For individuals grappling with neuromuscular diseases, which often present limited treatment options, a recent study offers a beacon of hope. The research, published in the journal Neurology^®, suggests that a personalized exercise and coaching program can lead too tangible improvements in physical condition and overall well-being.

The study focused on individuals affected by various neuromuscular conditions characterized by muscle weakness and loss. These included muscle dystrophies, Post-Polio syndrome (a condition emerging decades after polio infection), and Charcot-Marie-Tooth disease, which impacts the nerves in the arms and legs.

“Physical inactivity is common in people with neuromuscular diseases, often due to symptoms such as muscle weakness, fatigue and pain.”

The research involved 91 participants, with an average age of 64, who were monitored over an 18-month period.

The participants were divided into two groups: one group of 44 people engaged in a six-month exercise and coaching program, while the other group of 47 people continued with their standard care and usual activities.

Those in the exercise program completed their sessions at home using a stationary bike. The majority of these sessions were conducted at a low intensity, with some at high intensity, guided by physiotherapists through in-person and telephone consultations. In addition to the exercise, participants received coaching aimed at maintaining motivation and activity levels. This included setting goals and receiving feedback on daily activity to facilitate the integration of physical activity into their daily routines.

To gauge physical fitness, all participants underwent a maximum effort exercise test to exhaustion on four occasions: at the beginning of the study, immediately after the exercise program, six months after the program’s conclusion, and again one year after the program ended. Physical fitness was persistent by measuring the amount of oxygen their bodies utilized during the maximum effort exercise. Higher oxygen levels indicate better physical fitness.Participants wore masks that measured airflow during breathing to determine oxygen levels.

Key Findings on Fitness and Neuromuscular Disease

The researchers found that immediately after the exercise program, the exercise group exhibited average oxygen levels of 2.2 ml/min/kg higher than the usual care group. This indicates that participants in the exercise group experienced an approximate 10% increase in physical fitness.

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

Throughout the study, the exercise group maintained average oxygen levels 1.7 ml/min/kg higher than the usual care group.

The incidence of adverse events, such as falls or pain, was similar between the two groups. The exercise group experienced 22 adverse events, while the usual care group experienced 25.

“Future research should examine how changes in fitness levels affect how people with neuromuscular diseases can carry out daily activities,” said Eric Voorn, PHD, amsterdam University Medical Center study author, Netherlands. “He should also seek ways to motivate people to continue exercising regularly in their daily life to ensure that the benefits of long -term treatments are maintained.”

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