exercise, emotions, etc.

[Guest guest]

I've been reading the various comments and just thought I'd add my 2 cents to

the discussion.

As far as exercise is concerned, my physical therapist gave stretching exercises

to keep the tendons stretched, and advocated either swimming or riding bike to

strengthen the muscles not as prone to atrophying. She said strengthening the

thigh muscles would help compensate for the loss of strength in the lower legs

when walking. According to her, with CMT it is especially true that if you

don't use it you will lose it! Which means unless it is absolutely necessary,

braces should not be worn 100% of the time. On the other hand, stressing an

atrophied muscle beyond what it can handle by trying to lift weights, etc. will

cause even more loss of strength since the energy is not there to repair the

damage. That is why she suggested swimming or bike riding.

Someone had posted about doing self-contained bike riding tours. I could

probably do a tour if I had a sleeping bag along to take a nap about every 4 or

5 hours.

I sure wish I had known what the problem was when I was in high school. I would

have been able to deal with the problem then instead of thinking I was lazy or

wondering why I couldn't do what other kids did no matter how hard I tried.

It's no fun always being picked last for a team or scoring the lowest in Phys.

Ed. class and having no idea why. As a teen I tried lifting weights but no

matter how hard I tried it never did anything. Now I realize it's just

impossible to do much with certain muscles no matter what.

I'm in my early 40's and what I find interesting now is that even though I

couldn't do things nearly as well as my classmates when I was in school, now I'm

probably more active than the majority of those in my age group. Once I've

found out what was going on I feel I've managed to maintain about the same

level of physical fitness that I had when I was 20 while it seems many

physically fit people have become couch potatoes by this age. Although I do

find that I seem to be getting a bit more clumsy lately.

The problem with CMT is that usually you look normal. Even my daughter who has

it worse than me, because she got help when she was little has a normal walking

gait and you can't hardly tell she's wearing braces. But because often you look

normal no one realizes the difficulties you have. I didn't even realize until

not too many years ago that my stamina level was just so much lower than other

people's. Other people work multiple jobs and I can't even work one full-time

without being totally wore out. Other people can go home from their job and do

all sorts of other activities. I go home and sleep.