Living Well with ALS - a column by Dagmar Munn

Did you know that rollators were invented nearly 40 years ago? A Swedish woman with polio added four wheels to her walker, and the idea was an instant success. Most of us who use a rollator don’t really care about its history. We’re just happy they exist to help…

Release the balloons and cue the marching band! May is ALS Awareness Month! Wait, what? The balloons are back-ordered? And the marching band is still sheltering in place? Well, ALS doesn’t stop, and neither should we. ALS Awareness Month is here — so let’s make it a success! My…

Because I have ALS, I need to minimize the risk of getting the coronavirus. So, I’m doing my best to follow the COVID-19 social distancing guidelines. And I appreciate the efforts of everyone who’s doing the same. Certainly wearing a mask and gloves, wiping down surfaces, and keeping…

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…