therapist works with Mark and therapist also works with Georgia simple meals and do her own
the personal care attendant to select a walker that meets her dressing and bathing before she
to practice safe and efficient needs and then teaches her to returns home. The occupational
techniques for dressing, transfers, use it safely in different situations therapist works with Amy to
and bathing that optimize and around her home, yard, and teach her one-handed dressing
maintain Marks current abilities. community. To address environ- and bathing techniques, and
mental hazards around Georgias makes arrangements for Amy
The occupational therapist home, the occupational therapist to obtain a shower chair and
corrects the personal care completes a home safety checklist grab-bar for home. Amy learns
attendants body positioning, with Georgia, and together they how to transfer safely onto the
offers tips to reduce back injuries make some simple changes to shower chair using the grab-bar,
during lifts and transfers, reduce her risk of falling (e.g., and the occupational therapist
and demonstrates methods to rearranging furniture, adding corrects Amys technique to ensure
minimize the effects of Marks lighting on the stairs, tacking that she can do the transfer safely
lower extremity spasticity during down loose flooring, throwing on her own.
transfers. out worn shoes).
1. See: sammonspreston.com/Supply/Product.asp?Leaf_Id=AA5208
2. See: sammonspreston.com/Supply/Product.asp?Leaf_Id=555644#

Amy is also given guidelines for and assistive technology. In REFERENCES &
selecting a contractor to install addition, occupational therapists ADDITIONAL
the grab-bar properly in her often become involved in READINGS ON
bathroom, and the occupational developing and implementing
O C C U PAT I O N A L
therapist leaves instructions large scale, community-based
about how to position the bar programs such as Gateway to
T H E R A PY IN M S CAR E
for Amys maximum safety and Wellness (Neufeld & Kniepmann, Canadian Association of
functional independence. For meal 2001) and Managing Fatigue Occupational Therapists.
preparation, the occupational (Packer, Brink, & Sauriol, 1995). Enabling Occupation: An
therapist teaches Amy to use a Occupational Therapy
Ultimately, occupational therapists
number of assistive devices in the Perspective. Ottawa, Canada:
work together with their clients
kitchen so that she can safely CAOT Publications ACE, 1997.
to find ways to enable people
prepare simple meals with one
with MS to continue to live active Eberhart K, Finlayson M.
hand, for example, a wall-mounted
and productive lives despite the Wheeled mobility for people
jar opener, a clamp-on peeler,1 a
personal, environmental and with multiple sclerosis:
kitchen workstation,2 and a rocker
occupational challenges that Environmental and lifestyle
knife. Together, they practice
they face. considerations. International
preparing simple meals using
Journal of MS Care 2005; 7(3):
these devices so that Amy feels
101106.
comfortable that she will be able FINDING AN
to use them independently once O C C U PAT I O N A L Finlayson M (ed). Occupational
she returns home. Therapy Practice and Research
THERAPIST
with Persons with Multiple
These four case illustrations To find an occupational therapist Sclerosis. New York, NY: The
provide a glimpse into the with expertise in MS care, Haworth Press, 2003.
potential interventions that contact the National MS Fisk JD, Pontefract A, Ritvo PG,
occupational therapists might Society at 1-800-344-4867. Archibald CJ, Murray TJ. The
offer a person with MS from
impact of fatigue on patients
initial diagnosis through the
with multiple sclerosis. Canadian
remainder of the disease course.
Journal of Neurological Sciences
Many occupational therapists
1994; 21:914.
develop special skills in important
areas that are relevant to people Katz N. Cognition and Occupation
living with MS, for example, Across the Life Span: Models for
home modifications, driver Intervention in Occupational
rehabilitation, wheelchair selection Therapy. Baltimore, MD:
and prescription, cognitive rehab- American Occupational Therapy
ilitation, vocational rehabilitation, Association, 2005.
Kielhofner G, Mallinson T, Packer TL, Brink N, Sauriol A. study (N=200);5 and 57% in
Crawford C, Nowak M, Rigby Managing Fatigue: A Six-Week a preliminary South African
M, Henry A, Walens D. Course for Energy Conservation. study (N=30).6 The range
Occupational Performance Tucson, AZ: Therapy Skill in prevalence figures reflects
History Interview II Version Builders, 1995. inconsistencies in study design,
2.1. Chicago, IL: University of Pedretti LW, Early MB. including the size and character-
Illinois at Chicago, 2004. Occupational Therapy: Practice istics of the study samples, and
Law M, Baptiste S, Carswell Skills for Physical Dysfunction the terminology and assessment
A, McColl MA, Polatajko H, (5th ed). St. Louis, MO: Mosby, tools used. In addition, a lack of
Pollock N. The Canadian 2001. congruence between evaluation
Occupational Performance results by a speech/language
Sullivan MJL, Edgley K, Dehoux
Measure (3rd ed). Ottawa, pathologist and self-report by
E. A survey of multiple sclerosis:
Canada: Canadian Association individuals with MS has been
Perceived cognitive problems
of Occupational Therapists, 1998. proposed, and needs further study.
and compensatory strategy
Mathiowetz V, Finlayson M, use . . . Part 1. Canadian Journal Speech and voice problems
Matuska K, Chen HY, Luo P. A of Rehabilitation 1990; 4(2): may be identified by the person
randomized trial of energy 99105. with MS, a family member, or a
conservation for persons with Trombly CA, Radomski MV. healthcare professional. Common
multiple sclerosis. Multiple Occupational Therapy for complaints include difficulty
Sclerosis 2005; 11(5):592601. Physical Dysfunction (5th ed). with precision of articulation,
Matuska K, Mathiowetz Philadelphia, PA: Lippincott speech intelligibility, ease of
V, Finlayson M. Use and Williams & Wilkins, 2002. conversational flow, speaking
perceived effectiveness rate, loudness, and voice quality.
of energy conservation When these problems interfere
DYSARTHRIA with a persons quality of life
strategies for managing
multiple sclerosis fatigue. I N M U LT I P L E particularly the ability to
American Journal of SCLEROSIS communicate daily needs
Occupational Therapy 2007; a referral for evaluation and
National MS Society treatment by a speech/language
61(1):629
Clinical Bulletin by Pamela pathologist is recommended.
Neufeld P, Kniepmann K. H. Miller, M.A., C.C.C.-S.L.P.
Gateway to Wellness: An
occupational therapy NORMAL SPEECH
Studies of dysarthria in MS
collaboration with the PRODUCTION
indicate a prevalence ranging
National Multiple Sclerosis
from 41% to 51%.13 Self- The normal processes of speech
Society. Community Occu-
reporting of speech and other and voice production are over-
pational Therapy Education
communication disorders lapping and require the following
and Practice 2001; 13:6784.
has varied widely: 23% in a five processes to work together
study in the United States smoothly and rapidly:78
(N=656);4 44% in a Swedish

R E S P I R AT I O N DEFINITION OF COMMON
Using the diaphragm to quickly
DYSARTHRIA F E AT U R E S O F
fill the lungs fully, followed by & DYSPHONIA DYSARTHRIA IN MS
slow, controlled exhalation for DYSARTHRIA Dysarthria is considered the
speech. most common communication
Dysarthria refers to a speech
disorder, caused by neuromuscular disorder in those with MS.10 It
P H O N AT I O N is typically mild, with severity
impairment, which results in
disturbances in motor control of dysarthria symptoms related
Using the vocal cords and air
of the speech mechanism.9 The to neurological involvement.
flow to produce voice of varying
pitch, loudness, and quality. demyelinating lesions caused by Darley and colleagues published
multiple sclerosis may result in the first comprehensive, scientific
RESONANCE spasticity, weakness, slowness, study identifying common features
and/or ataxic incoordination of of dysarthria in 168 people living
Raising and lowering the soft the lips, tongue, mandible, soft with MS.11 Analyses of speech
palate to direct the voice to palate, vocal cords, and diaphragm. characteristics and description of
resonate in the oral and/or Therefore, articulation, speaking deviations in the five processes of
nasal cavities to further affect rate, intelligibility, and natural respiration, phonation, resonance,
voice quality. flow of speech in conversation articulation and prosody were
are the areas most likely to be rank ordered (see Table 6).
A R T I C U L AT I O N affected in those with multiple
sclerosis. Since then, three replication
Coordinating quick, precise studies have reported insufficient
movements of the lips, tongue, DYSPHONIA reliability of clinicians judgments
mandible, and soft palate for in the more specific areas, yet
clarity of speech. Dysphonia, which refers to a voice
high agreement in such overall
disorder, often accompanies
speech dimensions as intelligibility
dysarthria because the same
PROSODY and naturalness.12
muscles, structures, and neural
Combining all elements for a pathways are used for both speech A cross-linguistic analysis of
natural flow of conversational and voice production. Therefore, dysarthria in Australian (N=56)
speech, with adequate loudness, voice quality, nasal resonance, and Swedish (N=77) speak-
emphasis, and melodic line to pitch control, loudness, and ers with MS, using a 33-point
enhance meaning. emphasis may also be affected in protocol, identified six deviant
those with MS.1 features: harsh voice, imprecise
articulation, impaired stress
patterns, rate, breath support,
and pitch variations.12 Even
though different rank orders
and problem frequencies were
seen, agreement with
TA B L E 6 : R A N K O R D E R O F
D E V I AT I O N S I N S P E E C H & V O I C E I N M S
PERCENT (N=168) D E V I AT I O N DESCRIPTION
77% Loudness control Reduced, mono, excess or variable
72% Harsh voice quality Strained, excess tone in vocal cords
46% Imprecise articulation Distorted, prolonged, irregular
39% Impaired emphasis Phrasing, rate, stress, intonation
37% Impaired pitch control Monopitch, pitch breaks, high, low
35% Decreased vital capacity Reduced breath support

and control
24% Hypernasality Excessive nasal resonance
Darleys list of seven most com- multiple neurological systems MS may be accompanied by
mon features was noted, with are typically involved.13 the underlying symptoms of
the exception of loudness and spasticity, weakness, tremor
hypernasality. SYMPTOM and ataxia; and complicated by
fatigue.
MANAGEMENT OF
DIFFERENTIAL CONTRIBUTING Therefore, evaluation of
DIAGNOSIS FAC TO R S medication trials to treat these
symptoms, and ongoing
There are three types of dysarthria Differential diagnosis of the communication with the
associated with MS (see Table 7): type of dysarthria has important patient and physician about the
spastic, ataxic or mixed. Differential implications for treatment impact on speech and voice, is
diagnosis depends on the extent planning by the speech/language recommended during therapy.1
and location of MS lesions, and pathologist, as well as decision-
the specific speech, voice, and making by the physician regarding
accompanying physical signs pharmacologic management.
that result. Mixed dysarthria is Dysarthria and dysphonia in
most common in MS, because

