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