On Tuesday, September 24, 1996, I underwent the new, highly experimental, and
much talked
about procedure for the implant of pig fetus brain cells.  As you probably
know, this is the latest
attempt at finding some relief for the symptoms of Parkinson's Disease.  Even
the word "cure"
has been used; but only in the most hushed of whispers.  The following is an
account of what
happened before, during, and after this surgery.  I hope that my experiences
will be of some
benefit to you.  If you have any questions after reading this article, I will
be more than happy to
respond to them.  However, please be patient as it may take me a couple of
days to get back to
you.

Some background information on me.  I am a white male, age 48, and have had
PD for 16 or 17
years.  The symptoms include poor walking, poor speech, poor handwriting,
extreme fatigue, and
mild tremor.  I've tried all the current medications (Sinemet, Sinemet CR,
Amantadine, Eldepryl,
ect).  The only one that is of any use (and that has become very limited) is
Sinemet.  And even
that is highly unpredictable with severe "on/off" performance.  Eldepryl,
while it did provide some
relief, had to be stopped because of horrible side-effects (sudden projectile
vomiting).

For the past 10 or 11 years I have been under the care of Robert G. Feldman,
MD.  He is the
Chief of Neurology at the Boston University Medical Center Hospital (now
known as the Boston
Medical Center).  His private offices are at The Neurological Referral
Center, in the Doctor's
Office Building at the hospital.   I believe that Dr. Feldman and his superb
staff provided me with
the best possible care.  However, after 15 years of dealing with Parkinson's,
it was obvious that I
was entering the "end stage" of this hideous disease.  It was at this point
(June 1996) that Dr.
Feldman introduced me to an associate of his, Dr. Samuel Ellias, also of The
Neurological
Referral Center.  Dr. Ellias is the chief contact-person between Boston
Medical Center and
Diacrin Corp., the developers of this new approach to PD.

After several interviews with Dr. Ellias, including a talk about pallidotomy,
he asked if I would be
interested in looking into Diacrin's program.  I was more than willing; I was
desperate.  I had
rejected the idea of a pallidotomy; it didn't (and still doesn't) make any
sense to me to "burn-out"
a part of my brain.  It just wasn't logical to me.  What if I needed it in
the future?  What did appeal
to my sense of logic was the "addition" of something.  And that, essentially,
was what was being
proposed.  Due to my age, length of time with Parkinson's, and my motivation,
Dr. Ellias found
me to be an ideal candidate for the program.

Several very long weeks passed while everything was put into place.  Strict
protocol had to be
achieved and maintained for the results, either good OR bad, to have any
meaning to the
medical community.  Literally mountains of paperwork were generated between
the Federal Drug
Administration, Massachusetts General Hospital, Boston Medical Center,
Neurological Referral
Center, Diacrin Corp., and the Lahey-Hitchcock Clinic, to name a few.  After
all of this was taken
care of, they were ready to begin pre-operation testing.

So, in August, the real work started.  As they explained, it was essential
that a "base-line" of my
performance was fully documented.  This included all of those tests we're so
familiar with:
Walking, balance, foot tapping, handwriting, ect.  In addition there was a
VERY tiring battery of
neurological/psychological tests.  Of course, there were unending visits to
the labs for blood
work.  You must be willing to go through all of these tests; but be prepared
to be exhausted by
them.

As the date for the operation neared, the examinations became more intense.
 There were CAT
scans.  There were MRI scans.  Don't be nervous about them.  The idea of
being placed inside
of a machine really bothers some people.  Luckily, I am not one of them.  But
be prepared for a
scan that I found to be pretty rough.  It's called a PET scan.  It is similar
to an MRI but you will
have your head tied down while you're in the machine for two and a half
HOURS.  To make
matters worse, they will inject a substance into a vein in one arm while they
draw blood out of an
artery on the other.  This will take place after you've been without
medication for eight to twelve
hours and without food for at least that long.  I had a bad reaction to some
pre-scan pills; severe
diarrhea and blacking-out.  At the end of that day I was a complete wreck.

