A qualitative investigation of exercising with MS and the impact on the spousal relationship

Research has only recently started to explore the psycho-social impact of exercise for those with MS [14]. With the physical benefits now increasingly accepted and guidelines established [9], researchers have turned to examining both the multiple benefits and barriers as they pertain to various forms of physical activity for people with MS [14, 15, 31, 32]. Our results support and expand upon those findings, particularly with respect to inclusion of the perspectives of spouses. Specifically, all of the participants with MS found great physical benefits to exercise. One of our participants noted that he was growing increasingly reliant on a wheelchair prior to starting in his current exercise program, but he no longer requires one. Others described improvements that were slightly less dramatic, such as regaining the ability to do household chores, or visit with friends, but were nevertheless important advances to their physical functioning and quality of life.

The psychological benefits were also evident, and often emphasized by the spouses, with comments such as ‘he comes home happier’ and ‘he feels better about himself’. Intertwined with the psychological component was the social interaction, which constituted a third major benefit. This was clearly a meaningful aspect of exercise for our participants who were exercising in a group setting, all of whom indicated that they would find it exceedingly difficult to exercise on their own. This emerged as a notable variable in our findings; those involved in the group program emphasized the social component, while the participants who exercised on their own reported more difficulty in maintaining a regular exercise schedule. Borkoles and colleagues described similar sentiments in their interviewees, who remarked that the social element made exercise more enjoyable, and lessened their feelings of isolation [14]. We remain cautious about our findings, however, given that the three oldest participants were partaking in the group exercise program and thus the potential exists for an associated age confound. Further exploration of group-based exercise, and any additional benefits derived from such programs over exercising on one’s own, is a potentially valuable avenue for future research.

The barriers to exercise noted by our participants supported and reinforced those expressed in recent studies. Managing energy and minimizing fatigue has been consistently mentioned as a barrier to exercise for those with MS [14, 15, 32,] and conflicting beliefs about the value and benefits of exercise caused tension and uncertainty about involvement [32]. Certainly the concern that energy was limited, and thus a valuable resource important to conserve, emerged in our interviews. There was a distinct sense of opportunity cost that participants expressed due to the fear of not having enough energy post-workout to function in any sort of meaningful way in other aspects of their lives. The choices expressed by participants and their spouses were sometimes as stark as going to the gym to work out or using that energy to ‘pick my kid up after school and walk them to the park?’ Emerging evidence, however, emphasizes the positive benefits that can be derived from regular involvement in physical activity. Research advocating exercise for people with MS started to accumulate the 1990s [8] and that momentum has continued to build over the subsequent two decades. Recent reviews of the literature (e.g., [10, 13]) have clearly articulated the benefits of exercise to improve physical function and manage symptoms most closely associated with the disease. The evidenced-based guidelines developed by Latimer and colleagues [9] provide specific exercise recommendations for individuals with MS, and may help to alleviate concerns related to physical activity involvement.

Our research did not focus on sedentary individuals, nor individuals who had been exercising previously and then stopped. Future studies that gain insight into the opportunities for people with MS to partake in exercise, and the process by which individuals initiate and maintain involvement in physical activity would prove valuable. Importantly, issues related to accessibility remain a significant barrier to engagement in exercise. Transportation to an exercise venue and parking once there are potential impediments to physical activity, made worse by inclement weather. One of our participants mentioned the use of an ‘access bus’, which needed to be booked two weeks in advance, but due to irregular pick up and drop off times, ‘the fitness thing could end up taking five hours’. Learmonth and colleagues noted that their participants cited transportation as an important issue, whether they were relying on their own, or public transport [15]. For those living in rural communities, this becomes increasingly problematic. Home-based exercise provides one solution to transportation issues, but at the cost of the social component [14] and potentially an aspect of supervision, professional or otherwise, during workouts.

Our findings were enriched by the inclusion of interviews with the spouses, done separately from their partner with MS, and a virtually unexamined component of the exercise/MS experience. These interviews provided a fuller, more holistic picture of living with MS, and the extent to which exercise can be beneficial to the lives of both partners. What became clear was the potential for the spouse to play a facilitating role. This could come in multiple forms, such as support and encouragement to partake in physical activity, conquering accessibility barriers by aiding with transportation, or actually attending a gym or exercise class with their partner. One partner noted that she was ‘not sure that (Ben) would get up at 6:30 on his own twice a week if I weren’t going with him’.

The payoff to such facilitation appears to be significant. One of the major issues to emerge in previous research is the notion of independence, and concerns with maintaining that to the greatest extent possible in the face of the disease [13]. Exercise had a profound effect on the maintenance of independence with our study participants. The improving physical function allowed greater mobility around the home, and greater ability to contribute to various household tasks. It also allowed for greater independence of the spouse, by reducing the care-giving responsibilities, and by allowing them to go out without worrying whether their partner could fend for themselves alone in the home. Not surprisingly, MS can cause strain in a relationship, to the point where “supporting MS couples as they adapt to role changes and helping couples avoid relational strain is a stated MS research agenda item” [16]. Our findings suggest that exercise may play an integral part in maintaining independence and reducing strain on the relationship.