TA B L E 7 : C O M PA R I N G T H E
T H R E E TY P E S O F D Y S A R T H R I A
R E L AT E D N E U R O M U S C U L A R /
SPEECH & VOICE SIGNS
PHYSICAL SIGNS
S PA S T I C D Y S A R T H R I E A : D U E T O B I L AT E R A L L E S I O N S O F C O R T I C O B U L B A R T R A C T S
n Harsh, strained voice quality n Hypertonicity (excess muscle tone)

n Pitch breaks n Bilateral spasticity
n Imprecise articulation n Restricted range of motion (jaw)
n Slow rate of speech n Reduced speed of movement
n Reduced breath support and/or control n Bilateral hyperreflexia
n Reduced or mono-loudness n Sucking and jaw jerk reflexes
n Short phrases, reduced stress n Cortical disinhibition
n Hypernasality
ATA X I C D Y S A R T H R I A : D U E T O B I L AT E R A L O R G E N E R A L I Z E D L E S I O N S O F T H E C E R E B E L L U M
n Vocal tremor n Intention tremor: head, trunk, arms, hands

n Irregular articulation breakdown n Broad-based, ataxic gait
n Dysrhythmic rapid alternating movements n Nystagmus and irregular eye movements
of the tongue, lips, and mandible n Balance or equilibrium problems
n Excess and equal stress (scanning speech) n Hypertonicity
n Excess and variable loudness n Overshooting; slow, voluntary movements
n Prolonged phonemes and intervals
R E L AT E D N E U R O M U S C U L A R /
SPEECH & VOICE SIGNS
PHYSICAL SIGNS
M I X E D D Y S A R T H R I A : D U E T O B I L AT E R A L , G E N E R A L I Z E D L E S I O N S O F M U LT I P L E A R E A S
I N T H E C E R E B R A L W H I T E M AT T E R , B R A I N S T E M , C E R E B E L L U M , A N D / O R S P I N A L C O R D
n Impaired loudness control (reduced, n Any combination of spastic and ataxic features
monoloudness, or excess and variable as mentioned above

n Harsh or hypernasal voice quality
n Impaired articulation (imprecise, distorted,
prolonged or irregular breakdowns)
n Impaired emphasis (slow, prolonged intervals or
sounds, reduced, or excess and equal stress)
n Impaired pitch control (monopitch or pitch
breaks, too low or too high)
ASSESSMENT Analyzing laryngeal control Formal articulation tests are

OF DYSARTHRIA of loudness, pitch and voice not commonly used because
quality during phonation. MS-related dysarthria tends
Evaluation of dysarthria and to have an irregular pattern of
2. Perceptual analysis to describe
dysphonia in MS typically breakdown that is not necessarily
the various dimensions of
involves three main aspects: based on misarticulation of
respiration, phonation,
articulation, resonance, and specific speech sounds. Rather,
1. Assessment of oral-motor
prosody. To classify type and measures of oral reading rate in
function of the peripheral
severity of dysarthria. phonetically balanced passages
speech mechanism by:
(e.g., My Grandfather one of
Examining the structure and 3. Rating of speech intelligibility
many standardized, phonetically-
function of the articulators and naturalness in conversation.
balanced oral reading passages)
(lips, teeth, tongue, mandible, and analysis of a brief, recorded
hard and soft palates) for Dysarthia evaluation in MS
spontaneous speech sample (e.g.,
symmetry, strength, speed, has traditionally included both
describe job, family, interests,
and coordination. informal and formal measures of
etc.) are standard procedures.
a variety of oral-motor, speech,

Evaluating respiratory Speaking rate, articulation
and voice functions, with
support and control for precision, number of words/
comparison to referenced norms.
speech. breath unit, pauses within and

between words, intelligibility, and

naturalness of conversational n Queensland Protocol, an Pascal 5.5) to objectively measure
flow are then measured and adapted version of the perceptual variations in sound/syllable
described. Speaking rate varies analysis/dysarthria classification duration, rate of articulation,
according to the task: oral reading procedure introduced by Darley vocal intensity, and size of
of sentences 190 words per and colleagues. This protocol working space for vowel and
minute; oral reading of paragraphs includes 33 items relating to consonant production.1718
160170 words per minute; the five speech dimensions of n Lip and tongue transducers
speaking rate in conversation respiration, phonation, resonance, have been used to objectively
150250 words per minute. articulation and prosody, and measure range, force, and
The wide range in conversation uses a 4-point descriptive diadochokinesis (or rapid
is due to a variety of cognitive- equal-interval scale to measure alternating movements) of
language factors, including the rate, intelligibility, articulation their function. Results of a
complex verbal formulations precision of consonants and recent study by Hartelius and
that are used, word retrieval/ vowels, and phoneme length.16 Lillvik using this technique
fluency abilities, turn-taking, found that tongue function
and lack of concrete cues for NEW DIRECTIONS is more severely affected than
pauses (such as the commas and lip function in MS, that tongue
IN ASSESSMENT
periods in reading materials). dysfunction can be detected
There has been a trend in recent subclinically (in non-dysarthric
Some formal, published measures
years, to supplement perceptual subjects), and that there was a
used in dysarthria evaluation in
analyses of dysarthria with acoustic moderate correlation to severity
MS include:
analyses of speech parameters. of neurological deficit and years
n Assessment of Intelligibility Advancement in physiological in disease progression. Based on
in Dysarthric Speech (word instrumentation for assessment their findings, the importance
and sentence levels), in which is aimed at improving objectivity of targeting improvement in
a judge, unfamiliar with the in measurement, refining our tongue functioning early
material, transcribes the understanding of dysarthria features in articulation therapy was
recorded responses.14 specific to MS, and ultimately suggested.19
aiding clinical decision-making
n Dysartri-test, which includes 54
and treatment planning. Despite advances in the
test items, scored on a five point
interval scale. Items measured in development of instrumental
n Spectrographic displays have
each speech parameter include: assessment techniques in recent
been used to obtain specific
respiration, phonation, oral- years, perceptual analysis of
measures of acoustic distinct-
motor performance(divided recorded speech remains a
iveness during speech samples.
into lips, jaw, tongue, and soft primary tool for differential
For example, Tjaden and Wilding
palate, plus a diadochokinesis diagnosis and treatment planning.
used a soundtreated booth,
rating), articulation, prosody head-mounted microphone, and
and intelligibility.15 recording software (such as the
CSpeechSP 4.0 or windows-
based version TF32, Turbo
T R E AT M E N T (e.g., speaking with adequate Traditional dysarthric
loudness and intelligibility for compensations taught to MS
Evaluation of evidence-based telephone activities at work or speakers include: improving
research and expert opinion home).23 breath support and control;
to support the treatment of reducing the rate of speech;
dysarthria and to develop practice Clinical decision-making
using strategic pauses within and
guidelines has been a project of in treatment planning is
between words; exaggerating
the American Speech/Language individualized according to
articulation; and actively self-
Hearing Association (ASHA) the persons specific problems
monitoring/self-correcting
and Academy of Neurologic and communication needs.
speech.
Communication Disorders and Improving speech intelligibility
Sciences (ANCDS) since 1997.20 and naturalness should be In a recent review of the
A series of four practice guide- the ultimate goal of therapy. intervention literature on
line reports were published in Selection of appropriate treat- respiratory/phonatory dysfunction
the Journal of Medical Speech/ ment approaches, and where to in dysarthria,24 evidence was
Language Pathology (20012004) begin therapy, depend on which found to support the following:
and are available at ancds.org.21 deviant speech dimension(s)
Guidelines for improving speech are most disabling in these IMPROVING
intelligibility and naturalness are two areas. Work on one target B R E AT H S U P P O R T
forthcoming. behavior can have overlapping,
indirect effects on other physi- Improving breath support by
The World Health Organizations ological and acoustic variables. using biofeedback to gauge
2002 international classification For example, improving breath respiration (and loudness or
of function, disability and health support/control can increase phrase length) during speech
has had a significant impact in loudness and indirectly reduce tasks, and when learning a
the field of rehabilitation. The rate, thus allowing more precise new breath pattern with deeper
goal of addressing physical articulation and improving overall inhalation, increased force at
function and structure within speech intelligibility. Measuring exhalation, and use of abdomen.
the broader context of a persons impact on participation and Physiological and acoustic
ability to participate actively in quality of life are recommended, biofeedback methods, such as a
his or her world, has influenced to assess functional outcomes of Visi-pitch, Computer software,
both assess-ment protocols and dysarthria therapy. VU meter, recorder, respitrace,
treatment planning.22 In dysarthria water manometer, velocity/air
therapy, the trend has been away pressure transducer, oscilloscope,
from a focus on specific impair- and EMG were mentioned.
ments (e.g., oral exercises to
normalize movement patterns),
toward the acquisition of specific
skills to facilitate participation
in functional real-world activities

