Wednesday, September 28, 2011

Not Changing The World, Changing Yourself

A person I care about very much taught me what the word "survivor" now means to me. She was beautiful, funny, sweet, completely without jaded or cynical thought. With all her gentle kindness, she never seemed like someone who had taken tragedy on first hand. The amazing thing about my friend was her Father's battle and subsequent death from ALS. She changed my meaning of the word survivor because I always thought it was something you battled for yourself. Now I know it also means the people who battle along with those who suffer. My friend is a beautiful woman, but she's a survivor of a devastating disease.

Amyotrophic Lateral Sclorosis (ALS) is catagorized as an upper and lower motor neuron disease. Ten percent (10%) of all cases can be linked to genetic defect. In the rest of the cases, no cause has yet been isolated. ALS occurs in 5 out of every 100,000 people. So that equates out to 0.005% of the population. As a reference point, 1 in 500 children is the lowest estimated occurrence rate of autism.

There is no documented treatment course for ALS. Seventy-five percent (75%) of all people diagnosed with ALS will die within 3-5 years after diagnosis. Treatments for increasing the longevity of people who are diagnosed with ALS include Riluzole, which can help delay the need for a feeding tube. Issues with involuntary muscle movement and help for people who have trouble swallowing their own saliva can be medicated, but no treatment yet has slowed the disease's progression. Twenty-five percent (25%) of patients diagnosed with ALS survive 5 years past their diagnosis date.

I'm telling you all this because of Steve Gleason. Steve Gleason is a retired NFL player who went undrafted and was cut by the Indianapolis Colts in 2000. Becoming a New Orleans Saint practice squad player that year, Gleason went on to be responsible for the blocked punt that led to the first Saints touchdown in the Superdome since Hurricane Katrina 21 months previously.

Since his retirement in 2008, Gleason has been working on and has received his Executive MBA at Tulane University. In May of 2008, Gleason married Michel Varisco. The couple are expecting their first child in October of 2011.

Gleason was a well-loved member of the Saints locker room, and Sunday September 25th, 2011, Gleason was given a 2009 Super Bowl ring in honor of all he'd done for the Saints to put the team in Super Bowl-winning position. That same day, Gleason announced to the world that he has been diagnosed with ALS.

In an effort to increase research and awareness of a disease he knows he will not survive, Gleason has created http://team-gleason.com/. This website offers a lot, from quotes that are amazing when you know the author is only 34 years old, to an interactive tutorial on what the disease now known by Lou Gehrig's name really means. Please check this site out. I'm not saying, "Give money; you'll save someone!" I'm saying you'll learn about a very nice husband and father who is trying to find where to go from here, now that he knows where and how the road ends for him. You'll learn about the new survivors this situation creates, and what they mean to do with what they've learned from Steve Gleason.

I want to end with a featured quote from team-gleason.com. I think it's a wonderful quote. Something to think about, at least. "It's not about the blocked punt or the Super Bowl ring. It's about relationships, love and what you do when you walk out of this room."

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