Tuesday, September 2, 2014

Maybe all the ice in these buckets will WAKE us up!

What's all the hype about?  Was the first question I posed when I initially saw all these people responding to the ice bucket challenge on social media.  At first I was unclear about this entire ALS fundraising campaign and decided to gather more information before commenting about it.

My assumption was when you dump the ice on your head you were agreeing to make a financial donation to the ALS society. There were quite a few questions rolling around in my head.  First and foremost, "How will the ALS Association collect on these challenges? And who's to say that everyone dumping ice is going to donate?  Or do they dump the ice water on themselves instead of donating money to the research of ALS? Hmmmm..."

I saw an article that read: "The ice bucket challenge videos are raising the awareness of the disease."  Really?  Before trying to answer the finance questions I wondered how many of the people pouring ice water even understood what ALS was.  No let's make it simpler than that, "What does the acronym ALS stand for?"  That should get a rousing group on answers.  

So I started asking? 

I would have thought in all the media coverage and television ice bucket challenges that SOMEONE would have done a report on amyotrophic lateral sclerosis.  NOT the ice bucket challenge but the disease that inspired the challenge.  So I went to friends and the internet to find out what they know about ALS. Hmmmmmm..............  

Let's just say we know more about the ice bucket challenge than anything else associated with it.  

ALS, Amyotrophic lateral sclerosis or Lou Gehrig's Disease are different names of the same debilitating illness of the nerve cells in the brain and spinal cord that control voluntary movement.  

I have a friend wino went to the best physicians in the world for more than five years before he was diagnosed with  this disease.  To see him move like a crippled senior at the age of 38 is heart wrenching.  You can see from his facial expression that each movement is an internal fight between his brain and his arms and legs.  It's as if his limbs have decided to rebel against him and all do their own separate thing!  As I thought about him, a young black man with this disease I couldn't help but wonder how much of that money will go towards EDUCATING doctors about diagnosing this disease earlier.  You see my friend doesn't fit the typical picture of an ALS patient:  He is African American (93% of patients are Caucasian) and started exhibiting signs in his early 30's (average age of diagnosis is 55.)

I don't know... Not judging anyone who has participated in any way to raise money for ALS research. Just hopeful.  Maybe all these public cold showers will make people truly WAKE UP!  The next few months will tell 


Lisa Anderson said...

Thank you Dr. Jeri for sharing your thoughts, many of which we share. My first reaction was this is nonsense and I refuse to participate. Then i learned a close family friend suffered from this disease. Prior to the ice bucket challenge, he did not share what he had. We just all knew there was something wrong. When he saw the how the word was spreading about the disease and how many people were "playing" along without any knowledge of what this thing called ALS was, he decided to speak up. Sharing his secret made me sit up and do some research as well. After a week of probing and learning, I decided to take the plunge AND give to the foundation. What I understood in my giving is while I can not control how the money is spent, it is going toward some form of advancement. In every system there are several components and each one is as equally as important as the other. Giving to one component more than the other makes the system imbalanced and ineffective. Knowing this, I had to trust and believe the decision makers would spread the wealth to help balance all of the componentes in order to help the masses. Prior to the challenge, I did not know I had a reason to support the cause. Now I do.

Dr. Jeri said...

I'm glad you have decided to support your friend in his fight. There are always different ways to fight diseases just be certain to choose the most effective means for you! Thanks, Lisa!!


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