Parkinson's patient sees hope in new surgery Fetal tissue procedure is controversial

LOS ANGELES — LOS ANGELES -- It was only because he was such an avid athlete that Rod Preston noticed the little problem in his right leg when he jogged. After a couple of miles, it was as if his leg 'D stopped obeying the silent, automatic commands of his brain.

But the feeling would pass, and Mr. Preston shrugged it off. Probably just a pinched nerve.


It was 1982, and Mr. Preston was working at a pharmaceuticals firm and pursuing a business degree at California State University, Northridge.

"I was the kind of a guy who would surf 'til the sun set and ski down and climb up mountains," recalls Mr. Preston, 42, of suburban Moorpark.


As the years passed, Mr. Preston's nagging symptoms worsened. He was misdiagnosed as having a congenital defect in his back and told to stop jogging.

And then, in 1985, his right arm started behaving strangely, too. People noticed that his arm didn't swing properly when he walked. He finally consulted a neurologist, who told him after a battery of tests, "If you weren't such a young buck, I'd say you had Parkinson's disease."

Look it up in a medical dictionary and you'll find words like debilitating. Progressive. Crippling. There is no cure.

When the diagnosis was confirmed, Mr. Preston went into a depression that lasted for years, he said.

"I cannot begin to tell you how I felt," he said. "I've been through combat in Vietnam, and it was nothing like this -- the sheer terror of loss of control of your own body."

Mr. Preston first lost his speed, and then, over time, the full voluntary control of his muscles. He had trouble sleeping and had such fluctuations in his ability to move throughout the course of a day that he had to set up a computer at home to finish the work his job required.

He held on, tenuously at times, to hope. And that hope was what prompted him to travel to doctors trying new experimental treatments such as the controversial surgery he ultimately would undergo: an operation to place pinhead-sized pieces of fetal tissue in the deep recesses of his brain. It is estimated that fewer than 100 people worldwide have had the operation, and results of many of those cases are undocumented in scientific literature.

Yesterday, the New England Journal of Medicine published three studies of small, but fairly encouraging experimental trials at Yale University, the University of Colorado and University Hospital in Lund, Sweden.


An accompanying editorial in the journal noted "at least some benefit in humans given fetal ventral mesencephalic implants; in some patients there was substantial benefit."

Mr. Preston, whose surgery five months ago was part of a seven-patient trial being conducted at the Hospital of the Good Samaritan's Neurosciences Institute, still does not know the outcome of his surgery -- whether the millimeter-sized block of cells has taken hold and begun to grow within his brain, or not. He will go next month to Vancouver, Canada, for an electronic scan that will provide a chemical picture of his brain. Such images and many other tests will be repeated at six month intervals for many years.

In the meantime, Mr. Preston thinks he has noticed over the past few weeks a surge of muscle movement when he awakens that is present before he takes his medication.

He is reluctant to overstate the significance of the sign, protecting himself and other Parkinson's sufferers in his network from possible false hope.

"A lot of people who are hurting and very desperate are watching me closely," he said. "I'm cautious."

Mr. Preston was similarly circumspect before deciding to undergo the experimental surgery. Initially faring well on medication alone, he did not seek out programs offering the operation until he suffered weight loss, sleeplessness, and wildly fluctuating periods of involuntary movements and near paralysis.


"I was being ravaged more and more by the disease," he said, "and I was desperate. But I have strong religious convictions and I didn't want to get better at any cost."

He consulted clergy and did much soul-searching about the fact that aborted fetal tissue is used in the procedure, and finally came to the conclusion that the decision was a morally justified ++ one.

"I just do not see this as an abortion issue. Doctors are taking something that is going to be incinerated and using it to help people," Mr. Preston said.