As Christmas lurks around the corner and everyone is hustling and bustling for last-minute gift deals, I’m reminded that this time of year requires extra preparation for myself as well. The holidays are great, but it’s the weather that accompanies this season that I have to handle with care.
Winter is no easy time for individuals with SMA, like me. If I’m not careful, the hand I use to drive my wheelchair can quickly freeze up, putting a major dent in my mobility. This was especially problematic for me in college, as I would often have to travel across campus in the blistering cold to get to my next class.
Even now, as I type this column, I feel chills running down my spine and penetrating my hands and feet. Moving my fingers across the keyboard on my iPhone screen is far more difficult now than it is during the spring and summer. The tiniest of movements use up a lot of energy as I struggle to deal with the icy weather.
Nevertheless, there are ways to make the wintertime more manageable. When I’m at home, I keep a heater near me, especially when I’m at the table working. Keeping the heater on long enough will eventually fill the whole room with warmth, which then sweeps through my body. It takes some time for my hands to warm up, but once they do, I become much more productive.
My college years were a bit more tricky. It’s difficult for me to wear a traditional coat and gloves, as all of the added weight and pressure on my body makes it nearly impossible for me to move and drive my chair. Anytime the temperatures dropped significantly while I was in school, I tried to keep my time outside to a minimum. Still, I couldn’t just stay inside all through December and January, especially when I was a full-time student and working for the college newspaper.
Eventually, my parents and I discovered wheelchair ponchos, which I continue to use today. These specialized coats may as well be called “wheelchair Snuggies,” given that the design is quite similar. Wheelchair ponchos have the advantage of not weighing nearly as much as traditional jackets, while still keeping me warm. I try to not stay outside for too long when it’s cold, but it helps to have something covering my body that doesn’t limit my mobility.
In college, I would also make sure that a friend was with me if it was dangerously cold outside. During other times of the year, I am perfectly fine traveling long distances by myself. But if the temperatures drop to a certain point, I must have someone at my side. The last thing I want is for my hand to freeze up while I’m alone, get stuck, and be unable to even reach my phone to call for help. Thankfully, I have a large social circle, so I never had a problem with finding friends and colleagues to help me in between classes.
I’m a firm believer that nothing should get in the way of those of us in the SMA community staying active and living productive lives. Though things like the cold of wintertime can be difficult to manage, there are tools and resources that can make this time of year a little easier to endure. All it takes is some creative thinking and some extra preparation.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.