Living Well with ALS - a column by Dagmar Munn

Remember those “100 Things to Do During a Pandemic” emails that arrived in our inboxes a while back? Well, a few days ago, I came across one, and while reading it, I felt the symptoms of “compare-despair” welling up in my mind. Years ago, I might have followed the negativity…

Recently, I noticed a surprising side effect from just a few weeks of following the stay-at-home guidelines: I’ve been talking less. A whole lot less. And to be honest, on some days, my conversations were limited to “yes” and “no” answers. That worried me. Because I’ve worked hard to prevent…

I’m an avid trend-watcher and enjoy tracking how new phrases and products end up permanently woven into our daily lives. For example, only a few months ago, a mention of flattening the curve or social distancing would cause most folks to shrug their shoulders. Now, both phrases have become rallying…

What an emotional roller-coaster time we’re in right now! During this COVID-19 pandemic, I’ve felt the upswings of coping and adapting well, followed by the downswings of worry that this crisis would never end. Only when I took a step back, to reflect on my feelings and identify what…

Social distancing? Shelter in place? For many like me who live with ALS, the recent COVID-19 guidelines to “stay home” and “work from home” are what we already do! Every. Single. Day. Getting out and about for a quick trip to the grocery store or a meal at…

Spring — the kickoff for a multitude of ALS awareness events — is just around the corner! Many are already gearing up, and this is my signal to dial up my mental resilience. It helps me support their messages while keeping a firm hold on my sense of me.

Oh, how I wish living with ALS weren’t so murky: We don’t know its cause, we don’t have a cure, and we measure symptom progression by way of 12 questions. I can’t do anything about the cause or cure, but I’m up on my soapbox (the one with the…

The other day, I was chatting with a friend about Rare Disease Day. Wait, what? You don’t know about Rare Disease Day? Well, don’t feel bad. Last year I missed it, thinking it was just another ho-hum awareness event. But I’ve learned the value of events such as this…

Sometimes you get lucky and life gives you a break, which is not always the norm for someone living with ALS. The past two weeks have been rather fun for me, thanks to a suggestion that I begin using a portable microphone. I have written about my challenges…

Living with ALS has taught me to adapt, adapt, and adapt. Because ALS symptoms tend to change, change, and change. And one of the symptoms I’ve been learning to adapt to is dysarthria, or losing the ability to speak. Dysarthria feels like having a bad case of laryngitis and…