There have been three big new items getting lots of media play this week: the Ferguson protests, a beheaded journalist and an ice bucket challenge.
Throughout the last two weeks, news coverage and Facebook videos of ALS ice bucket challenges have been exponentially increasing.
It’s so trendy. I mean everyone is participating — grandparents, parents, children, politicians, athletes, celebrities, R2D2 and more, but I was beginning to wonder if people had lost sight of the disease itself.
The ALS ice bucket challenge, for those that don’t know, is an Internet sensation with the purpose of raising awareness of ALS and money toward research. A person is challenged by a loved one to either pour a bucket of ice water over their head or donate $100 to the ALS.
It’s also causing a little bit of unproductivity too.
I went in the conference room at work to make a phone call. After I hung up, I sat in a chair and connected to Facebook. Ten minutes later, I had done nothing but watch a handful of ice bucket challenge videos. One was of Robert Pattenson, the star of the “Twilight” series, who many swoon over but I’ve never been a fan. There I was, wasting my time, watching him participate in this temporary fad. I had to do something.
To amend myself for watching too many ice bucket videos, I did some basic research on amyotrophic lateral sclerosis to become better informed because educating the population is more important than ice over our heads.
ALS is a progressive degenerative disease that affects nerve cells in the brain and spinal cord and ultimately breaks down the motor neurons causing paralyzation and shortly thereafter death.
It’s a disease that knows no boundaries. A seemingly perfectly healthy person can get ALS. Even the luckiest man on the face of the earth, The Iron Horse, Lou Gehrig, was a victim of the mysterious fatal disease.
A small number of the population have ALS, around 30,000 people in the U.S. are currently living with it. An estimated 5,600 people are diagnosed a year.
What happens is a person will first notice muscle weakness and stiffness. Their hands might have a hard time with routine tasks like starting the car or buttoning a shirt, similar to Parkinson’s Disease
As the disease quickly progresses, weakness will take over and the muscles of the limbs will paralyze. Basic human functions like the ability to walk or speak will soon be lost. Eventually, the brain stops sending the body information to swallow and breathe, and death will occur.
The average prognosis after diagnosis is two to five years to live. That’s not very long, but it can seem like an eternity in the traumatic condition.
Since the disease isn’t very popular and very few are suffering from it, many health insurance companies don’t see it as profitable, leaving victims feeling helpless. There’s no cure. There’s no known cause.
Not many people know about ALS and it probably hasn’t been in the forefront of the media coverage since 1941, the year Gehrig passed away, until now.
It might eventually be a short lived trend, but it has a great deal of steam, momentum and memorability. It’s been fun to watch, wonderful to learn more about and a true testament to the power of the people. It’s as if everyone united for one purpose — to rally for ALS — and if the intent lost any meaning along the way it never lost focus.
I close with a quote.
“Don’t think I am depressed or pessimistic about my condition at present. I intend to hold on as long as possible and then if the inevitable comes, I will accept it philosophically and hope for the best. That’s all we can do,” Gehrig wrote in his retirement letter.