IMPROVING A review of the literature on R H YT H M I C
R E S P I R AT O R Y / evidence-based practices in
Rate control techniques that also
P H O N AT O R Y dysarthria therapy also found the
attempt to preserve naturalness
C O O R D I N AT I O N technique of managing speaking
by using biofeedback systems
rate to be effective in improving
Improving respiratory/phonatory including the Pacer/Tally soft-
speech intelligibility. However,
coordination by increasing ware,28 Visi-pitch, and delayed
with rate control techniques there
awareness of the irregular speech- auditory feedback (DAF)
can be a negative impact on
respiratory pattern, determining during speech tasks.29 The direct
naturalness of conversational
optimal words/breath groups, magnitude production technique
flow, which must be considered
gradually increasing them, and (DMP), which uses no external
in treatment. Slowing rate can
practicing flexibility in cued and device, can also be effective. The
be accomplished by changing
non-cued conversational scripts. DMP is self-devised, and asks the
either the speech time (stretching
individual to speak at half his
out the word), or the increasing
IMPROVING habitual rate. Whereas the rhythmic
the pause time (within or between
P H O N AT O R Y techniques take more time to
words). The two types of rate
FUNCTIONING learn, both speech intelligibility
control include:27
and naturalness may be improved.
n Hyperadduction (harsh voice
quality, typical of MS): Often RIGID Imprecise articulation of
not directly treated because consonants has been noted as the
Use of external aids such as
it is difficult to modify, with greatest contributor to reduced
finger tapping, a pacing board,
negligible impact on intelligibility. overall speech intelligibility. In
or a metronome to slow
two studies specific to dysarthria
n Hypoadduction (soft, breathy, speaking rate and allow more
treatment in MS speakers, the
whispered voice quality): precise articulation of each
combined/overlapping effects of
Significant improvement has word or syllable. Although this
multiple techniques (increasing
been demonstrated using the technique provides the fastest
loudness, reducing rate, and
Lee Silverman Voice Treatment and greatest improvement in
exaggerating articulation) showed
(LSVT) in those with Parkinsons intelligibility, naturalness in
a positive impact on preciseness
disease and hypokinetic flow of speech can suffer. It can
and speech intelligibility. Hartelius
dysarthria.25 The LSVT seeks to be a motivating starting point,
found tongue function to be
increase vocal loudness, by when combined with rhythmic
more severely affected than lip
increasing phonatory effort, rate control.
function in dysarthric and non-
which has been shown to
dysarthric speakers with MS
improve speech intelligibility.
(N=77).19 Therefore, increasing
Variable results with the LSVT
articulatory excursions while
technique have been noted in
reducing rate is recommended.
MS speakers and their spastic,
ataxic, and mixed types of
dysarthria. 26
Increasing loudness and reducing There are low-tech alternatives, In 2001, Medicare began
rate have also been associated such as: alphabet, picture, or providing reimbursement for
with increasing the size of the eye gaze boards, as well as bells, evaluation, treatment, and
articulatory-acoustic working buzzers, and yesno systems appropriately prescribed SGD
space, and thus improving any of which offer manual, optical, devices. Medicares assessment
articulation precision and acoustic or partner-assisted selection. And protocol and guidelines set the
distinctiveness. Tjaden and there are high-tech alternatives standard for state, federal, and
Wilding performed acoustic and with dedicated devices such as private health plans. For example,
perceptual analyses of 15 mild Link or LightWRITER or prior to SLP recommendation
to moderate spastic, ataxic, and multi-purpose/integrated devices, and physician prescription, an
mixed dysarthric speakers with such as Mercury or Dynavox assessment trial of at least three
MS and found that acoustic that use special PC software systems that incorporate the
distinctiveness of vowels, as such as a keyboard with word- necessary features is required
indexed by vowel space, was prediction software, EZ keys, before Medicare will provide
maximized in the slow condition, touch screen, joystick, mouse, authorization. Information about
whereas distinctiveness of stop optical or switch scan as input, Medicare funding is available at
consonants was maximized in and text to digitized or synthesized aac-rerc.com.
the loud condition.17 These speech output. Information about
findings are important for AAC devices, vendors, materials, CONCLUSION
treatment planning. and tutorials can be found at
aac.unl.edu.31 In a preliminary MS study
in South Africa, 62% of the
A U G M E N TAT I V E & Yorkston and Beukelman (2000) respondents experiencing speech
A LT E R N AT I V E developed a functional staging and language problems reported
C O M M U N I C AT I O N system for AAC intervention to that these difficulties had a
aid in clinical decision-making.32 negative impact on their quality
The need for augmentative and
It rates five areas speech, of life (QOL). Although the
alternative communication
cognition, literacy, vision, prevalence of dysarthria in MS
(AAC) devices in individuals
and upper and lower extremity has been reported to be at least
with MS is relatively uncommon.
functioning on a 5-point 41%, referral rate is low a
However, when severe dysarthria
scale. A team approach to AAC significant gap that needs to be
interferes with the individuals
evaluation (including a physical addressed.
well-being, safety, and functional
therapist, occupational therapist,
communication of daily needs, Assessment protocols and
and speech/language pathologist)
evaluation for an appropriate treatment procedures for
that takes into account the full
speech generating device (SGD) dysarthria in MS have shown
range of a persons symptoms, is
is indicated.30 Speech supple- recent advances. Trends have
recommended. Once assessment
mentation devices (such as voice included the refinement of
and training on the appropriate
amplifiers) and non-speech perceptual and acoustic analyses,
device has been completed,
alternatives are also available. and incorporation of the
routine re-evaluation and update
is essential. World Health Organizations

international classification of 4. Beukelmam D, Kraft G, Freal J. 10. Murdoch BE, Theodoros
function, disability and health, Expressive communication DG (eds). Speech and Language
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the areas of prevalence, acoustic 1994; 46:917. of perceptual analysis of speech
and physiological dimensions 6. Klugman TM, Ross E. characteristics in Australian and
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Logop 2002; 54:201221.
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a multiple sclerosis incidence in dysarthria: Acoustic and
Disorders: Substrates, Differential
cohort: In relation to neuro- perceptual findings. J Speech
Diagnosis, and Management.
logical data. Folia Phoniatr Lang Hear Research 2004;
St. Louis: Mosby Year Book, 1995.
Logop 2000; 52:160177. 47:766783.
18. Tjaden K, Watling E. 24. Spencer KA, Yorkston KM. 29. Berry W, Goshorn E. Immediate
Characteristics of diadochkinesis Evidence for the treatment visual feedback in the treatment
in multiple sclerosis and of respiratory/phonatory of ataxic dysarthria: A case study.
Parkinsons disease. Folia Phoniatr dysfunction from dysarthria. In Berry W (ed): Clinical Dysarthria.
Logop 2003; 55:241259. In Strand EA (ed): Treatment Austin, TX: Pro-Ed, 1983:253
19. Hartelius L, Lillvik M. Lip and of dysarthria: Support by 266.
tongue function differently evidence-based research and 30. Buzolich MJ. Augmentative
affected in individuals with expert opinion. ASHA Perspectives and alternative communication
multiple sclerosis. Folia Phoniatr (Division 2) 2002; 12(4):416. (AAC) assessment: Adult aphasia.
Logop 2003; 55:19. 25. Ramig LO, Pawlas A, Country- ASHA Perspectives (Division 2)
20. Strand EA. Treatment of man S. The Lee Silverman Voice 2006; 16(4):612.
dysarthria: Support by Treatment (LSVT): A Practical 31. Mathy P. Augmentative and
evidence-based research Guide to Treating the Voice and alternative communication
and expert opinion. ASHA Speech Disorders in Parkinson intervention in neurogenic
Perspectives (Division 2) 2002; Disease. Iowa City: University disorders with acquired
12(4):34. of Iowa, National Center for dysarthria. In Strand EA (ed):
Voice and Speech, 1995. Treatment of dysarthria: Support
21. Spencer KA, Yorkston KM.
Evidence for the treatment 26. Sapir S, Pawlas A, Ramig LO, by evidence-based research
of respiratory/phonatory Seeley E, Fox C, Corboy J. and expert opinion. ASHA
dysfunction from dysarthria. Effects of intensive phonatory- Perspectives (Division 2) 2002;
In Strand EA (ed): Treatment respiratory treatment (LSVT) 12(4):2227.
of dysarthria: Support by on voice in two individuals 32. Yorkston KM, Beukelman
evidence-based research and with multiple sclerosis. J Med DR. Decision-making in AAC
expert opinion. ASHA Perspectives Speech Lang Path 2001; 9: intervention. In Beukelman DR,
(Division 2) 2002; 12(4):416. 141151. Yorkston KM, Reichle J (eds):
22. World Health Organization. 27. Hammen VL. Managing Augmentative and Alternative
International Classification of speaking rate in dysarthria. Communication for Adults with
Function, Disability, and Health. In Strand EA (ed): Treatment Acquired Neurologic Disorders.
2001. 3.who.int/icf. of dysarthria: Support by Baltimore: Paul H. Brookes, 2000.
evidence-based research and
23. Hodge MM. Nonspeech oral
expert opinion. ASHA Perspectives
motor treatment for dysarthria:
(Division 2) 2002; 12(4):1721.
Perspectives on a controversial
clinical practice. In Strand EA 28.Beukelman DR, Yorkston
(ed): Treatment of dysarthria: KM, Tice R. Pacer/Tally Rate
Support by evidence-based Measurement Software. Lincoln,
research and expert opinion. NE: Tice Technology Services,
ASHA Perspectives (Division 2) 1997.
2002; 12(4):2227.

