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The Operation and First Month Review
[posted to the Parkinsn Information Exchange Network
on 03 November 1996]

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, etc). 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.


The Twelve Week Review
[posted to the Parkinsn Information Exchange Network
on 19 December 1996]

This is my first update to the posting I made eight weeks ago regarding my
pig-cell implant surgery. It has now been twelve weeks since the operation.

In the original article, written one month after the procedure, I said that I
seemed to be doing a bit better. Although there was nothing specific, I
thought that I was just feeling a bit better, overall. It was encouraging. But
I was not running around like an eighteen year old. Far from it!

In the past two months, though, I have seen some very significant
improvements. Some examples include better walking, less fatigue, better
coordination, more energy, better sleeping, elimination of night-time
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.

While all of these things are great, they are virtually meaningless unless
they can be demonstrated in a clinical manner. It's possible that I was doing
better because I felt that I should be doing better. The old "placebo-effect"
we've all heard about.

So on Tuesday and Wednesday of this week I underwent extensive re-testing at
the Neurological Referral Center at the Boston Medical Center. The tests were
the same ones I had just prior to the surgery. They checked for balance,
walking, and all the other motor skills. Yes, they were two very tiring days.

At the end of the first one, however, I was able to do some shopping in
downtown Boston. Sure, I was tired, but at least I was mobile and I didn't
need my cane very much. Day Two promised to be quite difficult as I had to be
off all medications for at least twelve hours before the tests. They needed
for me to be in the "off" state to take the measurements. And then, after the
first battery was completed, I was to be given the dose of Sinemet so they
could test me in the "on" condition.

Being deprived of medication for the first time since the surgery I had
visions of being unable to move at all. It was a little disconcerting, as you
might imagine. My fears were groundless!

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.

I performed all of the tasks fairly well; especially when you consider that I
was "off." Now, here's the strange part. I was given my first dose of Sinemet.
And nothing happened. Same thing when I took another pill. After the third, I
eventually switched "on" and became quite dyskinetic. These were not the
responses that they were expecting and I think that they're still trying to
figure out what went on.

So am I. To my way of thinking, the "off" was just not that much "off."

Now, to the important news. Were the medical professionals able to find and
scientifically prove any areas of improvement? Yes, they were. Although the
raw data would mean nothing to us, some of the motor-skill tests indicated a
fifty-percent improvement over the same tests that were done prior to the
operation. Obviously, this is good (and exciting) news. Especially considering
the fact that in theory no results were predicted to occur before six months
after the operation.

This is largely unchartered territory, however, and we must keep ourselves
aware of any unknown possibilities. Will the effect be permanent? Will it be
too good? Are there any unknown side-effects. This is what research is all
about. I will continue to keep you informed.


The Six Month Review
[posted to the Parkinsn Information Exchange Network
on 27 March 1997

It has been 6 months since I underwent the controversial "pig-cell" implant
surgery for Parkinson's Disease. This anniversary was spent in Boston with the
medical personnel involved in this research program.

Essentially, the day was used to repeat all of the previous tests for motor
skills, balance, walking, etc. All of the testing was done twice. The first
battery was performed after I had been off my medications for over 12 hours.
Then, they were all repeated after I had been given my medications and was
supossedly in the "on" state.

And here is some truly amazing news. Even WITHOUT medication for 15 hours, I
was quite mobile and able to walk (rather well) from the parking lot to the
doctor's offices; over 2 blocks away. I didn't even take my cane! Also, the
staff was very pleased with the results of their examinations. Again, the word
"amazed" must be used. They made note of such things as better walking, facial
expression, voice, and the like.

After completing their work, I was given my first dose of Sinemet. (That's the
only drug I take, the others either not working and/or producing intolerable
side- effects.) It took another pill before I switched "on." Even then, it was
not a complete "on." But the tests were repeated anyway. In most of them there
was additional improvement. However, by now fatique had set in. (As you know,
a day of these rigorous tests is very tiring.)

My own conclusion is that even when I'm "off" it is a much better "off" then
before the operation. For example, I have been walking without my cane for
more than 6 weeks. Included in that period was a 3 week vacation in Florida
which involved a LOT of walking in the Disney parks. So, the medical people
are all happy with my status at this point. The numbers "work."

