Author Archives: Dagmar Munn

With Clinical Trial Criteria, We’re Stuck on the Outside, Looking In

“Have you ever participated in clinical trials?” That’s a common question among ALS patients. What’s my standard answer? “It’s complicated. I’m participating in several studies, but even though I’d like to, I haven’t been in any clinical trials. I’m excluded because I’ve had ALS for too many years.” ‘What? Tell…

Echo! Can You Understand Me, Now?

Last week, I stepped onto my soapbox (mine has special safety handrails) and voiced my opinion about an issue that’s been bugging me for several years. It’s a problem I share with about 7.5 million other people who have trouble using their voices and cannot get voice-activated devices to…

Lessons I Learned From My AFOs

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…

3 Things I Would Do Differently If Diagnosed Today

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…

Let’s Help Bring Back the ALS Clinics

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…

Outsmarting the ALS Identity Thief

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…

Talking My Way Through 2020

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…

Getting Credit for Being Old (It’s About Time)

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),…