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UW researcher becomes her own Parkinson's 'Guinea pig'

DAVID WAHLBERG
608-252-6125
September 16, 2006

Jo-Anne Lazarus was washing her hair when she noticed something odd: Her right hand was moving in circles but her left hand wasn't.

Later, she had trouble getting keys out of her left pocket.

She saw a doctor and got a diagnosis: Parkinson's disease. The condition gradually slows movement, makes muscles rigid and causes tremors, usually leading to severe disability.

Unlike most of the 500,000 to 1 million Americans with Parkinson's, Lazarus didn't need to read up on the disease.

A UW-Madison associate professor of kinesiology, the study of movement, she had been researching Parkinson's long before she learned she had it.

She knew exactly how neurons in her brain were degenerating, creating a shortage of the chemical dopamine that coordinates movement.

She knew that the disease often starts on one side of the body and shifts to the other side.

She knew that drugs and surgeries can ease symptoms, but there is no cure.

Today, eight years after her diagnosis, the 57-year-old's athletic frame is slowly stiffening.

She walks with a slight stoop. Her left arm hangs in near suspension, barely swinging back and forth. If she puts down a coffee cup or cell phone with that arm, her hand freezes in a grasp.

She wears shirts untucked because she can't reach to tuck them in. She talks in a mumble unless she reminds herself to speak up.

But Lazarus isn't accepting her decline from Parkinson's passively. She's studying alternative treatments for the disease with the zeal of a patient and the scrutiny of a scientist.

It's a rare combination that makes her excited yet hesitant to talk about her controversial theory: that increased effort during certain movements might wake up dormant cells in the brain's basal ganglia, where dopamine is produced.

"It's not totally wacko," Lazarus said of the theory. "But it's not totally accepted either."

Her studies on acupuncture, finger tapping, speech therapy and tongue stimulation have shown promising results, which she has presented at conferences.

But Lazarus is quick to point out that the research is preliminary, involving only her and a few other patients. Larger studies would have to be conducted to form conclusions, she said.

"I use myself as a guinea pig," she said. "This is pilot data for now. We still have to work out all the bugs."

With an office in the university's Natatorium, she teaches and researches full time despite fatigue from the disease.

"I keep wondering when I should retire," she said. "But I'm so driven to find things out about Parkinson's."

Athlete to researcher

Growing up in Windsor, Ontario, Lazarus played five sports in high school: badminton, basketball, tennis, volleyball and track and field.

She concentrated on basketball at the University of Windsor, eventually landing in the college's sports hall of fame. She played point guard for Team Ontario in the Canada Games, the country's premier annual sporting event.

Kinesiology, the academic field of physical activity and movement, was a perfect fit. She got her doctorate at the University of Michigan in Ann Arbor, focusing on how children learn to use their hands independently.

When she came to Madison in 1985, she worked with children who had developmental disorders and adults who had traumatic brain injuries.

She also studied Parkinson's disease. In 1992, the journal Movement Disorders published a paper on a study she conducted.

When healthy people in the study flexed one arm, they had more strength and speed when moving a lever with the other arm. Parkinson's patients didn't.

The study suggested that the disease cuts off coordination between the body's two sides.

"Normal subjects utilize bilateral outflow to symmetrical muscle groups to synchronize the two limbs in the bimanual task," Lazarus wrote in a researcher's detached tone, "whereas (Parkinson's) patients dissociate the two limbs."

'On the cutting edge'

Six years later, the scientific pursuit became personal.

Lazarus initially thought the clumsiness in her left hand might be carpal tunnel syndrome. When it persisted, she saw a neurologist. In early 1998, he said it was Parkinson's.

Her familiarity with the disease didn't ease the shock.

"I found myself constantly thinking about it and wondering what was going to become of me," she wrote in her journal at the time.

Soon she realized that her role as a scientist, as well as a patient, put her in a unique position to confront the disease.

"I figured," she said in a recent interview, "I can stay on the cutting edge and benefit from that."

Her drive to learn more about Parkinson's has helped other patients, such as Helen Koberstein of Madison. Lazarus and Koberstein, 46, have started an informal support group. They have early-onset Parkinson's, when the disease strikes before age 50.

"She's always got information it would take me hours to find," Koberstein said. "She's an inspiration in terms of her energy and commitment to search for solutions."

That commitment was recognized last month by the Parkinson's Disease Foundation, which named Lazarus to its 14-member People with Parkinson's Advisory Council.

Though Parkinson's has slowed Lazarus down, she rarely allows the disease to bring her down, said Marilyn Annucci, Lazarus' partner.

"She's brave; she's hopeful," Annucci said. "She keeps trying to figure it out."

Acupuncture a cure?

Lazarus is leery of taking levodopa, the most widely used drug for Parkinson's. It often reduces symptoms, but it can wear off and cause uncontrolled wiggling.

Lazarus takes two newer medications, selegiline and mirepex. She hasn't considered surgery such as deep-brain stimulation, in which electrodes are implanted in the brain and hooked up to battery packs.

She is most excited about acupuncture. Last year, she read about a California acupuncturist who claimed the needle-based treatment could cure Parkinson's by opening the energy channel in the stomach. (Studies have suggested that some cases of the disease might be linked to infection of H. pylori, the bacterium that can cause ulcers.)

"I think she's a little bit off the wall," Lazarus said of the California acupuncturist. "But I also think she's on to something."

Lazarus had acupuncturist David Hassert of Middleton open her stomach channel.

"I was on a high for three days," she said. "I had no symptoms."

Her stiffness and fatigue eventually returned. But Lazarus continues to see Hassert every two weeks and feels better for two to three days afterward, she said.

She recently tested the concept by using functional magnetic resonance imaging, a type of brain scan.

First she stopped taking her regular Parkinson's medications. Then she underwent a scan before and after Hassert gave her acupuncture and some homeopathic remedies. During the imaging, she tapped her index finger to increase blood flow to the motor areas of her brain.

The scans showed more activity in the basal ganglia after the acupuncture and homeopathy, suggesting the treatments might help people with Parkinson's.

Lazarus presented the results in February at the first World Parkinson Congress in Washington, D.C. She wants to try out the idea on more patients.

"I swear by it, even though that's an anecdotal response from a scientist, which we aren't supposed to do," she said.

A developing theory

She has also studied finger tapping by itself. It can be difficult for Parkinson's patients to tap their fingers comfortably, Lazarus said. But it's easier, paradoxically, when they put more effort into it.

Tapping with effort activates the basal ganglia and could help recalibrate the motor system in the brain of Parkinson's patients, suggested a brain- scan study by Lazarus on four patients, including herself.

A speech treatment involving conscious vocal effort triggers similar improvements, she said.

Lazarus also has used a tongue stimulator called BrainPort, made by the Middleton company Wicab, for people with balance problems. In a study of three Parkinson's patients, including Lazarus, the device improved posture and the speed with which the patients could tap their fingers.

Lazarus gave a talk about the four treatments to scientists this June in Denver.

The researchers were "intrigued but not convinced," she said.

"That's OK," she said. "It's just my theory. I'm early on in my thinking about it."

Lazarus said she intends to keep studying the disease as long as she's able.

Her personal history of resilience suggests that may be a long time.

After Lazarus was thrown off an amusement park ride as a young woman, she rode the ride again. When she broke a bone water skiing, she returned to the same lake and skied behind the same boat. She was bitten by a dog in the face. Yet she and Annucci have a fluffy, white Coton de Tulear.

"I don't give up easily," she said. "I always like to get back on the horse."