Living Well with ALS - a column by Dagmar Munn

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…

I love daily routines. For me, having a set of habits and to-do projects waiting to be tackled helps me feel grounded when the world’s events are in turmoil. And more importantly, daily routines keep my mind focused on things other than my ALS. What I don’t love are disruptions,…

This past week was filled with voices. No, I wasn’t hearing voices in my head. But everything seemed to involve a voice. Let me explain. An action hero uses his voice I watched the newly released documentary “Val,” currently streaming on Amazon Prime Video. By the time the final…

Cue the heroic Olympic theme song, our competitor is ready to begin! As the timekeeper signals all onlookers to be silent, the athlete draws in a deep breath, then while slowly exhaling, counts out loud from one to 10. She successfully completes the task using just that single breath…

Once in a while, a newly diagnosed ALS patient will reach out to me and ask for help in their adjustment to life with ALS. I’m always happy to share resources, motivation, and tips, and usually, I begin our online friendship with the question, “Tell me a little about yourself?”…

Among the many challenges of living with ALS are the physical symptoms of muscle stiffness and weakness. I have both. During my first year with ALS, I’d wake up and walk into the bathroom doing a good imitation of the clumsy, lurching steps of Frankenstein’s monster. On other days,…

I’ll admit to hearing voices — the voices in my head, that is. We’re all listening to our mental voices. It’s the constant chatter of inner dialogue or self-talk that leapfrogs through our thoughts, beliefs, questions, and ideas. Mostly the chatter is background noise, accompanying our daily activities and conversations.

The other day while watching TV, I heard the newscaster announce, “We’re in the ‘new normal’ folks, and everybody wants to get out and travel again!” “Well, I don’t,” I thought, and just as quickly wondered, “Am I the only one who doesn’t feel comfortable yet to go out…

To help me get through the ups and downs of living with ALS, I’ve created several mental games. Perhaps they’ll help you, too. For example, when life around me isn’t cooperating, I imagine I’m in a driver’s ed training film. When my body isn’t following orders, I tell…