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As I prepared to shower my husband, Todd, who is paralyzed due to ALS, I asked his smart speaker to play “Hurt” by Johnny Cash, and after that finished, I asked it to play similar songs. As I shaved Todd’s head, a song I’d never heard before came…

Today is my late husband’s 66th birthday. ALS took Jeff from our family just five days after he turned 60, and only 19 months after his diagnosis. Hearing the words, “This is ALS,” in the fall of 2018 was shocking and unbelievable. The early weeks and months after his…

In a recent episode of the “Hidden Brain” podcast, behavioral scientist Dave Evans discussed radical acceptance. He described his 69-year-old wife, Claudia, receiving a terminal cancer diagnosis and how they chose to skip the denial, anger, and depression that often come with grief. They moved straight to acceptance, allowing…

I spent five days last week corresponding with a fellow ALS patient in the U.K. We met during a unique online event that reminded me that, while this disease can feel isolating, the ALS community wraps all the way around the globe. Beyond the connection, I walked away with…

Getting out of the house is always a challenge because my husband, Todd, has ALS and needs care almost 24/7. I never know if I’ll make it to my Monday night ukulele group. When I do, I’m usually rushing to feed Todd, help him in the bathroom, and get…

As soon as I reached for the sock, I knew it would fall to the floor. And it did. I retrieved it by slowly bending sideways in my chair, stretching my arm in its direction, and with a mighty oomph, finally seized the soft fabric. That was just one speed…

After my husband, Todd, got ALS and I became his caregiver, I turned to reading and writing as a way to cope. Reading helps me make sense of life, or sometimes just step outside of my life for a while. Writing helps me sort through what I’m thinking and…

In the early, scary months after my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I started to realize that I had no idea what we were up against. At almost 50 years old, I’d heard of ALS only through the Ice Bucket Challenge and…

When we got our goldendoodle, Comet, as a puppy almost 13 years ago, my husband, Todd, walked him around our property line to train him to stay close to home. After Todd became unsteady on his feet, he tooled around our yard on a scooter with Comet riding between his…

I’ll admit that there were times when I simply wanted to toss my ankle-foot orthoses (AFOs) into the trash bin and be done with them. In the early years after my ALS diagnosis, those braces represented one more massive change in my life that I had to learn to…