Because everyone has so many questions about exercise and diet, we thought it would be helpful if we asked Dr. Greg Carter, a physiatrist practising in Washington State who knows CMT well, to answer some questions about these two topics. He agreed, as usual, and we thank him for sharing his expertise and precious time with us. Dr. Carter readily admits he doesn't know everything about CMT.

CMTI: Thank you for this Dr. Carter. It seems we are bombarded by the message that if we don't exercise we are some kind of misfit. Just about every person with CMT who finds CMT International asks what kind of exercises they should do to help make their CMT better. We are conditioned to think that exercise can cure everything that ails us. It is very frustrating to read about the benefits of exercise and know you can't do half the things recommended. I read a headline the other day that said in huge letters across the page, "Everyone can walk," and I thought to myself, no, they can't.

Asking what exercises you should do to make your CMT better is, to me, a loaded question because we have muscles served by CMT affected nerves and muscles served by normal nerves and we all vary in the degree our CMT affects us. How can we tell what muscles we can exercise and which ones we shouldn't?

Dr. Carter: This is a very often asked question from people with all forms of neuromuscular disease. There have been some case-controlled studies on exercise in CMT, some of which have been done by my good friend and colleague Dr. Dave Kilmer at the University of California, Davis. I would refer your readers to an excellent paper written by Dr. Kilmer, "The Role of Exercise in Neuromuscular Disease," in the Physical Medicine and Rehabilitation Clinics of North America Journal February 1998 edition by WB Saunders, Philadelphia, pages 115-125.

Studies have shown that most people with neuromuscular disease lead a sedentary lifestyle which, in and of itself, can cause disuse atrophy (muscles shrink because they aren't being used). This is partially the fault of doctors since the "old school" thinking was to not put too much stress on the muscles if you had CMT. It turns out that exercise is good for people with CMT.

For starters, a gentle aerobic program (swimming, stationary bicycle) can improve heart and lung function and give you more endurance. In people with reasonable preservation of strength, submaximal weight lifting (a weight you can do at least 15-20 reps with) can provide modest strength gain. However, people who are very weak must be careful to not overstress the muscles and produce 'overwork weakness' which I'll explain later on. (Linda here - Wrist weights don't risk your hands.)

My suggestion is that folks with CMT hook up with a physiatrist or physical therapist who knows CMT (i.e., through an MDA clinic) and get started on a home exercise program. Because there is a fair amount of variability in CMT (i.e., some are walking, others are using a wheelchair) it is difficult to make blanket recommendations.

Older folks and anyone with possible heart disease need to get clearance from their family physician before starting any exercise program.

CMTI: How can we judge what exercises are best for us and not be led by the nose by every TV program, newspaper article and video out there?

Dr. Carter: I think people with CMT need "individualized programs" with some direction by a professional as mentioned above. Some of those video exercise programs are downright dangerous (for anyone!). You can do the exercises on your own but should get some guidance so you don't cause overwork weakness.

CMTI: I've always said that pacing and moderation in everything including exercise is the way to go. Do you agree or do you have some other advice along that line?

Dr. Carter: I couldn't agree more. Pacing is one of the major strategies we use in rehabilitation.

CMTI: Can you tell us briefly what happens when you exercise a normal muscle, how it gets stronger and what happens when you exercise a muscle served by a CMT affected nerve. What are the dynamics there. Why do we sometimes get worse when we exercise and push ourselves.

Dr. Carter: That is a complex question. In normal muscle, hypertrophy is the major mechanism for strength. The muscle is, in a sense, 'damaged' by strenuous weight lifting but then is built up by the body and becomes larger and stronger. This hypertrophy is obvious in body builders.

In CMT, similar mechanism can occur but to a much lesser degree. The nerves that send signals to the muscles to contract are 'malfunctioning'...almost like a faulty fuel line in an automobile...so the engine sputters. Just as in a car, you wouldn't want to simply "put the pedal to the metal" to compensate for the sputtering. Rather, you would ease down on the gas pedal to slowly bring the car up to cruising speed. In CMT, if you push too hard, the muscles will start to fail and you will overtax the neuromuscular system (nerve-muscle unit) and end up weaker. This is overwork weakness.

CMTI: Why are some people with CMT able to build muscle served by CMT affected nerves to some extent and others couldn't build a muscle served by CMT affected nerves to save their lives?

Dr. Carter: This goes back to what I was saying about variability in CMT. Of course, we know that there are genetically many forms of CMT, which explains the clinical variability. People who are severely affected probably wouldn't be able to benefit as much from exercise because their system is already on overload just to move the limbs, etc. That is why I recommend getting evaluated before starting an exercise program.

