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Outrunning Parkinson's

After many steps in her battle, she's back to compete and raise funds and awareness.

By ALEXANDRA ZAYAS
Published February 16, 2007


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TAMPA

Erica Mandelbaum is a machine. Not because of the four electrodes implanted in her brain, or the batteries buried into her chest. But because she never stops. She runs for miles and miles along the same curvy, scenic Davis Islands path every day. Behind her, she's got eleven years of tears, operations and scars that started with a diagnosis of Parkinson's disease when she was just 39 years old. Ahead, she's got Saturday's Gasparilla Distance Classic 15-kilometer run. She can't stop, she said. She's running for her life.

Mandelbaum held up her trembling hand for the orthopedist in 1997.

She thought she'd damaged a nerve along with the bone she broke when the bedroom door slammed shut on her hand.

He thought she should see a neurologist.

She lay still in several cramped, noisy machines as they probed her brain. They didn't detect anything, but the tremor didn't go away.

One doctor told her the tremble was all in her mind, and suggested a psychologist. Another gave her some pills, used to treat Parkinson's disease. He told her that if the shaking stopped, she had the degenerative disorder of the central nervous system.

The shaking stopped.

Shock set in. Then came depression. Although drugs can help relieve the symptoms, the disease has no cure.

She clung to her beloved pastime and ran as long as she could. It helped her fight the depression. She did her best thinking while she ran.

But the woman with running trophies on her shelves - who once finished a Gasparilla race among the fastest 100 women - slowed to a jog, then a limp. She couldn't even pour coffee without spilling it.

The doctor offered her a scary solution: a radical new treatment called deep brain stimulation that required the surgical implantation of an electrical device often described as a pacemaker for the brain. She was terrified, but her husband, Sam, urged her to take the risk. The year was 2003.

She traveled to Georgia and met surgeons at Emory University Hospital. They injected an anesthetic into her forehead. Then they screwed a halo into her skull. She had to stay awake the whole time, showing doctors she could move her hands, tongue and count backward on command, so that they could make sure they implanted the device's electrodes in the right place.

The results amazed her. Mandelbaum ran the Gasparilla 15-kilometer race to celebrate her chance at a normal life.

Then the Parkinson's caught up and hit the left side of her brain with a vengeance.

"My worst fear came true when I lost the ability to write," said the woman who writes for a living, as coordinator of internal communications at Tampa Electric.

In November of 2006, Mandelbaum met surgeons at the Cleveland Clinic for Round 2 of the operation. She says she wasn't scared. "My emotions range from ecstasy at the successful outcome to gratitude for the doctors' skill."

Recovery was tough, but before long, she slid into her running shoes again. She gets faster every day.

- - -

"That's how you go to war," she said. "You don't sit around feeling sorry for yourself."

Her weapon, apart from running, is a push to fund disease awareness and raise funds for stem-cell research.

She befriended Rasheda Ali, whose boxing legend father Muhammad Ali was diagnosed with the disease in the 1980s.

She pushed her way to the front of a John Kerry campaign stop to meet a fellow Parkinson's fighter, actor Michael J. Fox.

"I've met some amazing people," Mandelbaum writes. "I've spent time talking to strangers, bound together by an ugly disease, all searching for answers."

At the airport, Mandelbaum can't walk through security screening machines because of the devices inside of her. Guards pat her down instead.

She has to wear two sports bras to keep the batteries in her chest in place.

Mandelbaum turned 50 last October. Her goal is to be able to hold her grandchildren one day. Her son Ben is 19. Her daughter Lia is 23.

Her husband will race alongside her with colleagues from his law firm. "Don't be embarrassed when I leave you in the dust," she teases.

She stays up late at night watching Sex and the City and wears high heels like Carrie Bradshaw.

Having grown up as a very Reform Jew, she never had a bat mitzvah ceremony. Now, she's preparing for hers.

Mandelbaum looks forward to a lot of things. Especially Saturday's finish line.

Alexandra Zayas can be reached at 226-3354 or azayas@sptimes.com.

[Last modified February 15, 2007, 08:32:28]


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