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.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…
I keep playing a new song by Bon Iver. Once my husband, Todd, who has ALS, is set up on his computer after breakfast, I turn my attention to household chores until he needs my help again. My new find, “There’s a Rhythmn” [sic], has a reflective,…
My husband, Todd, and I work New York Times puzzles while we eat breakfast. Because Todd is paralyzed due to ALS, I feed him. We start with the Spelling Bee puzzle, which offers seven letters for you to make words with. There is always at least one word that…
Lately I’ve seen people on my social media feed dumping ice water over their heads to promote awareness of mental health, which took me back in time to the ALS ice bucket challenge in 2014. That viral sensation may have been the most effective tool for raising awareness…
