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…
“I still can’t understand you. Say it one more time.” My husband and I were having a simple conversation, and I was trying to emphasize my point of view, but my mouth and tongue simply wouldn’t coordinate. Instead of pausing to slow down, I just kept repeating the same garbled…
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…
I used to take for granted my ability to sync up with the people and events in my life — to keep up with conversations, move in unison with my fellow dancers, and show up on time. But that was before ALS waltzed into my life. At first, the…
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…
Navigating life with ALS is a journey, and for many of us, it comes with an extra passenger: health anxiety. Before my diagnosis, I thought my good health would continue forever. But now, along with learning to live with ALS, I also deal with a mild case…
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…
After the loss of my beloved dog Rudder when he was 12 years old, a close friend observed with concern that she hadn’t seen me cry. It was true, I hadn’t shed any tears publicly, and even privately I sat with my grief quietly and alone. Rudder had gotten me…
“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.
