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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…

The phrase “bucket list,” which has become popular in today’s culture, refers to a set of experiences or activities a person hopes to accomplish before dying. These might include visiting the Grand Canyon and skydiving, for example. While it was further popularized by the 2007 movie of the same name,…

Wake me up if Todd is in distress,” I said to his nighttime caregiver. “Of course,” she replied. It’s not something I typically say to one of my husband’s regular caregivers, but I felt on edge. I said good night and tried to get some rest, but my mind was…

I have to confess: I envy people who multitask. It is something I used to do with ease, but ALS has firmly put those days in the rearview mirror. It’s not even that I am “tasking” much these days; I find myself simply reminiscing about the times when I…

My husband, Todd, finally got in his new wheelchair! After it was delivered in September, I wrote that we needed to have the attendant control reprogrammed. That finally happened, and we’ve been fine-tuning the chair over the past week. Although both are the same brand, there are differences between…

For most people, February is a month filled with hearts and flowers. But for me, it’s all that plus a vibrant display of ALS zebras and a splash of green, pink, blue, and purple. Zebras? You might wonder what a striped animal has to do with a neurological disease…