Living Well with ALS - a column by Dagmar Munn

I’m happy to announce I’ve finally resolved a love-hate relationship — with my AFOs. It took persistence, but I can now step into my white, molded plastic ankle-foot orthoses and walk pain-free. That’s important to me because I want to keep walking for as long as possible, and my…

Ten years ago, if you had asked me how I was feeling when I woke up in the morning, I would’ve ignored you and disappeared beneath the blankets. That was during my first year with ALS, a time when I felt the weight of worry and having a life…

I’m often asked by others in the ALS community for tips and insight from my past 10 years of living with ALS. While I am grateful for both making it this far while maintaining most of my physical abilities, I am by no means an expert. ALS symptoms differ…

As I hung up the phone following a short chat with my neurologist, an old saying bubbled up in my mind: “You don’t know what you’ve got until it’s gone.” What was I bemoaning the loss of? My ALS clinic. I’ve been missing the interaction, the idea-sharing, and being…

I’ve always believed in the importance of having heroes and role models to help me cope with ALS. In fact, I keep a list of names in a special folder titled “ALS Inspiration.” But most of the people on my list don’t even have ALS. What they do have in common…

Lately, I’ve seen an escalation of messages urging me to protect myself from hackers, scammers, and other potential identity thieves. But there’s one identity thief that’s always on my radar: my ALS. That’s because the ongoing symptoms of ALS challenge the very essence of my sense of self. I’ve managed…

One of my personal traditions at the end of the year is a quick flip through my desk calendar to review the events and milestones that took place. Only this year, the world crisis overshadowed just about everything. “What’s to review?” I thought. But as I pondered the question a…

Every week, I receive an email from a friend that’s filled with cartoons, jokes, and quirky one-liners. And this time around, one quip struck me as feeling eerily true: “It feels weird being the same age as old people.” Why? Well, like most folks who share my age (I’m 69),…

One of the first symptoms of ALS I experienced was a sudden weakness in my legs and feet. This meant that without warning, whenever I walked I felt as if I had stepped in a hole, and more than once I ended up taking a nasty fall. Even when I…

During these final weeks of 2020, I’ve been reflecting on the various ways this world health crisis has affected the ALS community. One evolving activity that has held my interest ever since I included it in my post-pandemic predictions in a column last April is online ALS support groups.