Will I End Up in a Wheelchair?

I’m guessing all M.S. patients ask themselves this question at one point in time. My first question, when we started exploring whether or not I had the MonSter was “Do you die from M.S.?” I now know that the answer is “No!” Somewhere along the way, I asked one doctor or the other if I was going to end up in a wheelchair. Like so many answers to questions regarding M.S., the answer began with “I don’t know” and concluded with “but if you do, it shouldn’t be for a long, long time.” Not as definitive as the previous: “No!” Early into my diagnosis (days one through three) I wanted definitive answers. In the days that followed, I learned that won’t be a possibility with this particular disease.

When I first thought I “might” have M.S. (and I may have said this somewhere before), I Googled the disease. My neurologist warned against it, but I was stubborn and ignorant. I was in my hospital bed, with my laptop, and thought – “Let’s check this out.” One of the first sites I landed upon was some sort of discussion board where someone posted that they read somewhere that 97% of M.S. patients eventually end up in nursing homes, unable to care for themselves. It was one of the many, very scary postings I read during those first few days, and the main reason why I wanted to create this blog — to focus on the positive. Yes, we need to be realistic about what could happen to those of us with the disease. But, M.S. affects each person differently, so there really is no way to predict if anyone will end up in a wheelchair.

I was sitting in the bank’s drive-thru on Friday and I saw a young man, maybe in his early twenties, in a wheelchair, struggling to open the door to the bike sales shop across the street. It was the first time in 17 days that I thought about whether I would end up on two wheels someday. Then one car pulled out in front of another. Beeping and shouting and arm-flailing ensued. It could have been an accident, but thankfully it wasn’t. But it got me thinking. I could get into a car wreck tomorrow and end up in a wheelchair. I could grow into old age, break some brittle bones and yes, end up in a wheelchair. There are lots of things that could land me in a chair, not necessarily M.S. And, according to the Lahey Clinic in Massachusetts, “…two-thirds to three-quarters of all M.S. patients will never require the use of a wheelchair. Choosing to use a mobility device (e.g., cane, motorized scooter or wheelchair) can help M.S. patients combat fatigue - the most common symptom of M.S. - by conserving energy while getting from one place to another. While no one likes the idea of using a cane or scooter, such assistive devices make life easier and allow M.S. patients to maintain independent, active lifestyles.”

For now, I’m completely ambulatory. I may be suffering symptoms that ebb and flow, some nasty back and neck aches, and I can’t see great. I had the day off Friday to cook for a holiday party we had that evening and I was beat on Saturday. I was tired and pretty weak, but I had a lot of fun getting to that point. I rested all day and I’m in much better shape this morning. I know I’m not the “old Kim”, but, how many of you –without M.S. — have back aches, tiring vision, and other symptoms of life-living that ebb and flow?

Tom and I have started planning a move to a new home in the next two years. The drive out to the country, not to mention having to care for three acres of land, and yards and yards of winter snow blowing, is pushing us to move in towards town again. We’ve decided to buy a ranch-style house, just in case. We live in one now anyway. And, with his bad knees, heck, he’ll be in a wheelchair before me!

It really is all about keeping things in perspective.