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Friends-
The news media have once again misinterpreted scientific data,
sensationalizing the results of the fetal cell transplant study, with the
NYTimes calling it a "failure," and "disastrous" while Reuters hailed it as a
success. You should all try to read the full text of the study by Freed et
al. published in the New England Journal of Medicine to see what the results
really showed.  [It is too long to attach to this post. I tried and it was
rejected.]

I have been quiet about the fetal cell transplant study up to this time
because I am a subject in the study and I have been trying to be a fair and
objective subject. But I want you all to know that it was not a disaster and
a failure for me.  I am one of the under-60 group who received the fetal
tissue and showed significant improvement over 2-3 years.

The symptoms of PD are so dose-dependent and variable in any day that it is
hard to demonstrate improvement owing to a surgical procedure. This
controlled study showed patients under age 60 who received transplants
improved significantly more while off their medicines than did similar
patients who underwent sham surgery. When only the movement scores were
compared, both older and younger patients who had transplants performed
better than did patients who received no fetal cells. [That may not impress
Gina Kolata of the NYTimes, but I'll bet she never woke up "off" and couldn't
get out of bed and walk to the bathroom.]

In my case, I have shown improvement in my walking, balance and speech.  I
wake up in the morning "On," without dyskinesia, feeling like my normal self
for an hour or so.  When I go off, I feel stiff, but I still can talk and
walk and I neither shuffle nor freeze, as I did preop. I take about 1/3 the
daily dose of Sinemet that I needed pre-operatively so my dyskinesias are
less severe. I am working and being productive.  I am enjoying a full life.
I am not cured, but I have a new lease on life; the clock has been turned
back 7 or 8 years. I definitely would do it again.

More research is needed to find out why some few patients [up to 15% in this
small study] developed intractable dyskinesias, why the over-60 patients did
not show significant improvement, and how best to control the size and
location of transplants.  But don't let the media toss out the very positive
results of this study, which is still ongoing to determine long-term effects.

Jacqueline Winterkorn, PhD, MD
PD for 13 years
3 yrs s/p fetal cell surgery