Living Well with ALS - a column by Dagmar Munn

Something was missing from the packet of patient information my doctor gave me on the day she told me I had ALS. But I didn’t discover that missing item until 12 months later. Why? During those months, even though I was adapting as best I could — such as…

Like many ALS patients, I had a difficult time accepting assistive devices into my life. In my case, a pair of ankle-foot orthoses (AFOs), a rollator, and a mobility scooter challenged my adaptability and sense of myself. But over time, with lots of persistence and support from my caregiver…

Dear Santa, here’s my special wish list for the holiday season. I’m not asking for toys or special treats, just your help in making my holiday social events blend better with my life with ALS. Specifically, I’m hoping you can help me when I attend social gatherings, dine in…

Can it be that we were cheering on athletes at the Olympics only a few months ago? Where did the summer go? Looking back, I realize I spent most of my summer and early fall months distracted by the hoopla of world and national events, and now I’m exhausted. I’m…

I collect drinking straws. Not just any old straws, mind you, but long, wide-barreled plastic straws. My assortment includes several unusual straws as well, and they all help me drink beverages with ease even though I have dysphagia, or difficulty swallowing — a symptom of ALS. As I wrote…

Hmmmmm. That’s what my body feels when it’s doing its “humming thing.” It’s an all-over buzzy sensation that I chalk up to being another quirky symptom of my ALS. It’s a feeling I’ve never mentioned during my ALS clinic visits, mainly because I want to keep the visit rolling along…

One day, about four years after my diagnosis of ALS, I began having trouble pronouncing words. My tongue felt thick and couldn’t form words at the speed I was thinking them. My speech came out garbled and my brain hurt from trying to overcome the disconnect. At the time,…

Life’s curveballs happen to us all. Many of my column’s topics have been about the unexpected events I face while I live with ALS, as well as what I do to conquer them. But I believe the secret to my ability to handle life’s ups and downs is…

“What was I thinking?” The words boomeranged around my mind as I stood frozen in place under the hot Arizona sun. I was experiencing an ALS patient’s worst nightmare: being stuck with an expanse of sidewalk ahead of me, the same distance behind me, and absolutely zero energy in…

Last week I visited my dermatologist for my annual skin exam and when it was over I left his office with a brand new perspective about my ALS. I’m quite diligent about my annual medical exams — eye exams, regular ALS clinic visits, dental care, and in this case,…