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 - a Column by Kristin Neva
“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…
Recent Posts
- I reframed my life with ALS by becoming a calmer duck
- New ALS treatment improves survival, leads to function gains in trial
- ALS Network, ALS United calling for ‘bold’ research proposals for funding
- Study finds common medications that could be repurposed to treat ALS
- New eye imaging approach may help distinguish ALS from Alzheimer’s