A new study shows that a personalized exercise and coaching program can improve fitness and overall health in people with neuromuscular diseases. These diseases, which cause muscle weakness and loss, currently have no cure for most patients. The study was published online on June 4, 2025, in Neurology®, the journal of the American Academy of Neurology.
The researchers studied people with different neuromuscular conditions. These included muscular dystrophies, post-polio syndrome (which appears years after polio infection), and Charcot-Marie-Tooth disease (which affects nerves in the arms and legs).
Many people with these diseases are physically inactive. This is often due to symptoms like muscle weakness, fatigue, and pain. Eric Voorn, PhD, the study’s lead author from Amsterdam University Medical Center in the Netherlands, said, “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.”
The study followed 91 participants, whose average age was 64, over 18 months. They were split into two groups. One group of 44 people took part in a six-month exercise and coaching program. The other group of 47 people continued their usual care and activities without the program.
Participants in the exercise group worked out at home on stationary bikes. Most workouts were low intensity, while some were high intensity. Physical therapists helped the participants through in-person and phone sessions. Along with exercise, participants received coaching to keep them motivated. This included setting goals and getting feedback on their daily activity. The aim was to help participants make exercise a regular part of their daily lives.
To measure fitness, all participants performed a maximum effort exercise test four times: at the start, immediately after the program, six months later, and one year later. The test measured how much oxygen their bodies used during exercise. Higher oxygen use means better physical fitness. Participants wore masks to measure airflow and oxygen levels during the tests.
The results showed that right after the program, the exercise group had oxygen levels 2.2 ml/min/kg higher than the usual care group. This means their physical fitness increased by about 10%. One year after the program, the exercise group still had higher oxygen levels (23.9 ml/min/kg) compared to the usual care group (20.9 ml/min/kg).
Throughout the study, the exercise group had average oxygen levels 1.7 ml/min/kg higher than the usual care group.
Both groups had a similar number of adverse events, like falls or pain. The exercise group had 22 adverse events, while the usual care group had 25.
Voorn said future research should study how improved fitness affects everyday activities for people with neuromuscular diseases. He also suggested looking for ways to encourage people to keep exercising regularly, so they maintain long-term benefits.
One limitation of the study was the COVID-19 pandemic. Restrictions led to changes in participants’ physical activity because gyms and sports facilities were closed.
The study was funded by the Prinses Beatrix Spierfonds.
Related Topics
