Living Well with ALS - a column by Dagmar Munn

Happy October, everyone! It’s time for a mini-celebration. During this crazy year, each new month means more of 2020 is behind us. We have all undergone change over the months, especially those of us facing the challenges of ALS. However, our changes extend indefinitely. Maintaining my resilience is a priority.

My heroes and role models come in all shapes and sizes. For example, Ruth Bader Ginsburg, who stood barely 5 feet tall, has always held a mighty spot in my mind. Best known as the second woman in U.S. history to be appointed a Supreme Court Justice, I admired…

Hang on tightly, it’s another week of weather events, news alerts, and a continuing health crisis. I feel like I’m riding on a big airplane flying through rough turbulence. Certainly, living with ALS has taught me I can’t control the jiggles and the bumps, but I can control how I…

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…

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,…

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…

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…

What a long, crazy summer it’s been, as we’re living with minimal social interaction and long periods of isolation. Parts of our lives have changed without our consent, and we have to be on the lookout for developing symptoms. And those are just the challenges of living with ALS…

Racing thoughts, runaway thoughts. Whatever you call ’em, I caught ’em. Yup, a case of full-blown, out-of-control, runaway thoughts. I hadn’t had them for years — not since the day I was told I had ALS. And then, like most newly diagnosed patients, I spent weeks and months imagining the…

Last week, I had the pleasure of joining the Fox Valley/Lakeshore ALS Virtual Support Group in Wisconsin as their guest speaker. We had fun discussing ways to reduce stress during the ongoing crisis while we live with our ALS. During my presentation, I shared one strategy…