SWALLOWING exhibited similar abnormalities tongue and bolus stimulate
in swallowing, whereas the normal sensory nerve endings which,
DISORDERS
control group exhibited no in turn, trigger contractions
& THEIR swallowing disorders. In recent in the pharynx, initiating the
MANAGEMENT years, several other investigators pharyngeal stage of the swallow.
I N PAT I E N T S have corroborated the fact When the pharyngeal swallow
patients with multiple sclerosis is triggered, a number of motor
WITH MS frequently exhibit swallowing components are initiated:
National MS Society disorders, even if they have no
n The soft palate closes to prevent
Clinical Bulletin by Jeri A. such complaints.
food or liquid from going into
Logemann, PhD, CCC-SLP, BRS-S
It is, therefore, important for the nose.
the MS patients primary care n The larynx (entrance to the
INTRODUCTION physician to refer the patient airway) lifts and closes to
with multiple sclerosis with prevent food or liquid from
Permanent and transitory
or without a complaint of entering the trachea
swallowing disorders (dysphagia)
swallowing problems for
occur with high frequency in n The base of the tongue and
a full workup of his or her
patients with multiple sclerosis walls of the throat converge
oropharyngeal and esophageal
(MS) (Abrahams & Yun, 2002; to create pressure at the back
swallowing function as soon
Calcagno et al., 2002; De Pauw of the bolus, propelling it
as the patient has a diagnosis
et al., 2002; Prosiegel et al., 2004; throughout the pharynx
of multiple sclerosis, in order
Wiesner et al., 2002). In fact, into the esophagus.
to establish a baseline swallow
swallowing disorders may be
physiology against which to n The upper esophageal
present long before the person
compare any future changes. sphincter (located at the top
with MS experiences any related
of the esophagus) opens to
symptoms.
enable the food to enter
NORMAL
In 1987, Dr. Angie Fabiszak the esophagus.
SWALLOWING
studied three groups of individuals:
Once in the esophagus, sequential
healthy controls with no diagnosis Normal swallowing involves
esophageal motor contraction
of multiple sclerosis or other cortical control of the facial
(peristalsis) propels the bolus
medical problems; patients muscles and tongue in placing
through the esophagus to the
with MS but no complaints food in the mouth, manipulating
stomach. The lower esophageal
of swallowing problems; and and tasting the food, chewing
sphincter opens to allow the
patients with multiple sclerosis it, and forming it into a ball or
bolus to enter the stomach. The
who were complaining of a bolus to be swallowed. Once the
entire swallow, from placement
swallowing disorder. Results of bolus is formed, the tongue
of food in the mouth through
x-ray studies (modified barium begins to propel the food, or part
entrance to the stomach, occurs
swallow) on these patients of it, into the pharynx (throat),
rapidly (1 second in the oral cavity,
revealed that both of the groups where control of the process is
1 second in the pharynx, and
of patients with multiple sclerosis taken. The movements of the
810 seconds in the esophagus),
safely (with no aspiration), The modified barium swallow is In addition to demonstrating
and efficiently (with minimal preferred because the MS patient the individual patients swallow
residue). may aspirate when given the usual physiology, the modified barium
large-volume swallows, including swallow makes it possible to
The normal swallow depends
cup drinking, which are used for introduce and evaluate manage-
upon a well-functioning central
a standard barium swallow. In ment strategies should they be
nervous system, including cortical
contrast to the standard barium needed. Strategies for management
and sub-cortical areas, the brain-
swallow, the modified barium are introduced and evaluated on
stem, and peripheral nerves
swallow is designed to introduce x-ray when the patient aspirates
particularly cranial nerves. If the
calibrated, measured volumes of or has significant residual food
patients MS lesions affect any
thin liquids first, beginning with left in the pharynx after the
of these areas, swallowing may
1 ml, which is similar to a saliva swallow. By the time the patient
be challenged. Many patients
swallow, and building to 3 ml, has completed the modified
with MS will cough if food
5 ml, and 10 ml as tolerated by barium swallow procedure, the
enters their airway or will require
the patient without aspiration. clinician should have an outline
multiple swallows to clear food
of recommendations for: 1)
that has been left behind in the Then, the patient is given a
effective management strategies,
pharynx. Keep in mind, however, cup to drink from, followed
including any swallowing therapy
that patients who are experiencing by several swallows of 3 ml of
procedures that are needed; and 2)
reduced sensation may be unaware pudding, and then 2 pieces of
optimal, safe diet consistencies.
that food particles have entered Lorna Doone cookie ( of a
The radiographic study should
the airway or that residual food cookie) coated with barium
involve a speech-language path-
particles have been left in the pudding (Logemann, 1993).
ologist who is familiar with the
pharynx; they will not cough or This procedure, which involves
various management strategies
repeat their swallows in spite of a total of 14 swallows, allows
and can introduce and evaluate
the need to do so. the clinician to identify any
the immediate effectiveness
abnormalities in the swallow as
of the therapies during the
BASELINE it progresses from small to large
radiographic study.
volumes of thin liquids, and thin
SWALLOW
to thicker viscosities. In healthy
A S S E S S M E N T: individuals, both volume and COMMON
THE MODIFIED viscosity sequentially change the SWALLOWING
BARIUM SWALLOW physiology of the swallow; it is DISORDERS IN MS
& ESOPHAGRAM important to determine whether
The most common MS-related
the person with MS exhibits a
The patient with multiple sclerosis swallowing disorders in the oral
similar systematic change in his
should receive a modified barium and pharyngeal areas are:
or her swallow physiology in
swallow to examine oral and
response to changing volume
pharyngeal swallow physiology,
and viscosity (Logemann, 1998).
followed by an esophagram to
examine esophageal function.

D E L AY I N T R I G G E R I N G REDUCTION IN DYSPHAGIA
THE PHARYNGEAL TONGUE BASE MANAGEMENT
SWALLOW RETRACTION
The goal of dysphagia manage-
The delay in triggering the Reduction in tongue base activity ment is to maintain the patient on
pharyngeal swallow, which is the reduces the pressure generated a normal diet as much as possible.
most common problem seen in during the swallow, allowing Generally, two management plans
MS patients, can cause particular residual food to remain in the are devised for each patient
difficulties with liquid swallowing, pharynx and be aspirated when one to promote safe and efficient
including aspiration (Logemann, the patient resumes breathing. swallowing for oral intake and
2000). When the pharyngeal one focused on exercise/therapy
These disorders can be mild,
swallow is delayed, liquid may (Logemann, 2006). There are
without causing any significant
splash from the mouth into the various kinds of strategies that
difficulties such as aspiration
pharynx. Because motor control can be introduced, including:
or inefficient swallow; or,
of the pharynx has not been
they can be more severe and n Postural change which
activated by the brainstem, the
require therapeutic (behavioral) helps to redirect food along
airway remains open and the
management. the correct pathway (i.e., away
upper esophageal sphincter
remains closed, causing liquid from the airway;
that enters the pharynx to splash THE BARIUM n Heightened oral sensation
into the open airway and be SWALLOW prior to the swallow which
aspirated. E VA L U AT I O N enables the patient to get a faster
pharyngeal swallow;
Esophageal disorders require
REDUCTION IN n Voluntary control over swallows,
a standard barium swallow
LARYNGEAL such as holding ones breath to
evaluation in which the patient
E L E VAT I O N protect the airway, or increasing
is given a cup of barium and
effort, if possible, to clear a
Reduced laryngeal elevation can asked to swallow sequentially.
greater amount of bolus.
contribute to weakened closure A typical swallow from a cup
of the airway during the swallow or glass includes approximately n Exercises to improve range
and to reduced clearance of 15 to 20 ml per swallow, a large of motion or coordination of
material from the pharynx, volume that can cause difficulty the movement in the oral and
thereby causing residue after the if the patient has any significant pharyngeal structures as well
swallow and possible aspiration. abnormality. For this reason, the as techniques to improve strength
modified barium swallow should in the tongue.
always precede the barium
swallow to identify the locus of
oropharyngeal swallow difficulty
prior to giving the patient a large
volume of liquid in a barium
swallow or esophagram.
One factor that can play a role Several studies have shown that Both of these options for non-oral
in the selection of strategies patients who aspirate during the feeding are temporary and can
for swallowing therapy is the x-ray study have a significantly be removed or not used when
patients level of fatigue. If the increased risk of pneumonia in desired. Often patients and their
patient is extremely fatigued, the next 6 months than patients significant others think that a
some swallow therapy strategies who do not aspirate during decision to introduce partial
are not appropriate. the study (Pikus et al., 2003; or full non-oral feeding means
Schmidt et al., 1994). Non-oral that the patient will never eat by
If the patient experiences significant
supplements to ensure adequate mouth again. This, however, is
exacerbations and/or the disease
nutrition and hydration may also not the case. Non-oral feeding
progresses, the nature or severity
be recommended for patients who can serve as a temporary bridge
of his or her swallowing disorder
have been exhibiting weight while the patient improves and
could be expected to change
loss and fatigue when taking returns to oral feeding. Thus,
as well. A re-assessment of the
food orally. Whether or not the at the end of the radiographic
persons swallowing problems
patient exhibits chronic aspiration study, the recommendation for
and a revised treatment plan are
or fatigue, partial non-oral continued oral feeding, partial
appropriate at that time.
feeding may be helpful. For non-oral, or full non-oral feeding
example, the patient who aspirates will be made. This is a recomm-
R E C O M M E N D AT I O N S may do so only on certain foods endation to be carefully considered
FOR NON-ORAL and be able to eat other foods orally. by the patients physician, the
VERSUS ORAL FEEDING Or, the patient who fatigues patient, and their significant
easily may eat some foods orally others.
After the videofluoroscopic
and initiate non-oral nutrition
study of oropharyngeal swallow,
when fatigue sets in. PAT I E N T & F A M I LY
the clinician will recommend
continued oral feeding, or COUNSELING
The two basic types of non-oral
partial or complete non-oral REGARDING
feeding that allow food and
feeding depending upon the SWALLOWING
liquids to be taken into the
patients safety and efficiency MANAGEMENT
body without being swallowed
of swallow. If the patient is are the nasogastric tube that goes The speech-language pathologist
regularly aspirating on all foods, through the nose and throat into can also provide counseling to
no matter what food viscosity is the esophagus and stomach the patient and their family
presented or therapy is used, non- (generally used only on a very regarding the importance of
oral feeding may be recommended temporary basis because of the completing the exercises given
for two reasons: First, regular irritation it can cause to the nose in therapy and ways in which
aspiration can cause pneumonia; and throat), and the percutaneous the family can facilitate the
second, whatever the patient endoscoptic gastrostomy (PEG) patients practice of exercise and
aspirates will not provide nutrition that involves inserting a feeding application of techniques for
or hydration. tube through the abdominal swallowing improvement during
wall directly into the stomach. mealtime.

