Negotiating a Progress Paradox: the Value of Exercise for People Living with Amyotrophic Lateral Sclerosis

Abstract

Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neuromuscular disease that leads to the paralysis of voluntary muscles used for walking, talking, eating and breathing. There is no cure for ALS and current treatments, including exercise therapies, are extremely limited (Kiernan et al., 2011). The first of two studies presented herein aimed to examine the tolerance and training effects of modified sprint interval training (SIT) for people with ALS. Despite an available population and persistent efforts, one participant completed the training study over eighteen months. For this individual, SIT was well tolerated acutely and chronically, and functional capacity and aerobic fitness were unchanged following six weeks of home-based SIT training. The inability to recruit sufficient participants for this intervention trial called into question how individuals living with ALS negotiate exercise and barriers to participation. A second study guided by interpretive phenomenology used in-depth interviews to better understand how everyday experiences of living with ALS impact the ways individuals with ALS engaged with physical activity and exercise. From the subjective accounts of seven men and women living with ALS in Southeastern Ontario, three major themes were identified: 1) living in a changing body, 2) environmental access and 3) the (f)utility of exercise, which speak to the complex process of negotiating the value of exercise for a body that is progressively and incurably deteriorating. Findings suggest there is immense variability and individuality amongst people with ALS and their experiences and attitudes towards physical activity and exercise. Numerous physical, psychological and environmental barriers were also found to be common to people with ALS and may serve as targets to be addressed by future customized exercise interventions.