Parkinson's progress.

What causes Parkinson's disease?

Bayne: The area of the brain called the substantia nigra starts to die. That's where the dopaminergic cells are, so production of dopamine goes down, upsetting the exquisite balance with acetylcholine in the brain. That balance is what gives us normal body movement and when it's upset, the result is the movement disorder known as Parkinson's.

But the imbalance affects other areas of the brain as well, such as seratonin uptake. One of the symptoms of the disease I must deal with every day is clinical depression.

How close are we to discovering the cause?

Bayne: The scientists I've spoken with, including J. William Langston, MD, president of the Parkinson's Institute in Sunnyvale, California, say we're very close. Two to five years is the figure used by many research scientists.

What research is underway on finding a cure?

Bayne: Stem cells are at the forefront. In April, researchers announced that, for the first time, they were able to take neuro stem cells out of an adult human being and grow them in vitro. If that's true, we'll be able to avoid the whole controversy about harvesting fetal stem cells--the scourge of the pro-lifers. Also, if we can harvest cells from a patient's own body, we can make millions of healthy cells and put them back in the patient's body without triggering an' immune response.

Is that the cure you said is two to five years away?

Bayne: Yes. The cleanest way to cure Parkinson's is to replace the domapinergic cells that have died.

Short of a cure, is there any way to control the disease?

Bayne: It's very difficult to control Parkinson's by taking pills. The gold standard is what I'm on, Sinemet, which alleviates the symptoms of Parkinson's because it supplies dopamine. The problem is, within five years 80 percent of those who take it develop dyskinesia, or random involuntary muscular movements, which can be worse than the Parkinson's itself. Michael J. Fox had surgery to take care of the symptoms, even though it was considered risky because it involves killing part of the brain.

A less risky solution involves implanting a sort of pacemaker in your brain, which is wired to a device implanted under your clavicle. You can control the current, and if it causes side effects it can be either reprogrammed or removed.

What other treatments are there?

Bayne: I'm on a dopamine agonist. It looks like dopamine but isn't actually, and therefore is less likely to cause dyskinesia.

Everything simply alleviates the symptoms for a limited period of time. Ultimately, every Parkinson's patient ends up the same: typically immobilized, and often with dementia as well.

Why do you think we're not closer to a cure?

Bayne: The biggest problem is the controversy surrounding fetal cell tissue. The other problem is funding. One is tempted to blame the NIH. In 1995, for example, it provided research grants for HIV-related projects amounting to about $1,400 per person with HIV, while Parkinson's received grants amounting to about $28 per person.

But the reason HIV/AIDS funding is so high is because the patients themselves got behind it and lobbied. The same goes for breast cancer. And spinal cord injury research, which was in the dark ages until Christopher Reeve fell off his horse. We need to do what these communities have done. Until we do, we remain victims, letting other people choose our destiny for us

Almost all scientists agree that, of all the neurodegenerative diseases, Parkinson's is the closest to a cure. That's why it's so frustrating for people like myself, who have to live every day with this tremendous monkey on our backs.

How much would it cost to get there?

Bayne: One hundred million dollars. I got that figure from the Morris Udall bill. He left [Congress] because of Parkinson's. In 1997, NIH reported that it was spending $89 million on Parkinson's research, but an independent study found that 38 percent of the money was "unlikely to have residual or direct benefit to finding the cause, pathogenosis, and/or potential therapies for Parkinson's disease."

If we could find a way to direct every penny of $100 million toward Parkinson's research, that might do it: Considering the [estimated] $25 billion annual cost of the disease, that'd be a pretty good investment.