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.
Two years after my husband, Todd, was diagnosed with ALS, I read an article that gave me hope. An Israeli rabbi who had ALS saw improvement with NurOwn, an experimental stem cell treatment by BrainStorm Cell Therapeutics. The man went from being in a wheelchair to walking. I…
In the summer of 2014, people across the world dumped water over their heads in the ALS ice bucket challenge and shared videos of the experience on social media. Our son, Isaac, who was 4 at the time, did it, saying, “I’m having my aunties and uncles do the…
Life is unpredictable. People get in car accidents. They have heart attacks. Tornadoes strike. I recently saw a viral video in which a rabid bobcat attacked a woman outside her home. We never really know what will happen next, and yet, we humans usually live with optimism for the…
My husband, Todd, and I had our second doses of the COVID-19 vaccine last week. The side effects from the first shot hadn’t been bad for either of us — just minor headaches — but the second one hit us harder. Todd woke with extreme chills at 2:30 a.m.
Family movie nights are great, but it’s a challenge to think of other things we can do together now that my husband, Todd, is paralyzed from ALS. I’ve long had a love-hate relationship with screens. I once envisioned myself as a mother who would encourage creative, independent play. My…
I think a lot about how a parent’s ALS affects kids. Recently, an online friend lost her husband to ALS. She has small children and has been posting about their grief and the tender questions her kids have asked. It’s difficult enough for an adult to process the pain of…
After my husband, Todd, was diagnosed with ALS, we thought he would have at most five years to live. We started with only two major goals: take a family vacation together with our toddler and preschooler, and build an accessible home. We did both of those things within the…
“What the heck happened to that guy?” a young boy called loudly to a woman leading him and other preschool children across the parking lot. I was loading my husband, Todd, into the back of our accessible van, having just gotten our COVID-19 vaccinations. It was the first time…
I gave up social media for Lent. Many Christians deny themselves some pleasure or refrain from a vice or a bad habit for a period of preparation and reflection in the weeks leading up to Easter. It seemed like a good time for me to take a break from my…
Sometimes little things push me over the edge. One morning last week, I was already cranky because I had burnt the oatmeal. The smell followed me, lingering in my hair as I drove the kids to school. After I dropped them off, I stopped by a store on the way…
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