Physical activity in patients with amyotrophic lateral sclerosis: Prevalence, patients' perspectives and relation to the motor performance

Background: There are no recommendations for physical activity in amyotrophic lateral sclerosis (ALS) patients.

Objective: (i) To describe the prevalence and pattern of physical activity (PA) in ALS patients; (ii) to explore patients' attitude towards PA; and (iii) to investigate the relationship between PA at home environment and the rate of functional decline.

Methods: 96 ALS patients were followed for 6 months at 3-month intervals and assessed by site of disease onset, disease duration, diagnosis delay, functional status, muscle strength, fatigue and prevalence of PA.

Results: Over 70% of patients performed regular exercise and reported a positive effect of PA on functional status and mood. Regularly exercising individuals showed a higher ALSFRS-R bulbar score (11.0 vs 9.0, p = 0.011) and a lower decline of respiratory sub-score of ALSFRS-R compared to non-regularly exercising patients (0 vs 1.0, p = 0.026). Bulbar onset was a negative prognostic factor for regular exercise (odds ratio [OR]: 5.2, p = 0.004).

Conclusion: The majority of ALS patients perform regular PA and find it positively influence their motor performance and mood. Bulbar disease onset, but not functional status, is a negative prognostic factor for regular exercise in ALS patients. Regular mild PA may result in a slower deterioration of functional status, especially the respiratory function.