Re: Fighting CMT with exercise

[Guest guest]

I have an eliptical machine that I've been working out on. It seems to give

me shin splints a bit, but after walking around a bit in the morning, any pain

that I woke up with is eased and almost gone. I guess I just worry about any

potential damage, since with the relative lack of feeling, I can't really

tell " what's going on " when I exercise. I used to be a marathon runner, and I

like the " huff and puff " that I can get on the eliptical machine. I'm not a

swimmer and have an aversion to biking, so I guess I'll stick with the eliptical

and see what kind of progress I can make.

I was diagnosed about 6 months ago (after a couple of years of wondering

what was going on), and feel I am in a place mentally now where I can be more

proactive. I have been very positive about it all anyway. I figure God made me

this way for a reason, so I'll look for the sunshine in it. I know I have

already inspired some people to look at their own problems in a different light.

What about the theory (from my neurologist) of staying out of the braces to

slow the progression of the disease? I've got the stress factor issues worked

out with my family (wink, wink) and I use a relaxation tape whenever I do feel

stressed about anything. My worry of course is falling and breaking

something when I stay out of the braces. I do feel odd when I use a grocery

cart just

to pick up one item, but that life with CMT!

[Guest guest]

Greetings:

While I don't know that exercise can stop the progression entirely, I do think

that it helps keep a lot of CMT problems " in check, " expecially " secondary "

problems. By secondary, I mean not problems with the feet or hands or directly

CMT affected area, but problems with other parts of our body that result from

how we adjust to CMT (eg. if we have a very off gait it might affect the back.

etc.) I think exercise is great for controlling weight and excessive weight DOES

increase the discomfort and effects of CMT! Exercise also keeps our non CMT

affected muscles strong and many of these can compensate for the CMT affected

ones.

I started a regular exercise program about two years ago. By regular exercise,

I mean use of the eliptical trainer, treadmill, bikes, light weights and pilates

classes. I try to exercise a minimum of three times per week, preferably five

times. The exercise is also great for stress and warding off depression.

Since I began exercising, I lost about ten pounds (this took a while b/c muscle

weighs more than fat). After losing the weight, I noticed my balance was

clearly better and I could walk faster. I find that I can walk a whole lot

faster now, generally keeping up with the average gait of most people which is

something I could not do without AFOs in the past.

In terms of the CMT, I still have very cold feet, hammer toes, poor standing

balance, high arches, can't move my toes up (only down), and I can't wear heels.

Thus, my CMT hasn't exactly been " fought off " entirely. Nonetheless, I do sleep

better, have more energy, look better, walk faster and generally keep up better

than before.

I also feel strongly that if I did not exercise as I do, my CMT may have

progressed A LOT MORE than it has!! EG. if I continued not to watch my weight

my balance would be worse, fatigue worse, feet colder, atrophy more, etc.

I also take a lot of vitamins (including 4 - 8000 mg. of C), and see a healing

touch practitioner twice a month.

I think it's all been worth it because, God Willing, at least right now, I am

not very limited by the CMT (eg. work full time in job that is not just desk

work, ski, volunteer, etc.)

Hope this helps. Peace, - Marti (CMT Type 2)