Why the ALS Ice Bucket Challenge Is Truly Useful

My Facebook page is starting to see timeline activity related to the #IceBucketChallenge. Why me? My father died from ALS on February 27, 2014, at the age of 63.

Surely everyone knows by now that this is the push to raise awareness of what ALS is (do you know what ALS stands for?) and to raise money to fund research to move this disease into a state of real life-extending progress.

A “selfie” of me and my Dad, Greg (with his drool-stopping washcloth in mouth), while waiting to the “Lung Doc”

No doubt, you are seeing this everywhere, and I do mean everywhere… Facebook, Twitter, local news, national news, celebrities, friends—most likely, you actually know someone who has been challenged. (There’s now even a montage of videos of ice bucket challenges gone wrong.)

It may seem a bit silly to dump a bucket of ice on your head, especially to those who aren’t doing it or don’t understand how in the world this is doing anything to fight Amyotrophic Lateral Sclerosis. (There you go! That’s what ALS means.)

Here are a few Ice Bucket Challenges posted on Facebook, done in honor of my dad by the notable residents of Paragould, Arkansas, where he and my mom have lived for several years.

Ice Bucket Challenge Post by Ryan Vaughan, Region 8 StormTEAM.

Ice Bucket Challenge Post by Bradley Snyder, with my mom dumping the ice on him and fellow neighbor, Joey Fleszar, who helped my dad so much in his final months.

I believe it is doing something just by people talking about it, donating as little as $5 to ALS research, and posting thousands of ice bucket videos. Awareness! Awareness! As my family trudged through the journey that ALS is, I was amazed at how many people had no idea what ALS is or how to really help someone with ALS, even those in the medical community.

Let me tell you a few things I know about ALS just from watching my dad live (and die) with it.

• It can be hard to diagnose (Dad was diagnosed as having a stroke for the first 12 months he actually had ALS)
• There is nothing you can do to stop it. Nothing. Not one thing. Your mind stays sharp so you are fully aware of what is happening to you.
• It is beyond awkward trying to adapt to losing your ability to function physically. My dad lost his voice first. Imagine confused looks from everyone you try to speak to because they can’t make out what you’re saying. Then many friends stop coming around because they simply don’t know how to be around you.
• When you do get an app to speak for you (via an iPad), you learn to say what’s on your mind in short phrases to minimize the awkward silence while people wait for you to type. You also feel left behind when people progress the conversation before you can type out your thoughts.
• Oh, the drool problem. People will get used to the noise of the suction machine (necessary to keep from choking on saliva that you cannot swallow), but Dad couldn’t tolerate slobber coming from his mouth and running down his chin. Nope. Nope. Nope. His solution to stay dry? Bite on a washcloth (as shown in our selfie photo.)
• You get to a point where you cannot eat or drink, or you will choke to death (not everyone with ALS starts here like my dad did, but just about everyone with ALS ends up here). Just think about that for a second. Imagine how you can never taste anything, chew anything, not even suck on a mint…ever again.
• Every day of your life, you wake up knowing your body is worse than it was the day before. Your left thumb moved yesterday; today it doesn’t. You could button your shirt yesterday; today you can’t. You could reach the microwave yesterday; not today. You could pour your own liquid food into your feeding tube yesterday; today you shake too bad to hit the hole without wearing your food.
• Forget sleeping. For those with Bulbar Onset ALS, like my dad (where the disease starts by affecting speech, swallowing, and respiration long before your limbs are affected), you can’t lie flat or you will choke.
• Some people can live for years with ALS. Others, like my dad, went from normal to dead in less than 24 months.
• Doctors are at a loss to help ALS patients. There is nothing they can do right now; no cure. That’s why this whole #IceBucketChallenge is so important!

From the ALSA.org press release:

As of Tuesday, August 19, The ALS Association has received $22.9 million in donations compared to $1.9 million during the same time period last year (July 29 to August 19). These donations have come from existing donors and 453,210 new donors to The Association.

Over 453,000 new donors? Yes, I would say that’s significant. For the patients and their families trying to cope with ALS, this Ice Bucket Challenge is a welcome relief in a way. Finally, we have the feeling that people are starting to “get it.” I know Dad would have loved to see people get dunked under a bucket of ice water, but more so because it was done in hopes of someday preventing someone from enduring the agony that he did.