ALS (Amyotrophic Lateral Sclerosis), is an insidious disease which kills by destroying nerve cells that allow the brain to control muscle movement. As paralysis spreads across the body it will eventually reach the muscles of the diaphragm and result in respiratory failure. A patient diagnosed with the disease is typically given two to five years to live.
The disease is commonly known as Lou Gehrig’s disease, after the former New York Yankees’ star who died of it in 1941, and is also widely known because of its impact on Professor Stephen Hawking, perhaps the most brilliant physicist of the 20th and 21st century.
Despite the bleak future which doctors estimate for most patients, there are excpetions. Hawking, for example, was diagnosed in the 1960’s and is still alive. Hawking’s story has been captured in the award winning film “The Theory of Everything” based on the book written by Hawking’s ex-wife.
Also, in their new book ‘One Blink at a Time’, Ismail and Cheryl Tsieprati share how they teamed up to overcome each and every challenge ALS placed before them.
An upbeat, inspiring story of courage and optimism, the book describes how Ismail and Cheryl each, from their perspective, dealt with the formidable challenges of living with ALS for the past 30 years.
“Although ALS has stolen Ismail’s ability to move, speak, even to breathe on his own, it has not taken away his determination to live a happy and productive life,” Cheryl says. “Ismail spelled out his chapters using eye blinks, letter by letter, word by word.”
“People are amazed that I have survived ALS for thirty years and still feel good and enjoy life,” Ismail writes in the book. “They want to know how I’ve done it. They ask me how I can continue to wake up every morning, totally paralyzed and unable to talk or to eat, and still want to go on after so many years. The answer is simple. I have a lot to live for.”
Cheryl says people frequently ask her how she has survived being a caregiver for her husband for thirty years. “I have made it,” she answers, “because Ismail, despite his illness, the pain he suffers every day, and his physical limitations, continues to enjoy life and be upbeat, good-natured, and loving.” She adds “We are one another’s rock, and together we’ll keep going.”
Ismail said he hopes One Blink at a Time will give other people in situations like his encouragement and hope.
Going beyond telling their story, the book contains practical advice from training caregivers to preparing for emergencies to surviving the hospital.
Ismail communicates by blinking his eye with the help of a spelling chart that consists of numbered rows of letters and a row of numbers. Cheryl or a nurse calls out the numbers of each row, and Ismail blinks when he hears the number of the row he wants. He blinks again when he hears the letter he needs.
“Letter by letter, I spell out words,” he says. “Words build into sentences. With these words and sentences I can express my feelings, dreams, hopes, and daily needs.”
“As helpful as Ismail’s eye blink has been to us over the years,” Cheryl writes, “we know there may come a time when Ismail could lose his ability to reliably blink his eye and will no longer be able to use this method of communication. So we are constantly on the lookout for new technologies.”
More information about the book and their story can be found online at: www.oneblinkatatime.com.