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…
Columns
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…
Once in a while, there’s a topic on the ALS News Today Forums that inspires a new column. The question posted was a simple one: “Do you celebrate ALS-related anniversaries?” I intended my reply to be just a simple “Yes.” But I ended up adding, “However, what I…
“What do you think about having one thimbleberry design on one side of a mug and a different one on the other?” I asked my husband, Todd. We’d been brainstorming ideas for some print-on-demand items that I might try selling. Todd has had a fixed income ever since he was…
My frustration brought me to tears today, and I had to take a step back and remember to care for myself in addition to caring for my husband, Todd, who has ALS. Todd’s new wheelchair was delivered today, and like the one he’s been in for the past 11…
Last week, I opened my inbox and an article from ALS News Today caught my eye. The story, “Maximizing lung function with ALS,” explained how patients can proactively manage their lung health while living with ALS. After reading it, I pumped my fist in the air, a…
Autumn has a very specific feeling where I live on the Eastern Shore of Maryland. Right now, the daylight is getting shorter, the temperature is more brisk, and the lush greens of summer have given way to more muted hues as leaves get ready to change color and fall from…
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