August 21

#IceBucketChallenge – What is ALS?

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Our family is delighted to have participated in the the viral, amazing and enlightening ALS #icebucketchallenge

I shared a video on Facebook on Wednesday night, and I did so, without warning, because it really helps to define the elephant in the room. What exactly is ALS and how did we personally become involved? Here’s the story.

Amyotrophic lateral sclerosis (ALS) is known nationwide as Lou Gehrig’s Disease. Of course it is.

2-2_fullGehrig, who may have been the greatest baseball player ever to play the game, was diagnosed with this rare disease, and forced to retire at the height of his career. I don’t know if these stats will mean anything to most of the readers, but to stats guys, these are undeniable. Gehrig played 2,130 consecutive games, a streak only passed by fellow HOF’er Cal Ripken, Jr. He had 493 career homers, 1.990 runs batted in, and a career batting average of .340. He was the first MLB to have his uniform number retired. He was the first player to appear in over 2000 straight games. He hit over 20 Grand Slams in his career. He rewrote every major record in baseball history. 2014 marketed the 75th anniversary of his historic speech. And then, Gehrig was diagnosed with a rare form of progressive neurodegenerative disease.

 

ALS is an unforgiving bitch.

It 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. Gehrig’s retirement speech is easily the most memorable in sports history. Ever wonder who considered himself “the luckiest man?” It was Gehrig.

 

The muscles fail. All of the muscles fail. It starts with the digits. It’s the ability to sign your name to something. Then, it’s the ability to lift the groceries. Eventually, that trend continues. You stop playing guitar. You can’t walk up a flight of stairs. You can’t explain what you’re trying to say. In advanced stages, you can’t speak without technology. In the final stages, you can’t breathe without assistance. ALS is a merciless disease, and we need an investment in research for those currently suffering, and those who have to be diagnosed.

I never met Lou Gehrig. I got involved in the ALS #icebucketchallenge only recently, though ALS has impacted us heavily in the last couple of years. I shared a really heavy, saddening video on Facebook – click if you really don’t understand the impact of ALS.

I wanted to use this post to share some incredibly positive thoughts about ALS, long before the #icebucketchallenge was even a thing. I want to honor a few people who shaped my life. Yes, they had ALS. Did that stop them? Hell, no. First, let me honor my friend, Charles Calvert. Charles is one of the most brilliant individuals I’ve ever met. He is a fellow fantasy/sci-fi junkie. He helped me shape my first novel. Charles has a biting wit. His baritone voice may be silenced, but I have faith that this devoted father and husband will keep fighting. He is an inspiration.

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Second, let me send my love to the family of the late Eric Lowen. Eric and his partner Dan Navarro wrote some absolutely incredible music. Their most memorable songs include Pat Benatar’s Grammy-winning “We Belong” , as well as songs for The BanglesThe TripletsThe TemptationsFour TopsDave Edmunds, and David Lee Roth.

As a band, we played Lowen and Navarro’s “Just to See You” as the first dance for a wedding a couple years ago. The song wasn’t on the wish list, it was something they heard us play at a gig. A few months later, they swore to stay together forever as we played that song. They wanted to have their first dance as husband and wife to “Just to See You.”

When Eric was diagnosed, he embraced his disease with every bit of dignity as Gehrig.  At first, he simplified his guitar parts. Then, he gave up playing guitar, singing instead. He opted for the stool, and then the wheelchair. When the end was in sight, he and a team gathered an entire choir of folks diagnosed with ALS to sing. The song was dubbed “Learning to Fall“, the title track to Lowen and Navarro’s final full-length original album.

The result was the impromptu ALS Choir, and the chorus of “Learning to Fall.”

We celebrate ever effort to research and cure ALS. We miss Eric, and we wish all families with ALS a quick recovery!

nK


Tags

@nick_kelly, #icebucketchallenge, #StrikeOutALS, ALS, Charles Calvert, LearningtoFall, Lou Gehrig, Lowen & Navarro, Nick Kelly, nK


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