Now, here are some thoughts based on my self-evaluation. You'll pardon the
fact that this is terribly unscientific.

1) Areas of improvement: Walking, dressing, driving, cutting food, facial
expression, sleeping, response to medication, dyskinesia

2) Areas of little or no improvement: Handwriting (But it was poor even before
PD)

3) Side-effects: Virtually NONE

4) Outlook: Those of you who have been following my reports on this operation
have no doubt noticed my conservatism. I felt it inappropriate to give false
hope to our fellow sufferers. Now, 6 months after the surgery, I feel there is
some cause for quiet celebration. I am certainly in better condition since the
operation; that's been properly documented. Just as important; I FEEL better,
too. However, I do NOT feel as though I've been cured. There are still
problems to deal with. In my case, fatique is at the top of the list. But, I
see a glimmer of hope for the first time in the 17 years of dealing with
Parkinson's.

A final note. To those of you who missed my 2 previous reports on this
procedure, feel free to  directly E-Mail me for a copy. Do NOT post a request
to the general list as there is a strong chance that I won't see it. Any
comments, however, should be shared with all of us. If I can answer any
questions, please write. As 1 of only 12 patients who are involved with this
particular study, I consider it to be my duty to share my experiences with
anyone with an interest in this horrible disease.


The Nine Month Review
[posted to the Parkinsn Information Exchange Network
on 20 June 1997]

For those of you who have been following my reports on the "pig-cell" implant
surgery, this is the third update. It has been nine months since the operation
and yesterday, June 18, 1997, I was in Boston for a medical evaluation.

As usual, the battery of tests was performed after I had been without
medication for sixteen hours. In other words, in the "off" state. These are
the same tests that are always performed by the staff at the Neurological
Referral Center. We're all familiar with them; foot-tapping, balance, motor
skills, etc. These tests generally take about two hours to complete. After
that, I am given my normal dosage of Sinemet (the only drug I take) and, when
I turn "on," the very same tests are repeated. You can guess what a tiring day
this is.

The news, however, is mostly good. I continue to show improvement in nearly
all of the tested areas. The "on - off" transition is smoother and more
predictable. Walking is better. Dyskinesia is less of a problem. On the
negative side, fine-motor skills are not keeping pace with rest of the
progress. My handwriting is just awful. I hope, and expect, for that to
improve. Overall, the doctors seemed quite impressed.

You cannot, though, measure everything in strict scientific terms. So, a few
personal words are in order. I just seem to be feeling a little better, but
not in any specific ways that could be represented by a chart or a graph.
These positive feelings include improvements in energy level, sleeping, and
overall well-being.

The second dreaded PET-scan (see previous reports) has not been performed.
They are having serious problems with the machine. And that's fine with me! It
has been re-scheduled (again) for the middle of August. Although I have agreed
to having it (and I will), that doesn't make it pleasant.

So that's the latest. For any ListMembers who missed the previous reports,
feel free to request them directly from me via E-Mail.


The One Year Review
[posted to the Parkinsn Information Exchange Network
on 20 September 1997]

If you've been reading my reports on the so-called "pig-cell" implant surgery,
you probably know that it has been a year since the operation. Indeed, this
week marks the first anniversary of the procedure.

Yesterday I was in Boston with the medical team that's monitoring my progress.
As usual, I was tested twice. Once, after not having any medication for
fifteen hours, and again, after taking a normal dose.

The results of the examinations continue to indicate improvement in both the
"off" and the "on" states. I was able to complete most of the tasks fairly
well even without the medication. And, after taking the Sinemet, the repeated
tests showed further enhancement.

My conclusion is that the implanted cells are starting to work on their own.
PLEASE note, however, that this is ONLY my opinion. The medical professionals
cannot confirm or deny this.

However, some very interesting news was revealed to me this week. Before I
share that with you, though, a few words about the operation are in order. The
implantation was a uni-lateral (one-sided) procedure. It was performed on the
Right side of the brain in an attempt to improve the Left (weaker) side of my
body. Had the situation been reversed, a uni- lateral (one-sided) operation
would have been done on the Left side of my brain to help the Right side of
the body.

