Living Well with ALS - a column by Dagmar Munn

I spent most of my life following daily habits and routines that shaped my perspective about how life ought to be. When ALS appeared, it brought change and created imaginary roadblocks in my mind. I didn’t want things to change, to learn new habits, or to adapt to my…

Recently, a journalist and author from New York contacted me about a book he’s working on. His theme is the role that humor plays in helping people cope with a wide variety of diseases, disabilities, and physical conditions. He wanted to include my ALS-related experiences, and I gladly agreed to…

When I learned I had amyotrophic lateral sclerosis (ALS), my whole world changed. My husband’s world changed, too, as he suddenly found himself in the role of being my caregiver. For some ALS patients and caregivers, the new responsibilities that follow a diagnosis begin almost immediately. Ours followed a slower…

Last week for me, the letters A-L-S stood for “A Lot of Socks.” I tackled a project that would make living with amyotrophic lateral sclerosis easier for me right now, for my future self, gave me peace of mind, and yes, it involved socks. It all began when I was…

Like most folks who live with ALS, I tend to get stuck in the shortsighted day-to-day management of my symptoms. Over the years, I’ve developed several strategies that help me change my mental focus from a short view to a longer one in which I’m open to the possibilities of…

Learning I had amyotrophic lateral sclerosis (ALS) was certainly a big adjustment. The changes to my life that slowly chipped away at my goals and sense of self made me feel lost. It was only when I observed ALS patients who were thriving that I was able to appreciate how…

I realize the words “ALS” and “humor” don’t always hang out together, but in my life they often do. I’ve been living with ALS since 2010, and over the years, I’ve learned not to let a day go by without finding humor in the absurdity of it all. Most of…

Living with ALS has its challenges. For me, the first year after my ALS diagnosis was the hardest. Looking back, I made some mistakes and wasted time and energy that I wish I could have back again. Although we each experience a different journey with ALS, I believe we all…

Even though I believe I’m a pretty good planner and can strategize with the best of ‘em, last week threw me into a planning frenzy. I was anticipating my first in-person ALS clinic visit after nearly a year of online appointments with my neurologist. Pre-pandemic, I had many in-person…

Last week, I had several email exchanges with ALS patients who wrote about their feelings of anger because ALS had robbed them of the life they had planned to live. I certainly can relate. I felt exactly the same way after my diagnosis. I told them what had helped…