May 30 is World MS Day
By Dr. Marcia Finlayson, a MS rehabilitation researcher and daughter of a person with MS
Multiple sclerosis (MS) is an immune-mediated disease of the central nervous system that is chronic, variable, and often progressive. Damage to the myelin and nerve fibers contributes to a wide range of symptoms such as extreme fatigue, balance and gait abnormalities, numbness, weakness, pain and changes to vision, cognition, and bladder and bowel functions. These symptoms, in turn, can make it difficult for people with MS to engage in the ways that they want in valued activities such as working, parenting, being with friends, maintaining a household, and learning new things. These difficulties often increase the need for other members of the family to take on additional roles and responsibilities in the household. For many people affected by MS - both people with the disease and their families - dealing with the everyday challenges of managing this complex and unpredictable disease can be an isolating experience.
May 30th is World MS Day, a day dedicated to bringing the global MS community together, raising awareness through stories, and instilling hope for the future (https://worldmsday.org/). The theme this year, and for the next two years, is ‘connections’ - with communities, with self, and with high quality care. Canada has one of the highest rates of MS in the world1, 2 so it would not be surprizing if you had a connection to MS - through family, friends, work or your clinical practice.
Even before COVID-19, it was challenging for many people affected by MS to find, connect with, and afford the services and supports they needed to improve their overall health and well-being - appropriate housing and home modifications, community mobility options, home-based support services, and wellness programming, just to name a few. For people in small communities and rural areas, these challenges can be even greater. Now, in a world of physical distancing, travel restrictions, and shortages of personal care staff, the challenges that people with MS and their families have been experiencing for years are even more striking.
So, today, on World MS Day, please take the time to learn more about the issues and challenges that people affected by MS face. Take the time to find out how you can support advocacy efforts that will lead to better, more comprehensive options for people with MS and their families across the full continuum of care (https://mssociety.ca/get-involved/take-action). Reach out to the person with MS in your life to make sure they are getting the support that they need despite physical distancing guidelines. Ask a family member of a person with MS how you can help support them with their additional roles and responsibilities. Be a part of making connections today and instilling hope for the future.
- Atlas of MS. Available at: https://www.msif.org/about-us/who-we-are-and-what-we-do/advocacy/atlas/
- Public Health Agency of Canada (2018). https://www.canada.ca/content/dam/phac-aspc/documents/services/publications/diseases-conditions/multiple-sclerosis-infographic/multiple-sclerosis-infographic.pdf