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.A friend who stopped by for a visit last weekend asked my husband, Todd, “Anything new?” “Not really,” he said. “So no more choking incidents?” she asked. “There have been choking incidents, and Kristin has to clear my lungs every couple days,” he replied, “but you asked if there was…
Before my husband, Todd, had ALS, he enjoyed cooking. He often made omelets on Saturday mornings. He was skilled with a chef’s knife and cut ingredients quickly and finely before cooking the egg to perfection. I miss eating his omelets. Although I do all the actual cooking now,…
Last Sunday, on the morning of our 22nd wedding anniversary, as I was getting my husband, Todd, out of bed, he asked if I’d heard the song “To Build a Home.” I hadn’t. “Alexa, play ‘To Build a Home‘ by the Cinematic Orchestra and Patrick Watson,” Todd said.
I was on schedule Monday morning to get out the door by 11:45 until I had an unwelcome visitor. I had a noon appointment for something that would be difficult to reschedule, so I got my husband, Todd, out of bed early. I parked his power wheelchair at his counter-height…
I was recently asked, “What can I do to support someone diagnosed with ALS?” I thought back to the days after my husband, Todd, was diagnosed with the disease. We knew little about it, except that it resulted in paralysis and usually death within two to five years.
When I checked my email last Wednesday morning, I was delighted to see a message in my inbox titled “Birthday Memories.” It was from my husband, Todd, who was still in bed sleeping; he must’ve scheduled the email to surprise me on my 48th birthday. I sat down with my…
Thirteen years ago, we built an accessible home to accommodate my husband Todd’s progressive disability due to ALS. A general contractor supervised much of the construction, but we took on some of the work, including the landscaping. Todd was shaky on his feet and his arms were weak; nonetheless…
It’s hard to believe my husband, Todd, has been living with ALS for over 15 years. His limbs are completely paralyzed, and he uses a noninvasive ventilator nearly 24/7. He can still talk and eat, though not without difficulty. When people with ALS — or those who have a…
After my husband Todd’s ALS diagnosis in 2010, we regularly monitored the forced vital capacity (FVC) of his lungs. This was because the neurologist at our ALS clinic had told us that if Todd wanted to get a feeding tube, he’d need to do it while his FVC was…
In 2012, two years after my husband, Todd, was diagnosed with ALS, he and I made a trip to a larger town a couple hours away to pick out fixtures and appliances for our new accessible home. After purchasing the items and scheduling the delivery, we headed back to…
