I remember the first caregiving task that I completed for my late husband, Jeff, after he was diagnosed with ALS in the fall of 2018. His symptoms had started with a foot drop, and by the time of his diagnosis, his right foot had become paralyzed. It became my…
Having ALS is certainly no laughing matter. But I’ve found over the years that it can give rise to many humorous moments. On some days, in fact, finding the funny while in a frustrating situation has been one of my best coping strategies. That’s why I was taken aback to…
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…
“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…
