Over the years I have pieced together a few strategies for dealing with the cold season when living with spinal muscular atrophy (SMA). I am writing from New Jersey, where winters can be freezing cold and snowfall can be heavy, but I believe the same information helps in other places.

Warmth Takes Planning

I always prepare for the winter season a bit earlier than most people, starting toward the end of fall. In my case, accessible clothing and proper jackets can be tedious to hunt down. The added size and weight of a heavy or bulky jacket could make driving a power wheelchair more difficult.

Trial and error works best, but I usually end up doing at least a little modification to make outerwear work well for me. I personally have no preference for style because I want to keep my options open as much as I can. I have found thin jackets with fuzzy interiors to be a good solution for warmth, but it took some testing to find that result. Zippers are possible, but more on the side of inconvenience than anything. Snaps are welcome for ease of getting on thick pants and everything alike. Paying attention to detail as far as physical demand is key for finding the optimal situation with warmth.

Eyes on the Weather Forecast

Staying in tune with the weather forecast is one of the most important aspects of the winter season. Lots of factors play into dealing with the cold months and SMA. During cold weather, I often struggle with driving my wheelchair. If rain is coming, it means that there is potential for being wet. Of course, being wet implies that the cold hits faster than usual. I try to minimize my time outdoors as much as I can in the rain. In the snow, I have to plan for driving through bumpy terrain and keeping myself steady. Preparation is always key.

Avoiding Illnesses

The chance of sickness increases in the cold season. I always take caution, because I know that in the winter, I am a bit more susceptible to illness. I aim to be indoors as much as possible, because the cold takes a toll physically. But I also try to steer clear from potential risks. For example, I often ask my friends to be extremely cautious about their health if they’re coming to my house. Thanks to these efforts, I haven’t had anything worse than the common cold for many years now. But caution can mean a boring winter with fewer visits from friends as well.

Mental Health Deserves Attention

Psychologically speaking, winter can be a bit tough on the mind. By the time outdoor holiday festivities roll around, I feel uncomfortable driving my wheelchair safely in the cold. To avoid feelings of isolation and to preserve my mental health, I take the time to plan indoor activities to keep myself busy during the winter season. Family time is a great alternative.

Winter always comes with challenges, but establishing a system helps the season fly by. Finding a way to enjoy the holidays as best as possible and taking care of myself is always a priority around the holiday season.

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