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.


From: The Providence Sunday Journal

Date: May 2, 1999

Title: Parkinson's patient finds new hope with radical therapy

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

Author: Sam Nitze - Journal Staff Writer


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 charge 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