In 2012, the ALS Therapy Development Institute (ALS TDI) shared a post, which can be found here, that discussed the potential benefits of exercise for people living with Amyotrophic Lateral Sclerosis (ALS). In the 8 years since then, more studies have been conducted to fully explore and better understand whether an exercise routine can provide any benefit to those living with ALS.
Please note that the study conclusions expressed in this piece do not represent the official opinion of the ALS Therapy Development Institute and should not be taken as medical advice. Please talk to your medical providers before beginning any form of exercise routine. If you are considering beginning a regimen and want to track your progression before and during, you can look into our Precision Medicine Program (PMP) here.
Exercise in Early Stage ALS – Studied with Limitations
In 2014 a study was published by Kamide et al (1) that was titled “Identification of the type of exercise therapy that affects functioning in patients with early stage Amyotrophic Lateral Sclerosis.” The study retrospectively collected data from medical records on 156 people with ALS who were prescribed exercise therapy by physical therapists between 2001 and 2011 at six institutions in Japan. Data including age, sex, site of onset and disease duration were collected along with ALSFRS-R scores at baseline and during exercise therapy.
The type of exercise therapy prescribed and number of visits to a physical therapist were also noted. The types of exercise therapies prescribed included stretching, resistance training, cycle ergometer training, standing training, walking training, activities of daily life (ADL) training and respiratory physical therapy.
Both resistance training and cycle ergometer training were found to have no effect on function in early stage ALS patients. No studies prior to this one had been reported on cycle ergometer training so results could not be compared, however two previous studies had investigated the effect of resistance training. The previous studies on resistance training found that it alleviated functional decline in early stage ALS patients. In the previous studies, participants with rapid disease progression were suspected to be withdrawn from the analysis whereas in the current study they were included. Because of this it appears that resistance training might not be generalizable to all people with ALS.
When prescribed together, ADL training and walking training appeared to significantly alleviate functional decline in participants. However the participants who did not carry out both were found to have a small functional decline. No explanation was found as to why this was.
The fact that the study relied on information collected from medical records from the past and did not have active participants was a major limitation that didn’t allow for bias to be controlled sufficiently. Both frequency and intensity of exercise sessions were not clearly regulated and could not be set to one standard across the board. Also, sufficient data on the use of Riluzole was unable to be collected to measure its impact. Taking this into consideration, the researchers still concluded that exercise therapy in which walking training and ADL training are combined alleviates functional decline for early-stage ALS patients.
Using Cardiopulmonary Exercise Testing (CPET) to Define Exercise
In January 2018, Braga et al (2) published a paper titled “The Role of Moderate Aerobic Exercise as Determined by Cardiopulmonary Exercise Testing in ALS”
Their study consisted of 48 people living with ALS split into two groups – 24 in the exercise group and 24 in the no exercise group. In the exercise group, Cardiopulmonary Exercise Testing (CPET) was used to determine the intensity at which each individual would exercise at, so as not to overexert the muscles.
The results of the study showed that a strictly monitored moderate exercise program may significantly reduce motor deterioration in people with ALS. At a checkup six months after the exercise sessions were completed it was found that the exercise group had a significantly higher ALSFRS-R spinal subscore and that the mean difference of functional decline expressed on the ALSFRS-Total score between groups also showed a small but positive effect favoring the exercise group.
This study did consist of a small sample size, which was acknowledged by the scientists. Despite this, they concluded that moderate exercise protocol with CPET evaluations can be safe and beneficial and should be considered in the multidisciplinary approach to ALS patients. When prescribed and supervised appropriately it can be physically and psychologically important for people with ALS, particularly those in the early stages of the disease before significant muscle atrophy has set in. Strengthening exercises with low to moderate weights and aerobic exercises such as swimming, walking and bicycling at submaximal levels may be important components of an overall management plan even if they might not improve the muscle strength of muscles already weakened by ALS.
