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Making Book: A Spirited Fight to Continue Living

March 6, 2008 By:
Frank Rosci, JE Feature
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Courage comes in many forms. We're all captivated, for instance, by accounts of people who rescue others from burning buildings and tales of wartime bravery. Yet sometimes, we discover equally heroic stories of people who struggle day in and day out with some type of severe physical handicap.

Such is the particular courage of Josh Winheld of Cheltenham, who was diagnosed with Duchenne muscular dystrophy before he turned 5. Known as a "wasting" disorder, Duchenne is a terminal disease that causes skeletal and heart muscles to weaken progressively. It is the most common form of muscular dystrophy and occurs once in every 3,500 births, largely among boys.

There is no treatment and no cure. Many of its victims don't live past their 20s. Winheld, who turned 30 on March 4, is considered among the oldest surviving Duchenne patients. He has been in a wheelchair since the age of 10, needs a ventilator to breathe, a defibrillator to regulate his heart, is nourished by a feeding tube and has round-the-clock nursing care.

He is nearly completely paralyzed, but is able to move his head and operate his motorized wheelchair with a slight movement of his fingers.

Over the past 251/2 years, he has endured his affliction and its challenges with determination, grit and grace, detailing his ordeal and sharing the spirit of the hope that has sustained him in Worth the Ride: My Journey With Duchenne Muscular Dystrophy, his autobiography that just came out.

His first book-signing event will be on Sunday, March 9, from 1 p.m. to 4 p.m., at Reform Congregation Keneseth Israel in Elkins Park (synagogue telephone: 215-887-8700).

"For a long time, people had told me I should write a book about my life. So, I began in late 2005, finishing the basic part of the book a year later, using 500 pages of my medical history as a base, and writing about my personal history, also, even though some of it, especially socially, was embarrassing," said Winheld, who earned a journalism degree from Temple University in 2000.

He lives at home with parents Michael and Linda, and younger sisters Amy and Stephanie. No one else in his family has the disease.

Need to Contribute
"I had a tracheostomy and wasn't doing that well for a time, including emotionally, because of all the medical stuff. But I thought I had to do something because, as a person, I feel you should contribute something to the world, which I learned from my parents.

"People don't realize what they can handle until they have to, but I don't think I'm unique in that way. I'm not really happy with myself because I'm a goal-oriented person who always wants to do more. The hardest thing is to keep myself motivated because I don't know how much time I have left," he explained.

Winheld said that he wrote the book for all of the other patients and parents who are and will go through what he and his folks have.

"I wanted to talk about all of my experiences, the good and the bad, so that others can avoid the mistakes. I'm lucky; I was able to finish the book," he said.

All proceeds from sales of the book, acknowledged Winheld, will benefit Parent Project Muscular Dystrophy (www.ppmd. org), a nonprofit group in Middletown, Ohio. 

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