“I didn’t even know ALS existed until I was told I had it.” That’s what most patients say when telling their ALS story. I said the same thing when asked to share my story at an event in 2010, and I hear the same thing from others today, 11 years…

Sometimes you get lucky and life gives you a break, which is not always the norm for someone living with ALS. The past two weeks have been rather fun for me, thanks to a suggestion that I begin using a portable microphone. I have written about my challenges…

In last week’s column, I wrote about a gala banquet that I recently attended. As the event approached, I worried about what I would wear and how others would react to my mobility scooter. But my greatest concern was that I was one of the evening’s honorees. The…

“It was easy, fun, and I’d do it all over again.” I know those are not the typical words used by someone who just finished participating in a research study, especially one focused on ALS. But that’s exactly how I felt last week when I pressed the submit button…

For those of us living with ALS, every day can have a stressful event. The key, I believe, is to get through the event and, if possible, remember it later with humor. Even in a parking lot. “Let’s circle the parking lot one more time,” my agitated husband said.

Adapt, adapt, adapt! Readers of this column know that’s one of my favorite mottos. I depend on it, especially because I live with ALS. It helps me deal with the condition’s ongoing changes and keeps me moving forward. But sometimes I have to push back. And when…

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…