Living Well with ALS - a column by Dagmar Munn

I am always looking for ways to simplify my life and help my days go by a bit more smoothly. But when you live with ALS, like I do, there is always one extra thing to do, plan, or think about before you can even begin an activity. It’s…

The longer I live with ALS, the more I’m forced to learn about myself by constantly adjusting to my body’s limitations and learning how to pace my days. Lately, I’ve been taking lessons in how to thrive from a large, graceful houseplant on our back porch. We are both,…

I spent five days last week corresponding with a fellow ALS patient in the U.K. We met during a unique online event that reminded me that, while this disease can feel isolating, the ALS community wraps all the way around the globe. Beyond the connection, I walked away with…

As soon as I reached for the sock, I knew it would fall to the floor. And it did. I retrieved it by slowly bending sideways in my chair, stretching my arm in its direction, and with a mighty oomph, finally seized the soft fabric. That was just one speed…

I’ll admit that there were times when I simply wanted to toss my ankle-foot orthoses (AFOs) into the trash bin and be done with them. In the early years after my ALS diagnosis, those braces represented one more massive change in my life that I had to learn to…

I originally planned to write this week about the small ways I’m maintaining my mobility and muscle strength while living with ALS. However, I waffled back and forth about whether this was a suitable topic. My hesitation wasn’t because my observations were unreliable, but because I worried readers might…

Some days, my life with ALS feels like I’m trying to force a square peg into a round hole. On second thought, forget “some days” — I feel that way almost every day. There are the small irritations, such as having to wrestle with uncooperative Velcro on my…

“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…

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…

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…