Columns

Summer is finally here, which means it’s time for outdoor events, fun trips, and visits from family and friends. I look forward to each and every one of these memory-filled activities, especially now that I live with ALS. But even just a few days of travel or entertaining, combined…

Welcome to Kristin Neva’s “Joyful Sorrow,” a new ALS News Today column. *** My world changed forever 13 years ago when I became a mom. I lay in the hospital bed with my newborn daughter’s crib next to me and my husband sitting nearby. I was in so…

I recently reemerged from a plummet into the dark depths of my psyche. An eight-day hospital stay triggered my dive into an emotional abyss. About 2 1/2 weeks ago, a piece of chicken stubbornly lodged itself in my esophagus. After waiting 24 painful hours, in the hope of uneventful digestive…

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…