ALS Awareness: What It’s Worth
“I think it’s time we stop, children, what’s that sound? Everybody look what’s going down.” That call for awareness comes from the song “For What It’s Worth” by Buffalo Springfield. The song’s writer, Stephen Stills…
Columns
Get Involved in ALS Awareness Month This May
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…
Loving What’s Left
With my gym closed, I’ve been getting my daily exercise by cross-country skiing. A calm happiness washes over me at about the 2-kilometer mark, after my heart rate is up and endorphins flood my brain. I take in the beauty of the woods. Soft snow, the vestige of winter,…
Mission Impossible? The Quest for Perpetual ALS Awareness
In 1992 the 102nd U.S. Congress declared, via joint resolution 174, that May become National ALS Awareness Month. Part of the text speaks to “finding the causes of, and the cure for, ALS will prevent the…
Influencing Mindsets: When to Speak Up About COVID-19 Guidelines
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…
My Junk Drawer Sparks Memories of Better Days
Since my husband has ALS and is paralyzed, his life is much the same under COVID-19 stay-at-home orders. Todd still spends his days on the computer, except now there are many more people online, so he feels more connected. However, the kids and I have had to find a…
Pandemic Pitfalls: Avoiding the Compare-despair Trap
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…
‘How Are You?’ Can Be a Weighty Question
When someone asks how I am in passing, I know the script: “I’m fine. How are you?” Sure, the question and response are meant to be pleasantries in our polite society, but since my husband has ALS, some days the question feels weighty. It stirs smoldering emotions, reigniting the…
On Planning to Get Punched
“Everybody has a plan until they get punched in the mouth.” –Mike Tyson The author Lee Child includes that quote in his Jack Reacher crime novel series as part of the title character’s mantra. Reacher always endeavors to strike the first blow. The…
Talking Myself into a New Habit
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…
Recent Posts
- As the colors change, I’m bracing for another winter with ALS
- Surf Away+ event brings fun in the sun to people with rare diseases
- Setting an intention each day is part of my ALS tool kit
- First Project Mosaic initiative: Developing patient-specific models
- New study IDs better method to detect gene defects in sporadic ALS