I used to take for granted my ability to sync up with the people and events in my life — to keep up with conversations, move in unison with my fellow dancers, and show up on time. But that was before ALS waltzed into my life. At first, the…
Navigating life with ALS is a journey, and for many of us, it comes with an extra passenger: health anxiety. Before my diagnosis, I thought my good health would continue forever. But now, along with learning to live with ALS, I also deal with a mild case…
Living with ALS presents many challenges. For me, navigating life with a rollator, thickened beverages, and daily medication often feels like an uphill battle. There are days I wish I could go back to a simpler time, before ALS moved into my life. But since turning back the clock…
Toilets aren’t one of the topics that come up in most conversations, but for those of us living with ALS, it’s fairly common and not at all embarrassing. We’ll often chat about the use, style, and cost of electric bidets, for example. I’ve been using one for several years…
For the first few years after I was diagnosed with ALS, I followed a daily routine of walking laps in the shallow end of our neighborhood outdoor pool. I soon became friends with a group of women who used the pool at the same time as me. I’ll always…
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…
