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Getting good sleep is challenging with ALS

Handling night care has been one of the hardest parts about managing ALS for my husband, Todd, but now I’m hopeful because he’s been training himself to sleep on his back. Todd has been a side sleeper, and for years he had to be turned from side to side…

The sensation of a hum was one of my early symptoms of ALS

Hmmmmm. That’s what my body feels when it’s doing its “humming thing.” It’s an all-over buzzy sensation that I chalk up to being another quirky symptom of my ALS. It’s a feeling I’ve never mentioned during my ALS clinic visits, mainly because I want to keep the visit rolling along…

Recognizing the signs of angels who walk among us

A few weeks after my late husband, Jeff, was diagnosed with ALS in 2018, we were sitting in our primary care doctor’s office to talk. We’d just received a second opinion confirming the diagnosis, and we were reeling. I remember how brutal the appointment felt for all three of us.

I choose to be optimistic, even though I have ALS

One day, about four years after my diagnosis of ALS, I began having trouble pronouncing words. My tongue felt thick and couldn’t form words at the speed I was thinking them. My speech came out garbled and my brain hurt from trying to overcome the disconnect. At the time,…

ALS and the heavy burden of grief

It was six years ago last week that my late husband, Jeff, and I sat in a neurologist’s office in Maryland as the doctor said, “I believe that this is ALS.” Moments before, I’d been watching the doctor administer a second electromyography (EMG) on Jeff, who found the procedure…

Good memories sustain us when life with ALS is hard

I like the Maroon 5 song “Memories” because I’m soothed by the melody, borrowed from Johann Pachelbel’s Canon in D, and I’m moved by the lyrics. One line in particular resonates with me: “The memories bring back you.” Though my husband, Todd, is still with me,…