CMT and Exercise by Dr. Sampson

[Guest guest]

Eleven years ago Dr. Sampson, an orthopedic surgeon who has CMT,

published a report on exercise as obtained from questionnaires. (from the

former CMT International)

CMT and Exercise

by Dr. Sampson

Well, here it is - the report on exercise as obtained from the questionnaires.

I have elected not to give any numbers on this report because there are a number

of people who didn't answer every question, and because some of the questions

were imprecise, and there were even some people who threw in extra answers.

It's important to know, however, that there were general trends which were quite

evident after we had been through the first 100 questionnaires. Altogether we

had in excess of 400 questionnaires.

More than 50% of the people responding were actively participating in an

exercise program. Most of these people preferred to exercise inside. The

majority of people had modified exercise programs. That is to say, they were not

actively participating in basketball, boxing, weight lifting, etc.

An overwhelming majority felt that they benefitted from their exercise program.

There was a minority of people who felt that exercise was detrimental to their

health, in that it caused them to be exhausted or to feel bad.

The majority of our respondents felt that they needed exercise in order to

maintain their strength.

An overwhelming majority felt that there was a sense of well-being that was

generated by their exercise.

Interestingly enough, folks were split pretty even as to whether they actually

liked to exercise. I gathered from this that although most people felt that it

enhanced their lives that they really didn't care for the exercise programs. I

would have to agree that most of the time they (exercises) are quite boring or

tedious.

A little less than half of our respondents were involved in some sort of sports

program, and the majority of sports that they did participate in were relatively

sedentary and included such things as golf, bowling and fishing.

By far the single most popular exercise program was swimming.

A very strong majority, almost 100% of the people, felt they would be interested

in learning more about a program that would help them to maintain good health

without exhausting themselves.

The majority of our people could walk but could not jog. There were several who

jogged and even a fewer number that actually ran.

Just about everyone who answered the questionnaire felt that they were concerned

because their ankles were weak. The great majority also had numb feet and about

25% of the people also had numb hands and fingers.

No one had excellent balance.

A few people thought they had good balance. The majority of our respondents felt

they either had fair or bad balance, and a small number felt that their balance

was terrible.

I have discussed these findings with a number of orthopedic surgeons who treat

neurologically diseased people.

The consensus among orthopedic surgeons and neurologists is that exercise is

beneficial for almost everyone. So I took this information to several physical

therapists and they agreed, the difference being that people with neurologic

diseases have different levels of performance and exercise programs have to be

very carefully tailored.

The majority of people who have mild to moderate symptoms from their disease

probably would do just fine with a modified but ordinary exercise program. Those

with greater than moderate involvement would probably do well to consult with a

neurologically trained physical therapist for a very customized exercise

program.

There is a very small minority, it would appear, constituting just one or two

percent of our respondents, who felt that all forms of exercise were detrimental

for them. It may well be that these people are so severely involved that this is

actually the case. I prefer to hope, however, that these people just haven't

been exposed to a gradual program of exercise.

I will be looking into this topic in a more academic way.

I hasten to add, and I think this is very important, CMT is a progressive

disease, and people who have an exercise program laid out for them should have

it reviewed on a yearly basis since their disease is progressive and they might

be harmed by exercises that were appropriate for them when they were stronger

and less involved.