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HI
Ray, David and list,

I saw you mention my name. And yes I was part of the second fetal
transplant double blind study . This is the Olanow,Freeman, Goetz group who
ran the experiment for 2 years and then the experiment did not finish on
time. I likely will officially know the outcome of that study next month
but I am relatively sure I got the cells. However in addition to some
improvements I developed, a runaway dyskinesia . This is what Fahn called
this movement which developed and This is dyskinesia which is not
controlled by reducing the l-dopa taken., I then followed up with STN -DBS
surgery which helped a great amount. The dyskinesia virtually vanished on
the Left, while on the right I do develop some dystonia even with my
stimulators off

I have mixed feelings about the continuation of this process. I am hoping
that the surgery winds up useful to somebody else. I think that placement
of the cells is an important issue. Also the differences in the patients is
likely important. I do feel the research should continue at a slow pace
since I am hoping that stem cells will be a cure(and the use of 8-12 week
embryos will be a relic of the past), It sounds as though Freed and
Fahn  had quite a disagreement .Fahn saying that the procedure should not
be done and  Freed giving a more positive read on it,  The design of the
Olanow/Freeman/Goetz  is for longer  (2 years) which has made waiting for
the blind to be broken excruciatingly long especially since I was subject
002 in 1995 or 96.  In spite or maybe because of  this study experience I
still  am a strong advocate of research
  and double blind studies  using patients.

Thanks for letting me let off a little steam here.

Charlie




01:18 PM 8/25/01 -0700, you wrote:
Ray,

Do you ever monitor the PD list (PIENO)? There were a few who had been a
part of the fetal implant studies. One that I remember for sure is Dr.
Charles Meyer (psychiatrist) Charlie had some bad dyskinesias because of it.
I remember another couple who had the "placebo" surgery


Charles T. Meyer, M.D.
Middleton, WIsconsin

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