Personalized exercise and coaching could improve health of people with neuromuscular diseases

While many people with neuromuscular diseases currently face a future without a cure, a new study finds that a personalized exercise and coaching program could improve their fitness and overall health. The study is published on June 4, 2025, online in Neurology^®, the medical journal of the American Academy of Neurology.

The study looked at people with a variety of neuromuscular diseases that cause muscle weakness and loss, including muscular dystrophies; post-polio syndrome, a condition that appears decades after a polio infection; and Charcot-Marie-Tooth disease, which affects nerves in the arms and legs.

Physical inactivity is common among people with neuromuscular diseases, often due to symptoms such as muscle weakness, fatigue and pain. Our study found that personalized home-based aerobic exercise combined with coaching is a safe and effective way to improve physical fitness in people with these diseases."

Eric Voorn, PhD, study author of Amsterdam University Medical Center, Netherlands

The study involved 91 people with an average age of 64 who were followed over 18 months.

They were divided into two groups: 44 people who underwent the six-month exercise and coaching program and 47 people who simply continued with usual care for their disease and their usual activities.

Participants in the exercise program completed workouts at home using a stationary bike. Most workouts were done at low intensity and some at high intensity with help from physical therapists through face-to-face and phone sessions. Alongside the exercise, they received coaching to stay motivated and active, including goal setting and feedback on daily activity, with the goal of making it easier to integrate physical activity into daily life.

All participants completed a maximum effort exercise test until exhaustion at four time points to measure physical fitness: at the start of the study; right after exercise program; six months after the program ended; and then again one year after the program ended. Physical fitness was determined by how much oxygen their bodies used during maximum effort exercise. Higher oxygen levels reflect higher physical fitness. Participants wore masks that measure airflow during breathing to determine oxygen levels.

Researchers found that immediately after the exercise program, the exercise group had average oxygen levels 2.2 ml/min/kg higher than the usual care group. This shows that the people in the exercise group had about a 10% increase in physical fitness.

One year after the program, the exercise group had average levels of 23.9 ml/min/kg respectively compared to 20.9 ml/min/kg respectively in the usual care group.

Over the entire study, the exercise group had average oxygen levels 1.7 ml/min/kg higher than the usual care group.

The number of adverse events like falls or pain was similar between the two groups. The exercise group experienced 22 adverse events compared to 25 adverse events in the usual care group.

"Future research should look at how changes in fitness levels affect how well people with neuromuscular diseases can do everyday activities," said Voorn. "It should also look at ways to motivate people to keep exercising regularly in their daily lives to make sure the benefits of long-term treatments are maintained."

A limitation of the study was that the COVID-19 pandemic caused changes in participants' physical activity due to the closure of gyms and sports facilities.

The study was supported by the Prinses Beatrix Spierfonds.