What I’ve Learned About Adaptive Skiing and Duchenne

In a previous column, I mentioned that my family would be skiing in Winter Park, Colorado, over Christmas break. My sons Max, Rowen, and Charlie, who have Duchenne muscular dystrophy, tried adaptive skiing for the first time. The experience taught us a lot.

Traveling with the boys requires extra planning, but we did our best and figured out what worked and what we would do differently the next time. It was a wonderful trip, and we will do it again as many times as the boys’ health, our budget, and our schedule will allow.

We chose Winter Park because it’s where the National Sports Center for the Disabled (NSCD) is located. The center has a dedicated staff that can help you prepare for your trip. It was helpful to know how many hours and days we should attempt as first-timers, and what we should bring. There are also instructors trained to meet the needs of anyone who comes to ski, whether they are a beginner or an experienced skier.

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Without any previous experience, it was hard for us to decide how much the boys could physically tolerate. NSCD staff recommended that we try two half days of lessons. Each lesson was about three hours long. Our boys are slow to start in the mornings, so we chose to take classes in the afternoon.

The recommendations were spot on for two of our three boys. Max, 16, and Rowen, 12, who are nonambulatory, thought two half days were perfect.

However, Charlie, 10, who is fully ambulatory, would have preferred to ski all day and would have loved a third day on the slopes. We tried to add lessons while we were there, but none were available. The next time, we will sign Charlie up for full-day sessions. I think he had more zest due to his age and ambulation status.

We didn’t know what type of ski would be most beneficial for the boys. The two options were a ski bike and a sit ski. Perhaps we should have Googled what a ski bike looked like before making our decision, but we didn’t. We chose a ski bike for Charlie, our youngest, and sleds for the two older boys. The sit ski was perfect for the boys. They left everything set up at the end of the first day, and were out on the slopes within minutes on the second day.

The bike ski was inappropriate for Charlie. It required more strength and balance than Charlie has. The instructors recognized it wasn’t going to work, brought him back in, and had him fitted in a sit ski within an hour. It was much better for him. Based on our experience, I would recommend sit skis for kids with Duchenne.

Dressing the boys for skiing is worth mentioning. We had to provide ski goggles, so I ordered a cheaper three-pack. Next time, I will invest in higher quality goggles. Rowen especially had trouble with the pair we bought, and when we switched them out for a better pair the second day, he had a much better experience.

We also had to provide all outerwear except a helmet, including snow pants, winter coats, hats, gloves, and boots. My boys are small in stature because of long-term steroid use, and have large calf muscles. These symptoms made it challenging to find snow pants, ski socks, and boots that fit them comfortably. It wasn’t impossible, and we didn’t have to buy anything too expensive, but we had to be patient and have the boys try on several options.

If planning a ski trip, give yourself time to find the appropriate gear. Once the boys were dressed warmly in the right equipment, they did a good job tolerating the cold weather. Boots were the most difficult to find for Rowen. After complaints of cold feet, we ended up borrowing snowmobile boots a few sizes too big from the NSCD to keep his feet warm. I will invest in a pair for him.

I never imagined everyone in our family would be able to enjoy a ski vacation. Duchenne can make it difficult to find something we can all do together, but this year, out on the mountain, it didn’t get in the way. Adaptive skiing made this one of our best family Christmases, and I would encourage any families who are interested to try it.

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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, and are intended to spark discussion about issues pertaining to muscular dystrophy.