Thursday, August 21, 2014

ALS Ice Bucket Challenge

The ALS Association gives this definition of the disease:  

"Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed."

How many of you have watched the funny videos of people dumping ice water over their heads in the ALS Ice Bucket Challenge?  Perhaps you have done it yourself.  A local radio program spent a couple of hours last week discussing how stupid this challenge was and telling people to just donate.  I think they were missing the point of the promotion.  The point is to increase awareness.  And to encourage people to donate money.

Anyone can get ALS, but only 30,000 Americans have ALS at any given time.  Not a lot of people.  This, despite the fact that 5,600 people are diagnosed every year with the disease.  The reason for such a small total number is that the average life expectancy after diagnosis is between two and five years.  In a rare number, people have lived for 20 years or more after diagnosis, which gives hope that with research a cure or at least an effective treatment may be found.  But research costs a lot and takes years, and drug companies don't sponsor research to cure diseases; they sponsor research to discover drugs that will become profitable to sell. That's why donating money to ALSA can really help.  This money will fund the vital research that can result in a life saving treatment or a cure.

As a speech language pathologist I treated patients with ALS.  Typically, by the time I was called in the patient was losing the ability to swallow.  Oftentimes they could no longer manage their secretions, which is medical-speak for "the patient drools a lot." Their speech had become unclear and slurred.  They often choked on their own saliva.  And yet their minds were still sharp--they knew what was happening to them and what the outcome would be.  There was no cure for them-- they soon would be receiving all foods through a tube in their stomach and would require help breathing.  The end does not come easily for a person with ALS.  I met some very courageous people who daily stared death in the face.

So take the ice bucket challenge.  And donate.  You may not have a hundred dollars to send to ALSA--that's ok.  Send them $25 or $10 or $5.  Because that is the only thing that will truly help.  Money for research to help this horrible disease that anyone can get at any time.

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