At the beginning of this series, the Physical Activity, Creativity, and Evaluation (PACE) model was used to frame parameters by which someone with multiple sclerosis (MS) could navigate a physical and health culture based on able-bodied scripts of what it means to move competently and create opportunities for exercise. In other words, medical evidence and exercise physiology advice were shared to assist someone with this disease in capturing the benefits of an active lifestyle, while preventing the secondary disabling conditions that come with being inactive. In the first two articles (PALAESTRA, 21(3), 26-29; 60; PALAESTRA, 21(4), 28-35; 43) the focus was on the nature of the disease itself, treatment protocols, benefits of exercise, physical activity options, and contraindications. This article focuses on the stress response and aspects of initiating, sustaining, and then ammending physical activity patterns as the disease changes and progresses.
I began writing this article from my hospital bed while undergoing my eighth Solumederol (steroid) IV treatment. After living well for much of the past 10 years with MS, I was struck once again by the lack of control experienced, not just when losing sight, falling, or running into walls, but the lack of control felt in a hospital environment. Although I had been through this ritual before, I was immediately quieted and constrained by the surroundings. Typically, the medical environment is viewed as a rehabilitative environment, but it was not until I was being interviewed by the in-take nurse that I realized the extent to which health practitioners are focused on re-establishing some semblance of normalcy. They endeavored to counter the awkwardness, fear, sadness, and anger I was feeling about the way I was or was not moving. The most important question I was asked by the nurse practitioner was whether or not I had any coping strategies. I responded with an affirmative answer; however, it took me two or three days before I could admit to myself that my coping strategies needed to be re-examined and re-evaluated in order to respond better to my current exacerbation. I needed to think once more about the level at which I could be physically active, the way I wished to engage the physical environment, my need to be creative in the decisions I make, and the daily and sometimes hourly evaluation of my body's needs. I needed to PACE myself once again--all over again.
Unpredictable Nature of Multiple Sclerosis and Associated Stress
As reported in the first and second articles in this series, MS is an unpredictable inflammatory autoimmune disorder of the central nervous system. According to Compston and Coles (2002), the disorder is of unidentifiable origin, but the clinical course of the disease is often characterized by episodes of exacerbation and recovery and episodes leaving persistent deficits. These authors point out there is no evidence trauma causes MS, triggers latent disease in someone who has the underlying disease process, or alters the course in individuals who have already experienced symptoms. They do state in the same article, however, that "people with MS cope less well with symptoms while exposed to stress, but psychological factors do not directly affect disease activity." (Compston & Coles, p. 1224)
In 2005, Brown, Tennant, Dunn, and Pollard reviewed results of research discussing the stress-relapse interaction in MS. They noted that the nature and strength of interrelationships between life stress and disease activity are complex; however, they concluded that the impact stress may have on disease activity is likely to depend on factors such as stressor frequency, severity and type, and individual characteristics such as depression, health locus of control, and coping strategies in use. In 2001, Mohr and Cox published a review of empirical literature related to the psychological response to multiple sclerosis and particularly studies completed at that point on chronic and acute stress. In this review the authors noted that the data suggested different types of stress might have differential effects. In particular, the authors found in their lab-based research that increased stress due to increased chronic conflict and disruption in routine predicted lesion-level activity. They found no affect on lesion-level activity for acute life stressors (Mohr, 2000).
Exercise and the Stress Response
Symptom change at the onset of an exercise program is not uncommon. Research in this area continues to show that although many have a temporary increase in sensory symptoms immediately post-exercise, these symptoms are unlikely to cause any deleterious change in fatigue or function (Smith, Grandip, Fulcher, & Longley, 2006). In exchange for a brief period of increased sensory symptoms, individuals with MS benefit from increasing the body's ability to resolve the impact chronic stress has on the body. Many are aware of the flight or fight response in the body, also known as the stress response. It is what the body does when it prepares to confront or avoid danger. The heart rate increases, blood pressure increases, muscles contract, and sensory systems are heightened (vision, kinesthetic, and auditory). It allows the body to prepare for and perform in a challenging situation.
