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Re: charcotmarietooth

Re: charcotmarietooth

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Posted by Beth on October 18, 1999 at 11:29:53:

In Reply to: charcotmarietooth posted by k. on July 06, 1999 at 13:19:21:

: If anyone has this disease please contact me at e-mail address. I am 46yrs, old and am having problems with walking and falling. My Doctos have just thrown their hands up and said there is nothing they can do. Any help or suggestions out there?

My father was diagnosed with CMT in his mid-forties. He recently passed away at the age
of 78 and had a very full life. While there is not a known cure today, there is a lot you can do to
keep yourself mobile and healthy. As a start, I would recommend contacting the MDA and also
CMT International, based in Toronto, for more information. The advantage/disadvantage of his
disease was that the changes were gradual and he was able to adjust to his abilities at each
point. He particularly liked swimming when he started to have trouble walking because the
water would support him and enable mobility. He did eventually loose his ability to walk and
care for himself in the last few years which had a significant impact on his living situation and
my parents marriage. Planning for that evenuality would be wise.

On the medical side, get yourself to a teaching hospital -- preferably with an MDA clinic. They
are up to date on the latest research and studies (and there are some out there). It is also
important as you may have some related medical problems that require other specialists down
the road -- the coordination was critical to my father's care and health.


Beth



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