Living Well with ALS - a column by Dagmar Munn

This summer, I’ve been superfocused on a special fix-up project — namely, my posture. Why? Because earlier this year, whether I was sitting, standing, or walking, I noticed a slow slump forward of my upper body. Oh, I’d always begin sitting tall, but somehow, I’d morph into a shorter me.

Having ALS is certainly no laughing matter. But I’ve found over the years that it can give rise to many humorous moments. On some days, in fact, finding the funny while in a frustrating situation has been one of my best coping strategies. That’s why I was taken aback to…

“I still can’t understand you. Say it one more time.” My husband and I were having a simple conversation, and I was trying to emphasize my point of view, but my mouth and tongue simply wouldn’t coordinate. Instead of pausing to slow down, I just kept repeating the same garbled…

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…