The Face of ALS

Long before it was cool, I gave to the ALS Association.

Those gifts had nothing to do with dumping ice water over my head... Or failing to do so.

I gave because to me, ALS is personal. It's not just a rare disease. It's the disease my Grandma died from in 2006, years before the ice bucket challenge made ALS the cause of the day.

Now don't get me wrong.

It's fantastic that the ALS Association is significantly benefiting from donations made as a result of this challenge. It's great that awareness surrounding this horrific disease is increasing.

Even so, every time I see someone participate in the ice bucket challenge, I cringe a little bit.

I mean, at this point, some people don't even mention ALS as they gleefully dump their bucket of ice water over their heads. Most fail to link to the ALS Association's website or to a place where you can actually give. And yesterday, I even started seeing some videos that shifted the attention elsewhere because apparently, ALS has now gotten too much attention.

But has dumping ice water over people's heads really translated into an increased knowledge about ALS?

I mean, how many people know anything about ALS other than those three letters?

How many people know that ALS stands for Amyotrophic Lateral Sclerosis (ALS) or even that it's better known as Lou Gehrig's disease?

How many people know ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord? How many people actually understand how horrific this disease is?

I'm guessing not many.

And to me, that's the piece that's missing here: A picture of what this disease is actually like.

So let me give you one.

My grandma was diagnosed with ALS in February of 2006.

Months before, she'd started experiencing an assortment of strange symptoms, largely surrounding her speech, ability to swallow, and her ability to hold her neck up.

Diagnosis was slow – incredibly slow. ALS is rare enough that it's one of those diseases that usually gets diagnosed only after everything else has been ruled out.

To further complicate matters, when it comes to ALS, my Grandma was an anomaly. She was diagnosed in her 80s; Most who are diagnosed are several decades younger than that. While my Grandma's primary early symptoms had to do with her speech, most early symptoms manifest in increasing levels of muscle weakness.

About a month after being diagnosed, we visited my Grandma – who lived 2000 miles away from us.

At that point, Grandma was still able to walk, albeit with assistance. She could also only hold her head up with the assistance of a neck brace. She spoke only with the assistance of an electronic speech device.

Every aspect of this disease is horrific but to those of us who lived thousands of miles away from her, the loss of my Grandma's speech was especially cruel. With her speech gone, we could no longer pick up the phone and talk. In essence, we lost our ability to communicate with her.

Slowly but surely, ALS ate away at my Grandma until her body became like a tomb.

I'd liken ALS to what I imagine it'd be like to be buried alive.

You see, ALS doesn't impair cognitive function. You're fully aware of your body's slow decline. You're just unable to do anything about it.

On August 29, 2006, my Grandma died, approximately six months after being diagnosed with ALS.

Immediately afterward, we became involved with the ALS Association, regularly giving to them in order to support both ALS research and the ongoing assistance the Association provides families living with ALS.

A year later, my Mom and traveled to Washington DC with our local ALS Association Chapter for the ALS Advocacy Day. We participated in a candlelight ceremony near the WWII memorial. We met and learned the stories of others living with this disease. Perhaps most importantly, we shared our family's story with our Congressional and Senate representatives.

In the years since, we've regularly participated in the ALS Association's Walk to Defeat ALS, regularly raising money and awareness to fight this horrific disease.

Of course, those aren't the only ways you can support the ALS Association.

I suppose you can just dump a bucket of ice water over your head and call it a day.

But I hope you don't.

Instead, give to the ALS Association. 

After all, long before the ice bucket challenge went viral, people – like my Grandma – had ALS. And the reality is that long after the ice bucket challenge fades away, people will still be fighting this disease.

I urge you to get to know some of them.

Learn their stories and hear what this disease is really like. See how it affects real people and their families.

When you've done that, if you still want to dump ice water over your head, be my guest.

But as part of your video, would you share the story of someone with ALS?

That's what might actually help educate people about the reality of ALS, or at the very least, put a face to this disease.

And take it from me, when diseases have faces – when they're attached to real people whose lives matter – they become much harder to ignore.