Polio Survivors

Issue: 77

Toronto Peel York

Newsletter
Upcoming December Meetings
You are invited to attend either of the upcoming meetings at the address most convenient to you. The agenda at both meetings will be the same but by having two locations we are hoping that it will be convenient for our members to attend. Meeting A Jane Street Hub Date: Wednesday December 7th, 2011 Time: 12noon 3pm Address: 1541 Jane Street, Toronto Ontario M6M 3W2 The washroom at the Jane St Hub is accessible, but the main door into the washrooms is not. Please ask any of us for assistance. Meeting B Victoria Park Hub Date: Thursday December 8th, 2011 Time: 12noon 3pm Address: 1527 Victoria Park Avenue, (2nd oor) Toronto Ontario M1L 2T3. There is also a designated spot for the Wheeltrans parking at the entrance. There is an elevator to the 2nd oor and we will have someone in attendance to assist you.

November, 2011

Both locations are readily accessible for those in wheelchairs or with other mobility diculties. We have given directions as best as possible, if you need more information with regards the location, please contact Fred. A light snack, juice and water will be supplied but you may bring your own lunch. Dont forget, your family and friends are also invited to attend. Note: Due to chemical sensitivities, we kindly ask that you please refrain from perfumes.

Directions to the meetings

Meeting A: December 7, 2011 Jane Street Hub, 12noon - 3pm Phone: 416-645-7575 1541 Jane St.(south of Lawrence) East or West 401, to 400 south to Jane St. Just South of Lawrence Ave. east side. Meeting B: December 8, 2011 Victoria Park Hub, 12noon - 3pm Phone: 416-750-9600 1527 Victoria Park Ave, 2nd oor Eglinton Ave East on Victoria Park Ave, north side. Enter opposite side of the plaza from Value Village, o Craigton Dr (1st street) entrance on north side of building, elevator available to 2nd oor.
Whats inside this issue Note from Jan - pg 2 Breathing and sleep problems in polio survivors - pg 3 Where in the world - pg 4 Notice of Election - pg 5

Thank you for your continued generosity and support. We would like to wish you a healthy, safe and happy season

A note from Jan...

I hope this newsletter nds you well. I know it has been some time since our last newsletter. Due to health problems and family commitments our group has been in hiatus. The illness that I experienced for the last two years has been giving me more problems; also being on the steroids has also created a new set of health issues. What I have found when discussing our other illnesses with polio survivors is the confusion with health professionals and the relation between another illness and post polio syndrome. opportunity this could be for you. I learned a lot and I met some really wonderful people. Fred has been holding two positions for a few years, so maybe it is time for a change. We will give you all the training and support you need. I am happy to report that for a second year we have a new Newsletter Coordinator. Susan Bandoo is very talented with her newsletter creations, which you will have noticed. Susan conrmed that she will continue with her position. As you will see, we are trying new locations to see if these are better located for our members. The sta at both locations was so amazingly helpful. I sincerely hope you will make an eort to come out and see us. Please dont forget to return the Important Update survey form inserted in this newsletter. This is your newsletter, so if you would like to submit articles of interest, we would appreciate it. We would also love to have your personal stories. We all had struggles, some more than others. Some of us may have had great accomplishments throughout our lives, some just got by, no matter. We would love to hear from you. I know it seems a long time ago, but I would like to thank everyone involved in our Anniversary celebration last May 2010. It was nice to see many of you who come out and enjoyed the celebration, but also learn something new as well.

It can be very confusing as I am sure a lot of you have found out. So many times Contacts it seems that other illnesses Jan Nichols, Chair are ignored and 48 Quantrell Trail, it is easier just Toronto ON M1B 1L8 to blame your Tel: 416-284-7248 health problems E-mail: jan.nichols@rogers.com on post polio syndrome. Fred Seale, Vice Chair/Treasurer 219-750 Wilson Heights Blvd I hope you Toronto ON M3H 6B1 will understand Tel: 416-636-4959 our need for E-mail: fred.seale@rogers.com your help in volunteering Susan Bandoo, Newsletter Coordinator with us. E-mail: ethos30@gmail.com
Stephen Zener 5 Millerson Ave Toronto ON M6E 1J6 Tel: 416-656-1995 E-mail: spicecan@rogers.com Rick Zakowski, York Region Chair 205 Wynhurst Road Keswick ON L4P 2R6 Tel: 1-905-476-4227 E-mail: yorkregionppsn@rogers.com Audrey King, Breathing & Respiratory Issues Tel: 416-447-3763 E-mail: king.aj@rogers.com

As you will notice, we are having nominations for our executive positions. I strongly urge you to consider taking one of these positions or just adding your name to our volunteer list. Please consider what a wonderful

Waiver
We do not take responsibility for or necessarily endorse the opinions of those whose articles appear in the newsletter. We urge you to check out all information for yourselves.

