The Fight Against ALS Goes Beyond the Ice Bucket Challenge

When it comes to viral campaigns, there are few in memory that can match the truly transmissible nature of the ice bucket challenge.

The fundraising movement has even seen participation from Sir Patrick Stewart, Victoria Beckham, Will Smith and Anne Hathaway to raise awareness for amyotrophic lateral sclerosis (ALS).

The campaign started out either as donate to the ALS Foundation or dump a bucket of ice on your head and has since evolved to include both dumping and donating.  According to the ALS Foundation, the campaign has brought in more than $79.7 million in donations compared to $2.5 million during the same time period last year (July 29-Aug. 25).

I’ve been in five cities over the last two weeks and the challenge has been discussed on every local newscast and at every happy hour I’ve attended.

The fundraising idea has certainly gone far beyond where originators Pat Quinn and Pete Frates could have hoped and the awareness that has been created about ALS is incredible.

However, it’s been my experience that far too many of those talking about the challenge and taking the cold dunk don’t really seem to grasp what it’s really all about. And now, the challenge has gone from viral to fad. People are now taking the challenge purely for the sake of it and the message has been overshadowed by the entraining nature of capturing get soaked with ice water.

My interest in this goes beyond my role as a psychologist and business commentator. In April 2013 my father was diagnosed with ALS. Prior to the heart-wrenching disclosure from my mother and father, I had no real knowledge of the disease. ALS, more popularly known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that attacks the motor neurons responsible for voluntary movement. The progression of the disease is different in every case and little is known about its origins.

ALS patients in the advanced stages like my father are completely paralyzed, yet can feel everything. Imagine not being able to scratch your nose, pick up a fork, or walk to the bathroom. You literally have to ask for everything and get assistance to do anything. You quickly become a prisoner of your own body, completely reliant on the good will and patience of those around you, which is another challenge with this disease. Those with advanced ALS require 24-hour assistance, and spouses, children, relatives, and friends can only do so much. The physical and emotional demands of caring for someone who is completely incapacitated can take quite a toll on both loved ones and professional caregivers.

When friends ask how my dad is doing, my answer is always the same: It’s either the same as yesterday or worse. Never better.

Being the eternal optimist that I am, much to the annoyance of many of those around me, the notion of every day being worse than the next is a tough pill to swallow. It’s a progressive disease. There is no cure and very little in the way of treatment. Eventually, your essential functions begin to fail. Your ability to talk, swallow and breathe quietly erode to the point where you can no longer hold on. It’s a cruel and insidious disease. I can’t imagine what going through it must be like, but I can say with great certainty that it is a brutal thing to watch.

Whether it’s ALS, Parkinson’s, Alzheimer’s, or the multitude of other illnesses that afflict us, there are good people out there working hard to beat these diseases and they need our help. So, before you take the ice bucket challenge, please take a moment to reflect on why you are taking the dunk and what more you can do to not only create awareness, but actually help strike out ALS.