Children with CMT (Charcot-Marie-Tooth disease, a hereditary nerve disorder) can benefit greatly from regular, structured exercise. We spoke with Dr. Robert Chetlin, Associate Professor in the Department of Human Performance and the Department of Neurology at West Virginia University School of Medicine, about how exercise helps and how families and schools can support children with CMT.

Why is exercise important for children with CMT?

“Children with CMT should be active for a variety of reasons. If we can intervene when a patient with CMT is at the highest level of strength and function, that patient will achieve the highest quality of life as an adult. We also know that inactive children go into adulthood with a much greater chance of developing coronary heart disease, obesity, high blood pressure, and high cholesterol. Exercise affects a person’s overall health.”

CMT damages the sensory and motor nerves that run from the arms and legs to the spinal cord and brain, ultimately causing muscles in the feet, legs, and hands to lose strength. So how does exercise specifically benefit people living with CMT?

“Our research has demonstrated that patients who engage in a resistance training program for at least 12 weeks experience beneficial changes in strength and function. Certain muscle fiber types also increase in size through a process called hypertrophy. We have also found that sustained exercise (over one year) combining resistance and endurance training not only improves strength, but also sensory function, as indicated by measures of balance and postural weight distribution.”

Can exercise reverse the effects of CMT?

“The clinical literature indicates that regular exercise may slow the progression of the disease. There is no evidence that exercise can actually reverse disease progression.”

Is exercise painful for children with CMT?

“Many patients do not experience pain during activity or exercise, but in severe cases of CMT, patients may experience pain. If a person with CMT feels pain during exercise that goes beyond normal fatigue, he or she should consult with a doctor or physical therapist before continuing with that part of the exercise routine.”

What about children who have difficulty breathing?

“In severe cases of CMT, the phrenic nerve (the nerve that controls the diaphragm) may be affected. However, many muscles in the trunk and abdomen also participate in breathing. Targeting those muscles through exercise may compensate, in part, for diaphragm dysfunction.”

What types of exercise are recommended?

“We follow the principles of exercise prescription, which means using the science of exercise to design a program tailored to the individual. By identifying strengths and weaknesses, including any contraindications, we develop a program suited to the patient’s specific needs. For example: resistance training using machines for leg presses, curls, and extensions; and stationary rowers, bikes, recumbent bikes, and elliptical trainers for aerobic exercise.”

How do exercise and activity differ?

“Exercise is structured and supervised, with attention to positioning, breathing, and proper technique, with a specific goal in mind. Activity includes a psychological and social element, such as playing games during physical education.”

Tips for schools: adaptive physical education, field day, and recess

“The most important thing is for kids to be kids and to enjoy play. A child who has difficulty walking can focus on upper-body activities like throwing and catching, or races where players push on carts. Games should be adapted to be fun and inclusive. Teams of two can let the child with CMT bat while the other child runs bases. Relays can be done standing in place, passing items down the line. It is important to inform and regularly update PE teachers on how best to include children with CMT.”

How much exercise does a child need?

“The American College of Sports Medicine recommends 20 to 30 minutes of activity per day. It does not have to be 30 consecutive minutes. It can be broken into 10 or 15 minute sessions at a manageable intensity. The biggest challenge is making it fun. You have to find types of activity that are meaningful, effective, and enjoyable to the patient. Exercise games, videos, and active gaming platforms are great choices.”

What if a child or teen refuses to participate?

“You cannot force people to do what they do not want to do. You can say, ‘you have these challenges and we can help you,’ but the person has to be willing. Education is important. If you expose the child to a small element of exercise and show them the improvement, it can be very motivating. Sometimes it helps to say just try it for a month. Exercise helps prevent disuse atrophy (muscle wasting from inactivity), which is much more dramatic in patients with CMT.”

As Dr. Chetlin puts it: “Not an easy fix, but the RIGHT fix!”

For more information on living well with CMT, visit our patient resources page.