By Alicia Doyle

The Writer
Specializing in Good News
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Photo by ANTHONY PLASCENCIA/the star

Couple writes book about life with Lou Gehrig's disease

December 29, 2014/Ventura County Star

SIMI VALLEY, Calif. - Sometimes it took two days to write one page of “One Blink at a Time,” a book about a Simi Valley man who has lived for 30 years with Lou Gehrig’s disease, according to Ismail and Cheryl Tsieprati, the authors who recently celebrated their 44th wedding anniversary.

“I have survived on a ventilator for years and never give up,” Ismail, 79, spelled letter-by-letter through a half-blink and an alphabet chart memorized by his wife.

“Always be positive,” he said. “Try what you can do and forget what you cannot do.”

The Simi Valley couple’s memoir, published in early December by Blue Point Books, presents a 30-year retrospective about the challenges faced by a person with amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease, and the caregiver.

“It is a book about living, not about preparing to die,” said Cheryl, 67, noting chapters explore the couple’s battles, triumphs and lessons learned.

ANTHONY PLASCENCIA/the star Ismail Tsieprati, a 79-year-old Simi Valley resident
who has lived with ALS for 30 years, communicates by using an eye chart to blink messages.

The book also offers advice including training caregivers, preparing for emergencies and surviving the hospital, as well as an appendix containing a glossary and resources, she said.

“We are hoping our book will be able to give others hope and also information that could be helpful ... as well as what we have learned along the way that can give people encouragement,” Cheryl said.

Her husband was a thriving film and video editor, producer, director and writer when he was diagnosed with amyotrophic lateral sclerosis, which eventually left him unable to move, speak or breathe on his own.

“His eye blink is growing a little weak, which is kind of frightening because ... the brain is never affected by ALS,” his wife said. “Your mind is totally alert, thinking, wanting to express things; you want to say things but you’re not able to communicate with the outside world.”

In the book, Ismail states: “When I get tired, it becomes harder for me to blink my eye. Although it’s sometimes tiring ... I know Cheryl and I will find new ways for me to continue to communicate and work on books and other projects. I’ll never give up my fight.”

Most of the stories one hears or reads about his disease are negative, Ismail writes.

“We wanted to show that a person can have a positive life, even with ALS,” he writes. “With the help of technology and a great spouse, a good diet, excellent care and the love of family and friends, one can have a quality and productive life.”

The couple is hopeful about new technology that could enable him to “type” using the movement of his pupils through eyeglasses linked to a virtual keyboard placed in his line of vision.

“With the eye gaze, he can select different letters and spell out words. He can also select a button switch to have the glasses speak the words so he’d get his communication back,” said Cheryl, whose husband will receive a prototype in March. “You can also hook it up to a computer so you can navigate the Internet. From there, maybe he can write screenplays all by himself.”

Meanwhile, the couple is currently writing a musical about making a musical with the tentative title, “It’s a Rap.”

When asked why he has beaten medical odds by living longer than most with ALS, Ismail spelled a sentence for his wife: “Every day I look forward to being with you and working on different projects.”

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PHOTO BY ANTHONY PLASCENCIA/the star Ismail Tsieprati communicates a message to Cheryl at the couple’s Simi Valley home. Ismail communicates by blinking, a technique he used to co-write a book.

Copyright 2014 Scripps Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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