News
Breathing and sleep problems in polio survivors
Prepared by International Ventilator Users Network (IVUN) www.ventusers.org

Reviewed by Nicholas S. Hill, MD, Tufts-New England Medical Center, Boston, MA

Part 1

It is critically important that polio survivors, especially those diagnosed with post-polio syndrome, obtain proper testing, diagnosis, and management of breathing and sleep problems. The problems may result from weak breathing muscles in the chest and abdomen (diaphragm and intercostals). Pulmonary function tests (mostly noninvasive) can measure the strength of respiratory muscles and usually include a test for forced vital capacity (FVC) the maximum amount of air that can be exhaled. This test is typically administered when a person is sitting in the upright position, but also should be administered when a person is lying down (supine position). People who may not experience breathing problems sitting up may nd themselves struggling to breathe when lying down. This problem is known as orthopnea, and a marked decrease in FVC while lying down indicates that the diaphragm is weak. The late E.A. Oppenheimer, MD, a pulmonologist with years of experience treating polio survivors, described it, As one ages with the late eects of polio, respiratory muscle strength may decrease. This may be particularly evident when you lie down, because in this position, the diaphragm has to work harder both to pull air in and also to push the intestines and other abdominal organs which are out of the way when one is upright due to gravity. Polio survivors also may have obstructive sleep apnea (OSA), central sleep apnea (CSA), a combination of OSA and CSA, and/or hypoventilation

(an imbalance in the gas exchange in the lungs due to too little breathing carbon dioxide builds up and oxygen drops). In obstructive sleep apnea, the upper airway collapses and blocks the ow of air so the person stops breathing periodically. These cessations of breathing are known as apneas and hypopneas. An overnight sleep study may be helpful to conrm the presence of OSA if it is suspected, based on snoring and daytime sleepiness Most sleep laboratories are set up to detect obstructive sleep apnea, for which the appropriate treatment is continuous positive airway pressure or CPAP, but not to measure carbon dioxide levels directly, which would be the best way to detect hypoventilation, for which the appropriate treatment is bi-level or positive pressure ventilation. The test for a high carbon dioxide level would be to measure arterial blood gases (requiring blood to be drawn via needle from an artery usually in the wrist) or to monitor end-tidal or transcutaneous CO2, which is usually not done. However, sleep labs look for sustained drops in oxygen saturation during sleep that would be indicative of hypoventilation and then can proceed to additional testing to conrm hypoventilation, if needed. When a bi-level device, a form of positive pressure ventilation, is prescribed, it will provide two levels of pressure; inspiratory (IPAP) to help blow air into the lungs, and expiratory (EPAP) to help keep the airways open and to blow o CO2.
Part 2 - To be continued in our next issue. Reprinted from Second Time Around, Nov., 2011- Publication of Boca Area Post Polio Group, Boca Raton FL

News
Where in the world?

You our valued members has indicated to us the countries where they contracted polio. These can be seen by the grey highlighted areas on the world map. (source: vectorworld.com) If your country is not listed please contact (see pg 2) Jan or Susan and we will be happy to update our map and database. The countries are: Afghanistan Bosnia Canada: Newfoundland, Ontario, Montreal, Quebec Ecuador Greece Germany Guyana

Hong Kong Iran Italy Indian: Delhi, Calcutta Pakistan Philippines Sri Lanka Somalia Sweden Thailand Tanzania The Netherlands: Amsterdam The United Kingdom: Scotland, England Trinidad United States of America: Indianapolis, New
York, Philadelphia

Venezuela

March of Dimes Canadas Trips & Getaways

The Recreation & Integration Services runs travel packages that you may be interested in: Trips to the Niagara region, St Jacobs Market. There are some wonderful cruises planned for next year, also a trip to Las Vegas. Applications will be posted on their website and sent out to those on their mailing list, early January 2012. For more information contact: Recreation & Integration Services March of Dimes Canada Phone: 1-800-263-3463 ext 7288 Email: recreation@marchofdimes.ca

A good read...
Philip Roths novel Nemesis
After being told by a friend about this book, I borrowed it from the Toronto Public Library. I must say that I really enjoyed it. It was a very factual description of the polio epidemics. His explanation of post polio was also very accurate...Jan Hint: Are you nding it dicult to read? Have internet? There are e-books online you can listen to on your computer.

