Exercise Programs for People with ALS Found Safe and Tolerable

When first diagnosed with ALS, one of the first questions people ask is whether it is OK to continue exercising. A recently completed ALS Association funded study by Dr. Nicholas Maragakis of Johns Hopkins University and team set out to help answer this common question by exploring the possible benefits of exercise for people living with ALS. They found that stretching, resistance, and endurance exercise are all safe and tolerable to perform with a specified program. Exercise did not worsen outcomes related to ALS disease. The article was published in journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

Why exercise?

In healthy people, it is known that performing a routine exercise program has many health benefits and increases muscle strength and flexibility. Many people living with ALS struggle to understand whether it is OK to exercise, what kind of exercise is most beneficial, and whether exercise slows disease progression. Studies in ALS mice, along with numerous small studies and case reports in people living with ALS, have suggested potential benefits from exercise.

The study

A large, randomized, controlled study evaluating the potential benefits of endurance exercise and resistance in ALS has never been done before. Dr. Maragakis and team undertook this challenge. They used a Resistance, Endurance, or Stretching/Range of Motion (SROM) program, an exercise program previously prescribed for many people living with ALS to evaluate the safety and tolerability of resistance and endurance in ALS participants. The study ran over a 24-week period with testing completed at the 12-week and 24-week time points.

All exercises were performed at home with individualized programs designed by a physical therapist trained in ALS. Fifty-nine people with ALS were randomized into the following groups: stretching (n=21); resistance (n=18); and endurance (n=20). Stretching was done passively with the help of a partner. Endurance exercise was carried out using a minicycle that could be used from a sitting position as a leg exercise or on the tabletop as an arm exercise. Resistance exercise used weights based on a participant’s one repetition maximum.

The study explored both safety and efficacy measures. Primary outcomes were tolerability of the exercises for a 24-week period and defined by 50% of participants completing at least 50% of the prescribed exercise program. Secondary outcomes included ALS Functional Rating Scale – Revised (ALSFRS-R), pulmonary forced vital capacity (FVC), and other measures of ALS function.

The results

All three exercise programs were well tolerated and found safe at the 12-week and 24-week benchmarks. There were no differences in the rates of disease progression between groups or differences found in any of the above secondary outcome measures. Compliance for the programs were good, showing approximately 60% compliant. The SROM and resistance groups demonstrated the highest compliance with approximately 74% and 63% compliance, respectively. The most common adverse events were falling and muscle spasms. In a post-hoc analysis, participants in the endurance and SROM groups showed a trend toward fewer falls.

Conclusion

Together, this study demonstrated that all three exercise programs, SROM, resistance, and endurance, were are all safe and tolerable to perform using a prescribed regimen without any worsening of outcomes stemming from ALS disease. This study will allow for those prescribed ALS exercise programs to continue to be incorporated into patient care management plans and will help clinicians answer patient questions about exercise.

This study was funded by The ALS Association.

Paper citation – this paper is not open-access

A randomized controlled trial of resistance and endurance exercise in amyotrophic lateral sclerosis

Lora L. Clawson,Merit Cudkowicz,Lisa Krivickas,Benjamin R. Brooks,Mohammed Sanjak,Peggy Allred,Nazem Atassi,AMY Swartz,Gabrielle Steinhorn,Alpa Uchil,Kristen M. Riley,Hong Yu,David A. Schoenfeld &Nicholas J. Maragakis

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Pages 1-9 | Received 14 Jun 2017, Accepted 01 Nov 2017, Published online: 30 Nov 2017

Link: https://doi.org/10.1080/21678421.2017.1404108

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One thought on “Exercise Programs for People with ALS Found Safe and Tolerable”

  1. My husband Chaim R. was diagnosed in June 2012 and was completely paralyzed and on a respirator by less than a year later. From day one he had requested that we do range of motion exercises with him every 3 hours, push his legs to ride on a bike for 1/2 hr from his wheelchair, and 3 years later, with coaching from Project Walk in California, we started him standing up with a specialized machine for one hour a day, which he had requested originally, but until then we did not know how to do it.. To this day, more than 6 years have passed, we almost have not missed a day of his routine. He does not look like he has ALS, other than he is not moving on his own. He has color in his cheeks, well formed muscles in his legs, full flexibility from his head to his toes. He has never had a lung infection, has excellent blood pressure readings, and fights off viruses and other infections like any regular guy. Exercise is medicine. And he is still going strong in October 2018!

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