I recently listened to an episode of Oprah’s podcast featuring Emma Heming Willis, whose husband, actor Bruce Willis, was diagnosed with frontotemporal dementia (FTD). She wrote a book called “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.” FTD and ALS are closely related: About…
When my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I’d heard of the disease only peripherally. Like many, I’d completed the Ice Bucket Challenge in 2014 without an inkling that someday this disease would affect someone I loved. Swept up in the momentum…
I’m always on the lookout for strategies that will help me make my life with ALS go a little bit smoother, and I’ve recently found a new one. It’s easy to do and, most importantly, it adds a layer of calm to my days. It might surprise you when…
After my husband, Todd, was diagnosed with ALS, I was shattered and desperate to connect with others who might understand the pain I was feeling. I searched online for a local grief group and found one that met at a nearby church. But when I called to ask about…
I’ve been helping my husband, Todd, ever since he was diagnosed with ALS more than 15 years ago. It started with me buttoning his dress shirts before he went to work, and then I helped him shave. Eventually, he needed my help with eating, toileting, showering, scratching itches, adjusting…
During the first year after my ALS diagnosis, I was overwhelmed by the physical changes I was experiencing as I learned to eat, move, and speak in new ways. One of the most significant developments was the impact ALS had on my perception of time. It was as if…
Yesterday was my wedding anniversary, the fifth one I have spent without my late husband, Jeff, who died of ALS in 2020. Jeff Sarnacki’s daughter, Makelle, holds her daughter while enjoying a show at Walt Disney World’s Magic Kingdom in October 2025. (Photo by Juliet Taylor) In the…
I wish I could shake the sadness I feel as my husband Todd’s caregiver after 15 years with ALS. There’s been a cloud over our lives since his diagnosis, even when his only physical symptom was a weak arm. Living with ALS has taken a toll on both…
I’m sure we’ve entered the spooky season, a time when doing simple, normal activities feels more like a trip through the local haunted house. Goblins lurking in the shadows are ready to do their mischief. Who knew I’d find one hiding in the accessible stall of a restaurant’s restroom? But before…
Last week, my husband, Todd, celebrated his 55th birthday — a milestone we never anticipated after he was diagnosed with ALS at age 39 in June 2010. For his 40th birthday that October, I asked friends and family to send me pictures and their favorite memories with Todd, and…
