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…
Joyful Sorrow — Kristin Neva
Kristin Neva is an author, mother of two, and caregiver for her husband, Todd, who was diagnosed with ALS in 2010 when he was 39 years old. Knowing they would need family support, they moved to Upper Michigan and built an accessible home on property next to Kristin’s childhood home. Kristin enjoys spending time outdoors, especially on the shore of Lake Superior in the summer. Todd no longer has use of his limbs, but he stays active working on projects on his computer using adaptive technology. They try to find joy in the midst of sorrow as Todd’s health declines.
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There are both big and little losses that come with ALS, for the person with the disease and their family. Each stage of the disease brings something new to grieve. When my husband, Todd, was diagnosed in 2010, one of our biggest losses was the future that we…
“I can’t believe I could’ve had longer footrests this whole time,” my husband, Todd, said this morning as he peered down on his wheelchair while I transferred him using our overhead lift. “I’ve been so nervous about my toes, especially now that I’m having such a hard time driving.” Todd…
It’s become exceedingly difficult for my husband, Todd, to leave our home now that he’s in an advanced stage of ALS. His neck is weak because of disease progression, and he uses noninvasive ventilation nearly all the time. To make matters worse, we live in a northern climate with…
Lines from a Shania Twain song have been running through my head the past few days: “You’re still the one I run to/ The one that I belong to/ You’re still the one I want for life.” The lyrics remind me of how my husband, Todd, and I…
It’s been a rough couple weeks since my husband, Todd, came down with a respiratory illness. The first weekend was the worst, with nausea, fever, chills, body aches, and chest congestion. By day four, he was able to eat a bit, and he spent longer stretches of the day…
“I’m not going to write a column this week,” I told my husband, Todd. “All I can think about is that you’re sick, and I don’t know how it’s going to turn out.” Todd came down with a bug a few days ago. He’s had body chills, aches, and congestion.
This afternoon, I loaded our household trash into the back of my husband’s accessible van. After opening the rear hatch and lowering the ramp, I simply dragged our three 33-gallon trash cans up the ramp to where Todd would normally park his power wheelchair, then I drove to the transfer…
Moments of daily life with my husband Todd’s ALS frequently put both of us in panic mode. It makes me wonder if we should take more precautions — but there are trade-offs. The other day, for example, food got stuck in Todd’s throat while I was feeding him chicken…
For more than a decade living with my husband Todd’s ALS, I’ve been the finder and procurer of equipment that makes both of our lives better. Since disease progression has made travel to our closest ALS clinic too difficult, we’ve had to figure out how to manage the…
With shorter days and overcast skies lasting for weeks due to lake-effect snow, darkness comes quickly after sunset here on Michigan’s Keweenaw Peninsula. Because our nights are long, many of our cross-country ski trails are lit so that people can use them after work. I try to ski at…
As we head into the new year, I’ve been in decluttering mode. I sorted through my linen closet and discarded worn sheets and pillowcases. I sorted through files and found old tax returns, bank statements, and receipts, and I burned sensitive papers in my mom’s sauna stove. And then I…
I recently listened to a podcast called “The Art of Manliness.” The episode was titled “The Winter Mindset — How Norwegians Love the Winter (And You Can Too).” I could relate, because I live in a northern climate that receives over 200 inches of snow each year. Winters in Michigan’s…
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