Living with ALS for the past 14 years has taught me an important lesson on adapting to a new way of life. Before ALS, my life was filled with carefree movement. I spoke with ease and enjoyed endless physical energy. Now, even though my…
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In the wake of ALS loss, certain touchstones bring comfort every time I think of them. This includes small things like funny photographs, private nicknames, and sentimental gifts. In grief, even a favorite old coffee mug can bring immeasurable joy. I have one additional beloved thing, too: a quotation…
Once when my daughter, Sara, was a baby, I made a mistake that led to a moment of sheer panic. After setting up her jogger stroller next to the car and strapping her in, I dug through the diaper bag that was still in the vehicle to get some…
ALS has taught me many life lessons, and one of the most important ones is to never give up. Recently, though, I was put to the test by a very sticky strip of Velcro. The episode became a metaphor for how easy it is for us ALS patients to…
One of my favorite Christmas gifts this year was balsamic vinegar — two bottles, actually — that my husband, Todd, gave me. Todd has ALS and is paralyzed, so he spends time watching YouTube videos about various subjects. A couple months ago, he came across a video that explained…
I love it when all of my planning unfolds exactly as expected, and at the end of the day, I can pause to exhale, smile, and tell myself, “That went extremely well.” I wasn’t always an avid planner, but I’ve become one. Planning is just one of the many…
A memory from 12 years ago popped up on my Facebook feed. It was a video we had made for a benefit my husband’s co-workers organized for him after his ALS diagnosis. “When I was diagnosed I thought of Danny,” Todd says at the start of the video, accompanied…
I’m not a big believer in making New Year’s resolutions. There’s something that feels bad about setting a goal that’s lofty — learning a new language is one of my perennial favorites, for example — and then not accomplishing it. Plus, I keep a daily to-do list that includes some…
Is anyone else bombarded by social media messages to set goals, make New Year’s resolutions, or create a bucket list for 2024? I sure have been. In my pre-ALS days, I heeded the reminders. I looked forward to breaking in a brand-new desk calendar and filling it with my…
Accidents can and will happen. Do you have a plan for when they do? The two accidents I’ve feared the most since being debilitated with ALS are getting scalded in the shower and smashing my toes against the wall or any other object when I’m in my wheelchair. I…
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