Living Well with ALS - a column by Dagmar Munn

Every once in a while, I step onto my soapbox (mine has special safety rails) to voice my view about an important issue in the ALS community. This time, I’m here with praise for “ALS and Mental Health,” an article recently published in ALS News Today. In my…

Every once in a while, I have to stop and declare, “I’m spinning way too many plates!” That happens whenever I begin to feel overwhelmed by the number of tasks I’ve set myself up to do while living with ALS. You’ve seen plate spinning, right? It was…

A few months after I learned I had ALS, I was invited to participate in a walkathon to help raise funds for the ALS Association. I’m sure my curt reply of “No, thank you” came as a shock to the person inviting me. At the time, I had…

I love learning about all the great activities happening during ALS Awareness Month, but I also worry that we’re attracting the attention of unscrupulous health advocates and clinics who target vulnerable ALS patients and their families. My health-fraud antenna is on high alert. Spending 30 years managing the…

Every once in a while, a common question circulates on ALS social media sites: “What would you do differently if you were diagnosed today?” The replies are interesting and often filled with regrets, such as trips not taken or home modifications made too late. I’ve participated in these discussions…

Imagine this: A 71-year-old ALS patient riding a mobility scooter visits her local furniture store. I mean, what can go wrong? Well, a whole heck of a lot can go wrong, at least according to all the worst-case scenarios that flooded my mind. From the comical to the complete…

Who knew that losing the ability to roll over in bed was an essential indicator of worsening ALS symptoms? I sure didn’t. That is, not until I was diagnosed with ALS and learned that a whole host of simple everyday behaviors were included in the 12-question functional…

I take pride in keeping a well-organized to-do list. Each day of the week has a set number of tasks, and each task is broken down into doable actions. It’s the “I’m under control and calm” approach. It’s perfect for someone like me who lives with ALS. But life’s…

“So tell us, Dagmar, what’s your latest project?” The question came from my neurologist as we chatted during my recent ALS clinic visit. She asked not only for herself, but for the medical student who was also in the room. As I prattled on, part of my brain reflected…

ALS has taught me many life lessons, and a very important one is to never give up. For example, some days I get up, get going, and suddenly notice that one of my body parts isn’t moving as well as the day before. It’s a small, quirky thing, like…