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.I don’t like asking for help, but when it’s for my husband, I’ll do it. Last Friday, after getting my kids out the door for school, they quickly returned to the house. “The car has a flat tire,” my daughter announced. “I’ll drive you,” I responded.
A friend who visited Mayo Clinic in Rochester, Minnesota, for a serious health issue posted a video on social media of a string quartet playing in the towering glass atrium of the Gonda Building there. It brought back memories of when my husband, Todd, and I went to Mayo for…
“You should burn the beaver,” my husband, Todd, said. Over the last several years, since he has been paralyzed due to ALS, he has given me a lot of advice on various house projects, but that was not something I ever anticipated hearing. Last weekend, I was walking with…
Last week, I was in a grocery store and noticed another shopper had an occasional cough and wasn’t covering his mouth. I gave him wide berth as I gathered the items I needed. When I had found everything on my list, I made a beeline for the checkout line, and…
Before my husband, Todd, had ALS, our marriage had a normal rhythm to it. He’d go to work, and I’d care for our small children, filling their days with activities. Todd and I would reconnect each evening, sharing updates on our respective days. We took our kids on walks…
When my two teenagers came home from school, I had them sit down to listen to the first five minutes of a recent “Freakonomics Radio” podcast episode, “Swearing Is More Important Than You Think.” The host, Stephen Dubner, is struck that there seems to be more swearing now than…
Last weekend, my 13-year-old son, Isaac, and I spent about five hours replacing transition strips between my husband’s bedroom and the hallway, the master bathroom, and his office. When we built our accessible home over a decade ago, we put hard flooring throughout the house in anticipation that my…
My husband, Todd, and I used to enjoy heading out on adventures, whether it was driving an hour to Chicagoland for an architectural tour of homes designed by Frank Lloyd Wright or flying halfway around the world to Taiwan and visiting a traditional tea house in a small mountain village.
The other evening, our daughter, Sara, read “Bread and Jam for Frances” aloud while I finished feeding dinner to my husband, Todd. He used to read this children’s book about a young badger with human qualities to Sara when she was little. In the book, Frances has an…
The other day my husband, Todd, told me he forgot to ask the caregiver to spray out his clicker tube for his HeadMouse. Because he’s paralyzed from ALS, he clicks his computer mouse by sipping and puffing on a straw, and we only need to replace it once…
