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  ALS hasn't paralyzed writer's aspirations
Posted December 16, 2002 in PALS Profiles

Ismail Tsieprati has written two screenplays and two stage plays spelling out sentences, letter by letter, using a half-blink with his right eye and self-designed alphabetical shortcuts.

A 67-year-old film producer from Simi Valley, Tsieprati discovered he had a sometimes-fatal neurological disease more than a decade ago. Since then, he has learned how to do more with less.

"I had to make a choice to give up or go forward," spelled out the Simi Valley man. "I choose to go forward."

Tsieprati has amyotrophic lateral sclerosis -- ALS -- a disorder that attacks the nerves and muscles. It is known more commonly as Lou Gehrig's disease, named after the famed New York Yankee slugger who died of the disorder in 1941.

When a muscle has no nourishment, it atrophies, or wastes away. In Tsieprati's case, nerve cells in the brain and spinal cord, known as motor neurons, gradually degenerate, causing the muscles under their control to weaken and waste away. While the disease paralyzes the "voluntary" muscles, patients like Tsieprati remain alert and able to think clearly.

Twelve years ago, Tsieprati underwent a tracheotomy and began using assisted ventilation, which enabled him to breath and keep working as a video producer and editor. He used specially adapted video editing equipment he operated with foot controls. When he was no longer able to use his feet to control the equipment, he focused on screen writing. He recently completed a 300-page action-adventure screenplay, "Express from Bogota," on a laptop computer with special software and an infrared eye-blink switch.

ismail2.jpgWith help from his wife, Cheryl, he came up with a special alphabet chart to spell out words using slight eye blinks. For example, the number 1 correlates to four letters: A, B, C or D; the number two correlates to E, F, G and H, and so on.

When Tsieprati communicates, his wife of 32 years, Cheryl, stands at his side, and says numbers, one at a time, until he blinks once for "yes," or twice for "no." Once he has chosen a row, Cheryl moves through the letters A, B, C or D. Once she says the letter he wants, he blinks once, and Cheryl goes on to the next letter.

When his wife isn't there, Tsieprati uses a similar method through a computer with an infrared switch that attaches to his glasses and picks up on his eye blinks.

With this form of communication, Tsieprati co-wrote, directed and produced "Caring for the Caregiver," a 28-minute educational video for caregivers, now distributed by Program Development Associates in New York. He produced "It's Your Choice," a 26-minute educational video to assist patients' decision-making concerning long-term mechanical respiratory support. He also directed, edited and produced "What is ALS?" a 15-minute video for the National Amyotrophic Lateral Sclerosis Association.

Today, his goal in life is to help others who might face the same challenges he has faced for the past 12 years.

"I would like to give hope to other patients like me," he spelled out.

Norma Brody, a Simi Valley literary agent, met Tsieprati about 15 years ago, before he became paralyzed, when he put on a musical at the Moorpark Playhouse on High Street. Today, she hopes to represent his screenplays.

"His mind is still extremely active, and he hasn't quit," Brody said.

"He is a wonderful inspiration for all people that one should never give up, that you should follow your dream, no matter what."

Born and raised in Albania, Tsieprati came to the United States in his 20s and attended City College of New York, where he honed his love for the film and video business. He knows five languages: English, Albanian, Italian, Greek and Russian. When he's not working on a screenplay or educational video, Tsieprati enjoys Westerns featuring John Wayne or Clint Eastwood.

Looking back, Tsieprati admits he and his wife have faced and overcome many challenging times. Support from God, nurses and doctors, and ultimately the love of his wife, are what keep him going.

"If it wasn't for you," he communicated to his wife, "I would not be here."

As a caregiver, Cheryl Tsieprati said she underwent a period of depression and fear when her husband was first diagnosed. His confidence and spirit gave her hope for the future.

"I think he's amazing," she said.

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