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.
I’m cautious about leaving my husband, Todd, alone because ALS has compromised his lung function. Todd can usually tell when mucus starts building up, so if his lungs are doing well, we’re comfortable with me running errands or attending events, as long as I’m not more than 15 minutes…
After my husband, Todd, was diagnosed with ALS, we moved from Wisconsin to my childhood hometown in the Upper Peninsula of Michigan, where we built an accessible home on a small corner of my parents’ 38-acre plot. As his ALS has progressed, I’ve had to stick closer and…
After my husband, Todd, was diagnosed with ALS at age 39, he grieved the loss of his career and struggled to find a sense of purpose. When he was healthy, he’d hoped to take on new roles with his company and advance in management, but all of that became…
Last January, my sister-in-law asked what our plans were for my daughter Sara’s high school graduation. She wondered if she, my mother-in-law, and my husband’s siblings should plan to come for the commencement ceremony or a graduation party some other weekend. My husband Todd’s breathing is so compromised due to…
“Why are you bouncing?” my daughter asked me the other day as I prepared the medications and supplements that I give my husband, who has ALS, through his feeding tube. “It’s good for mental health,” I said. I’m always on the lookout for strategies to cope with the…
Nature calms me and nourishes my soul amid the challenges of giving care to my husband, Todd, who has ALS. A few days ago, I walked down our country road, listening to singing birds and taking in spring’s beauty. I admired signs of new life — budding green leaves…
My son joined middle school track this year, and after a few days of practice, my husband, Todd, asked how it was going. “I’m not a long-distance runner,” he said. “I don’t know how to pace myself.” “I was no good for any distance, either,” Todd said. “I ran…
As a caregiver for my husband, Todd, who has ALS, I’ve experienced numerous traumas in the 14 years that we’ve been living with the disease. Our lives were shattered with Todd’s diagnosis, which occurred when our daughter was 4 and our son was 9 months old. I…
I make lists to keep track of everything I need to do in addition to taking care of my husband, Todd, who has ALS. Make an appointment to have the snowblower removed from the tractor and the bucket put on. Get the snow tires swapped out for summer…
A decade ago, I purchased a fireproof lockbox to secure important papers, such as birth certificates, Social Security cards, and passports. I also stored several necklaces that my husband, Todd, had given to me, along with two watches he’d worn before he got ALS. Over the years, I added…
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