Man With No Voice Has A Lot To Say
Man Diagnosed In 2000 With Lou Gehrig's Disease
Video: Bed-Ridden Man Hoping To Release Book
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POSTED: 7:29 pm EDT October 9, 2008
UPDATED: 8:32 pm EDT October 9, 2008


PRESTON, Conn. -- Paul Szantyr has a lot to say -- but he can’t speak.

After he was diagnosed with amyotrophic lateral sclerosis -- Lou Gehrig's disease -- in 2000, Szantyr lost his ability to speak.

But he’s not completely cut off from communicating. He’s able to use a computer to relay his thoughts to those around him.

A former tennis player, New England karate champion, basketball official and coach of the Kaynor Tech boys cross country team -- which won the only state championship in the school’s history in 1995 -- Szantyr was a model of health and fitness.

“I was shocked,” he said, via his computer. “I was running 30 to 40 miles a week, pumping iron. I thought I was a paragon of fitness, indestructible even.”

The voice speaks through the computer for Szantyr is part of the ERICA program, an eye-gaze response interface computer system.

The computer systems cost about $10,000 each, but the Milford-based Voice for Joanie Association raises money to buy the equipment for those in need.


“It’s very rewarding, very rewarding, to be able to walk into someone’s home and leave them with a communicator, so where they weren’t able to speak before, now they’re able to let you know what they need, what they want,” said Shirley Fredlund, of voiceforjoanie.org.

“ERICA is the single most important piece of technology I have because it has restored to me the gift of communication,” said Szantyr. “And the tech support has been outstanding through the years. Now, if I can only get the wheelchair company to follow their example.”

Through his use of the ERICA system, Szantyr has written a book that he’s hoping to soon have published. His manuscript details the fight he endured to keep his job as a longtime high-school plumbing instructor.

The book is titled “How Does a Red Sox Fan Get Lou Gehrig's Disease?”

“I find writing to be cathartic,” Szantyr said. “I am an educator at heart. I want to teach those in the health-care industry about the devastating effects of this disease.”

This past June was the eight-year anniversary of Szantyr’s diagnosis. The average life expectancy for an ALS patient is three to five years.

“Since my diagnosis, I have lost my walking, my modesty and my speech,” Szantyr said. “The thing I miss most is my speech. It’s been so long, for example, since I've been able to tell my wife I love her with my own voice.”

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Since my diagnosis, I have lost my walking, my modesty and my speech. The thing I miss most is my speech. It’s been so long, for example, since I've been able to tell my wife I love her with my own voice.
-- Paul Szantyr

I'm proud to say that Mr. Paul Szantyr was one of educators and of of my best friends in high school. Of course, i can say that years later, looking back. I was a baseball player since 5 years old, and very good. I attended Kaynor tech high school in 1992, was an honors student, and chose plumbing is my trade of choice in 1993 (Mr. Szantyr's shop). Mr. Szantyr's education style was forthright, humorous, and stern all into one...making it a pleasure to be one of his students.

It was obvious. after some time, that this man was a specimen of physical fitness. He rarely ever mentioned his background (or at least was humble). After some research, discovering he was a very recent New England black belt champion!

It wasn't until the fall of my junior year that Mr Szantyr convinced me to attempt to run track and field (in which he was a first time coach). He just had a inspirational way about him. Almost in a salesman/comedian sort of way. I mean, i played baseball, a spring sport, so what did i have to loose. Long story short, i did very well, and decided to play ball the spring of my junior year, and ran all of senior year. A very difficult decsion, but one of the best decisions of my life.

I was a member of the first ever 1995 Kaynor tech championship team mentioned in the article. In fact, I was captain of the squad. I went on to obtain a partial running scholarship at Southern Connecticut State University, got my bachelors degree, have a great career, and now live in south florida with my darling wife, and are expecting a baby girl on Christmas day.

Mr Szantyr was a great comrad from the moment I met him. Maybe i didn't know it then, but i really began realizing during my senior year. He was behind the strength i needed to continue on to college. This great man lives to help other human beings achieve everything they can imagine. I owe so much to Mr. Paul Szantyr. It was the little things we joked about that brought us together, his love of the red sox, his love of tennis, and so many others. I would, of course be in contact with him during my collegiate career, keeping him abreast of my training.

Fate would have it, that during one of my college womens basketball game, of which Mr Szantyr was one of the referries, he would first have an ALS symptom. I was doing one of my usual running warm ups just before that game, and Mr Szantyr approached me with his usual "Hey Johnie!!!!".

I maintained contact with him for a few years more until i moved away to New York, and eventually Florida. This is by far, one of the greatest men I have ever come in contact with in my life. He had the biggest influence on
where i am today. It is of no surprise that he is beating this illness, and i pray that he continues to do so. I can go on and on about him, such a wonderful human being.

May God bless Mr Szantyr and his wife.