In 2010, the American College of Sports Medicine hosted the First World Congress for the “Exercise Is Medicine” (EIM) initiative in Baltimore, Maryland. The EIM enterprise is dedicated to improving health, wellness, and quality of life through regular physical activity and healthy behaviors. Together with the Physical Activity Guidelines for Americans published by the U.S. Department of Health and Human Services, EIM promotes scientifically-based activity guidelines to support the health benefits of exercise for all Americans, including people living with chronic disabilities. The clinical aim of EIM is to incorporate activity assessment and exercise prescription, where appropriate, as a standard part of disease prevention and treatment. These principles apply directly to patients with Charcot-Marie-Tooth disease (CMT).

A growing body of clinical and scientific evidence shows that exercise and activity, where not contraindicated, is safe and effective for children and adults with chronic conditions such as CMT. Organizations including the American Medical Association, the American College of Sports Medicine, the U.S. Department of Health and Human Services, and the Office of the U.S. Surgeon General all agree that people with chronic disease and disability who are capable of doing so should engage in regular physical activity.

The following frequently asked questions address physical exercise and activity for patients with CMT.

Who should exercise?

Children and adults who are able to do so should participate in regular physical activity and exercise.

How much exercise and what types are appropriate?

For children

Children with CMT should participate in aerobic, muscle-strengthening, bone-strengthening, and balance activities, aiming for about one hour of activity per day. This should include at least three days of moderately vigorous, varied activity that is fun, age-appropriate, and not contraindicated for the individual child’s medical circumstances.

Because CMT is both a motor and sensory neuropathy (affecting movement and sensation), it is important to account for individual limitations to minimize injury risk. In most cases, motor control and sensory awareness at the ankle and foot are impaired. Activities involving running, jumping, or other movements where the feet repeatedly leave the ground may not be safe for all children.

Recommended alternatives include:

  • Bicycle riding (particularly tandem riding, with the child at the front and a parent or adult at the back)
  • Catching and throwing games
  • Swimming
  • Resistance exercises (using bodyweight, exercise bands, machines, or hand-held weights)
  • Active video games (such as those on Wii, PlayStation, or Xbox)
  • Certain martial arts, such as tai chi

Children with CMT should also be encouraged to participate in appropriate forms of play. If braces or other orthopedic supports have been prescribed, these should be worn during exercise and activity where possible.

For adults

Adults with CMT should also engage in aerobic, muscle-strengthening, bone-strengthening, and appropriate balance training. Ideally, adults should aim for about 150 minutes of total aerobic activity per week, in moderate to moderately vigorous bouts of at least 10 minutes, spread throughout the week. Muscle and bone-strengthening activities, especially those involving multiple major muscle groups, should be done at least two days per week. Where significant motor and sensory impairment of the ankle and foot is present, activities that require the feet to leave the ground should be avoided.

Recommended lower-impact options include:

  • Riding or rowing exercise (stationary bike, tandem bike, recumbent bike, elliptical machines, rowing machines)
  • Swimming
  • Water aerobics
  • Vigorous gardening (with components such as digging and lifting)
  • Household chores (such as sweeping, laundry, and putting away groceries)
  • Resistance exercises (with bands, machines, dumbbells, or bodyweight)
  • Yoga
  • Tai chi

While 150 minutes per week is the general recommendation, adult CMT patients should avoid prolonged inactivity. Some physical activity is always better than none. Prescribed braces or other orthopedic supports should be worn during exercise and activity where possible.

Why does exercise matter for people with CMT?

For children with CMT, regular activity and play supports normal physical and psychosocial development. Some clinical evidence suggests that early intervention may help slow the disease process, potentially contributing to higher levels of function and quality of life into adulthood. Active children are also less likely to develop complications associated with inactivity, including obesity, heart disease, and type 2 diabetes.

For adults with CMT, regular exercise and activity may improve or at least maintain functional ability, independence, and quality of life. As with older adults generally, staying active helps preserve muscle mass and bone health, reduces the risk of falls, and lowers the risk of conditions associated with inactivity.

Who else should be involved?

Healthcare providers and appropriately trained and credentialed exercise professionals should always be consulted regarding individualized exercise and activity programs for CMT patients, including assessment, evaluation, and program design.

For children with CMT, teachers and school administrators should make reasonable accommodations to support regular physical activity. Parents should ensure that school systems comply with the Americans with Disabilities Act and provide CMT children with the opportunity to engage in healthy development.

The EIM model has been endorsed by multiple medical and healthcare agencies worldwide. For more information, visit ExerciseIsMedicine.org.

By Robert D. Chetlin, PhD, CSCS, CHFS, West Virginia University School of Medicine, Morgantown, WV. Dr. Chetlin is an Exercise Physiologist and member of the OT faculty. He holds professional accreditation as a Health and Fitness Instructor through the American College of Sports Medicine and as a Certified Strength and Conditioning Specialist through the National Strength and Conditioning Association. His research focuses on the effects of nutritional supplementation and exercise training in patients with neuromuscular diseases. In 2004, Dr. Chetlin received the Charcot-Marie-Tooth Foundation Award for Distinguished Service.