The Parkinson's Puzzle

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WORKING 70 HOURS A WEEK as the principal of a large charter school in Chula Vista, Catherine Rodriguez found it easy to blame her symptoms on stress. She had difficulty sleeping and developed a small tremor in her right hand. She agreed to see a doctor even though, at 44, she saw herself as a healthy, athletic woman who just was under a lot of pressure at work. But after visits to an internist and two neurologists, Rodriguez had to confront a consistent finding: She had Parkinson’s disease, an incurable, degenerative brain disorder.

“I didn’t know a thing about the disease; I thought it was something only old people get,” she says today, six years after her diagnosis. “My husband asked me if I was going to die. None of us had a clue. All I could think about was ‘How is this going to change my life?’ ”

Unlike Rodriguez, Alex G. suspected he had Parkinson’s, because he had noticed symptoms for two years before his diagnosis in 2004. An active 52-year-old who worked out daily and ran 25 miles a week, he was experiencing tremors in his left hand, had trouble with some spontaneous movements, and his handwriting was becoming less legible. His speech occasionally was slurred, and he tended to lean to the right when walking.

“I opted to wait before starting the prescriptions,” Alex says, “but by March 2005, it was like I was in a vat of molasses.” He began taking medications that have reduced many of the more troubling symptoms. While his family and close friends know he has Parkinson’s disease, Alex, a business executive in the communications industry, has not told his employer.

“I just don’t know how they’d react,” he says. To help disguise his tremors, he carries a pen, tablet or water bottle to tap against his leg as he walks through his office—easily taken as a common nervous gesture.

“If you want to thin people out of your life, just tell them you have Parkinson’s,” says John C., a retired East County attorney whose disease has progressed quickly since his diagnosis three years ago at age 67. He now requires assistance walking, bathing and dressing. “People have seen Muhammad Ali and [Pope John Paul II], and they don’t want to be around you when you start to jingle-jangle. Whether it’s out of fear or ignorance, they don’t know how to handle it, so they stay away.”

Diagnosed with Parkinson’s 20 years ago, longtime San Diego publicist Jan Wood, 83, continued to work until five years ago, when she became bedridden, requiring 24-hour care. “I refused to give in to the disease,” says Wood, who for more than 30 years produced and hosted Tijuana: Window to the South on local TV. “I made myself keep busy. But when I couldn’t walk and see clients, I had to give it up. The worst thing about Parkinson’s is you lose your identity. My work was my identity.”

MORE THAN 1 MILLION AMERICANS are affected by Parkinson’s, a progressive disease that—after Alzheimer’s disease—is the most common neurodegenerative disorder. One of the most frustrating and fearful aspects of the disease is its unpredictability. Not everyone exhibits the same symptoms, and it’s unknown how quickly Parkinson’s will progress in any one patient.

Parkinson’s occurs when nerve cells in the midbrain area that produce the chemical dopamine, responsible for smooth-muscle activity, die or become impaired. The average age of onset is 60, and typical symptoms include trembling in the limbs or face, rigidity, slowness of movement and impaired balance and coordination. While the disease isn’t fatal, patients often have difficulty walking, talking, swallowing or performing such basic tasks as buttoning clothes or cutting food.

The cause of Parkinson’s is not known, although some scientists believe a likely scenario involves a genetic susceptibility to the disease coupled with exposure to certain environmental toxins, such as pesticides and insecticides, later in life.

No treatment has been proven to slow or stop the progression of Parkinson’s; instead, therapies aim to treat its symptoms. Common treatments include the drug levodopa to help the brain produce dopamine, and a variety of drugs known as dopamine agonists, which imitate the role of dopamine. They’re not always effective and may cause unpleasant side effects such as nausea, sleepiness and confusion. For some patients, brain surgery can ease symptoms.

“Parkinson’s may not be as tragic as the devastation seen in Alzheimer’s, but it has a dramatic impact on a person’s ability to function and have [a certain] quality of life,” says Ron Hendrix, executive director of the Parkinson’s Disease Association of San Diego.

The association offers a broad range of support and education programs for the estimated 15,000 Parkinson’s patients in San Diego and their families, including subsidized transportation and in-home care. It also has funded more than $700,000 in research grants.

“San Diego is viewed as having one of the best conglomerations of neurological scientists in the world,” says Hendrix. “Some great research is going on here. It’s a very exciting time.”

ONE NOTED LOCAL RESEARCHER is Dr. Clifford Shults, professor of neurosciences at the University of California, San Diego School of Medicine and neurologist at the Veterans Affairs San Diego Healthcare System. His research focuses on the biology of Parkinson’s and translating that to create better treatments.

Shults was the lead investigator in a widely publicized clinical trail of early-stage Parkinson’s patients who were given high doses of coenzyme Q10, a dietary supplement with antioxidant properties. Results showed the naturally occurring compound had a positive trend to slow the progression of the disease.

When his report was published in 2002, Shults urged Parkinson’s patients not to start taking the supplement, saying the study—with only 80 patients—was too small to be conclusive. This year, Shults will help launch an expanded clinical trial of coenzyme Q10 with 600 Parkinson’s patients. He also is working to develop a blood test that would screen for Parkinson’s disease in much the same way a PSA test screens men for prostate cancer.

Shults is optimistic about possibilities offered in the highly experimental field of gene therapy to treat Parkinson’s. He is a scientific advisor to the Michael J. Fox Foundation for Parkinson’s Research, which last year awarded a grant to San Diego biotech company Ceregene to begin clinical trials with a nerve growth factor that, in animal trials, slowed or stopped the progression of the disease.

Transplantation of stem cells to increase dopamine production in the brain often is cited as another promising area for fighting Parkinson’s. Shults, however, is skeptical of claims that stem cells can cure Parkinson’s disease.

“You could convert stem cells into dopamine neurons and put them in the appropriate part of the brain, but there’s still a major shortcoming,” he says. “The pathology of Parkinson’s disease isn’t limited to the dopamine system; other parts of the brain are affected. While you might improve the ability to move, which would benefit patients substantially, stem cells transplanted into just one region of the brain won’t affect all parts of the brain that are impaired.”

FOR NEWLY DIAGNOSED Parkinson’s patients, Shults offers encouragement by dispelling two common misconceptions people have about the disease.

“Patients often assume they will do poorly, but many do well. I have cared for patients who are active 20 years after the diagnosis,” he says. “Patients also have often heard that levodopa will be effective for a limited period, and this is not true. While patients will gradually need higher doses of levodopa as the disease progresses, typically levodopa will continue to help with movement.”

What does the future of Parkinson’s research hold?

“Finding a cure would be like hitting a home run,” Shults says. “Realistically, over the next five to 10 years, I think we’ll see improved therapies that will be quite beneficial for patients. What we really want to do is slow the progression of the disease so symptoms that now may appear in five years take 10 or more years to occur. Ultimately, we want to stop the progression of Parkinson’s disease completely and to cause regeneration of the injured parts of the brain.”

Patients who spoke to us are optimistic.

Rodriguez has retired from work and now uses her school-administration skills as a board member of the local Parkinson’s association. And Wood, though bedridden and “bored to tears,” retains her characteristic good humor.

“I would tell anyone who’s diagnosed with Parkinson’s to make himself or herself stay active,” says Wood. “You have to be involved. It may seem like the end of the world, but it isn’t.”

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The Parkinson’s Disease Association of San Diego, 858-273-6763, pdasd.org, offers information for patients and families, in addition to sponsoring educational forums and providing current research.

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