In the fall of 2009, when my husband, Todd, first noticed a weak left arm, he thought it was a pinched nerve. He was referred to a spine-care clinic for physical therapy. A doctor there recognized that his symptoms might be due to ALS, canceled his physical therapy, and…
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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We’ve had a mild fall on Michigan’s Keweenaw Peninsula with no snow or frost yet, though we often have both before November arrives. But even with our good weather, I’m steeling myself to face the coming winter. I drained my hoses and hung them on the garage wall. I picked…
I’ve been living with my husband Todd’s ALS for a long time, and while the disease is always there in the back of my mind, I’ve learned to compartmentalize it. I don’t want to talk about ALS all the time, and I like having conversations beyond the topics of…
In more than 16 years of living with my husband Todd’s ALS, I’ve fought a lot of battles, and I’ve won a few. When Todd was prescribed at-home physical therapy, he was also eligible for home health aides to assist with showering. I pressed the agency to give…
My husband, Todd, and I were having a discussion with a visitor in which our guest told us about his back pain and trouble sleeping. “You know what you should do?” Todd began. “Instead of getting out of bed, hire nighttime help, and they can roll you to your side…
On a walk in the field near my home, I passed by fruit trees that my dad had planted for me in 2014, two years before his death. He dug holes with his backhoe, planted two cherry and three apple trees, and then fenced them in so deer wouldn’t ruin…
Fall has arrived, and the days are cooler here on Michigan’s Keweenaw Peninsula. The maples are showing hints of red, and we haven’t seen a ruby-throated hummingbird for a few weeks. I suspect they’ve all headed south for the winter. Last spring, we put decoy swans on the pond to…
This morning my husband, Todd, asked me how many boxes of medical gloves we had left, so I took an inventory. We stock medium, large, and extra-large, because different caregivers prefer different sizes. “I think we need to order more large,” I said, “There’s four boxes left.” I paused as…
A few months after my husband Todd’s ALS diagnosis, we traveled with our children from our home in southeast Wisconsin to meet up with Todd’s sister and brother-in-law at a rented condo overlooking Lake Delton in Wisconsin Dells. We had recently returned from Mayo Clinic in Minnesota, where Todd…
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,…
My husband, Todd, and I celebrated our 23rd wedding anniversary this week. We’ve spent 16 of those years with ALS since Todd’s diagnosis in 2010. I’ve been thinking recently about how we have found meaning within this difficult life we’ve been living for so long. Todd and Kristin…
Nine years ago, and seven years into my husband Todd’s ALS journey, we were still trying our best to get out and have a normal life. That fall, our 8-year-old son came home from school with a flyer from a local church. They were hosting a Harvest Festival and…
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