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The GBS Support Group of Canada is now operating under the
Muscular Dystrophy Association of Canada. I resigned as President
as of September 2001. The Muscular Dystrophy Association has
a webpage www.mdac.ca where you will find information in French
and English on Guillain-Barré Syndrome.
Our GBS Research doctors in Canada wrote the information
for our pamphlet in 1985 and it has been upgraded several
times with the bilingual version in the year 2000. MDAC has
created a "Peer Support" for all persons willing
to support their peers in over 40 neuro-muscular disorders
including GBS and CIDP. Our GBS support persons are still
supporting GBS families and friends of GBS patients. In 1985,
out top neurologist, now deceased, felt we should be a chapter
of MDAC. ALL OUR MEDICAL ADVISERS FELT THE SAME. MDAC has
each GBS/CIDP patient register with it and in turn patients
may obtain, free of charge, the loan of medical aids such
as wheelchairs, walkers, toilet risers, ramps, at any time
during their life.
Canada is a very large country and support has grown quickly
with chapters being created in each province.
I have been fortunate to work as a volunteer for seventeen
years. Now that the office work is being done by MDAC, the
level of stress has been reduced considerably.
Since 1997, I have enjoyed supporting GBS families from around
the world by way of the internet.
By volunteering, I have not only given hope to people but
also received tremendous support myself. I do not walk very
well and have to use a wheelchair to shop. I am able to walk
in my house and so some housework. I now have a cleaning lady
and give lots of jobs to my grandchildren.
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I got sick in 1983 when I was 53 years old. I spent one year in a hospital
bed paralysed to my brain and was told I would never walk.
I spent the second year in a Day Hospital as a quadriplegic
in a wheelchair. I received pool therapy for one year, which
allowed me to stand with a walker. The third year, I struggled
to walk with the walker and went out on wheeltrans to visit
GBS patients in hospital.
Because I did not receive any treatment such as plasmapheresis,
I have residual disabilities such as stiff fingers (I type
with two fingers); cannot kneel in church; since July 2001
I have been unable to drive; I have a scooter for the summer
months; I cannot play the piano BUT I am grateful for the
life I have been able to enjoy with my husband, seven children,
12 grandchildren and one great grandson.
In October 1999, I chose to get a flu shot. I had a mild
recurrence of GBS, which has left me much weaker to this day.
I recommend that GBS persons not receive a flu shot.
I want GBS families to continue supporting their loved one
by giving care 24/7 which entails turning the patient, giving
passive physiotherapy, wiping the patient's face and brow,
telling him/her that he/she will get well.
I want all GBS/CIDP patients to tell himself/herself "every
day in every way I am getting better and better". VISULAIZE
AND SEND THE MESSAGE FROM THE BRAIN.
If you can, give the patient a gift of a Doctor of Psychology
visit every day for at least two months. I was fortunate to
have this therapy and highly recommend it.
I can be reached by e-mail:
clarksmith@ptbo.ing.net
and welcome all requests.
YOU WILL GET WELL.
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