Elisabeth Kilroy, PhD, is director of MDA’s neuroMuscular ObserVational Research (MOVR) Data Hub, which gathers medical and genetic data on several neuromuscular diseases to help researchers gain better understanding of the diseases and design effective clinical trials. She got into the field because her father, brother, and aunt are affected by an unknown type of muscular dystrophy.
“My brother asked me what exercise he could do to maintain his strength so he could play golf,” she says.
This is a common question among people living with neuromuscular diseases, who want to get the benefits of physical activity — better cardiovascular health, weight management, mood-boosting endorphins, and the camaraderie of sports — but are all too aware of the realities of living with a progressive muscle disease.
Dr. Kilroy attempted to answer her brother’s question in her doctoral dissertation. She studied zebrafish lacking dystrophin protein, which serve as an animal model for Duchenne muscular dystrophy (DMD), and applied neuromuscular electrical stimulation, which sends electrical impulses to nerves, causing muscles to contract.
“We found that high frequency and low voltage was very beneficial for muscle health,” she says. This implies that resistance training could improve muscle function for people with muscular dystrophies. The results were published in the journal eLife in 2022.
Research on Exercise
“Exercise with a neuromuscular disease is still a very gray area; not enough research has been done on it,” Dr. Kilroy says. Yet, the body of knowledge is growing.
In addition to Dr. Kilroy’s study on zebrafish, a study published in Muscle & Nerve in 2020 found that mild to moderate isometric leg exercises — exercises that involve holding a position for a period of time, such as a wall sit — are not only safe but improve muscle strength and functional ability in boys with DMD.
Similarly, published results from an MDA-supported study conducted at the University of Sydney, Australia, show that moderate-intensity resistance exercise not only is safe but can help significantly reduce the muscle weakness experienced by people with Charcot-Marie-Tooth disease (CMT).
In the study, which involved 60 children ages 6-17 with different types of CMT, participants completed an exercise regimen three times per week for six months using a weighted cuff for the foot (similar to an ankle weight). Researchers found that after six months the progression of muscle weakness was up to 30% slower in the study participants compared to people with CMT who did not exercise. The regimen also strengthened the muscles over a two-year period for those who continued the exercises on their own.
People with neuromuscular diseases should talk to their doctors before beginning an exercise program, because an individual’s exercise needs and tolerance will vary based on their neuromuscular condition and other factors.“Always start slow and see how your body responds,” Dr. Kilroy cautions.
Author Larry Luxner (Muscular Dystrophy Association; MDA)
For more information about exercise and CMT check out TIN’S research article; “Physical Exercise as a Possible Therapy for CMT1X” Physical Exercise as a possible Therapy for CMT1X | Therapies for Inherited Neuropathies (tin-us.org)