Announcements
York Region Chair
Richard Zakowski of Keswick is a polio survivor. At the age of six months he was stricken with the polio virus. From that day, it has been an uphill battle. As a child he also had Scarlet Fever, Whooping Cough, Tuberculosis, Rheumatic Fever, just to mention a few. He endured and progressed as a survivor of polio. Later in life Richard was able to participate as a functional individual. He worked in the service of York County Hospital as a Certied Nursing Orderly. After some time, he realized that he was unable to maintain the walking that was required of this profession. Richard then transferred his career to the Richmond Hill Fire Department where he worked as an emergency communications operator for 18 years. Finally post polio and osteoarthritis had taken its toll. Thus long term disability was now a part of his life. Richard, with the help of March of Dimes became the Chairperson of the York Region Post Polio Chapter. At last count, there were 120 polio survivors in York Region. If you live in this area, feel free to get in touch with Richard at yorkregionppsn@rogers. com or call him at 905-476-4227 A lot of you may remember Rick, he is always our technical guy at workshops. He retired as Chair of York Region several years ago, but has decided to return as Chair. Welcome back, Rick
If you are moving, or if your address is not correct, please contact Jan with any changes. We are trying to keep our mailing list up to date.

Notice of Election
We will be having an election of Ocers of the Toronto chapter at our upcoming Annual General Meeting in the spring of 2012. The open positions are: Chair, Vice Chair, Treasurer, Secretary, Volunteer Coordinator. The Nominating Committee will accept nominations by e-mail or telephone to: Stephen Zener (see Contacts on pg 2) Should it be necessary, voting will take place at the Annual General Meeting with a date to be announced in the coming future.

Would you like to volunteer?

We are looking for volunteers to add to our list. If you are interested and would like to volunteer some of your time, please contact: Fred Seale (see Contacts on pg 2) We need help with folding and stung envelopes for our newsletter. Greeters at meetings to hand out name tags etc.

The benets of laughter

Have you any idea how helpful it is to your yo physical and mental health to laugh? phys Laughter lowers blood pressure and boosts the immune system. It also releases endorphins which are the bodys natural pain killers. Also it decreases stress hormones. L Laughter promotes a sense o well-being and increases of mu muscle exion. Lau Laughing is contagious and there are Laughing Clubs Rent a movie, watch a comedy show just Get laughing today
Submitted by Shirley Martin prior to her death.

Donation
Who we are
The Toronto Polio Survivors Committee was established in 1985.
Over the years Peel and York Region areas were included along with Toronto due to a lack of leadership. However March of Dimes has decided that they will now find a Chairperson for the Mississauga and Brampton areas. Richard Zakowski will Chair York Region. For now it will still be one newsletter and all finances will be handled the same. Eventually it is hoped that they will produce their own newsletters and handle their own finances. The motto of the group is that We have all had polio. Our primary goal is to share information about post polio so that we can all live as full a life as possible. The best way, is by sharing information through our newsletter, meetings and activities. You are always welcome to make suggestions or participate in all activities organized by the committee. We depend on donations to fund the newsletter, meetings, seminars and other communications. Whether or not you make a donation, you will still receive the newsletter. We try to keep the articles in the newsletter at one page or less, related to polio, and the group. The main idea is to be positive, upbeat and to focus on practical information which can be useful. This is your newsletter and we welcome personal stories and other articles from everyone. Please send all articles or personal stories to: Jan or Susan. (see Contacts on pg 2)

Thank you for your support

Mr. Mrs. Ms. Dr. ___________________________________ First Name Last Name __________________________________-___________________ Apt/Suite Address ___________________________ __________ _________-___ City/Town Province Postal Code (____) - _______ - __________ __________________________ Phone Number E-mail Address Are you a polio survivor? Yes No Or an individual interested in Post Polio? Yes NO Send to: Fred B. Seale 219 750 Wilson Heights Blvd. Toronto ON M3H 6B1 Please make cheque payable to: March of Dimes Toronto, Peel & York Post Polio
Income tax receipts will be automatically issued for donations of $10.00 and above.

Please nd enclosed: $______________________

Method of Payment Cash Cheque Visa Mastercard AMEX Card no. _________________ Expiry date: _________________ Signature: ___________________ For Ofce Use Only: CC 215167
Ontario March of Dimes respects your privacy. The information collected on this reply memo will be used to process your gift and issue you a receipt, provide you with additional information about our work and request support from you to further our mission to help people with physical disabilities. If you do not wish your name to be used for any of these activities, please call 1-800-263-3463 and ask for donor services. Many thanks for your ongoing support!

Charitable Registration No.: 10788 3928 RR0001