FOLLOW-UP Fabiszak A. Swallowing Patterns Prosiegel M, Schelling A,
in Neurologically Normal Wagner-Sonntag E. Dysphagia
It is important for MS patients Subjects and Two Subgroups and multiple sclerosis. Intl MS J
and their family members to of Multiple Sclerosis Patients. 2004; 11(1):2231.
contact both their physician and Doctoral dissertation, North- Schmidt J, Holas M, Halvorson K,
their speech-language pathologist western University, 1987. Reding J. Videofluoroscopic
if the swallow appears to worsen.
Logemann JA. A Manual for evidence of aspiration predicts
It is common for dysphagia in
Videofluoroscopic Evaluation of pneumonia and death but not
patients with multiple sclerosis
Swallowing (2nd ed). Austin, dehydration following stroke.
to wax and wane. This does not
TX: Pro-Ed, 1993. Dysphagia 1994 Winter; 9(1):
mean that swallowing manage-
Logemann JA. Evaluation and 711.
ment cannot be done, but rather
that the therapy procedures used treatment of swallowing disorders Wiesner W, Wetzel SG, Kappos L,
may need to be changed. The (2nd ed). Austin, TX:Pro-Ed, et al. Swallowing abnormalities
goal of swallowing management 1998. in multiple sclerosis: Correlation
is to keep the MS patient from Logemann JA. Dysphagia in between videofluoroscopy and
getting pneumonia or losing multiple sclerosis. In Burks J subjective symptoms. Eur Radiol
weight because of a swallowing (ed): Multiple Sclerosis: 2002 Apr; 12(4):789792.
difficulty. n Diagnosis, Medical Manage- Jeri A. Logemann, PhD, CCC-
ment, and Rehabilitation. SLP, BRS-S, is Ralph and Jean
REFERENCES New York: Demos Medical Sundin Professor, Communication
Publishing, 2000:485490. Sciences and Disorders, and
Abraham SS, Yun PT. Laryngo-
Logemann JA. Swallowing. In Professor, Neurology and
pharyngeal dysmotility in
Kalb R (ed): Multiple Sclerosis: Otolaryngology Head and
multiple sclerosis. Dysphagia
The Questions You Have The Neck Surgery, Northwestern
2002 Winter; 17(1):6974.
Answers You Need (3rd ed). University, Evanston and
Calcagno P, Ruoppolo G, Grass New York: Demos Vermande, Chicago, Illinois, USA.
MG, et al. Dysphagia in multiple 2004:87203.
sclerosis Prevalence and
Logemann JA. Speech and
prognostic factors. Acta Neurol
swallowing. MS in Focus 2006;
Scand 2002 Jan; 105(1):4043.
7:910.
De Pauw A, Dejaeger E,
Pikus L, Levine MS, Yang YX,
Dhooghe B, et al. Dysphagia
et al. Videofluoroscopic studies
in multiple sclerosis. Clin
of swallowing dysfunction and
Neurol Neurosurg 2002 Sep;
the relative risk of pneumonia.
104(4):345351.
AJR Am J Roentgenol 2003 Jun;
180(6): 16131616.
APPENDIX E:
ASSESSMENT
MEASURES IN MS
While the following ASHWORTH & MODIFIED
A S H W O R T H S PA S T I C I T Y S C A L E
list is not intended
These are ordinal scales of tone intensity. The Ashworth rates tone on a
to be comprehensive, scale of 04, while the Modified Ashworth was developed to further define
it represents many of the lower end of the scale making it more discrete by adding the grade
1+. The scale is provided in your slides. Reference: Lee KC, Carson L,
the tools commonly Kinnin E, and Patterson V. The Ashworth Scale: A reliable and reproducible
method of measuring spasticity. J Neuro Rehab 1989; 3:205209.
used in rehabilitation
assessment of patients BARTHEL INDEX
with MS. An ordinal scale of function in ten areas encompassing mobility,
ADL function, and continence. Reference: Mahoney FI, Barthel DW.
Functional evaluation: The Barthel Index. Maryland State Medical Journal
1965; 14:6165.
BERG BALANCE SCALE

An ordinal scale of balance that is sensitive to change. Reference: Berg
K, Wood-Dauphinee S, Williams JI, Maki B. Measuring balance in the
elderly: Validation of an instrument. Can J Public Health 1992; JulAug
Suppl 2: S711.

BOX & BLOCK CANADIAN FUNCTIONAL
TEST OF MANUAL O C C U PAT I O N A L INDEPENDENCE
D E X T E R I TY ( B B T ) PERFORMANCE MEASURE (FIM)
MEASURE (COPM)
The Box and Block test was An ordinal scale of functioning
originally developed to evaluate An individualized, client-centered in multiple areas including
the gross manual dexterity of measure of three areas: self-care, feeding, grooming, bathing,
adults with cerebral palsy. The productivity and leisure. Information dressing, toileting, transferring,
test is made up of a box with a about this measure can be found locomotion, comprehension,
partition directly in the centre at caot.ca/copm/index.htm. expression, social interaction and
creating two equal sides. A problem solving. Information
number of small wooden blocks about obtaining the FIM may
T H E D A L L A S PA I N
are placed in one side of the box. be obtained from Uniform Data
QUESTIONNAIRE for Medical Rehabilitation UB
The subject being tested is
The Dallas Pain Questionnaire Foundation Activities, Inc. at
required to use the dominant
was developed to assess the (716) 817-7800 or udsmr.org.
hand to grasp one block at a
amount of chronic spinal pain
time and transport it over the
that affects daily and work H E A LT H S TAT U S
partition and release it into the
activities, leisure activities, QUESTIONNAIRE
opposite side. The subject is given
anxiety-depression, and social
60 seconds in which to complete (SF-36)
interest. There is a 16 item
the test, and the number of blocks
self-report that takes about 5 This is a 36-item patient self-
transported to the other side is
minutes to complete. Each item report regarding the patients
counted. The test is then repeated
contains its own visual analog perception of health and physical
with the non-dominant hand.
scale. The scales are divided into limitations. It is widely used in
It is suitable for persons with five to eight small segments in the US. It is a component of the
limited cognition and manual which the subject is asked to MSQLI. It is a registered trade-
dexterity. Reference: Mathiowetz mark an X which indicates mark of the Medical Outcomes
V, Volland G, Kashman N, Weber where his or her pain impact Trust, Inc. (20 Park Plaza, Suite
K. Adult norms for the box and falls on the continuum. 1014, Boston, Massachusetts
block test of manual dexterity. Am 02116) Additional references:
The visual scales are anchored at
J Occup Ther 1985; 39:386391. mcw.edu/midas/health/SF-36.
the beginning with words such as
html and nationalMSsociety.org/
no pain and 0%, close to the
MUCS_health.asp.
middle some, and at the end
with all the time and 100%
impact of pain. Reference: Lawlis
G, Cuencas R, Selby D, McCoy
CE. The development of the
Dallas pain questionnaire. Spine
1989; 14:511516.
KURTZKE MINIMAL MS FUNCTIONAL
FUNCTIONAL ASSESSMENT COMPOSITE
SYSTEM SCORES OF COGNITIVE (MSFC)
( F S S ) & E X PA N D E D FUNCTION
Includes the Timed 25-foot
D I S A B I L I T Y S TAT U S IN MS (MACFIMS) walk (T25-FW), 9-hole peg test
SCALE (EDSS) (9HPT), and the Paced Auditory
An expert panel convened
by the Consortium of MS Serial Addition Test (PASAT):
The FSS and EDSS constitute
Centers in 2001 developed this The MSFC Administration and
one of the oldest and probably the
neuropsychological assessment Scoring Manual can be down-
most widely utilized assessment
for patients with MS. This is a loaded in PDF format from the
instruments in MS. Based on a
90-minute battery of 7 neuro- National MS Society website
standard neurological examination,
psychological tests covering nationalMSsociety.org/MUCS_
the 7 functional systems (plus
processing speed/working memory, MSFC.asp.
other) are rated. These ratings
are then used in conjunction with learning and memory, executive
observations and information function, visual-spatial processing M S Q U A L I TY
concerning gait and use of assistive and word retrieval. Reference: OF LIFE-54
devices to rate the EDSS. Each Benedict R, et al. Minimal neuro- (MSQOL-54)
of the FSS is an ordinal clinical psychological assessment of MS
rating scale ranging from 0 to 5 patients: A consensus approach. A multidimensional health-
or 6. The EDSS is an ordinal Clin Neuropsychol 2002; 16(3): related quality of life measure
clinical rating scale ranging from 0 381397. that combines the SF-36 and
(normal neurologic examination) 18 items that are MS-specific
to 10 (death due to MS) in half- including fatigue and cognitive
MODIFIED
point increments. These may be function. It can be downloaded
F AT I G U E I M PA C T
found at nationalMSsociety.org/ in PDF format from nationalMS-
SCALE (MFIS) society.org/MUCSMSQOL-54.asp.
MUCS_FSS.asp.
Consists of 21 items to determine
the effects of fatigue in terms of
cognitive, physical, and psycho-
social functioning. An abbreviated
version consists of 5 items. The
MFIS is part of the MSQLI
and can be downloaded in PDF
format from nationalMSsociety.
org/MUCS_fatigue.asp.