Here is what apparently has happened. Although I received a uni-lateral (one-
sided) implant, I am seeing BI-LATERAL (both-sided) results! Yes, I am amazed.

At this point I have little further information. Is it an anomaly? Will it
continue? We just don't know. I continue to "feel better." I know, that's not
a very scientific term. But it's pretty important. The "offs" are not as deep
as they once were and the dyskinesia, while very annoying, is not as disabling
as before.

As always, I will continue to let you know what's going on.

For any of you who have not seen my previous reports, I can E-Mail a copy to
you. Drop me a note at Jim Finn - [log in to unmask]


Press Release
[posted to the Parkinsn Information Exchange Network
on 29 September 1997]

Genzyme Corporation - Investor Information - Press Releases - Tissue Repair
Division Genzyme Tissue Repair, Diacrin Announce NeuroCell-PD Phase I Results

Genzyme Tissue Repair (Nasdaq:GENZL) and Diacrin Inc. (Nasdaq:DCRN) announced
today that their NeuroCell-PD porcine neural cell product for transplantation
into people with advanced Parkinson's disease was well tolerated in patients
treated with the therapy in a phase I study.

The study results, presented Sunday at a medical symposium in San Diego, also
showed evidence of clinical improvement in patients who were treated with
NeuroCell-PD.

In the study's 10 evaluable patients who were measured at a time when their L-
dopa medication was wearing off, preliminary data indicated an average
improvement of 13.2 points at six months after surgery on a standardized scale
that measures a patient's ability to perform a variety of movements.

This result was statistically significant, compared to an evaluation that was
taken prior to surgery.

"It's a good start for us," said study presenter Samuel Ellias, M.D, Ph.D.,
assistant professor of neurology at Boston University Medical Center.

"One patient has been followed for more than two years now, and has not had
any significant adverse effects from the surgery. We're looking forward to
finding out how much potential this promising treatment holds for Parkinson's
disease patients."

Based on these results, the companies plan to start a pivotal phase II trial
later this year.

Although there have not been any absolute epidemiologic studies on Parkinson's
disease, medical experts believe that approximately 500,000 Americans have
Parkinson's disease, and another 50,000 cases are diagnosed each year.
Patients experience a variety of motor symptoms, including tremors, falls,
rigidity, slowed movements, and difficulties with speech and swallowing.

Therapy with the drug L-dopa is initially effective but begins to lose its
efficacy in 6 to 12 years.

Medical experts believe that approximately 150,000 people in the United States
are in the late stages of the disease, during which L-dopa provides a
diminishing benefit. The resulting medical expenses, early retirement, and
nursing home care cost $5.6 billion a year.

In the phase I study, 12 patients with moderate to severe Parkinson's disease
received a transplant of porcine cells into three sites in the brain located
just below the cortex, which is involved with smoothing and coordinating
movement.

Half of the patients received the drug cyclosporine to suppress the immune
system to avoid rejection of the transplant. The other 6 patients received a
new technology in which the donor cells are treated prior to transplantation
so that the patient's immune system does not recognize them as foreign and
thus, does not attack them.

The patients were evaluated both before and after surgery using a standardized
scale for measuring a patient's ability to perform several different types of
movement, timed movement tests, and neuropsychological tests. Patients were
measured when their L-dopa medication was working and when its therapeutic
effects had worn off. Two of the patients were too sick to be evaluated
properly before surgery and therefore were not included in the group data.

There were no serious adverse events or decrements in neuropsychological tests
attributable to the porcine cells. In addition to the preliminary efficacy
shown at 6 months, the two evaluable patients at 15 months after surgery
showed an average improvement of 29 points when their L-dopa medication was
wearing off. The first patient to be treated was followed for 24 months and
showed improvement of greater than 45 points, both when the L-dopa medication
was working as well as when it was wearing off. One of the patients died
suddenly of a pulmonary embolism (which was not related to the  transplant) 7
months after surgery. Histological studies of the patient showed that the
porcine cells survived and showed signs of reconnecting nerve tissue damaged
by the disease. The histological results were published in the March 1997
issue of Nature Medicine.

The study sites for the trial were Boston University Medical Center and the
Lahey-Hitchcock Clinic, both located in the Boston area.

