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When my husband Todd’s new power wheelchair was delivered, he tried a device that allowed him to control it with his eyes. It included software running on a tablet computer and an eye-tracking system mounted to the front of the chair. He found the system frustrating because he was…

My husband, Todd, and I work on New York Times puzzles while we eat breakfast. I sit next to him and feed him bites of his breakfast while I eat, too. One puzzle we work on is the Spelling Bee, where we earn points by forming words from seven different…

“Be like a duck: calm on the surface, but always paddling like the dickens underneath.” That was an ongoing joke shared among my fellow hospital department managers during my working years. It’s a quote often attributed to actor Michael Caine, and it perfectly represented our mindset: putting on…

After living with my husband Todd’s ALS for more than 15 years, shouldn’t I be better at navigating this disease? Author Malcolm Gladwell popularized the idea that mastery comes after 10,000 hours of doing something. If that’s true, then surely I should have ALS figured out by now.

I’m not a pushy person. OK, maybe I’m pushy when I really have to be. Usually, I’m willing to adapt, adjust, and endure the many small daily challenges that come with living with ALS. But when it comes to lacking the proper modifications for my specific symptoms, I’ve…

In 2021, I participated in a Zoom meeting about ALS community engagement. My husband, Jeff, had passed away from the disease a year earlier, but I have remained involved in advocacy. It was during the meeting that I met a compelling young woman named Leah Stavenhagen. Then in her late…

The outside temperature was cold, just 15 F, but the sun was shining, so I decided to forgo my elliptical machine and instead walk down our country road. I checked on my husband, Todd, to make sure it was OK to leave, and then slid into my snow pants and…

I was recently asked: “If you could reduce uncertainty in one area of your life with ALS, which would it be?” I took a few moments to think, then blurted out: “Keep my current symptoms exactly as they are. No more changes, no more surprises.” What? No wanting…

There are both big and little losses that come with ALS, for the person with the disease and their family. Each stage of the disease brings something new to grieve. When my husband, Todd, was diagnosed in 2010, one of our biggest losses was the future that we…

“I don’t want to go to the doctor,” I said. “What if it’s something bad?” “What are you afraid of? What’s the worst it could be?” my wife replied. “ALS …” That was the first time I said those three letters out loud — half joking, half hoping that…