About This #IceBucketChallenge for ALS

My favorite picture of Ron before ALS changed his life
My favorite picture of Ron before ALS changed his life

My step-father, Ron McCormick died from ALS on July 4, 2011.

For 10 years he endured this terrible disease that is also known as Lou Gehrig’s Disease. For many years we, as a family raised money for ALS research and participated as a team in the Walk to Defeat ALS in Colorado and Missouri, and attended candlelight vigils, but never thought about dumping ice water on our head!

This #IceBucketChallenge makes me smile. Seeing so many people getting involved with an organization that is committed to finding a cure for ALS is inspiring.

As of yesterday, (8/21/14) the ALSA has received $41.8 million in donations, as opposed to $2.1 million raised during this same time in 2013 (July 29 to August 21). ~ALS Association

There are haters out there, bashing this Challenge. Forget those people!

Anything that gets this much attention for ALS is a good thing. The more attention we bring to ALS, the better chance we have to find a cure, because cures are not cheap, people!

The following is an excerpt of a post I wrote for Ron on his 62nd birthday.

* * * * *

Ron in 2003

Ron McCormick turns 62 years old today. It’s a birthday to celebrate. He should eat lots of sugar-loaded cake. He should open presents from loved ones. He should kick up his heels, dance a little, maybe on a table. But he can’t because he was diagnosed with a fatal disease called ALS.

Ron is now completely paralyzed. He has lived with the disease for almost 9 years. Typical life expectancy is 3-5 years after diagnosis. So he has lived far beyond the “norm”. But he is tired. He is weary.

Ron has been on a ventilator for more years than I can remember (since 2003). He can’t eat. He can’t drink. He can’t swallow. He has a feeding tube. His throat has to be suctioned out continually. He can’t sit up on his own. He can’t talk. He only “talks” using a special computer. My mom and his caregivers try to read his lips but over the years that has become almost impossible. He can’t walk. He can’t hug his grandchildren. He can’t work on rebuilding his Monte Carlo. He needs 24/7 care, even though the state of Missouri doesn’t feel he “needs” it and will not pay for that kind of care. My mother is left to “fend for herself”, using whatever or whoever she can as a caregiver. Many of these people, although good-hearted, are not qualified to be this type of caregiver and they learn as they go (just as she has). With all this she also works a full-time job and takes care of Ron’s young grand kids.

* * * * *

This is why I give to the ALSA.

IT’S NOT ABOUT THE ICE BUCKET CHALLENGE…IT’S ABOUT FINDING A CURE. If dumping a bucket of ice-cold water on your head is the thing you are compelled to do for ALS, then go for it! I will watch your video, and applaud you. But also give money because that is really the point.

If you are like me, the idea of dumping ice-cold water on your head gives you chills, well, ALS will take your check without the ice water! Either way the ALS wins!

Because it’s time we found a cure!

Ron’s Story | What is ALS | ALSA | Walk to Defeat ALS

 

3 thoughts on “About This #IceBucketChallenge for ALS

  1. It brings a smile to my face to. I think it is so awesome, that people are becoming aware of how important it is to find a cure. If It takes a bucket of ice to open people’s eye’s, get the ice trays out and pour away!!!!!!

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    1. It’s amazing how a video can bring awareness to ALS… They better soak it up because people forget easily.

      Like

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