“I didn’t even know ALS existed until I was told I had it.” That’s what most patients say when telling their ALS story. I said the same thing when asked to share my story at an event in 2010, and I hear the same thing from others today, 11 years…
Living Well with ALS - a column by Dagmar Munn
Like many newly diagnosed ALS patients, I was overwhelmed by the steep learning curve of finding out more about the disease. Never mind having to jump in and help raise funds for it. Every time May rolled around with ALS Awareness Month, I was uncertain about how I fit…
Last week, I caught up with a friend I hadn’t seen in a while. After we chatted a bit about the challenges of the past year, she suddenly asked, “Isn’t it strange that they haven’t found a cure for ALS yet? I wonder what’s holding them back?” My mind…
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…
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…
Although I was smack in the middle of a vast parking lot and surrounded by a hundred strangers, I felt genuinely hopeful for the first time in a long, long while. I was in line for my first shot of the Moderna COVID-19 vaccine, so feelings of hesitancy and…
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…
“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…
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…
Columns
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…
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