Diacrin develops and produces transplantable porcine cells for the treatment
of intractable human diseases characterized by cell dysfunction or cell death.
Product candidates in preclinical development include NeuroCell-FE for focal
epilepsy, NeuroCell-CD for cognitive disorders, HepatoCell for liver failure
and hypercholesterolemia, and CardioCell for repair of damaged heart muscle.

Genzyme Tissue Repair is a leading developer of biological products for the
treatment of cartilage damage, severe burns, chronic skin ulcers, and
neurodegenerative diseases. It is a division of Genzyme Corp. and has its own
common stock intended to reflect its value and track its performance.

Last year, Genzyme Tissue Repair and Diacrin formed a 50-50 joint venture,
Diacrin/Genzyme LLC, to speed the development and commercialization of
NeuroCell-PD and NeuroCell-HD for the treatment of Huntington's disease, which
is currently in a phase I clinical trial.

This news release contains a forward-looking statements about the potential
market size for NeuroCell-PD and the planned start of a pivotal trial of
NeuroCell-PD. The actual market size may differ, depending on the accuracy of
the company's information about the prevalence of advanced Parkinson's
disease. The planned timing of the pivotal trial may vary, depending on the
schedule of implementation at the various clinical trial sites.


The Fifteen Month Review
[posted to the Parkinsn Information Exchange Network
on 13 December 1997]

As most of you know, I underwent the so-called "pig-cell" implant procedure in
September of 1996. Earlier this week I was in Boston for the 15th-month post-
op evaluation. And I am very happy to report that there is continued
improvement. This is very good news.

But wait, there's more! I was contacted by Maryland Public Television
(affiliated with PBS) regarding the operation. They wanted to include me in a
production they're filming about new Parkinson's Disease therapies. The plan
was to tape the testing that is performed every 3 months (in both the "on" and
"off" states) and then interview me to get some personal insight as to how PD
changed my life before, during, and after the surgery.

The film crew was waiting for me when I arrived in Boston on Thursday. Being a
bit of a "ham" (especially now, since the operation - heh, heh) I was not in
the least bit nervous. Anyway, although it was a very tiring day, it was also
a lot of fun. The production people were wonderful to work with. I have no
idea when it will be televised.

As I understand it this will be a segment of MPTV's "HealthWeek" program.
You'll have to check your PBS station's listing for the date and time if
you're interested in seeing it. Of course, I'll keep you informed.


Update
[posted to the Parkinsn Information Exchange Network
on 30 May 1998]

Several of you have written to request an update on how I am feeling. As most
of you know, I had the "pig-cell" implant surgery in September of '96. (For
new group members who are not familiar with it, please see the note at the end
of this posting.)

And, as you know, I have maintained an account of my experiences with this
highly-experimental xenotransplantation. The results have been posted to this
ListServe every 90 days, immediately following the quarterly evaluations in
Boston.

Each exam has shown improvement over the 1 before it. All of the motor-skill
testing (those timed checks on walking, finger-tapping, hand up/palm up, etc.)
indicate on-going enhancement. The same is true for the ones that are not
timed, such as balance, rising from a chair, handwriting, and the like.

In spite of such obviously good news, however, I continued to have some pretty
rough days. There were some good days, too. But about 1 in every 3 or 4 would
take "the wind out of my sails," as they say. This is not surprising; I've
never lost sight of the fact that after 16 years of PD I was considered an
"end-case." To have arrived at this point was rather remarkable.

Over the last 3 weeks, however, there have been what I consider to be rather
significant changes. I have NOT had a single bad day! It's as if the whole
curve has shifted upwards. Now I'm having pretty good (no, not perfect) days
and better (again, not perfect) days. The dynamics are changing. I do not know
if this will be reflected in the next battery of testing. That will take place
in 2 weeks.

Additionally, there is the possibility that this whole thing could be an
anomaly; with a big "crash" just over the horizon. The thought of it is very
frightening. Finally, we must remember that "feeling better" is a highly
subjective term. It is a concept that is difficult, at best, to measure
scientifically.

So that's the latest. I'll post another report after the next round of
examinations.

copyright 1998 James C. Finn All Rights Reserved