Exercise Potentially Improving Quality of Life for People with ALS
Ferri et al (3) published a paper in 2019 titled “Tailored Exercise Training Counteracts Muscle Disuse and Attenuates Reductions in Physical Function in Individuals with Amyotrophic Lateral Sclerosis.” Their study consisted of 16 people with ALS – 8 in an exercise group (TRAIN) and 8 in a standard care group (UC). The exercise regimen consisted of three sessions a week for 12 weeks. Exercise consisted of cycling, strength exercises, proprioceptive exercises and upper/lower extremity stretching exercises. Intensity of exercise was adjusted to the individual.
Like Braga et al, this study conducted CPET at baseline and following the 12 week training program. On top of this the ALSFRS-R, ALS Severity Scale (ALS-SS) and McGill Quality of Life (QoL) questionnaire were also measured.
An already small sample size was made smaller as one participant dropped out of the TRAIN group prior to completing the full exercise regimen and four participants dropped out of the UC group prior to completion of the second CPET at 12 weeks. This left 11 total participants who completed the full study.
The results of the study showed that a combined moderate aerobic and strength training program was not only safe but also beneficial for physical function and aerobic fitness of the participants. There was a significant difference between the UC and Train groups with regards to their ALSFRS-R and ALS-SS scores. In the UC group ALSFRS-R scores decreased by 23.0 ± 5.6% and ALS-SS decreased by 12.4 ± 4.4%. Comparatively for the Train group, ALSFRS-R scores decreased by 4.7 ± 2.6% and ALS-SS scores decreased by 2.2 ± 2.1%.
At baseline QoL scores were not significantly different between Train (7.0 ± 1.1) and UC (8.0 ± 1.2) groups. However, following the exercise program, Train group scores maintained at 7.0 ± 0.8 while scores for the UC group declined to 5.5 ± 1.5.
Based on these results, which again came from a relatively small sample size, the researchers concluded that tailored moderate intensity exercise is likely not detrimental for people living with ALS and can counteract muscle disuse.
Do Potential Aerobic Exercise Therapy Benefits Apply to Everyone with ALS?
Another study, “Aerobic Exercise Therapy in Ambulatory Patients with ALS: A Randomized Controlled Trial,” was published by van Groenestijn et al (4) in 2019. This study was one part of a larger ALS related study, FACTS-2-ALS (5), which looked at the effects of Aerobic Exercise Therapy (AET) as well as Cognitive Behavioral Therapy on people with ALS.
For this study the AET consisted of three sessions a week – two at home and one conducted at a rehabilitation center or academic hospital supervised by specially trained intervention physiotherapists - for 16 weeks. The at home sessions consisted of individually tailored AET on a cycle ergometer or step board with intensity gradually increasing from 50% (moderate) to 75% (vigorous) heart rate reserve (HRR) and duration gradually increased from 20 to 35 minutes. The supervised sessions lasted one hour and consisted of individually tailored aerobic exercise training and muscle strengthening exercises.
There were 57 total participants split into two groups: 27 in the AET group and 30 in the Usual Care (UC) group. Demographic and clinical characteristics, including ALSFRS-R score, were collected at baseline, at the completion of the exercise program after four months (postintervention), at a three month follow up and again at a six month follow up. Only 10 participants from the AET group completed (attended at least 75% of classes) the full AET program and the subsequent follow ups. For the UC group, 22 participants completed the entirety of the study.
The participants who completed the full AET program were characterized by a relatively slow disease progression and a longer survival probability. In this subgroup the researchers did find significant effects on disease specific Health Related Quality of Life (HRQoL) and lung function (FVC) at the six month follow up. These findings support the idea that AET may have a potential protective effect among “slow progressors.”
However, because of the large number of participants who were unable or unwilling to complete the exercise program the researchers determined there was not enough significant evidence as to whether or not the AET was beneficial to people living with ALS. They therefore did not recommend making AET part of UC as it is not accessible to every person with ALS but they do recommend keeping an active lifestyle according to the World Health Organization (WHO) Global Recommendations on Physical Activity for Health.
Summary: Should Someone Diagnosed with ALS be Exercising?
These studies tend to agree that exercise is not detrimental to people living with ALS and may provide benefits. Nevertheless, limitations on these studies, such as small sample sizes or being retrospective, make it hard to determine whether this is generalizable across all people living with ALS.
(4) https://journals.sagepub.com/doi/full/10.1177/1545968319826051?url_ver=Z39.88- 2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed