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.In the opening stanza of “For When People Ask,” poet Rosemerry Wahtola Trommer writes: “I want a word that means okay and not okay, more than that: a word that means devastated and stunned with joy. I want the word that says I feel it all all at…
We didn’t realize how much my husband Todd’s comfort depended on his custom-fit power wheelchair until he had to go without it. A few weeks ago, Todd, who has ALS, decided to order a new wheelchair after finding out that his 11-year-old Permobil C300 isn’t fully compatible…
Last week for spring break, I traveled with my son from snowy Michigan to sunny Florida. Siesta Key was just as beautiful as I remembered from 15 years ago when my husband, Todd, and I vacationed there with our two small children, along with Todd’s parents and my brother…
It’s hard to live in limbo with the slow but relentless progression of my husband Todd’s ALS. A couple years after Todd was diagnosed, he went on permanent disability from his work. He could still speak and had the time, so he visited my great-uncle nearly every day…
After decades of classic cross-country skiing, I realized that the groomed track is too wide for me, and it got me thinking how difficult it is to find single solutions to help everybody with ALS. We had springlike weather this past week in Michigan’s Upper Peninsula, and I got…
“I can’t believe I could’ve had longer footrests this whole time,” my husband, Todd, said this morning as he peered down on his wheelchair while I transferred him using our overhead lift. “I’ve been so nervous about my toes, especially now that I’m having such a hard time driving.” Todd…
It’s become exceedingly difficult for my husband, Todd, to leave our home now that he’s in an advanced stage of ALS. His neck is weak because of disease progression, and he uses noninvasive ventilation nearly all the time. To make matters worse, we live in a northern climate with…
Lines from a Shania Twain song have been running through my head the past few days: “You’re still the one I run to/ The one that I belong to/ You’re still the one I want for life.” The lyrics remind me of how my husband, Todd, and I…
It’s been a rough couple weeks since my husband, Todd, came down with a respiratory illness. The first weekend was the worst, with nausea, fever, chills, body aches, and chest congestion. By day four, he was able to eat a bit, and he spent longer stretches of the day…
“I’m not going to write a column this week,” I told my husband, Todd. “All I can think about is that you’re sick, and I don’t know how it’s going to turn out.” Todd came down with a bug a few days ago. He’s had body chills, aches, and congestion.
