I realize the words “ALS” and “humor” don’t always hang out together, but in my life they often do. I’ve been living with ALS since 2010, and over the years, I’ve learned not to let a day go by without finding humor in the absurdity of it all. Most of…
“Does caregiving for ALS ever get easier?” I pondered the question someone had posted on social media. I couldn’t sleep for days after my husband, Todd, was diagnosed. I was consumed with anxiety and fear for the future. How was I going to parent our children as a single mom?…
When I was in elementary school, my mom would occasionally take my brother and me to Woolworth’s, our local five-and-dime store. We would often have lunch there, and my staple was the open-faced roast beef platter, followed by a hot fudge sundae. Afterward, my brother and I were left…
Living with ALS has its challenges. For me, the first year after my ALS diagnosis was the hardest. Looking back, I made some mistakes and wasted time and energy that I wish I could have back again. Although we each experience a different journey with ALS, I believe we all…
When our kids started school this fall, I had a sense of relief that my husband, Todd, made it to see our youngest begin middle school. He’s now at the same school campus as our 15-year-old daughter. I’m glad we’re dealing with a school transition while Todd is still with…
“Fear takes control — fear of the unknown Aware of what will hurt you You’re prepared to remain this way So sad yet safe with your afflictions Afraid to start a brand new day.” Those lyrics from the song “Fear (Of the Unknown)” by British alternative band Siouxsie and…
I inspected the fish through the curved glass of a refrigerated display case. Wild-caught Lake Superior whitefish and trout — both raw and smoked — lay in metal trays. “I’d like that piece of smoked trout in the middle. Underneath the top one,” I specified. I picked a plump…
“Just what makes that little old ant Think he’ll move that rubber tree plant Anyone knows an ant can’t Move a rubber tree plant But he’s got high hopes …” — Frank Sinatra, “High Hopes” Recently, I watched the movie “A Hole in the Head” for the first time…
Even though I believe I’m a pretty good planner and can strategize with the best of ‘em, last week threw me into a planning frenzy. I was anticipating my first in-person ALS clinic visit after nearly a year of online appointments with my neurologist. Pre-pandemic, I had many in-person…
I watched a tribute video to a husband and father who recently died from ALS. Tears filled my eyes over tender moments of a toddler kissing and hugging his dad, jumping on his lap, and driving matchbox cars on his head while the dad smiled. The man radiated love for…
