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.The other day I was using the brush hog on my tractor to mow a field when I noticed that the air conditioning wasn’t working. It was hot in the cab, but not unbearable, so I continued mowing, thinking I’d get it checked the next time I had the…
On a beautiful fall evening recently, my son had a junior varsity football game. I prepared to go by helping my husband, Todd, clear his lungs again in the bathroom, and then I set him up at his computer. He couldn’t go with me because he is paralyzed and…
A friend from a lifetime ago rolled down an accessible path leading to Lake Superior in my husband’s backup power wheelchair, and I experienced a sense of déjà vu after we turned down a boardwalk trail through the woods. My husband, Todd, was able to traverse this trail in McLain…
Committing to be out of the house is tricky because my husband, Todd, has ALS, making him paralyzed below the neck and requiring noninvasive ventilation. As long as his breathing is going well, I can run errands and attend events that aren’t more than 15 minutes away. Longer…
My daughter, Sara, is beginning her freshman year at a university a couple hours from us, and last Saturday was her day to move into the dorms. I had planned to help her move, so weeks ago I lined up a daytime caregiver for my husband, Todd, who has…
Last week on NPR’s “Morning Edition,” correspondent Ashley Westerman talked about Ukrainian women getting manicures. “It’s just part of looking as good as you can. It’s a matter of hygiene for some but mostly a way of feeling normal in wartime.” The piece resonated with me because I’ve…
A month ago, one of my husband’s nighttime caregivers gave notice that she won’t be able to work beyond the summer, and our search for her replacement began. I asked Todd’s other caregivers to spread the word, I posted on my Facebook page about it, and Todd reached out to…
“I really want to go to your performance,” my husband, Todd, told our daughter, Sara, who was starting a weeklong intensive with Eisenhower Dance Detroit that will culminate in a performance Saturday. “It’s just too hard to get out, and I don’t want to sit in the theater with…
A couple years after my husband, Todd, was diagnosed with ALS, we moved to the Keweenaw Peninsula of Michigan to be near my parents. We had two small children at the time, so we’d explore the shores of Lake Superior for family outings. We spent time at McLain State…
Twelve years ago, my husband, Todd, and I installed bamboo flooring in three bedrooms and the living room of our new accessible home. Todd had been diagnosed with ALS two years before, and his arms had become quite weak. Contractors built most of the house, and a few volunteers…
