Life at home with ALS becomes like “Groundhog Day,” the 1993 film starring Bill Murray, in which the main character, Phil, is stuck in a time loop and is forced to live the same day over and over. But there’s something in us that craves novelty, and Phil goes…
Joyful Sorrow — Kristin Neva
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.
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Last night, I had a dream in which my husband, Todd, did not have ALS. It was a bit of sweet respite from my day-to-day life, and I woke up missing that old version of us. In real life, I am Todd’s caregiver. He is completely paralyzed and needs…
As I drove through town, I cringed reading a church’s changeable-letter sign: “Be thankful for everything that happens to you. It’s all part of the experience.” There’s scientific evidence promoting the benefits of gratitude, so I try to practice it, but I get tired of counting my blessings…
I’m a do-it-yourself kind of gal. This has served my husband, Todd, and I well over the last 14 years as I’ve been his primary caregiver. We do not have an ALS clinic near our home, and our local neurologist moved away years ago, so we don’t have medical…
Sometimes I find perspective when I listen to other rare disease communities. ALS News Today is just one publication of its parent company, Bionews, which hosts more than 50 online websites devoted to rare and chronic diseases. Last week, I got on Cystic Fibrosis News Today to catch up…
Sometimes people reach out to me or my husband, Todd, to get our advice on building an accessible home. We share with them what we’ve learned over the past 14 years with his ALS and progressive disability. After Todd was diagnosed, we realized that we’d need to sell…
Handling night care has been one of the hardest parts about managing ALS for my husband, Todd, but now I’m hopeful because he’s been training himself to sleep on his back. Todd has been a side sleeper, and for years he had to be turned from side to side…
It’s hard for me to get away from home because I’m the primary caregiver for my husband, Todd, who has ALS. But I try to take daily walks in the fields and woods around our house, because nature feeds my soul. Last weekend, I managed to go to the…
I’m thankful for the way technology is developing to improve the quality of life for people with ALS, including my husband, Todd. Six years ago, I encouraged Todd to bank his voice while it was still strong. He signed up with one service and went to work recording various…
I like the Maroon 5 song “Memories” because I’m soothed by the melody, borrowed from Johann Pachelbel’s Canon in D, and I’m moved by the lyrics. One line in particular resonates with me: “The memories bring back you.” Though my husband, Todd, is still with me,…
This morning, while my husband, Todd, was sleeping in the next room, I read a few chapters of Brian Jeansonne’s new memoir, “Onward Forward — My Journey with ALS,” in which he examines with vulnerability and insight his life with the disease. In Chapter 11, Jeansonne, a spiritual…
The other day I was using the brush hog on my tractor to mow a field when I noticed that the air conditioning wasn’t working. It was hot in the cab, but not unbearable, so I continued mowing, thinking I’d get it checked the next time I had the…
On a beautiful fall evening recently, my son had a junior varsity football game. I prepared to go by helping my husband, Todd, clear his lungs again in the bathroom, and then I set him up at his computer. He couldn’t go with me because he is paralyzed and…
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