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 didn’t react when a spine care specialist mentioned ALS as a possible cause of my husband’s weak arm, because I didn’t know what ALS was. Todd and I talked about daily life during the drive home from the appointment, and it wasn’t until later that evening when the kids…
One of my biggest concerns is how my husband’s ALS will affect our children. They were both under 5 when Todd was diagnosed and while they are growing up, their father continues to lose strength. A couple of years into the disease, I was fastening Todd’s seat belt as our…
I’m not the same person I was 10 years ago, before my husband, Todd, was diagnosed with ALS. The brutal reality of the disease has changed me in three ways: 1. I swear more I’d never done much swearing. When I was 15, I had just gotten my driver’s permit…
A month after my husband, Todd, was diagnosed with ALS, I wrote in my journal: “Squeezing in memories is bittersweet. Last weekend, we took Sara and Isaac to the beach. The sun sparkled off the water and Isaac pointed at the seagulls flying over Lake Michigan. I took pictures…
I thought my days of obsessively avoiding germs and examining poop would be over once my babies grew, but such is the circle of life now that my husband has ALS. When I was a brand-new mom, one of my biggest pet peeves was when strangers in a grocery store…
My son pointed to a plastic army man on the ottoman. “That guy is a sniper,” he said. “He’s taking everyone out.” He placed a soldier on top of others on the living room floor. “This army is using dead bodies to build a wall. In war, you have to…
The grief that accompanies ALS is multifaceted. I grieve my husband’s loss of function and the loss of our dreams. Just when we find a new normal, there is further decline. I let my grief out on the pages of my journal. I cry, I scream in the car when…
Like many families, we played games over the holidays. Because my husband, Todd, is completely paralyzed due to ALS, we chose games in which he could participate. Apples to Apples worked well for him. I set his cards in the game’s box top, and he told me which card to…
My Facebook friends post accomplishments like completing a 5K run. If I were to post my accomplishments, I would include taking my husband, Todd, to my daughter’s school concert. Going on a simple family outing with ALS can be challenging. With about 200 inches of snow falling annually, traveling is…
I tell potential customers that my Christmas wreaths will last until Easter. That usually gets a chuckle and often a sale. At a holiday craft fair, a gray-haired man topped my claim: “I bought one from you last year, and I just threw it out last week.” Longevity is an…
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