Cortisol is a hormone released by the adrenal glands and used by the body to engage the stress response. Small increases in cortisol have some positive effects, such as a quick burst of energy, heightened memory functions, a quick state of increased immunity, lower sensitivity to pain, and in the maintenance of homeostasis in the body. On the other hand, higher and more prolonged levels of cortisol in the bloodstream associated with chronic stress have been shown to have negative effects, such as impaired cognitive performance, suppressed thyroid function, blood sugar imbalances, decreased bone density, higher blood pressure, and lowered immunity and inflammatory responses in the body. In order to keep cortisol levels healthy and under control, the body's relaxation response should be activated after the fight or flight syndrome is activated (Powers, Dodd, & Noland, 2005).
A recent study by Mohr and Pelletier (2006) presented a temporal model to assess the impact stress has on inflammation in individuals with multiple sclerosis. Of specific importance to this topic are the temporal relationships and mechanisms by which stress may impact MS exacerbation. They indicate that the resolution of a stressor, which may be mediated by a drop in cortisol, is possibly associated with changing the experience of stress and the associated development of brain lesions in people with MS (Mohr & Pelletier, 2006).
In addition to improving general health, as addressed in the earlier articles, exercise can be very helpful in relaxing the body and the mind, thus changing the perception of stressors and aiding the body in maintaining healthy cortisol levels. Other common interventions and effective means by which to move the body through the stress response are through autogenic training techniques such as deep breathing and meditation (Sutherland, Andersen & Morris, 2005). In addition, supported by both research and anecdotal evidence, laughter is known to assist in the reduction of cortisol serum levels in the body and to improve the feeling of general well being (Wooten, 1996).
Creating Opportunities for New Activity and Exercise
As stated earlier, current research supports the use of physical activity and exercise as effective means for people with MS to prevent secondary disabling conditions (e.g., heart disease) and to prolong periods of general good health (Shulz, Gold, Witte, Bartsch, Lang, Hellweg, Reer, Braumann, & Heesen, 2004) As physical activity professionals and researchers, we know the emotional and psychological well-being in people with and without disabilities can be improved through regular exercise and meaningful physical activity. Recently, a longitudinal qualitative and descriptive study supported earlier statements supporting exercise as an important component of healthy living (Stuifbergen, Blozis, Harrison, & Beckery, 2006). Over a five-year period, these authors explored the trajectories of functional limitations, health behaviors, and quality of life in a sample of 611 individuals with MS and found that exercise has a potential long-term, positive impact on the progression of functional limitations and quality of life.
As individuals with MS, we sometimes respond to and evaluate our bodies on a daily basis. Deliberately measuring our levels of energy and our kinesthetic abilities before moving freely or participating in the physical domain is not uncommon for people living with MS. Physical educators teach us to move competently and, therefore, learn through the physical. However, the environment in which one moves is usually relatively static, and learning the skills to move competently in ever-changing conditions and adapting activity to meet those conditions is an on-going process for those of us with neurological impairment.
Individuals with MS often find themselves moving along gracefully, whether it be upright or when using a wheelchair, and then suddenly unable to maintain the energy levels of their peers, family, or friends, or participate consistently in recreational or other active pursuits. Community exercise programs similar to the MS Exercise Program at Oregon State University, Corvallis, can assist individuals with obtaining the instruction and encouragement to initiate and sustain an exercise protocol. Group camaraderie, evidenced by the photographs of participants in the program accompanying this article, is also of great value. This program provides quality, supportive, and individualized exercise instruction for persons with multiple sclerosis. Individualized exercise programs are developed based on the participant's interests, abilities, and needs as evident by initial analyses and referral information. Dr. Jeff McCubbin is director of the program, and adapted physical activity graduate students such as Marquell Johnson (who is qualified and also pictured with the participants) facilitate much of the training delivery.
From a behavioral standpoint, these sorts of programs follow the American College of Sports Medicine (ACSM) practical recommendations to enhance exercise adherence. Positive forces or variables greatly impacting exercise adherence are: qualified instruction, regular routine, freedom from injury, enjoyment and fun, variety, group support, progress testing and recording, and spouse and peer approval (ACSM, 2000). Having access to health information assists individuals in managing their health identities and in turn may allow a person with MS or other chronic illnesses to make sense of his or her illness experience (Cline & Hayes, 2001; Russell, White & White, 2006). Making meaning of one's experience with MS and creating a personal narrative that includes exercise and physical activity in a group setting may provide the social support, fun, and laughter often needed when facing the unpredictable nature of MS.
A study using qualitative methods (Guthrie, 2001) examined the way in which women with disabilities came to terms with their disabilities through participation in sport and exercise while living in a culture that reproduces largely able-bodied scripts. Results indicated many of the participants managed their disabilities through physical activity in one of three ways--through minimizing significance of the body, through normalization of the body, and through optimizing mind-body functioning.
