Author Archives: Dagmar

Friends Don’t Tell Friends How to Cure Their Disease

It all began as one of those typical online interactions when someone reaches out and asks for help. A gentleman contacted me via Facebook, explaining that his friend was recently diagnosed with ALS. He wanted to ask me a few questions. I noted that we were connected as “friends of…

How ‘Self-care Minis’ Help Me Through a Busy Day

I’m always on the lookout for self-care strategies that help me cope and live with my ALS. Recently, I added two quick and easy skills I call “self-care minis” to my ever-growing list. They help me stay cool and calm when I have a super busy day. Why do I…

How I Live With Gravity, Coincidence, and ALS

I’ll admit that during my high school days, when our studies turned toward physics, I didn’t pay much attention. Gravity, the invisible force that keeps us on the ground and makes things fall, seemed so bo-ring. But in 2010, when I was diagnosed with ALS, the condition put me through…

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…

Positive Rituals and My Evolving Morning Routine

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…

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…