An author's lifelong battle with disease
By JORGE SANCHEZ, Times Staff Writer
INVERNESS -- As a boy, Carmine Petrangelo battled a disease that caused his muscles to contract into unnatural postures, then suffered again from repeated misdiagnosis which prevented him from getting proper medical care for many years.
The cruel pincers of pain and emotional trauma caused by people's attitudes toward his disability forged an idea for a book about his medical journey. The book Surviving Dystonia, is a skillfully crafted work which takes readers into his personal odyssey as he seeks first to understand, and then to control dystonia.
For many years, doctors accused him of faking his illness.
"I remembered how it made me feel when they said I was faking," Petrangelo said. "And I thought that it shouldn't happen to anyone else.
"That's probably the main reason I wrote the book."
Dystonia was poorly understood in the 1950s. Petrangelo, 53, first noticed its effects when he was in the fourth grade. He would squirm around a lot when seated as his school desk. Then his right leg would move around uncontrollably. That marked the onset of the dystonia which eventually moved up his body, twisting his upper torso.
As the symptoms worsened, Petrangelo had to devise methods of keeping his body under control. He would lean and press his body against walls and desks in an attempt to keep still.
"It was like a chess game," he said. "For every involuntary move, there was a voluntary move. It was a war between the muscles I could not control and the muscles I could control."
It took about eight years, but finally, in his junior year of high school, a doctor diagnosed dystonia. His disease finally had a name. Better still, the medicines he took, Artane and Kemadrine, put an end to the twisted muscles.
Petrangelo finished high school, married, had a daughter, divorced and eventually moved to Inverness. He is well-known as a government activist and served as president of the Citrus County Taxpayers Association for six years until 1997.
Petrangelo controls his dystonia with medication and a spinal cord stimulator, electrodes implanted under his skin and attached to portions of his spine. The spinal cord stimulator uses electrical currents to block pain and counter the effects of dystonia.
Today he appears normal, with no trace of disability. "I thought about that before I started writing. This is very personal. But then it hit me: I needed to bring this out in the open. Why should people be ashamed of a disease?" he said.
Petrangelo worked on his self-published book about 18 months before it was published in December. He worked with two local editors who tightened the lengthy prose into more compelling literature.
"I actually wrote the book in about two months. But I knew that my first draft was just that. It needed a lot more work before I could be proud of it," he said.
The book is filled with details of his childhood, sometimes so vivid that Petrangelo was surprised he could recall them.
"I started out by taking notes of memories, and they just kept popping into my mind. The deeper I got into it, the more I would remember," he said.
Obviously, many of those memories are linked to negative incidents.
"They were easier to remember," he said.
Petrangelo's storytelling technique switches between his thoughts and feelings to his interaction with medical professionals.
"I tried to tell it in layman's terms, because that's exactly what I am," he said.
Surviving Dystonia is a story about overcoming disease and coping with an often callous medical community.
"It was a little therapeutic for me," he said. "But I wanted to circulate the name dystonia and make people, both patients and doctors, aware that it exists," he said.
The book is available at the Top Shelf bookstore, in the Citrus Center plaza on State Road 44 W, Inverness, and on Amazon.com.
-- Jorge Sanchez can be reached at 860-7313 or firstname.lastname@example.org .
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