M S Q U A L I TY O F TINETTI
LIFE INVENTORY ASSESSMENT TOOL
(MSQLI)
Easily administered test that
A structured self report measures gait and balance. The
encompassing the following test is scored on a three-point
components: SF-36, Modified scale to assess the patients
Fatigue Impact Scale, Pain ability to perform specific tasks.
Effects Scale (PES), Sexual Scores are combined to form
Satisfaction Scale (SSS), Bladder three measures an overall
Control Scale (BLCS), Bowel gait assessment score, an overall
Control Scale (BWCS), Impact balance assessment score, and
of Visual Impairment Scale (IVIS), a gait and balance score. The
Perceived Deficits Questionnaire scores can be interpreted with
(PDQ), Mental Health Inventory regard to risk for falls. Reference:
(MHI), Modified Social Support Lewis C. Balance, gait test proves
Survey (MSSS). The MSQLI: A simple yet useful. PT Bulletin
Users Manual can be downloaded 1993; 2/10:9, 40. Also, Tinetti
as a PDF file from nationalMS- ME. Performance-oriented
society.org/ MUCS_MSQLI.asp. assessment of mobility problems
in elderly patients. JAGS 1986;
34:119126. n
RANGE OF MOTION
(ROM) & MANUAL
MUSCLE TEST
(MMT) & GRASP
DYNAMOMETRY
Range of Motion at selected joints
is assessed using a goniometer
that measures the angle of the
joint through its range. Manual
Muscle testing uses a 6 point
grading system (0 = no contractile
ability; 5 = strength through full
ROM with maximum resistance)
to assess strength where the patient
has selective joint control. Grasp
Dynamometer Testing uses a
dynamometer to measure grasp
and pinch strength in pounds.

APPENDIX F:
RECOMMENDED
RESOURCES
READINGS Halper J. (2000). The evolution of BOOKS FROM
nursing care in multiple sclerosis. DEMOS MEDICAL
JOURNAL ARTICLES International Journal of MS Care
PUBLISHING
(serial online at mscare.com)
Cohen JA. (2009). Emerging
2(1):4. tel: 1-800-532-8663;
therapies for relapsing multiple
McDonald WI, Compston website: demosmedpub.com
sclerosis. Archives of Neurology
66(7):821-828, A, Edan G, et al. (2001). Bowling A. (2007). Alternative
Recommended diagnostic Medicine and Multiple Sclerosis
Denis L, Namey M, Costello
criteria for multiple sclerosis: (2nd ed.).
K, et al. (2004). Long-term
Guidelines from the International
treatment optimization in Bowling A, Stewart T. (2004).
Panel on the Diagnosis of Multiple
individuals with multiple Dietary Supplements and
Sclerosis. Annals of Neurology
sclerosis using disease- Multiple Sclerosis: A Health
50:121127.
modifying therapies: A Professionals Guide.
Morgante L. (2000). Hope in
nursing approach. Journal of Coyle P, Halper J. (2008).
Neuroscience Nursing 36(1): multiple sclerosis: A nursing
Living with Progressive Multiple
1022. perspective. International Journal
Sclerosis: Overcoming the
of MS Care (serial online at
Frohman EM. (2003). Multiple Challenges (2nd ed.).
mscare.com), 2(2):3.
sclerosis. Medical Clinics of North Halper J. (2007). Nursing
Polman CH, Reingold SC, Edan G,
America 87:867897. Practice in Multiple Sclerosis:
et al. (2005). Diagnostic criteria
Keegan BM, Noseworthy JH. A Core Curriculum (2nd ed.).
for multiple sclerosis: 2005
(2002). Multiple sclerosis. Annual New York: Demos Medical
revisions to the McDonald
Review of Medicine 53:285302. Publishing.
criteria. Annals of Neurology
58(6):840846. Harrington CB. (2008). Barrier-
Free Travel: A Nuts and Bolts
Guide for Wheelers and Slow
Walkers (3rd ed.).

Holland N, Halper J (eds.). Rumrill PD, Hennessey M, Nissen, Kalb R, Holland N, Giesser B.
(2005). Multiple Sclerosis: A SW. (2008). Employment Issues (2007). Multiple Sclerosis for
Self-Care Guide to Wellness and Multiple Sclerosis (2nd Dummies. Hoboken, NJ: Wiley.
(2nd ed.). ed.). Koplowitz A, Celizic M.
Holland N, Murray TJ, Reingold Robitaille S. (2010). The (1997). The Winning Spirit:
SC. (2007). Multiple Sclerosis: Illustrated Guide to Assistive Lessons Learned in Last Place.
A Guide for the Newly Diagnosed Technology and Devices: New York: Doubleday.
(3rd ed.). Tools and Gadgets for Living Kroll K, Klein EL. (1995).
Kalb R. (2006). Multiple Sclerosis: Independently. Enabling Romance: A Guide to
A Guide for Families (3rd ed.). Schapiro RT. (2007). Symptom Love, Sex, and Relationships for
Kalb R. (2008). Multiple Sclerosis: Management in Multiple Sclerosis the Disabled. Bethesda, MD:
The Questions You Have The (5th ed.). Woodbine House.
Answers You Need (4th ed.). Schwarz SP. (2006). Multiple LeMaistre J. (1994). Beyond
Karp G. (2008). Life on Wheels: Sclerosis: 300 Tips for Making Rage: Mastering Unavoidable
The A to Z Guide to Living Fully Life Easier (2nd ed.). Health Changes. Dillon, CO:
with Mobility Issues Alpine Guild.
ADDITIONAL
Krupp LB. (2004). Fatigue in MacFarlane EB, Burstein P.
R E C O M M E N DAT I O N S
Multiple Sclerosis: A Guide to (1994). Legwork: An Inspiring
Diagnosis and Management. Cohen MD. (1996). Dirty Details: Journey Through a Chronic
The Days and Nights of a Well Illness. New York: Charles
LaRocca N, Kalb R. (2006).
Spouse. Philadelphia: Temple Scribners Sons.
Multiple Sclerosis: Understanding
University Press. Olkin R. (1999). What
the Cognitive Changes.
Cohen R. (2004). Blindsided Psychotherapists Should
Lowenstein N. (2009).
Lifting a Life Above Illness: A Know about Disability. New
Fighting Fatigue in Multiple
Reluctant Memoir. New York: York: Guilford Publications.
Sclerosis: Practical Ways to
Harper Collins. Pitzele SK. (1986). We Are
Create New Habits and
Increase Your Energy. Iezzoni LI. (2003). When Not Alone: Learning to Live
Walking Fails. Berkeley: with Chronic Illness. New York:
Northrop DE, Cooper S,
University of California Press. Workman.
Calder K. (2007). Health
Russell LM, Grant AE, Joseph SM,
Insurance Resources: A Guide James JL. (1993). One Particular
for People with Chronic Illness Harbor: The Outrageous True Fee RW. (1993). Planning for the
and Disability (2nd ed.). Adventures of One Woman with Future: Providing a Meaningful Life
Multiple Sclerosis Living in the for a Child with a Disability After
Perkins L, Perkins S. (1999).
Alaskan Wilderness. Chicago: Your Death (2nd ed.). Evanston,
Multiple Sclerosis: Your Legal
Noble Press. IL: American Publishing.
Rights.

