As summer comes to an end, we’ve recently passed a couple milestones. Our son, Isaac, celebrated his 13th birthday at the end of August. That was not something we thought my husband, Todd, would live to see when he was diagnosed with ALS. Isaac was only 9 months old…
Joyful Sorrow — Kristin Neva
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.
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The challenges of caregiving have been in the news lately. Last year, Dolly Parton appeared in a video following the death of her husband, Carl Dean, to quell rumors about her own poor health after the cancellation of some shows. She said, “Back when my husband, Carl, was very sick,…
Power wheelchairs are expensive, and while Medicare covers the base cost, many beneficial features are an additional out-of-pocket expense for those already facing the high cost of living with ALS in the United States. Nine years ago, we began the process of ordering a power wheelchair for…
“Are you ever going to go faster, Mom?” my 12-year-old son, Isaac, asked earlier this summer when I caught up to him at the bottom of a hill, where he was waiting for me. I enjoy mountain biking with him. At times I ease off the brakes on a smooth…
“It’s just one night. It’ll be fine,” my husband, Todd, said after his night caregiver contacted me late one evening to explain she was dealing with a family emergency. Todd is paralyzed from ALS and needs to be turned and have his limbs adjusted throughout the night. It was…
Months after my husband, Todd, was diagnosed with ALS, our church’s worship leader asked us to participate in a Sunday morning service with “Cardboard Testimonies.” We watched an example on YouTube in which music played while people stood in front of the congregation and shared their stories. Presenters didn’t…
I remember those days when it was hard to get out of the house with our newborns. Two weeks after our daughter was born, my husband, Todd, and I celebrated Valentine’s Day with dinner at home. Todd bought jewelry for both Sara and me. Life has patterns and seasons, and…
Music had been a source of connection and mild contention early in my relationship with my husband, Todd, but it hadn’t been much of either since Todd became paralyzed due to ALS. Our first date was to an Alison Krauss & Union Station concert. Todd was new to Milwaukee…
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…
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