CMTI: Why do a small number of people with CMT actually have megacalves instead of the bone thin ones most of us have?

Dr. Carter: That is one of those variant forms of CMT I mentioned. I have not yet seen anyone with that but know they do exist.

CMTI: Most of us with CMT have atrophied muscles from the knees down and many of us have atrophied hand and lower arm muscles. We all know this atrophy has happened because of our CMT and not from lack of exercise. In the last issue, we all learned that the peripheral nervous system doesn't just serve our arms and legs, it is everywhere. Can simply chewing wear down the ability to chew if you have a type of CMT that can affect this area? Can breathing affect your diaphragm muscles if you are prone to diaphragm involvement; or does the disease affect the nerves and the nerves affect the muscles and you see the symptoms from the root cause, the CMT, and not just because you used that part of your body and it is getting worn out?

Dr. Carter: That is an excellent question and something that I have actually studied in mice. We looked at a strain of mice with a form of muscular dystrophy (known as mdx mice). Left on their own, the mdx mice moved around a lot less in the cages and tended to avoid activity compared to their normal controls...and they did OK... and on gross observation didn't look that much different from the normal mice. We then had mice run on an exercise wheel and they became significantly weaker, while the normal control mice became stronger.

The take home message is that exercise can be both good AND bad, depending on how affected you are and how strenuous the exercise is. If you are very severely affected by CMT, then just feeding yourself can be "exercise."

I do think that diaphragm fatigue plays a major role in the rare cases where people with CMT actually have respiratory failure. However, one must breathe so it's hard to give that muscle a break! There are forms of non-invasive, assisted ventilation though that can help.

CMTI: When I work at the computer too long, the muscles under my shoulder blades start to hurt. But, when I exercise my back, chest and upper trunk with wrist weights, the pain is much less, as soon as the next day. What is happening there? Some of us experience painful mucle cramping and charley horse twisting type cramps after or during exercise.

Dr. Carter: It sounds like you are fatiguing the muscles while working at the computer and building up some lactic acid. The exercise helps the muscle get rid of lactic acid, which is a breakdown product of cell metabolism. This helps relieve the burning pain.

CMTI: Many of us sit for hours at a time at a computer, at our desk, in front of the TV and we don't get up and move around. What does this lack of activity do in the short and long run?

Dr. Carter: Sedentary lifestyles are associated with a higher cardiovascular morbidity rate (i.e., heart attacks), osteoporosis, and some forms of cancer. People who rely on a wheelchair for locomotion do have problems with this, unfortunately.

I should mention that all post-menopausal women with CMT should, if there are no other contraindications, be on hormone replacement therapy because of the high risk of developing osteoporosis.

CMTI: What do you feel are the best types of exercise for people who have CMT? Some are too weak to go in the water.

Dr. Carter: Realistically, if you are severely affected by CMT (i.e., need a wheelchair) there may be little exercise you could safely do on your own. A pool based program would be helpful for those folks but you would need supervision and access to a therapeutic, well heated pool with a lift chair. A very hard question to answer "globally" for all the reasons I've mentioned. However, I think overall that water based exercise programs are the safest and the best.

CMTI: Some of us haven't exercised on purpose for a long time. The daily grind seems to just wear us out. Would regular exercise help us better cope with the daily grind?

Dr. Carter: Yes, I think exercise is a great stress reliever but, again, people with CMT should have some guidance from a skilled clinician before just "jumping in." I wish I could just say "do these exercises" but, like most things in life, it's not nearly that simple.

CMTI: If we haven't exercised before, how can we start so we don't do damage and don't get so discouraged we quit?

Dr. Carter: Again, go to a specialty clinic (i.e., MDA clinic or university based neuromuscular disease clinic), get evaluated and get an individualized program. That will be the safest, most effective way to start an exercise program for someone with CMT.

CMTI: Forgive me for saying this, but you are beginning to sound like a lot of the doctors out there who tell us to do things and go places that many of us simply do not have access to. Some MDA clinics are less than helpful; many people do not have access to a university or a sports doctor. It would be easier if they could go to their local gym and sort things out with the help of a trainer. Any suggestions there? We do have a publication that talks about exercise and repetitions and how to tell if the muscle is getting stronger, staying the same or getting weaker. Could folks use that and work with a trainer at their gym or by themselves to better know what muscles can and cannot be strengthened safely?