After going through all of the testing, and apparently "passing," I finally
met with Dr. James
Schumacher of the Lahey-Hitchcock Clinic.  He is the surgeon who actually
performs the
operation.  And it is he who has the final say as to whether or not the
procedure is done.  And
here I hit a roadblock.  I was informed by him that I must have an HIV test
and it must come back
"negative."  For two days my entire life was on "hold" while waiting for the
results.  Fortunately,
all was well.  But it seems to me this test should have been performed MUCH
earlier, rather than
waiting until just before the operation.

The operation was scheduled for Tuesday afternoon, September 3rd.  After the
long ride from
southern Rhode Island to Burlington, Massachusetts I was informed that there
had been a
technical problem with the harvested pig cells.  And that the surgery could
not take place for
another three weeks.  You cannot imagine what a let-down this was.


Finally, The Big Day arrives.  I had to be at Lahey at 6:30 AM for some
last-minute lab work and
for the mounting of a special frame to my skull.  This will be rather
graphic, but it is the best way
to inform you as to what to expect.  In order for the doctors to be able to
guide the needle into
the brain, a special frame must be, literally, bolted to the head.  It is
attached at four points with
aluminum screws.  Yes, they use a lot of local anesthetic; but I was aware of
some pain anyway.
It's really not as bad as it sounds, but it wasn't a picnic, either.

After the mounting, I was rolled around the hospital for yet another MRI scan
and one last CAT
scan.  Then, after waiting in a holding area, it was up to the operating
room.  Here I was given a
sedative to help me relax and a shot of local anesthetic to the skull.  Yes,
you are AWAKE during
the operation!  And you are fully aware of what's going on.  Every now and
then I was asked to
move my toes or hands.  Anyway, they opened up my skull and went in with the
needle.  No, you
don't feel anything at all!  It's just amazing.

About two hours later they were finished and sewed me up.  Naturally, I was a
bit groggy when I
was returned to the post-operative holding area.  But I felt fine and HUNGRY.
 Eventually I was
sent up to my room.  The floor staff couldn't believe that the doctor ordered
my supper.  I ate
every scrap of it and slept well that night.  They gave me a couple of shots
of codeine for my
headache.

The next morning (are you ready for this?) I was discharged!  It sounds
impossible, doesn't it?
And I did well on the trip home.  But it was short-lived.  I developed a
headache unlike any
before it.  I very rarely get them; this one was agony and lasted for nearly
a week.  Also, for
several days I couldn't keep food down.  I was really very ill.  Dr.
Schumacher called and said it
would all pass.  And it did.  But for a couple of weeks after the operation I
was even more tired
and weak than usual.

I was told that there were no guarantees whatsoever that this procedure would
yield any
beneficial results.  I was invited to participate, as a volunteer, in the
study to see if this operation
posed any threats to one's health.  In other words, it was a medical safety
test.  I can certainly
understand the reasons for this.  For example, if it cured Parkinson's
Disease but I dropped dead
of an unknown virus, the researchers would have to know this.  I was the
eleventh person in the
world to have this particular implant procedure.  I consider myself to be
very fortunate.

Now, as to what you're waiting for: The Results.  I cannot honestly say that
there have been any
remarkable changes.  One week after the operation, an MRI scan showed that
the new cells had
survived.  That's a fairly major hurdle.  There will be some rather extensive
testing, starting in
December, to see what, if any, improvements I've had over the initial
"base-line" we established
at the outset of the program.  In fact, all of the tests will be repeated;
including the dreaded PET
scan.

However, I can say that I am feeling somewhat better.  Sleeping has improved,
I have a bit more
energy, and I am a little less dyskinetic.  I still take Sinemet, and it
seems to be working a little
better. These changes, while noticeable, are slight.  And they may be caused
by a "placebo"
effect.  Bear in mind that it's only been a month since the implant was
performed.  In theory, no
positive results are to be expected for the first six months.  And, at that,
no one has any idea how
long they will last.  This is truly leading-edge technology, with great
promise and possibly
unknown pitfalls.

I will endeavor to keep you posted as to my progress, or lack thereof.

Jim Finn

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