Living Well with ALS - a column by Dagmar Munn

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…

I have to confess: I envy people who multitask. It is something I used to do with ease, but ALS has firmly put those days in the rearview mirror. It’s not even that I am “tasking” much these days; I find myself simply reminiscing about the times when I…

For most people, February is a month filled with hearts and flowers. But for me, it’s all that plus a vibrant display of ALS zebras and a splash of green, pink, blue, and purple. Zebras? You might wonder what a striped animal has to do with a neurological disease…

In the 40-plus years rollators have been around, few design modifications have been made. The changes that have been made target an older demographic. But today’s rollator users don’t just live in nursing homes — we are traveling, attending social events, and seeking designs that match our lifestyles. If you…

I have a pair of cute, pink, 1-pound dumbbells that sit on a side table within easy reach of my desk. I put them there last summer with the best of intentions: I’d perform a few simple arm exercises during my breaks from focused computer work. How often have I…

“My body looks the same, but it works differently now.” A friend told me that 30 years ago, following her abdominal surgery. I remember nodding to show compassion, while secretly thinking, “I haven’t a clue what she’s talking about.” Decades later, living with ALS, I finally understand. When I…

I’m always on the lookout for strategies to help my day-to-day life with ALS go more smoothly. Recently, I found a surprising spark of inspiration in a junk drawer in the kitchen. It wasn’t something hiding inside the drawer that helped; instead, it was my frustrating encounter with the…

My recent holiday season was overall fun and festive. It did, however, offer a pointed lesson in living with ALS. It began one morning as I was getting ready for a special lunch with relatives. I sat on a folding chair, struggling to put on a sock, and from…

Dear Dagmar, I know the news is still fresh. There are so many things I want to tell you, but I’ll keep this letter focused. That’s mainly because I know being contacted by your future self can be startling enough, but added to that, being told you have ALS…