Dr. Carter: What I would suggest is starting an aerobic (endurance) program first. If possible, stationary bicycling, perhaps a recumbent style stationary bike would be a good place to start. Work up to a target heart rate which is 60 to 70 percent of 220 minus your age in years. For example, if you are 50 years old, then 220-50 = 170 X 0.6 = 102. That would be considered "gentle aerobics." Seventy to 80% would be OK if you are in better shape to start. After you are completely comfortable with that, then, if available, get a good trainer. Otherwise, start with a weight routine where you can easily do a set of 15 repetitions. Do one set of all the basic exercises (that are reasonable for you to do...again, difficult to generalize here). That will be more than enough to start. Then, as you get stronger, simply USE COMMON SENSE. No one with CMT is going to look like Arnold Schwarzenegger... so be practical. If your muscles are extremely painful the next day and you feel weaker, then you have overdone it. Drink lots of water and watch for dark urine (meaning dehydrated). Coca-Cola colored urine is a sign of rhabdomyolysis, meaning you have broken down your muscles and are passing some of the muscle protein out through your urine. This is very dangerous and can cause permanent kidney damage.

CMTI: If you cannot exercise, what do you do? Some of us simply cannot exercise yet we don't want to end up with heart disease, high cholesterol or be obese. Are we doomed?

Dr. Carter: No, you are not doomed. Do Yoga, gentle stretching, maybe Tai Chi, which can be done from a wheelchair; manage your internal stress with prayer and meditation. As for your arteries, diet and stress control are just as important, maybe more important than exercise. Keep active and vital. That's what keeps us alive, I think!

CMTI: What are the benefits of exercise for the normal person? Could you please add to those the benefits to people with neuromuscular disease.

Dr. Carter: Actually, the benefits of exercise to someone with or without CMT would be similar, but maybe on a lesser scale for someone with CMT: improved endurance and strength, improved sleep patterns, better appetite control, less cardiac morbidity, improved psychological state, lowered risk for osteoporosis and some forms of cancer. The are many more benefits to exercise as well. Whole books have been written on this topic alone! I recommend a book called "Fit or Fat" by Covert Bailey ...it is funny and entertaining and filled with excellent, accurate information.

CMTI: A reader asks:

Q: I try to be as active as possible but exhaustion is a problem for me. There are days that I come home and can't even get up and eat dinner, I fall asleep. I never feel that I receive a sufficient amount of sleep no matter how long I sleep. I don't wake up refreshed. Is this a part of CMT or do I have some sort of a sleep disorder? I'm chronically exhausted (no, I am not depressed).

Dr. Carter: You may very well have a sleep disorder and could be building up CO2 in your blood at night. I would strongly recommend that you be evaluated at a sleep clinic. These can be found at universities or large medical centers and are usually run through the pulmonary and/or neurology departments.

Q: Is there anything homeopathic that I can take for the regular aches and pains? Advil and Tylenol just wipe me out.

Dr. Carter: There are many herbal compounds that have analgesic properties. I don't know of any homeopathic remedies per se but you may want to consult with a homeopathic physician. However, I have found that some of the naturopathic remedies do indeed work, and you may want to consult with a naturopathic physician. Please note that homeopathy and naturopathy are two entirely different schools of thought and practice.

Linda here - The two definitions below are parts of lengthy definitions from Spontaneous Healing published by Fawcett Columbine, New York, by Andrew Weil, M.D.

Homeopathy - Homeopathic medicine, a system of diagnosis and treatment based on the use of highly diluted remedies made from natural substances, has a distinguished 200 year history and is now enjoying new popularity. Its main virtue is that it cannot possibly cause harm, because the medicines it employs are so diluted. Homeopaths say that the diluted substances work on the body's energy field, catalyzing natural healing responses; critics charge that homeopathic remedies are nothing but placebos.

Naturopathy - also from Dr. Weil's book - Many people think of naturopathic physicians as being "New Age." In fact, naturopathy comes from the old tradition of European health spas with their emphasis on hydrotherapy, massage, and nutritional and herbal treatment. Older naturopaths may actually be chiropractors with mail-order degrees in naturopathy. Younger naturopaths are well trained in basic sciences and have had exposure to subjects omitted from the conventional medical curriculum such as nutritional and herbal medicine. Except for their adherence to a general philosophy of taking advantage of the body's natural healing capacity and avoiding the drugs and surgery of conventional medicine, naturopaths show a great deal of individuality in their styles of practice. Some use acupuncture, some use body work, some practice herbalism, others practice homeopathy.