“No one knows what it’s like, “To be the bad man, “To be the sad man, “Behind blue eyes.” – The Who Last week, it was time for the annual agency performance audit of my aides. Actually, owing to COVID-19, the one for 2020 hadn’t taken place. Consequently, the…
“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…
In the summer of 2014, people across the world dumped water over their heads in the ALS ice bucket challenge and shared videos of the experience on social media. Our son, Isaac, who was 4 at the time, did it, saying, “I’m having my aunties and uncles do the…
“Everybody’s talkin’ at me, Can’t hear a word they’re sayin’, Only the echoes of my mind.” – Fred Neil ALS has rendered me a minimalist creature of habit. My weekday routine includes the intersection of paranoid caution, practiced routine,…
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…
ALS Awareness Month has been observed each May since 1992. But this year, the COVID-19 pandemic has forced supporters to rethink ways to raise funds and awareness for amyotrophic lateral sclerosis (ALS). In previous years, May has been full of fundraising and educational activities such as outdoor bake…
For a couple years after my husband Todd’s ALS diagnosis, I sought companionship in books written by people with ALS or their spouses. I read half a dozen stories, trying to wrap my mind around how we would navigate the rocky, unfamiliar landscape of the life…
“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…
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…
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