Joyful Sorrow — Kristin Neva

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…

After my husband, Todd, was diagnosed with ALS, we moved closer to my parents because we knew we’d need their help as the disease progressed. We built an accessible home on the spot where their old barn had stood when I was growing up. We weren’t sure how much…

“You really have everything figured out,” one of my husband Todd’s new caregivers said as I was helping her transfer him into bed using his overhead lift. We’ve been managing ALS and paralysis for a long time, and we continue to improve our processes for Todd’s nighttime care.

A week ago Wednesday, on the 15th anniversary of his ALS diagnosis, my husband, Todd, had a dentist appointment. He dreaded the outing because he’s paralyzed below the neck, uses a power wheelchair, and needs breathing support. He hadn’t rolled outside of the house, not even to…