The 2012 comedy “Ted” contained a joke made at the expense of the movie’s villain. The joke, as expressed by a teddy bear come to life, was: “From one man to another, I hope you get Lou Gehrig’s disease.” This alarmed some ALS patients and advocates, who…
Columns
For those of us living with ALS, every day can have a stressful event. The key, I believe, is to move through the event and, if possible, remember it with humor. I recently came across a quote from the movie “Slow West” that reminds me that…
Traveling with ‘Al S’
In the Ken Burns documentary, “Baseball,” during the episode titled “Eighth Inning: A Whole New Ballgame,” comedian Billy Crystal mentions in passing the (I assume fictional) name Al Smenglevitz. Years later, I co-opted the character as a coping mechanism — an alter ego. Only, I simply refer to…
My ALS diagnosis was in 2010. In the months following, I tried to learn as much as possible about the condition and how it would affect my life going forward. I discovered that medical experts knew almost everything about the physical progression of ALS and what to expect…
My first symptomatic expression of ALS may have been as I left a football game. I fell flat on my face. At the time, I blamed it on the sun and the beer, although that combination in the same dosages had not felled me before. Shortly after, I became prone…
Sometimes living with ALS makes me feel like I’m competing in the Olympics. I wake up in the morning and wonder how my body will perform that day. Then I lie awake at night rehashing all the things that went wrong. The voices in my head often sound…
“Manners are a sensitive awareness of the feelings of others. If you have that awareness, you have good manners, no matter what fork you use.” ―Emily Post In case we ever meet, I want to apologize in advance if I ever appear insensitive to, or unaware of, your feelings. That is…
The ALS Workaround Dilemma
If you’re like me and live with ongoing physical changes from ALS, you’ve probably used workarounds. What is a workaround? A workaround is a creative, temporary solution that solves an everyday problem. For example, in the real world, folks put red duct tape over a broken tail light…
ALS Cannot Change Who I Am
“You just got lesson No. 1: Don’t think; it can only hurt the ball club.” That was the advice that Kevin Costner, who portrayed baseball player “Crash” Davis, dispensed to Tim Robbins, who portrayed rookie pitcher Ebby Calvin “Nuke” LaLoosh, in the 1988 film “Bull Durham.” Ordinarily, I opt…
How I Took a Vacation from ALS
Hello again! I’ve just returned from my summer vacation — my month-long vacation from ALS! No, I didn’t suddenly escape my disease or experience a miraculous recovery; my ALS is most certainly still here. My vacation was a mental vacation; an abstention from any and all ALS-associated media;…
Recent Posts
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- Long-term air pollution exposure shows no clear link to ALS in UK study
- Masitinib trial insurance offers a safety net for ALS research
- Spontaneous mutations may underlie some sporadic ALS cases