Finding what’s unique about each person with ALS
Given how much the disease can vary, what works for each case is different
After decades of classic cross-country skiing, I realized that the groomed track is too wide for me, and it got me thinking how difficult it is to find single solutions to help everybody with ALS.
We had springlike weather this past week in Michigan’s Upper Peninsula, and I got out on Michigan Tech’s ski trails on a 50-degree afternoon. Getting exercise and being in nature help me manage the stress of my husband’s ongoing decline because of ALS.
On that day, the snow had melted a bit, and the trails had a nice glide. I usually keep my legs parallel in the tracks set by the groomer, but I stepped out to ski on the area that’s flattened and rolled so that skate skiers can push off with the inside edges of their skis. The untracked skate-ski path had a wonderful glide as well, even though I wasn’t skate skiing. It was soft enough that I wasn’t slipping around as I glided across the snow.
As I alternated between the classic ski tracks and the untracked skate-ski path, I realized that it was more comfortable for me to ski outside of the tracks. Without a set track, I could ski with my legs closer together, which felt more natural and better for my back. The space between the groomed ski tracks was twice as wide as what was ideal for me, but I suppose the ideal track width varies by person.
Two classic cross-country ski tracks run next to a skate-ski path in Michigan’s Upper Peninsula. (Photo by Kristin Neva).
If you’ve seen one case of ALS, you’ve seen one case of ALS
As I skied in the warm March sun, I thought about how so much of life is unique to an individual, including how people come to terms with suffering and death. That’s also true for navigating life with ALS. Because the disease affects people so differently and progression varies so much, there’s no single solution that works for everybody.
Some people with ventilators go out and about, but my husband, Todd, isn’t comfortable leaving our home with his noninvasive ventilator.
Some people with ALS can sleep through the night. Others, like Todd, need frequent attention.
Some people with ALS lose their ability to speak rapidly, whereas Todd, who is nearly 15 years post-diagnosis, can still speak clearly when he’s on his ventilator.
Some people die from ALS within months while others navigate a slow progression for years.
I skied to the top of a hill and looked down at the trail in front of me. I stepped back in the track, because although it might not be as comfortable, I needed it to keep my skis pointing in the right direction. I didn’t feel confident or skilled enough to navigate the decline without assistance.
In life with ALS, I’m often seeking a track.
I reach out to folks in ALS support groups on Facebook looking for guidance. How have others dealt with specific problems? How are they navigating the stress and grief that accompany this disease?
Sometimes I find a track that works for us, but other times, I need to make my own path.
I share my track with you in this column, and Todd and I have made YouTube videos about equipment and other ideas that have been helpful to us. But I remain well aware that what works for us may or may not be helpful to the needs of others.
In one sense, we’re all in this together, and yet we’re also on individual journeys.
Note: ALS 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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