Health, Lifestyle and Aging with Multiple Sclerosis: Building an Evidence-Based Self-Management Program
Multiple Sclerosis (MS) is the most common neurological disease affecting young adults in Canada. MS is characterized by a slow worsening of balance and coordination, paralysis, fatigue, pain, and other neurological symptoms and presently there is no cure. Although it is most often diagnosed between the ages of 15 and 40, people with MS live well into their seventies, most with significant disability. In Multiple Sclerosis clinics, one of the most important questions patients ask is, "What should I expect in the future and how will the disease progress?" Although research is growing suggesting that nutrition, exercise and social engagement increase the likelihood of ageing well, we do not know what people with MS can do to increase their likelihood of living long and healthy with their disease.
This study builds on our pilot work in older people with MS. These individuals have lived with MS for 20 or more years, most without the benefit of newer drug treatments. During 18 face-to-face interviews, we learned that social support and exercise were key to living long and healthy with MS, no matter how severe your symptoms. We have developed and piloted a postal survey measuring health, lifestyle and quality of life in older people with MS. In this present study we will expand this survey to about 700 older people with MS who have attended an MS clinic in one of the study centres (NL, NS and Montreal). We want to know if there are modifiable health and lifestyle factors that influence quality of life. We intend to use this information to develop wellness programs for people living with MS, especially those newly diagnosed.