ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 09-17-2006, 08:14 AM #1
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BobbyB BobbyB is offline
In Remembrance
 
Join Date: Aug 2006
Location: North Carolina
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BobbyB BobbyB is offline
In Remembrance
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Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
Default Failing body, vibrant mind define coach

Failing body, vibrant mind define coach

Sunday, September 17, 2006



Copyright © 2006 Republican-American

WATERBURY

Paul Szantyr is a man who doesn't know when he's beaten. That's probably because no one has ever beaten him.

A ninth-degree black belt in karate and a former state champion, he was once rated fifth in New England by Karate Illustrated. Distance runner, coach of a state championship team, teacher, basketball official, husband and a loyal and gleefully irritating friend, Szantyr, 48, is a man who, in many ways, should be just beginning his life.

Instead, he is confined to a wheelchair by a neurodegenerative disease that leaves him with no control over his body. For nearly seven years, he's fought against amyotrophic lateral sclerosis, or ALS. Most of us know it as Lou Gehrig's Disease. Szantyr can't eat or drink by himself. The formation of words is a struggle.

But Szantyr's mind still roams free. The computer age is his salvation. He communicates with friends through e-mail, and electronic devices like page-turners allow him to read, learn and grow.


And still he dreams.

Szantyr's ALS afterlife has transformed him into something he never imagined: an author. His first book, self-published, is called "Contending For the Faith," an exploration of how different religions interpret Scripture. His second book is nearing completion. Baseball fans will appreciate the irony of the title: "How Does A Red Sox Fan Get Lou Gehrig's Disease?"

It has been seen by one publisher, and it is batting 1.000 for rejections.

Szantyr has completed seven chapters. There are two to go. It takes him about two days to complete one manuscript page. He types using an on-screen keyboard, and a mouse that he guides over letters and lists of common words. He is now experimenting with



a new device that selects letters with the use of a laser retinal scan.

So what does he say in this new book with the funny title, and why should we be interested?

Here is an excerpt:

"It hit me on my second visit to the doctor's office when I noticed on the table adjacent to my chair, a pamphlet, the one with the player on the front and I was suddenly struck by the irony of me, a lifetime Red Sox fan, being saddled with a disease named after perhaps the greatest Yankee ever. That's just my luck! I murmured under my breath: Why couldn't I have Yaz disease and win the Triple Crown, or Ted Williams syndrome and bat .400?"

It's all like that, funny, heartbreaking, uplifting -- I sound like a dust jacket, I know -- but Szantyr's zest for living comes alive on the printed page in a way that can no longer happen in life.

The diagnosis

He can still remember when it started. He was officiating a basketball game in February of 2000. Szantyr described the onset of ALS to me this way in an interview done several years ago: "I first noticed it when I went to report a foul to the scorer's table. I could not move my fingers to call out the number of the player that committed a foul. I went home trying to stretch out my fingers. In March at a tournament game I felt awkward and stiff, like I was going to fall over."

It was confirmed as ALS in June of 2000. Most ALS patients die within two years. The lucky ones make it to five. If ALS attacks your upper respiratory system first you won't last a year. Szantyr is about to reach year seven. He doesn't know why he's lasted this long.

He smiles and says, "I'll take it."

Make no mistake: ALS will kill Paul Szantyr. It kills everyone it touches. It is only a matter of time. That's why Szantyr is not in the time-wasting business.


He describes a typical day like this: "I read the Boston Globe, online. Then I curse the Red Sox."

Join the club.

He then sets about his work on the computer. He sends and receives reams of e-mail each morning.

"He still hears from so many of his former runners," said his wife, Angela Szantyr.

The couple have no children. His students and his runners have been his children.

From his laptop computer propped up on his wheelchair, Szantyr does his research, talks to other ALS patients, queries publishers, and does in an e-mail what he cannot do in life: carry on a conversation with friends.

And he works on his book. He is tireless and relentless. Just ask the Department of Education.

As a teacher at Kaynor Tech for 15 years, Szantyr was nothing if not a bulldog. He coached boys cross country for nine years, and he makes sure you remember these key facts: "We finished last in 1993, we won the league in 1994, and we won the state championship in 1995." Nothing describes Szantyr better than that.

With the onset of ALS, the plumbing instructor couldn't teach using a hands-on approach. He adapted. He changed his lecture habits, he had upperclassmen demonstrate the use of tools, and he petitioned the state to purchase voice recognition software for his classroom computer.

But when he requested a handicapped parking space outside the plumbing shop, a ramp from his parking space to his classroom, and a special automatic door, the state said hold on.

Yes, he was being a royal pain, but yes, Szantyr just wanted to work. It was all he knew. It defined him. Going home to die didn't make sense for him.

He kept working even without the requested improvements, and when he filed a lawsuit against the Department of Education citing the Americans With Disabilities Act, he was placed on a paid administrative leave. By 2003, it became a moot issue. He could no longer work.

Szantyr details his labor struggle in his book. This is what he says in the preface: "…it is my hope that this book may serve as a blueprint of success for battling Big Brother when he insists that you can no longer be useful … and you know you haven't yet begun."

The lawsuit was settled and Szantyr received a six-figure award. But lawsuits and settlements could not undo what ALS had done.

The future


You can find Szantyr on most days at Barnes & Noble in Waterbury, after church service on Sunday, or on many weekday afternoons. Angela, a teacher at Naugatuck High, or Melody Adams, a family friend, set him up in the coffee bar. He surrounds himself with books.

If you see him, say hello.

Completing the book and getting it in print is his on-going dream. It is also Szantyr's last way of staying vibrant and alive in a world where he lost his franchise to contribute, to make a wise crack, or curse the Red Sox out loud, like the rest of us do. What bothers him the most is when someone asks him a question through his wife, or through Melody, as though he wasn't there, assuming that because he cannot speak, he also cannot think and contribute.

ALS is destroying his body, but his brain is untouched.

He is still a coach too. He still has ideas to help today's athletes, even if he isn't coaching. He remembers a column I wrote a few years ago, chiding city coaches for holding the city cross country championship everywhere but in the city.

"You were right," he said, which, by the way, is a first. "I went by Hamilton Park recently, and that would be a great place to host the city cross country championships."

Brace yourselves, city coaches and town officials, Paul Szantyr has found another cause.

Finding a book publisher will be his greatest challenge. Will anyone care what a dying man has to say? Szantyr thinks so. He has a story to tell, and as we've learned, he likes it when the odds are stacked against him.

"I always had faith," he said, struggling to enunciate each word. "I'm not waiting for a miracle cure. My faith is not dependent on healing. This disease will do what it wants with my body, but it will not touch my soul."

Joe Palladino can be reached ay jpalladinorep-am.com.

http://www.rep-am.com/story.php?id=12673&p=3
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