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.
My husband, Todd, has ALS and is paralyzed, so not only do I cook all the meals, but I also feed him. His meals are often rushed or delayed because I’m running our daughter, Sara, to dance practice or wherever else a busy 16-year-old needs to go. There…
One evening, I took my daily walk in the Nara Nature Park in Houghton, Michigan. As I made my way around a network of wooden boardwalks, through a marsh, and alongside a riverbank and lakeshore, I listened to a symphony of birds. I saw a few couples walking,…
It’s nice to have distractions from the difficulty of life with ALS, so I was in a pretty good mood for the past week because my brothers, sister-in-law, and nieces were visiting from out of town. But one afternoon, they all headed out to a retreat center about 45…
When my 12-year-old son, Isaac, went to mow the grass last week, he noticed that one of the tires had come off the rim. My husband, Todd, purchased the zero-turn lawn mower nine years ago, a few years after his ALS diagnosis, when his arms were too weak to…
“What if Todd had aspirated while you were on your spring break trip?” someone asked me. That’s the type of question I’ve asked myself many times over the last decade since my husband, Todd, was diagnosed with ALS. What risks are we willing to take to…
“Kristin, if you can’t choose joy for yourself, then do it so Todd’s remaining days and years won’t be miserable,” I wrote in my journal a month after my husband, Todd, was diagnosed with ALS. “Do it so your kids can see how to live well, so they…
As I left our house to get the kids from school, the tree was gone. A contractor’s crew was removing brush from the ditch with an excavator to extend the culvert that passed under our driveway. My husband, Todd, had specifically asked that the poplar tree be left alone. I…
Every Memorial Day, I go with my mom, daughter, and son to the Lakeside Cemetery in Hancock, Michigan, to attend a ceremony honoring veterans. I drive separately in case I need to return home quickly to help my husband, Todd, who has ALS. The ceremony ends with the…
Last week, my husband, Todd, considered canceling a dentist appointment to get a crown placed over a broken tooth. “Is it really necessary?” he asked. “What’s left of this tooth will probably last me for the rest of my life.” Todd has had ALS for nearly 12 years, far exceeding…
A couple weeks ago, when my husband, Todd, told me he wasn’t going to attend our kids’ end-of-the-year events at school — including our son’s band concert and our daughter’s choir concert and dance recital — it was a reality check for me about where we are in this ALS…
