Joyful Sorrow - a Column by Kristin Neva

It’s hard to believe my husband, Todd, has been living with ALS for over 15 years. His limbs are completely paralyzed, and he uses a noninvasive ventilator nearly 24/7. He can still talk and eat, though not without difficulty. When people with ALS — or those who have a…

After my husband Todd’s ALS diagnosis in 2010, we regularly monitored the forced vital capacity (FVC) of his lungs. This was because the neurologist at our ALS clinic had told us that if Todd wanted to get a feeding tube, he’d need to do it while his FVC was…

In 2012, two years after my husband, Todd, was diagnosed with ALS, he and I made a trip to a larger town a couple hours away to pick out fixtures and appliances for our new accessible home. After purchasing the items and scheduling the delivery, we headed back to…

After my husband, Todd, was diagnosed with ALS, we moved closer to my parents because we knew we’d need their help as the disease progressed. We built an accessible home on the spot where their old barn had stood when I was growing up. We weren’t sure how much…

“You really have everything figured out,” one of my husband Todd’s new caregivers said as I was helping her transfer him into bed using his overhead lift. We’ve been managing ALS and paralysis for a long time, and we continue to improve our processes for Todd’s nighttime care.

A week ago Wednesday, on the 15th anniversary of his ALS diagnosis, my husband, Todd, had a dentist appointment. He dreaded the outing because he’s paralyzed below the neck, uses a power wheelchair, and needs breathing support. He hadn’t rolled outside of the house, not even to…

Someone in an online caregiver support group posted that they were finding value in using ChatGPT as a therapist. Other caregivers chimed in, saying they also turn to the artificial intelligence chatbot for support and find it surprisingly helpful. One person suggested prompting it to “respond like a counselor” or…

A few weeks ago, I visited the Paavola Wetlands Nature Area a few minutes from my home. A local group that meets monthly for prayer and reflection was at the preserve, and since they were in the neighborhood, I decided to stop by. I’d be able to get back quickly…

We had a whirlwind of activity this past Memorial Day weekend, with friends visiting from out of town. We had blue skies, sunshine, and warmer temperatures than usual. After a long winter and the slow unfolding of spring here in Michigan’s Keweenaw Peninsula, it felt like a gift.

My husband, Todd, hasn’t left our home since a dentist appointment last fall, and he hasn’t been to the park or attended an event in years. He doesn’t want to go out — his ALS progression has made being anywhere outside the house too uncomfortable to enjoy. He’s most…