Support For You
The Ottawa/Gatineau Support Group, established in 1991, provides help to members in a number of ways: The Group meets the fourth Tuesday of each month at the Carlington Centre, 900 Merivale Road, from 7pm to 8:30pm. Call 749-7401 or 770-5296 for more information.
The Group holds these monthly coping sessions to help you deal with dystonia.
A quarterly newsletter is published that provides useful information on research.
Pamphlets are also available that outlines the various types and treatments for dystonia.
Efforts are being made to develop a self-help booklet that will provide advice on all forms of dystonia, and will identify professionals who can treat you for dystonia.
Also the group sponsors a telephone support system where people can discuss coping techniques. In addition, an awareness program has been developed that educates the public and professionals on dystonia.
Finally each year a walk and wheel is held to raise awareness and research funding.
The Group does hold periodic coping sessions for spouses to help them deal with their partner's situation.
The Group provides help through regular coping sessions, and as well directs members to social workers/religious personnel who provide spiritual help.
The Group can direct you to financial counsellors who can help you receive CPP/QPP disability insurance as well as arrange financial matters to your benefit.
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Find a Financial Cousellor
Lynn Williams, 1 800 267-3391
There are a lot of reports on the Internet of people with dystonia who have managed to reduce their spasms or change the pattern of their spasms through one form or another of corrective exercises. Some are able to correct deviations of the head, for example, by concentrating on a good body posture at all time. Others have gone through intensive physiotherapy and found that they are able to regain a certain control over their affected muscles. Others, using biofeedback or visualization techniques, are now able to do things they were not able to do before, such as moving their head in all directions with ease or walking without it being an unpleasant experience. One of our group members, working with his neurologist, tried various methods to immobilize the neck for a prolonged period of time, with the result that the spasms have decreased slightly and some of the twitches have disappeared completely.
Do you want to know more stories?
Do you have a story to tell?
You can visit the following Chat Line for discussion on dystonia http://neuro-www.mgh.harvard.edu/forum/DystoniaMenu.htm
Visit additional coping sites by seeking 'dystonia' on the Internet.
For English, please contact Seaward Higdon(Stu), Tel: (613) 749-7401 Email: email@example.com
For French, please contact Yvon Breton, Tel: (819) 770-5296 Email: firstname.lastname@example.org
Ottawa-Gatineau Support Group Mail Address
P.O. Box 229, Station B, Ottawa, ON K1P 6C4
Dystonia Medical Research Foundation Canada
8 King Street East - Suite 106
Toronto, ON M5C 1B5
North American HQ
Dystonia Medical Research Foundation
One East Wacker Drive, Suite 2430, Chicago, IL 60601
800 Number: 800-361-8061 (E), 800-787-1015 (F)
See Healthcare Referrals
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