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.
It’s time again to send our annual Christmas letter and picture card to our friends and family. Since my daughter could talk, I’ve kept a list of cute things the kids say throughout each year. I pick the best to include in our letter. When Sara was 2, we…
On Saturday morning, I lay cuddled next to my husband, Todd, in bed. I could feel his thigh muscles pulse against my leg, misfire after misfire. I wished I could will the fasciculations to stop. When I washed him and changed his shorts, I was struck by how thin his…
I cried as I listened to an episode of the “Everything Happens” podcast. Writer Samantha Irby described growing up with sick parents. When she was 9, her mom was diagnosed with multiple sclerosis, and her dad struggled with heart problems for years. They both died when she was…
I’ve written before about how the world has been shrinking for my husband, Todd, and me. Some activities, such as going on vacation or visiting people in their homes, became too difficult, even before social distancing mandates, due to Todd’s worsening ALS symptoms. But we still made an effort…
My office offers retreat, in that it only has wall décor we acquired before ALS upended our lives. Over my book case is a framed painting of Maine’s Bar Harbor that my husband, Todd, and I bought on our honeymoon. We purchased the piece from a local artist who then…
Last week, we had an early snowfall, even for Michigan’s Keweenaw Peninsula. Snow frosted the tips of trees and blanketed the grass, leaving small bits of green peeking through. I posted a picture on social media and wrote, “It’s beginning to look a lot like Christmas. Gearing up for…
I asked my husband, Todd, why he thought our relationship worked as well as it does. I was preparing to write a column about how we still love each other through the stress of living with his ALS for a decade now. It would be understandable for him to…
We had an unseasonably warm fall day while Todd’s sister was visiting from out of state last week. I asked Todd if he’d want to head down to McLain State Park just 15 minutes from our home. “I suppose,” he said somewhat reluctantly. He wanted to be social even…
We had snow in the air last week, reminding me that Christmas is coming, and with it, one of my favorite creative projects: wreath-making. I’ll start clipping the Fraser fir boughs and assembling the wreaths in November, but in the meantime, I’ve been gathering pine cones. I’ve been wiring…
On most days, I walk three laps around the fields on my mom’s property next to my home. My stress diminishes as I drink in the natural beauty while exercising. I stop and smell apple blossoms in the spring. I pause to snack on early summer sugar snap peas…
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