Walking down memory lane with multiple sclerosis
I jump at every chance to write about multiple sclerosis (MS). The ‘why’ is personal. My late father lived with MS and was in a wheelchair. My late aunt, his sister, also lived with the disease and was also in a wheelchair. My mom looked after their every need and for that I bow to her every day. I shared a bedroom with my aunt during my childhood. As kids, my late brother and I brought things to my dad and aunt, like the hairbrush or the crossword puzzle. We were their remote control for the television. As we got older, we’d feel very grown up taking them a cup of tea. We knew to help with the socks and shoes. We learned to play card games very young (crib) and “helped” my dad with his artistic endeavours. I remember model planes (he was a veteran of the Canadian Air Force) and an Eiffel Tower. Sometimes I swear I can still smell the paint. It was the 1960s when I was a child. My dad Gerry and my aunt Connie rarely explored their community because the world was not “accessible.” If they left the homestead, it was often in an ambulance to the hospital for appointments. Thinking of my dad and aunt, day after day, year after year, in their chairs or in bed, in the same little apartment, watching television (two stations) or playing cards with one of us kids, I shake my head in sadness. Smart, creative, fun-loving and kind people and yet, so very, very unlucky. They had MS. It is a progressive disease of the brain and spinal cord. Some people have some symptoms (numbness), some have more regular and severe symptoms (intermittent paralysis, loss of vision), and for others, like my dad and aunt, the paralysis is permanent. SOME CHANGE As I fast forward 50 years, I think of how differently my dad and aunt would have lived in today’s world. The internet alone is mind-blowing, offering opportunities to engage, play chess, argue, be entertained or relax with a favourite concert. For my dad and aunt — queue the Nat King Cole. Today, voice-activated devices provide people confined to chairs or beds the power to turn on the radio, ask and get an answer from Google or lock the front door. More accessibility in the community means wheelchairs can visit more public and private buildings than ever before. Lifts for buses and vans are common, and I regularly notice wheelchair drivers riding the sidewalks. For individuals and families living with MS, there is a registered society robust in its offerings. The MSSociety. ca website provides access to information, a toolkit and free access to webinars designed to connect people living with MS. While advances in research and the development of treatments for MS are well documented, so is the call for more funding to eradicate this unkind, invasive, progressive disease. RESEARCH NEEDED This walk down memory lane reminds me that there are still people in our communities — an estimated 77,000 adults in Canada (mssociety. ca/research-news) — living with MS. For me, each of them is a reason to support the MS Walk on May 29 and help the MS Society work toward their vision: “A society FREE of MS.” WALK DETAILS MS Walk, May 29: Walk/ride virtually or in your community, independently or with a group. Sponsors and donations are welcome. Go to msspwalk. donordrive.com for more information.