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About four years ago, I began to be overwhelmed with sadness about my husband’s continuing decline from amyotrophic lateral sclerosis (ALS). Todd and I have often said that if the disease progression would just stop, we could adjust. But managing ALS only becomes more stressful as time goes on,…

“I been one poor correspondent, and I been too, too hard to find But it doesn’t mean you ain’t been on my mind.” In retrospect, I fear that much of my life has resembled that stanza from the band America’s second Billboard No. 1…

I spent most of my life following daily habits and routines that shaped my perspective about how life ought to be. When ALS appeared, it brought change and created imaginary roadblocks in my mind. I didn’t want things to change, to learn new habits, or to adapt to my…

“You hold the key to love and fear All in your trembling hand Just one key unlocks them both It’s there at your command Come on people now Smile on your brother Everybody get together…

Recently, a journalist and author from New York contacted me about a book he’s working on. His theme is the role that humor plays in helping people cope with a wide variety of diseases, disabilities, and physical conditions. He wanted to include my ALS-related experiences, and I gladly agreed to…

I’ve been preparing for winter. I drained the hoses and hung them in the garage a few weeks ago. We used the lawnmower to pull Comet’s doghouse from our backyard to the front porch, where he will still be able to get into it after the snow accumulates. I called…

“All our times have come Here but now they’re gone Seasons don’t fear the reaper Nor do the wind, the sun, or the rain We can be like they are.” I was 18 years old when the band Blue Oyster Cult released the song “(Don’t Fear) The Reaper.” Coinciding…

“Your YouTube channel must be taking off,” my 15-year-old daughter said. “Your edema video was recommended to me again. I was just scrolling through YouTube, and then I see it, and I’m like, ‘What’s this?’” Sara continued with increasing volume: “Oh, that’s my father’s foot! My father’s foot has…

“All the Bush League batters Are left to die on the diamond In the stands the home crowd scatters For the turnstiles.” Twice in my post-ALS life, Neil Young’s song “For the Turnstiles” has struck me smack dab in the center of my forehead. As the dust finally settled…

When I learned I had amyotrophic lateral sclerosis (ALS), my whole world changed. My husband’s world changed, too, as he suddenly found himself in the role of being my caregiver. For some ALS patients and caregivers, the new responsibilities that follow a diagnosis begin almost immediately. Ours followed a slower…