Last week, I fully intended to write a new “Living Well With ALS” column. I sat down, flipped open my laptop, gazed out the window, and got lost in a stare. As the minutes ticked by, my computer screen finally clicked off, my mind blanked out, and I had…
Do you have an ALS “inspiration folder?” I do. And I just added another name to my ever-growing list. Even though most people in my folder don’t have ALS, what inspires me is that despite their dire circumstances, they dare to have goals and find ways to…
A few days ago, a friend asked if I’d made any New Year’s resolutions. “No,” I replied, shrugging. Then I changed my mind and answered “yes.” Seeing her bewildered expression upon my contradictory response, I knew I had to explain. I used to enjoy the tradition of making resolutions every…
I named my column “Living Well with ALS” for many reasons. The most important one was that each word in the title had a deep meaning for me. Six years ago, when Bionews, the parent company of this website, invited me to write a patient column for…
Something was missing from the packet of patient information my doctor gave me on the day she told me I had ALS. But I didn’t discover that missing item until 12 months later. Why? During those months, even though I was adapting as best I could — such as…
Like many ALS patients, I had a difficult time accepting assistive devices into my life. In my case, a pair of ankle-foot orthoses (AFOs), a rollator, and a mobility scooter challenged my adaptability and sense of myself. But over time, with lots of persistence and support from my caregiver…
Dear Santa, here’s my special wish list for the holiday season. I’m not asking for toys or special treats, just your help in making my holiday social events blend better with my life with ALS. Specifically, I’m hoping you can help me when I attend social gatherings, dine in…
Can it be that we were cheering on athletes at the Olympics only a few months ago? Where did the summer go? Looking back, I realize I spent most of my summer and early fall months distracted by the hoopla of world and national events, and now I’m exhausted. I’m…
I collect drinking straws. Not just any old straws, mind you, but long, wide-barreled plastic straws. My assortment includes several unusual straws as well, and they all help me drink beverages with ease even though I have dysphagia, or difficulty swallowing — a symptom of ALS. As I wrote…
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…
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