Group -

Last month The Providence (RI) Journal interviewed me after I gave a speech to a nearby PD support group.

Here is the text of it.

A Newport man reports continued improvement 2.5 years after experimental surgery in which fetal pig brain cells were inserted into his brain.

May 2, 1999 - BARRINGTON - Three years ago, Jim Finn could hardly walk.

His limbs shook, and he had lost the use of his hands. His speech was strained and often unintelligible. He was overwhelmed by fatigue, sleeping nearly 18 hours each day.

After 15 years with Parkinson's disease, Finn was ready to take his own life.

"They had tried everything," Finn, 49, said Wednesday evening from his home in Newport. "Different medications, different doses, different hospitals - you name it, they tried it. I was at what they call the 'end stage' of Parkinson's, and there was nothing more anyone could do."

Or so he thought.

During summer 1996, just when he was running out of hope and will, Finn was selected as 1 of 12 Parkinson's patients from New England to undergo an experimental procedure for the implant of fetal pig brain cells. He was warned that there were risks, including a roughly 2-percent chance of a brain hemorrhage, but Finn said he didn't think twice.

"Those sounded like great odds to me," he said. "I jumped at the chance because I really didn't think I had anything to lose."

After months of grueling tests, Finn traveled to the Lahey Hitchcock Clinic, in Burlington, Mass., where Dr. James Schumacher performed the surgery. A steel frame was bolted to Finn's head, a hole was opened in his skull and 12 million pig cells were injected into the right side of his brain. He was conscious throughout the procedure, and, to his surprise, he was discharged the next day.

"Brain surgeons and McDonald's should get together and make a new drive- through," he would joke later.

After a week of intense headaches and nausea and several weeks of exhaustion, Finn began to show signs of improvement. He had more energy. The tremors settled.

Three months after the surgery, the pace of his recovery quickened.

"I have seen some very significant improvements," he wrote in a diary posted on the Internet. "Some examples include better walking, less fatigue, better coordination, more energy, better sleeping, elimination of nighttime drooling, less freezing, fewer 'on/off problems', and the like. Friends and family said they thought I looked better. I noticed, in particular, that I could cut things better on my dinner plate, that my handwriting was a bit more legible and that I was more proficient at dressing myself."

He went to the Neurological Referral Center at the Boston Medical Center for extensive tests, as he would every three months in the years to come. The results confirmed his sense of progress. On some of the motor-skills tests, Finn demonstrated a 50-percent improvement over the tests taken before the operation.

Before the second day of testing, Finn had to go 12 hours without any medication. It was the first time Finn had been deprived of medication since the surgery, and he worried that the effects would be devastating.

"[But] my fears were groundless!" he wrote. "Not only could I move rather well, I walked from the parking lot to the office - the equivalent of a couple of blocks - with complete independence! It was an eye-opener. The staff seemed amazed, but no more than I was."

Before six months had passed, Finn had stopped using his cane. He had gone on a three-week vacation to Florida and spent hours walking around the Disney parks.

Today, 2.5 years after the implant, Finn is doing better than ever. His mobility continues to improve and he has reclaimed areas of his life that he once thought he had lost forever. He shops for himself, he butters his own bread, he fiddles with his collection of antique radios.

THE FETAL PIG CELL implantation procedure was pioneered by Diacrin Inc., a biotechnology company based in Charlestown, Mass. In 1996, Diacrin joined forces with another biotech company, Genzyme Tissue Repair, to speed the development and commercialization of the treatment.

For years, surgeons have been transplanting cells from the brains of aborted human fetuses directly into the brains of Parkinson's patients, with promising results, Diacrin president Thomas H. Fraser said. But the use of human cells is fraught with problems, including a limited supply of cells, generally inconsistent cell quality, and opposition to the procedure on ethical grounds.

Diacrin intends to offer its pig cell treatment, NeuroCell-PD for Parkinson's patients and NeuroCell-HD for Huntington's patients, as a safer, more effective, less politically charged alternative, Fraser said.

Parkinson's is a degenerative disease that kills brain cells that produce dopamine, a chemical messenger that enables voluntary motion. The implanted pig cells are meant to replace the dead cells. In theory, the new cells will be accepted by the brain and will be assigned a dopamine-producing role.

The treatments administered to Finn and 11 others in 1995 and 1996 were part of the first of three phases of clinical trials cleared by the U.S. Food and Drug Administration, Fraser said.

"We are very encouraged by the results," he said. "Not everyone did as well as Jim, but on average, the group improved about 20 percent."

Fraser said he was particularly impressed because the phase-one trials were aimed more at evaluating safety than on pushing for dramatic results. The 12 patients only received a small number of cells and in just one side of the brain. Fraser said patients selected for the phase-two trials will be implanted with four times as many cells and in both sides of the brain.

The phase-two trials are underway, and Fraser said he hopes to begin the third and final round of studies by the middle of next year. If all goes smoothly, Fraser said, the trials will be completed by 2002 and the treatment could be approved by the FDA in 2003.

WHEN FINN came to the Barrington Senior Center on Wednesday to tell the story of his operation, he opened by introducing a pink stuffed animal.

"Say hello to Priscilla," he said. "She's my favorite pig."

Then he played a video that left the room stunned.

The first scene showed Finn in a wheelchair one month before his surgery. He was in a hospital undergoing "baseline" tests to document his condition.

As the film progressed, seemingly in slow motion, Finn struggled to stand up from his wheelchair. Once he was upright, a nurse tried to lead him forward. He labored to shuffle one foot in front of the other, and after a time, he stopped and nearly fell backward. He stood frozen in place and tried in vain to speak. This was Finn a few weeks after he told his physician, Dr. Robert G. Feldman, that he was going to kill himself.

The second portion of the video showed Finn striding up and down a corridor, sitting down and springing up from a chair, counting to 10 in a clear, confident voice. Six months after his operation, Finn was virtually unrecognizable as the waxen figure seen moments before.

During the presentation that followed the video clip, Finn told the audience that he hadn't had any medication since 5 p.m. the day before, about 17 hours earlier. He said he now takes only five pills a day, instead of eight, adding that while the improvements in his condition have slowed, he still feels better on a weekly basis.

"And there have been no side effects," Finn said. "Though I do have a tendency to wallow around in the mud in the back yard when it rains."

Corinna McKenney, 72, met Finn about four years ago at a Newport Parkinson's support group. McKenney had been a competition ballroom dancer when she found out she had the disease. She said that while she has responded well to medication and is not a likely candidate for an operation like Finn's, she is moved by his tale.

"It's inspiring," she said. "It's wonderful to hear a story like this, to know that somebody went from such utter misery to having a full life again."

The American Parkinson Disease Association Rhode Island Chapter, co-sponsor of Finn's talk along with the senior center, will sponsor a Walk-A-Thon fundraiser at Roger Williams Park at noon on Saturday, May 22. Money will be raised through pledge donations and will go toward Parkinson's research, said APDA R.I. Chapter president Frances S. Andersen.

For more information or to register for the event, contact the APDA at 823-5700.

Side bar: "We are very encouraged by the results. Not everyone did as well as Jim, but on average, the group improved about 20 percent." Thomas Fraser, drug company president.

Photo caption: BEFORE AND AFTER: Jim Finn spoke at the Barrington Senior Center recently and showed a video of himself nearly three years ago, when he could barely walk because of Parkinson's disease. Now, after surgery in which pig cells were inserted into his brain, Finn's symptoms have diminished and he can walk.

Journal photo: Frieda Squires
Journal Staff Writer: Sam Nitze
The Providence Sunday Journal