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.
While many couples celebrating an anniversary post joyous messages and proclaim their excitement about the future on social media, I couldn’t bring myself to do the same when my husband, Todd, and I reached our 20th wedding anniversary a couple weeks ago. It’s not because we don’t have a good…
We had a young visitor this past weekend who met my husband’s disability with frank curiosity and innocent sweetness. The guest, Todd’s 6-year-old great-nephew, watched with interest as I set up his Uncle Todd at the computer. “What is that for?” he asked as I put Todd’s sip-and-puff…
One evening last week after I’d finished cooking dinner, I grew concerned. My almost 14-year-old son had gone out to ride his dirt bike on an off-road vehicle (ORV) trail that ran next to our property. He’d planned to go only to a nature area a couple miles away and…
The years since my husband, Todd, was diagnosed with ALS have been hard for both of us, not only physically but also emotionally. I don’t think there’s a way to overcome the grief that accompanies a disease that causes ongoing loss, but we’ve found ways to live with it.
My husband, Todd, is paralyzed because of ALS, so I transfer him from bed to wheelchair, and from wheelchair to the toilet, using a sling and overhead lift. This morning, as I moved him from his bed to the wheelchair, he told me, “My fingernail is cutting into…
A couple weeks ago, a friend asked me, “What are you going to do for your birthday?” “We’ll just have a family dinner and play games,” I said. “That’s all I want.” When my husband, Todd, and I were married, we might have gone on a weekend getaway or out…
A family friend visited last week, prompting a trip down memory lane to the days long before my husband, Todd, had ALS. My teenage daughter and her boyfriend sat on the couch behind us, while Todd, our friend Abby, and I sat around the kitchen table sharing memories…
Eighteen years ago when expecting my daughter, I decided to become a stay-at-home mom. Mothering a newborn was a joyful season, but it was also exhausting and isolating. Another new mom in my community who’d experienced that same isolation after leaving the workforce started a family club that offered an…
Since my husband, Todd, is paralyzed from ALS, he can’t help with household chores and maintenance anymore. That puts much of it on me, but that’s also difficult for him because he loved many of those tasks. He enjoyed his career, which included work in marketing, finance, and manufacturing,…
When I took my son to the doctor for his sports physical, the nurse went through a checklist of health history questions. The exchange took an unexpected turn when she asked about my husband’s health. “Is Dad healthy?” “No. He has ALS.” The nurse glanced at her computer screen.
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