Columns

Big news buzzed through the ALS community last week about AMX0035, an investigational treatment for ALS that just finished a Phase 2/3 clinical trial. Early results indicated that AMX0035 slowed the progression of ALS symptoms. Although discovering a cure for ALS is still the ultimate goal for…

Perspective can be hard to come by with ALS, but writing has helped me keep my head above water. I’ve kept a journal since I was a kid. I wrote my way through teenage angst, my musings during my college years, the challenges of trying to help the teens I…

All around me, I’ve been noticing how people, businesses, and organizations are pivoting to survive these challenging times. We’re getting confident using Zoom, dine-in restaurants have expanded their takeout business, and ALS fundraisers are holding online events. I love seeing all this successful pivoting. It gives me hope. Pivoting,…

My husband, Todd, and I celebrated our 17th wedding anniversary in late August with a date at Fitzgerald’s, a restaurant built on the shore of Lake Superior in Eagle River, Michigan. A permit to build on a beach would never be approved today, but it could be done in…

Looking forward to getting a flu shot is something I never thought possible. But at this point in what has been a very strange year, it’s a darned good excuse to get out and do something. In past years, I followed health guidelines and always waited until early October…

In his book “Out of Solitude,” Henri Nouwen writes, “When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch…

Just like Lionel Barrymore as James Temple in “Key Largo“ and Gary Sinise as Lt. Dan Taylor in “Forrest Gump,” I survived a hurricane wheelchair-bound. Unlike the original works that those two movies are derived from, my hurricane…

Recently, I noticed I was having problems keeping track of time. Not clock time, as in being a little early or showing up too late. But calendar time — the past weeks and months of living in lockdown have caused my days to morph together. I knew I was doing…

“That’s the one project I wish I could have finished,” my husband, Todd, said while looking out a window at Comet’s doghouse. He had expressed similar sentiment on other occasions over the last few years. After Todd was diagnosed with ALS, we sold our house in southeastern Wisconsin and built…

Last week, I ended this column with a tongue-in-cheek inference that in deference to an improbable ALS curse befalling me, I would not share two near-disaster experiences anytime soon. This week, I am reneging on that prediction with the following disclaimer:…