Surviving Winter with Muscular Dystrophy

I sometimes wonder how I will survive Chicago winters going forward. Winter is not a problem for some people with neuromuscular disorders. But for those of us in colder climates, it’s a big deal. The reality of my city’s wet and slippery conditions means I need to live creatively and plan. The 10-day forecast on my iPhone is my most visited site in the winter. I consider it when making plans away from home, and I must be flexible with my plans and prioritize my goals.

While I was never a cold-weather person, I have grown to cherish winter’s cold and sunny days. I feel confident that I can handle colder temperatures with dry conditions. I will be fine as I go about my normal schedule. I can get to my car and drive over to a coffee shop and work. And when I attend evening events, I can get around with few problems.

Even during a Chicago winter, I can count on cold, dry weather most of the time. But inevitably, living in a northern climate means that my 10-day forecast will show me an ugly side. I like to begin planning as early as possible. While cold weather is not an issue for me, snow and ice are a different matter.

If we have a snowstorm, I’ll be grounded for 48 to 72 hours until the streets and sidewalks are cleaned and de-iced. After a day or two, I can usually drive around and go through a drive-thru. I can also check out places like my local café to assess the condition of the sidewalks. I’ve even called my city’s streets and sanitation department and told them of specific corners that need to be cleared so that I can get from my car to the sidewalk. If you live in a colder climate, I recommend doing this kind of advanced scouting. You need to scope out the lay of the land and get to the right people to complete the cleanup.

Some businesses don’t do a solid cleanup, and this can affect people visiting nearby stores. A recent letter to the editor in the Chicago Tribune talked about the need for businesses and homeowners to do a better job of cleaning the ice and snow. This would help people with disabilities to go outside their homes.

When the ice and snow are lighter, or cleanup efforts have cleared some dry patches, I might venture out. I have a pair of boots that are less slippery than my gym shoes. I also purchased a set of traction cleats, which have a metal coil that grips the ice and attaches to the sole of my gym shoes.

I’ve decided to plan an escape every winter. Recent winters seem to tend toward milder weather early in the season through to the end of the calendar year. So I just need to make it through January, as I’ll be “away” for most of February and March. I’ll be in Southern California and Arizona, before traveling to Brussels and Amsterdam for the second year of a clinical study in which I am participating. And then I hope to kiss this winter goodbye.

I’d like to know how others with muscular dystrophy manage the winter — particularly those living in colder climates with ice and snow. I recently started using a wheelchair in some situations. If you use a wheelchair, please tell me how you deal with the bad weather. I learn so much from all of you.

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