CMT and Exercise
by Dr. Robert 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.