Before you pour that bucket of water over your head….

iceWell it seems like everybody is getting in on the action of the ALS ice bucket challenge.  I commend everyone for taking the plunge, so to speak, and also donating to a good cause.

But, before you video yourself and nominate other people to do the same, take a moment to think why this challenge came up in the first place.

Pete Frates, a former athlete with ALS, is credited with initiated the movement and going viral.  The effect of this challenge has been to raise millions and millions of dollars for research to fight this insidious disease.

So let’s take a look at this disease.  Most people know it as Lou Gehrig’s disease, because he puts a face and name we all know to it.  It is a motor neuron disease which robs it victims of motor function, leaving them with only their eyes and brains unaffected.

It is an ugly disease.  Nobody talks much about it, or wants to see pictures of videos of people in the later stages.  It is certainly not for the faint of heart.  I would not wish this disease on my worst enemy.  Well, maybe I would make a few exceptions 😉 .

There is a new video out that I saw on Facebook.  It really puts the whole ALS thing into perspective.  I think everyone should see this video, whether they are doing the ice bucket challenge or donating, to see what it is really all about.  It is not about dumping ice on your head and making the coolest video.  (Although I have seen some very unique ones!)  It is about raising money for an orphan disease that big pharma doesn’t waste their research dollars on, because not enough people have this disease to make it profitable.  Please take a few moments to watch this video.

I hope all the donations help ALS suffers.  I really do.  I hope the money donated actually goes towards a real cure, and helps the people that need it, and doesn’t get lost in administrative costs or something other than what it is intended for.

I wish we could do an ice bucket challenge for every disease in the world, so we could eradicate all the pain and suffering.  Crohn’s Disease, Parkinson’s Disease, heart disease, CANCER………big pharma only produces drugs to relieve the symptoms, because if they found a cure, they wouldn’t get money for their products.  One would think they if we can put a man on the moon, we could find some cures for things like AIDS and Cancer to name a few.  All the brilliant minds in the world….

How about Autism?  It affects so many of our children, and is on the rise.  It is scary stuff.  What is the damn cause?  Vaccinations?  GMO’s? (Genetically modified foods that allow us to eat corn etc that is sprayed with Round-Up.  Oh joy).  Who knows.  All kinds of bad shit out there.  Every day something new pops up.  Makes you want to drop off the grid and grow all your own food etc and become a hermit.

Anyway, I have been thinking about all this a lot, given all the pain and suffering I have experienced in the hospital/nursing home this past year and a half.  I thought I was the unluckiest person in the world, and often felt sorry for myself.  Let me tell you, after some of the videos I have seen about ALS sufferers, I am ashamed of myself.  My battles were temporary.  I got better.  There was always a light at the end of the tunnel.  These people don’t have a light.  They are handed a death sentence.  And a horrible path to the death.  I don’t know if I would be strong enough to handle it.

When it came out that Robin Williams was suffering from Parkinson’s, my first thought was, that was it.  The final straw.  He knew what was ahead for him, and maybe didn’t want to deal with it.  I can understand that to a certain extent.  My Crohn’s disease is a chronic incurable disease.  However, it is manageable, to a certain extent, and is not necessarily a death sentence.  It is definitely an inconvenience, but you adapt.  You may not have 100% control over your bowels, but you still can get up every day and walk and talk and go about daily life for the most part.  Yes, there are bad times when you can’t.  I have spent many weeks in the hospital due to my Crohn’s.  But in my mind I always knew it was a just a setback that I could overcome, and luckily for me, it got better after surgery to remove some intestines.  ALS, or Parkinsons, not so much.  I watched my BIL with his Parkinsons for many years and saw how he deteriorated.  He was a brave man, who soldiered on every day.  It was very sad for his family to see the effects.  Luckily, every day there are more and more treatments for diseases like Crohn’s and Parkinsons. So far, not much for ALS.

But we need CURES.  Cures for all these insidious diseases.  I think ALS would probably rate as one of the worst.  Your body fails you but your mind is still sharp as a tack.  I myself worry about Alzheimers, as my mother had it.  Your body might be ok, but your mind is gone.  The opposite of ALS.  But just as devasting.

So, I am glad to see the ice bucket challenge.  I am glad to see the money donated.  I hope it helps.  I really, really do.  These people need a glimmer of hope.


2 thoughts on “Before you pour that bucket of water over your head….

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