Columns

Where were you on Feb. 28? Did you know that it was Rare Disease Day? Don’t feel bad if you missed it because I did too. But I shouldn’t have. Because Rare Disease Day, along with the international events around it, represented a major change in perspective toward finding…

ALS and efficient are two words not often used in the same sentence. But to me, they are a perfect pairing. Mention “ALS” and it’s easy to think slow, clumsy, and low energy, while “efficient” can describe quick, streamlined, and well-organized. I’ve combined the two into what I call…

A 1992 episode of the hit television series “Seinfeld” is a “life-imitating-art” story titled “The Pitch.” The character of George Costanza (with brief help from Jerry Seinfeld) attempts to explain the concept for a new show to fictional NBC executive Russell Dalrymple: George: I think I can sum…

Shortly after my doctor told me I had ALS, I faced the daunting task of sharing the news with friends and family members. I hemmed, hawed, and hesitated for many reasons, but my biggest challenge was confronting the reality of my diagnosis. I knew that when I told others…

The sun is setting on another ALS Awareness Month. If we’ve been successful at drawing attention to the disease, we’ve reminded those who are untouched by its tortuous path that ALS is an indiscriminate, relentless, amoral, sadistic, Machiavellian monster. But to what end? Pity is superfluous and attention-fleeting; empathy…

Although each patient faces a different journey with ALS, we all share the memory of the moment when we received our diagnosis. When I was told I had ALS, I expected to be assured not to worry and that I’d be back to normal life in no time. Rather…

“What one man can do, another can do.” So said actor Anthony Hopkins, playing the role of Charles Morse in the movie “The Edge.” He used that mantra as inspiration to fell a rogue, predatory grizzly bear. It may be hyperbolic to equate the difficulties of securing one’s…

Living with ALS certainly has its challenges, which lead many of us to rely on workarounds. These are creative, temporary solutions that solve an everyday problem; I first wrote about mine in “The ALS Workaround Dilemma.” But the key word here is “temporary,” because workarounds run the risk…

About a year ago, I wrote about how ALS patients may receive home healthcare on an uninterrupted basis, with expenses covered by Medicare. Since then, there has been both good news and bad news. The good news is that I recently “celebrated” my two-year anniversary of getting that coverage.

I’ve always believed that I was open to new ways of doing things, but having ALS has put me to the test. My pride and a little denial have often gotten in the way of my seeing the obvious solutions to a problem. Thank goodness an “aha” moment came…