One of the interesting mental challenges I continue to experience as I live with ALS is its effect on my perception of time. The predicted prognosis of living only two to five years after symptom onset is a shadow that hangs over every ALS patient. Even though I’ve broken that…
When my doctor told me that I had ALS, my reaction was like that of most newly diagnosed ALS patients. I felt a jumble of emotions and desperately wanted to let my friends and family know — but something held me back. Deep down I knew that when I…
Fire the flare guns, turn on the ship-to-shore radio, and holler “Mayday! Mayday! Mayday!” That’s the first order of business for a ship that’s sinking. It needs attention — lots of attention. There’s even an official mayday relay procedure, which lets ships in the vicinity take turns relaying the distress…
The other day when I sat down at my computer, I discovered a small, beige envelope that had been left near my workspace. To my surprise, inside was a letter addressed to me from the rollator that helps me live with ALS. After a quick read of the note,…
Some days, my motivation just gets stuck. Even though I’ve got interesting plans and projects to do, I can’t get started on any of them. The reasons why can include not getting enough hours of sleep the night before, being caught up in the latest news cycle, or simply reflecting…
The other day, my husband spotted me putting on my sneakers while using a long shoehorn and asked, “Wouldn’t that be a lot easier if we got you a pair of those new step-in shoes?” I’ll admit that living with ALS has me continually thinking of ways to make…
I realize that the words “goals,” “improvement,” and “ALS” don’t always appear in the same sentence, but for me, they do. That’s because, over the past few years, I’ve followed a strategy of setting personal fitness goals and using my ALS clinic appointments as the mile markers for those…
If you’ve been keeping up with my recent columns, you’ve likely figured out that even though I have ALS, I maintain a glass-half-full attitude. So, today, I thought you’d enjoy learning how I deal with what has been a constant challenge for me: plastic bottles. The trouble with plastic…
The phrase “stay in your lane” is often posted on signs to help motorists drive through a construction zone. It’s also a basic rule when swimming side by side in a race with other competitors. In my life with ALS, I use one of the other meanings of the…
I’ve been living with ALS for the past 15 years, and although it’s filled my days with life lessons and moments of gratitude, there have also been many twists of irony. One of the biggest ironies? I sometimes feel out of place in a community that’s so warm and…