In another recent study (Russell, White, & White, 2006), qualitative and cross-sectional data on the perception of illness experience were collected from a sample of 146 individuals with MS in the Midwestern region of the United States. After a very thorough literature review, the authors presented examples of ways personal meaning-making and well-being are related. "Making personal meaning of an illness that is painful and unpredictable may enhance the likelihood that patients will actively participate in health-promoting behaviors." (p. 77) Of the participants in this study, the researchers found those rated as most involved in a personal meaning-making process had significantly higher scores on quality of life measures and life satisfaction measures.
As noted in the beginning of this article, the first few pages were written from a hospital bed, and I was unaware of the outcomes my current MS exacerbation might present. Coping strategies and my own personal resources were again in need of reevaluation. In speaking with the medical community throughout these last few weeks, it became very clear that I would be changing some aspects of my daily life to meet the demands of the disease. For instance, I might need to live in a home that provides one-level access. What was not so clear were the changes I would have to make to my narrative or perceptions of healthy living and adjustments to my attempts at continually moving toward wellness--both physically and emotionally. Gardening and walking long ago replaced running and competitive sports in terms of meeting my need to move cortisol through my system in order to take advantage of the beneficial aspects of the stress response and end up relaxed rather than exhausted. Kayaking and sit skiing are on my must-try agenda now. Creative physical activity invoking a better response to the exhaustive components of chronic stress may improve the general physical health of those of us who have MS; and like the participants in the Oregon State University MS weight training program, we get by with a little help from our friends.
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Brown, R.F., Tennant, C.C., Dunn, S.M., & Pollard, J.D. (2005). A review of stress--relapse interactions in Multiple Sclerosis: Important features and stress-mediating and--moderating variables. Multiple Sclerosis, 11 (4), 477-484.
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Compston, A., & Coles, A. (2002). Multiple Sclerosis. The Lancet, 359, 1221-31 Guthrie, S.R. (2001). Disability management among women with physical impairments: The contribution of physical activity. Sociology of Sport Journal, 18(1), 5-20.
Mohr, D.C., & Pelletier, (2006). A temporal framework for understanding the effects of stressful life events on inflammation in patients with Multiple Sclerosis. Brain, Behavior, and Immunity, 20 (1), 27-36.
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Powers, S. K., Dodd, S. L., & Noland, V. J. (2005). Total fitness and wellness. San Francisco, CA: Pearson Benjamin Cummings.
Russell, C. S., White, M. B., & White, C. P. (2006). Why me? Why now? Why Multiple Sclerosis?: Making meaning and perceived quality of life in a Midwestem sample of patients with Multiple Sclerosis. Families, Systems, & Health, 24(1), 65-81.
Shulz, K.H., Gold, S.M, Witte, J., Bartsch, K. Lang U.E., Hellweg, R, Reer, R, Bauman, K. M., & Heese C. (2004). Impact of aerobic training on immune-endocrine parameters, nerotrophic factors, quality of life and coordinative function in Multiple Sclerosis. Journal of Neurological Sciences, 225(1-2), 11-18.
Smith, R. M., Grandip, M. A., Fulcher, G., & Longley, W.A. (2006). Symptom change with exercise is a temporary phenomenon for people with multiple sclerosis, Archives of Physical Medicine and Rehabilitation, 87(5), 723-727.
Stuifbergen, A. K., Blozis, S. A., Harrison, T. C., & Becker, H.A. (2006). Exercise, functional limitations, and quality of life: A longitudinal study of persons with Multiple Sclerosis. Archives of Physical Medicine and Rehabilitation, 87(7), 935-943.
Sutherland, G., Andersen, M. B., & Morris, T. (2005), Relaxation and health-related quality of life in Multiple Sclerosis: The example of autogenic training. Journal of Behavioral Medicine, 28(3), 249-256.
Wooten, P. (1996). Humor: An antidote for stress. Holistic Nursing Practice, 10(2), 49-58.
Lisa Olenik is Chairperson, Department of Sport Management and Physical Education at Endicott College in Beverly, MA. She is an adjunct professor in the MET College at Boston University. She has had extensive involvement in the field of adapted physical activity, and, coupled with her current condition of MS, can, therefore, write first-hand about MS and exercise in this series.…