Surviving Winter with Muscular Dystrophy

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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Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.

9 comments

  1. Gina Lanzer says:

    I know what you mean! I live in a small town in NW Ohio, and I am absolutely PHOBIC about icy conditions. I am lucky to have a garage, so getting to/from the house/car is no issue, but getting into work from the car or vice verse often is! I’m still ambulatory, and this year I started using hiking poles to help with balance/stability. Would love to escape winter, especially in February/early March, but alas… at 45, and able yet, I still need to work. Sigh.

    • Ralph Yaniz says:

      Gina, it is very difficult. Between your hiking sticks and maybe some good spiky shoes that might help. But I have found those shoes might be great in snow and ice But once you get inside on the tile floor they might be very slippery. I hope your work can accommodate in someway so you can get into the building safely.

        • Ralph Yaniz says:

          Cachelle, google “Black Diamond Hiking Pole” and you’ll see what I have. There are many good brands. They expand and contract so your height won’t matter. I’m 6’ tall and they can go much higher and probably much lower than for someone 5’ tall. Wishing you the best!

          Ralph

  2. Laurel says:

    Living in icy,snowy Vermont, and using a wheelchair for the last 20+ years, I too know a lot about traversing and living in a cold climate. While I was working (I retired almost 4 years ago), I worked hand in hand with the facilities and transportation folks. I could no longer independently put on a coat so being as close to the door as possible to get into work was key. Speaking of coats, instead I wear a lot of thermal undershirts – the kind made for hunters – and light wool that is very warm – like lambs wool or cashmere. Fleece can be good too. I made myself am exact size blanket to go to over my legs when it is snowing out so I don’t get soaked and the size is right for not getting stuck in my wheels. Having protection for my hands is also key since I have Raynaud’s. I keep mittens/gloves on any time I am out of doors even if I think I don’t need it. Otherwise, my fingers would be so numb, at times, I couldn’t type when I got to work. I had a space heater at work as well – and have several around our home because the ambient heat from our regular system doesn’t warm me up enough even when it’s up to 78+ degrees. I take long hot showers and have a heated mattress pad, fleece sheets and sometimes even use an electric blanket too. Wearing a hat or gloves is also helpful. Then, I take a trip to FL each January or February too LOL. Stay warm everyone and thanks for the article!!!

  3. Samuel Dalton says:

    Yes…winters are not my friend. I monitor the forecasts as well. I’m lucky in that I can work from home. If I find out we’re going to have snow or ice, I’ll bring my work laptop home the night before. However, forecasts aren’t perfect and sometimes the weather can change while you’re at work. I’m on a mobility scooter but I still have to get to and from the rear of my vehicle. I keep rock salt in my vehicle and spread it around if I need to. It crunches as you step on it and gives me pretty good stability. Sometimes I’ll put some in a freezer bag and put it in my coat.

    • Ralph Yaniz says:

      Sam, these are great ideas. I’m almost feeling like at my condo I need to buy salt and a mini snow blower. You are living the creative life I’ve written about where we come up with ideas. And sharing is great. We all learn!

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