I N F O R M AT I O N n Talking about Elimination n Surgical Management of
Problems Bladder Dysfunction in
FROM THE
n Talking about Sexual Multiple Sclerosis
N AT I O N A L
Dysfunction n Bowel Management in
M S S O C I E TY Multiple Sclerosis
n Talking about Depression and
M AT E R I A L S F O R Other Emotional Changes n Cognitive Loss in
H E A LT H C A R E n Talking about Cognitive Multiple Sclerosis
PROFESSIONALS Dysfunction n Management of Fatigue

n Talking about Initiating and in Multiple Sclerosis
Available from the PRC:
Adhering to Treatment with n Emotional Issues of the
healthprof_info@nmss.org
Injectable Disease-Modifying Person with MS
Agents n Pain in Multiple Sclerosis
PA M E L L A C AVA L L O
n Talking about Family Issues
PROFESSIONAL n Spasticity
E D U C AT I O N S E R I E S n Talking about Life Planning n Diagnosis and Management
n Talking about the Role of of Vision Problems in Multiple
n Multiple Sclerosis:
A Focus on Rehabilitation Rehabilitation Sclerosis
n Talking about Stress n Occupational Therapy in
n Multiple Sclerosis:
A Model of Psychosocial n
Talking about Reproductive Multiple Sclerosis Rehabilitation
Support Issues n Complementary and Alternative
n Multiple Sclerosis: n Talking about Primary Medicine in Multiple Sclerosis
The Nursing Perspective Progressive MS n Improving Adherence to Therapy
n Multiple Sclerosis: n Talking about Palliative Care, with Immunomodulating Agents
Medication Management Hospice, and Dying n Public Policy Awareness
n Aging with Multiple Sclerosis
TA L K I N G W I T H Y O U R CLINICAL BULLETINS n Dysarthria in Multiple Sclerosis
M S PAT I E N T A B O U T
nationalMSsociety.org/Clinical n Assessment and Treatment
D I F F I C U LT T O P I C S
Bulletins of Sexual Dysfunction in
nationalMSsociety.org/ Multiple Sclerosis
n Overview of MS
PRCPublications n Swallowing Disorders and
n Primary Care in MS
n Talking about the Diagnosis Their Management in Patients
n Reproductive Issues in Persons
of Multiple Sclerosis with Multiple Sclerosis
with Multiple Sclerosis
n n Vitamin D and MS:
Talking about Progressive
n The Role of Hormones in MS
Disease Implications for Clinical Practice
n Bladder Dysfunction
in Multiple Sclerosis

EXPERT OPINION LONG-TERM CARE n Depression and
PA P E R S GUIDELINES & Multiple Sclerosis
R E C O M M E N D AT I O N S n Diagnosis: Basic Facts
nationalMSsociety.org/Expert
OpinionPapers nationalMSsociety.org/ n Disclosure: Basic Facts
PRCPublications n Exercise as Part
n Disease Management
Consensus Statement n Nursing Home Care of Everyday Life
n Fatigue: What You
n
Management of MS-Related n Adult Day Programs
Fatigue Should Know
n Assisted Living
n Food for Thought
n Changing Therapy in Relapsing n Home Care
Multiple Sclerosis: Considerations n Gait or Walking
n Caring for Loved Ones
and Recommendations Problems: Basic Facts
with Advanced MD
n Rehabilitation: n Genetics: Basic Facts
Recommendations for Persons n A Guide for Caregivers
with Multiple Sclerosis
BOOKLETS FOR
n Hiring Help at Home:
L AY R E A D E R S
n The Goldman Consensus Basic Facts
Statement on Depression Available by calling 1-800-344-
n The History of
in Multiple Sclerosis (not 4867 or online at nationalMS-
Multiple Sclerosis
available on Web) society.org/library
n Hormones: Basic Facts
n Recommendations Regarding
Cannabis in Multiple Sclerosis I N F O R M AT I O N I N n Information for Employers
n Recommendations Regarding ENGLISH n Just the Facts 20032004
Corticosteroids in the Manage- n ADA and People with MS n Living with MS
ment of Multiple Sclerosis
n At Home with MS n Managing MS through
n Patient Access to Tysabri
n
Rehabilitation
Bowel Problems: Basic Facts
n Assessment and Management n
n
MS and Intimacy
But You Look So Good!
of Cognitive Impairment in
n MS and the Mind
Multiple Sclerosis n Choosing the Right
Health-Care Provider n MS and Your Emotions
n Clear Thinking about n MS and Pregnancy
Alternative Therapies n Pain: Basic Facts
n Comparing the Disease- n A Place in the Workforce
Modifying Drugs
n PLAINTALK: A Booklet
n Controlling Bladder Problems about MS for Families

n Preventive Care INFORMACIN O T H E R N AT I O N A L
Recommendations E N E S PA O L M S S O C I E TY
for Adults with MS
n Comparacin de los P U B L I C AT I O N S
n Putting the Brakes on MS Medicamentos Modificadores
Available at 1-800-344-4867, and
n Research Directions in MS de la Enfermedad
on the website at nationalmssoci-
n Should I Work? n Controlando los Problemas ety.org/library
n Sleep Disorders and de la Vejiga en la Esclerosis
n Momentum A magazine for
MS: Basic Facts Multiple
people living with MS
n Debo Trabajar? Informacin
n So You Have Progressive MS? n Knowledge Is Power A series
para Empleados
n Solving Cognitive Problems of articles for individuals newly
n Diagnstico: Hechos Bsicos
n Someone You Know Has MS diagnosed with MS
n Ejercicios Prcticos
n n Keep Smyelin A print and
Spasticity: Basic Facts
de Estiramiento
online newsletter for young
n Speech and Swallowing:
n Ejercicios Prcticos children who have a parent
Basic Facts
de Estiramiento con with MS.
n Stretching for People with MS un Ayudante
n Stretching with a Helper n La Fatiga: Lo que Usted WEBSITES
n Taming Stress in Debe Saber
Multiple Sclerosis Note: Please be aware that web-
n Informacin para Empleadores
site URLs are subject to change
n Tremor: Basic Facts n Lo que Todo el Mundo without notice.
n Urinary Dysfunction and MS Debe Saber sobre la
n ABLEDATA
Esclerosis Mltiple
n Vision Problems: Basic Facts
Information on
n Qu es la Esclerosis Mltiple?
n Vitamins, Minerals, & Herbs Assistive Technology
n Sobre los Problemas Sexuales
in MS: An Introduction abledata.com
n What Everyone Should Know n Allsup, Inc
About Multiple Sclerosis Assists Individuals Applying for
n What Is Multiple Sclerosis? Social Security Disability Benefits
allsupinc.com
n When a Parent Has MS:
n Can Do Multiple Sclerosis
Teen Guide
(formerly The Heuga Center)
n The Win-Win Approach to
A provider of innovative
Reasonable Accommodations
lifestyle empowerment
programs for people with
MS and their support partners
MSCanDo.org

n CenterWatch Clinical Trials n MyMSMyWay
Listing Service AA A free resource (developed
centerwatch.com by The Technology Collab-
n CLAMS: Computer Literate orative) dedicated to
Advocates for Multiple Sclerosis connecting people with
clams.org Multiple Sclerosis to accessible
technologies that can help
n Consortium of Multiple
them live their lives better
Sclerosis Centers
MyMSMyWay.com
mscare.org
n The National Family
n IBM Accessibility Center
Caregivers Association
ibm.com/able
nfcacares.org
n International Journal of MS Care n The National Institute of
mscare.com
Neurological Disorders
n Medicare Information and Stroke
medicare.com ninds.nih.gov
n Microsoft Accessibility n The National Library
Technology for Everyone of Medicine
microsoft.com/enable nlm.nih.gov
n Multiple Sclerosis Information n The National Multiple
Gateway Schering AG, Berlin, Sclerosis Society
Germany nationalMSsociety.org
ms-gateway.com n The National Organization
n Multiple Sclerosis for Rare Disorders
International Federation rarediseases.org
msif.org n NARIC The National
n Multiple Sclerosis Rehabilitation Rehabilitation Information
Research and Training Center Center
George H. Kraft, MD naric.com
msrrtc.washington.edu n Rocky Mountain MS Center
n The Multiple Sclerosis Website on alternative/
Society of Canada complementary medicine
mssociety.ca (CAM)
n
The Myelin Project ms-cam.org n
myelin.org

APPENDIX G:
O R G A N I Z AT I O N S
OF NOTE
C A N D O M U LT I P L E CONSORTIUM D E PA R T M E N T O F
SCLEROSIS O F M U LT I P L E V E T E R A N S A F FA I R S
SCLEROSIS ( VA )
Formerly The Heuga Center
CENTERS (CMSC)
for Multiple Sclerosis 810 Vermont Avenue, N.W.
359 Main Street, Suite A Washington, DC 20420
27 Main Street, Suite 303 tel: 202-273-5400
Hackensack, NJ 07601
Edwards, CO 81632 website: va.org
tel: 201-678-2290
tel: 800-367-3101
website: mscare.org
website: mscando.org The VA provides a wide range
The CMSC is made up of of benefits and services to those
Can Do MS is a national, non- who have served in the armed
numerous MS centers throughout
profit organization that provides forces, their dependents, benefi-
the United States and Canada.
unique lifestyle empowerment ciaries of deceased veterans, and
The Consortiums mission is
programs for people living with dependent children of veterans
to disseminate information to
MS and their support partners. with severe disabilities.
clinicians, increase resources and
Programs focus on giving people
opportunities for research, and
the knowledge, skills, tools and
advance the standard of care for
confidence to adopt healthy
multiple sclerosis. The CMSC is
life-style behaviors, actively co-
a multidisciplinary organization,
manage their disease and live
bringing together health care
their best lives.
professionals from many fields
involved in MS patient care.

EQUAL HANDICAPPED I N T E R N AT I O N A L
E M P LO Y M E N T ORGANIZED O R G A N I Z AT I O N
O P P O R T U N I TY WOMEN (HOW) OF MS NURSES
COMMISSION (IOMSN)
P.O. Box 35481
(EEOC) Charlotte, NC 28235 359 Main Street, Suite A
Office of Communication tel: 704-376-4735 Hackensack, NJ 07601
and Legislative Affairs tel: 201-487-1050
HOW strives to build self-
website: iomsn.org
1801 L Street, N.W., 10th Floor esteem and confidence among
Washington, DC 20507 disabled women by encouraging An organization of licensed
tel: 1-800-669-3362 volunteer community involvement. nurses whose professional interests
(to order publications) HOW seeks to train disabled and activities are related to the
1-800-669-4000 women for leadership positions care of people living with multiple
(to speak to an investigator) and works in conjunction with sclerosis either through direct
202-663-4900 the National Organization of practice, research, education,
website: eeoc.gov Women (NOW). or administration.
The EEOC is responsible for

H E A LT H R E S O U R C E M U LT I P L E
monitoring the section of the
ADA on employment regulations.
CENTER FOR SCLEROSIS
Copies of the regulations are WOMEN WITH A S S O C I AT I O N O F
available. DISABILITIES AMERICA (MSAA)
Rehabilitation Institute of Chicago 706 Haddonfield Road
Cherry Hill, NJ 08002
345 East Superior Street
tel: 800-532-7667
Chicago, IL 60611
website: msassociation.org
tel: 312-908-7997
website: rehabchicago.org MSAA is a non-profit organization
that offers programs and services
The Center is a project run by
aimed at providing individualized
and for women with disabilities.
assistance to people living with
It publishes a free newsletter,
MS, their families, and their
Resourceful Women, and
care partners.
offers support groups and
educational seminars addressing
issues from a disabled womans
perspective. Among its many
educational resources, the
Center has developed a video
on mothering with a disability.

M U LT I P L E M U LT I P L E N AT I O N A L
SCLEROSIS SCLEROSIS COUNCIL
COALITION F O U N D AT I O N O N D I S A B I L I TY
(MSF) (NCD)
359 Main Street, Suite A
Hackensack, NJ 07601 6350 North Andrews Avenue 1331 F Street, N.W., Suite 1050
tel: 201-487-1050, ext. 104 Fort Lauderdale, Florida 33309 Washington, DC 20004
website: multiplesclerosis- tel: 888-MS-FOCUS tel: 202-272-2004
coalition.org website: msfocus.org website: ncd.gov
The Coalition is an affiliation of MSF is a service-based, non- The Council is an independent
independent MS organizations profit organization that provides federal agency whose role is to
dedicated to the enhancement programming and support to study and make recommendations
of the quality of life for all those help people remain self-sufficient about public policy for people
affected by MS. Its mission is and safe in their homes, and with disabilities. Publishes a free
to increase opportunities for educational programs to heighten newsletter, Focus.
cooperation and provide greater public awareness and promote
opportunity to leverage the understanding about the disease. N AT I O N A L F A M I LY
effective use of resources for the
benefit of the MS community.
CAREGIVERS
M U LT I P L E A S S O C I AT I O N
Coalition members: Accelerated
Cure Project for Multiple Sclerosis;
SCLEROSIS (NFCA)
Can Do Multiple Sclerosis; S O C I E TY O F
10605 Concord Street
Consortium of MS Centers; CANADA
Kensington, MD 20895
International Organization of
250 Bloor Street East #1000 tel: 301-942-6430
MS Nurses; Multiple Sclerosis
Toronto, Ontario website: nfcacares.org
Association of America; Multiple
M4W 3P9, Canada NFCA is dedicated to improving
Sclerosis Foundation; National
tel: 416-922-6065 the quality of life of Americas
Multiple Sclerosis Society; United
in Canada: 1-800-268-7582 18,000,000 caregivers. It pub-
Spinal Association; Vision Works
website: mssoc.ca lishes a quarterly newsletter
Foundation, Inc/MS Friends
Initiative. A national organization that and has a resource guide, an
funds research, promotes public information clearinghouse, and
education, and produces pub- a toll-free hotline: 1-800-896-
lications in both English and 3650.
French. They provide an ASK
MS Information System data-
base of articles on a wide variety
of topics including treatment,
research, and social services.
Regional divisions and chapters
are located throughout Canada.

N AT I O N A L OFFICE ON THE S O C I A L S E C U R I TY
M S S O C I E TY AMERICANS WITH A D M I N I S T R AT I O N
DISABILITIES ACT
733 Third Avenue 6401 Security Boulevard
New York, NY 10017 Department of Justice, Baltimore, MD 21235
tel: 1-800-344-4867 Civil Rights Division tel: 1-800-772-1213
website: nationalMSsociety.org website: ssa.gov
P.O. Box 66118
The National MS Society is the To apply for social security
Washington, DC 20035
largest nonprofit organization benefits based on disability,
tel: 202-514-0301
in the United States supporting call this office or visit your local
research for the treatment, This office is responsible for social security branch office. The
prevention and cure of multiple enforcing the ADA. To order Office of Disability within the
sclerosis. Through its 50-state copies of its regulations, call Social Security Administration
network of chapter and the 202-514-6193. publishes a free brochure entitled
combined efforts of volunteers, Social Security Regulations:
donors, researchers and health Rules for Determining Disability
PA R A LY Z E D
professionals, the Society provides and Blindness.
VETERANS OF
significant outreach, education
and support to individuals and A M E R I C A ( P VA )
THROUGH THE
families who are impacted by 801 Eighteenth Street N.W. LOOKING GLASS
the disease. Washington, DC 20006
tel: 1-800-424-8200 National Research and Training
website: pva.org Center on Families of Adults with
Disabilities
PVA is a national information
and advocacy agency working to 2198 Sixth Street, Suite 100
restore function and quality of Berkeley, CA 94710
life for veterans with spinal cord tel: 510-848-4445 and
dysfunction. It supports and 1-800-644-2666
funds education and research and website: lookingglass.org
has a national advocacy program
that focuses on accessibility issues.
PVA publishes brochures on many
issues related to rehabilitation.

UNITED SPINAL WELL SPOUSE
A S S O C I AT I O N F O U N D AT I O N
Formerly the Eastern 610 Lexington Avenue
Paralyzed Veterans Association New York, NY 10022-6005
tel: 212-644-1241 and
75-20 Astoria Boulevard
1-800-838-0879
Jackson Heights, NY 11370
tel: 718-803-3782 An emotional support network
email: info@unitedspinal.org for people married to or living
website: unitedspinal.org with a chronically ill partner.
Advocacy for home health and
United Spinal is a membership
long-term care and a newsletter
organization that was incorporated
are among the services offered. n
in New York in 1947 under the
name Eastern Paralyzed Veterans
Association (Eastern). In January
of 2004, EPVA became the United
Spinal Association, with the
expanded mission of advocacy
for all individuals with a spinal
cord injury or disease, regardless
of their age, gender, or veteran
status. United Spinal offers a
wide range of benefits, including
hospital liaison, sports and
recreation, wheelchair repair,
adaptive architectural consultations,
research and educational services,
communications, and library
and information services, as well
as publications on a variety of
subjects.

APPENDIX H:
CONTINUING
E D U C AT I O N

nationalMSsociety.org/PRC

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CE CREDITS

ROSALIND KALB, PHD, EDITOR

n Consultations and literature search services to support high quality

VISIT OUR WEBSITE:

2012 National Multiple Sclerosis Society. All rights reserved.

Disease Course Classifications. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Restorative & Preventive Goals of Rehabilitation in MS.. . . . . . . . . . . . . . . . . . . . . 25

The Rehabilitation Team. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

The Rehabilitation Paradigm.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30

Source Materials for Rehabilitation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47

The symptoms partially cleared

2 National Multiple Sclerosis Society

4 National Multiple Sclerosis Society

6 National Multiple Sclerosis Society

FIGURE 1: RELAPSING-REMITTING MS DISEASE COURSE

It is important to keep in mind that these disease

RRMS is characterized by clearly defined acute

SPMS begins with an initial relapsing-remitting

8 National Multiple Sclerosis Society

10 National Multiple Sclerosis Society

Spasticity SEE: SEE:

Impaired balance INTERVENTION: n Resistance to use of mobility aids:

Referral to PT: mobility aids; exercise

Failure to store (urgency, Anti-cholinergic/anti-muscarinic Fear of drinking liquids; anxiety

12 National Multiple Sclerosis Society

Failure to empty (urgency, Intermittent self-catheterization Anxiety about loss of control;

Combined failure to store/ Combination of the above

Constipation Bowel training; high fiber diet; Discomfort; exacerbation

Fecal impaction Manual disimpaction Discomfort; embarrassment

Diarrhea Disimpact and relieve constipation Discomfort; embarrassment

Fecal incontinence Bowel program; anticholinergic Loss of control; anxiety about

n Memory impairment INTERVENTIONS: INDIVIDUAL:

Cognitive rehabilitation Denial; anxiety; loss of self-

May affect communication

PRIMARY (NEUROLOGIC): INTERVENTIONS: Inability to carry out activities at

to impairments; medications Amantadine (Symmetrel);

14 National Multiple Sclerosis Society

SENSORY SYMPTOMS No treatment required unless Anxiety; discomfort;

P R I M A R Y PA I N M E D I C AT I O N S : Medications increase fatigue

n Numbness, tingling: High-dose IV steroids Steroids can affect mood

S E C O N D A R Y PA I N Analgesics; gait training; assess- Discomfort

P R I M A R Y ( R E S U LT O F Evaluation of medications that INDIVIDUAL:

or insertable medication Significant impact on

16 National Multiple Sclerosis Society

T E R T I A R Y ( R E S U LT I N G Individual and couples counseling Same as listed on page 16

Phasic spasms (flexor

muscle tone 2. Oral medications (baclofen Oral medications increase

5. Surgery Severing of tendons is irreversible

n Dysphagia difficulty in Assessment; oral exercise program; Fear of loss of control,

Involuntary movements of the INTERVENTIONS: Fear of loss of control

18 National Multiple Sclerosis Society

n Optic neuritis temporary M E D I C AT I O N S : Visual symptoms can threaten

n Diplopia double vision M E D I C AT I O N S : Steroids can impact mood

n Nystagmus rhythmic M E D I C AT I O N S : Medication can

Training in visual compensation,

20 National Multiple Sclerosis Society

22 National Multiple Sclerosis Society

24 National Multiple Sclerosis Society

26 National Multiple Sclerosis Society

28 National Multiple Sclerosis Society

30 National Multiple Sclerosis Society

32 National Multiple Sclerosis Society

34 National Multiple Sclerosis Society