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3. Did you receive a placebo
for the first 6 months? no
4. If so, did you
receive GDNF after the 6 month trial period ended?
NA
5. If first given the placebo,
how many GDNF treatments did you receive before the halt?
NA
6. Since starting the
GDNF trial:
Did you notice any
physical, cognitive or emotional changes in your
Parkinson's Disease?
Please describe the changes and when you first
noticed them.
My family noticed no difference
but after about 6 months I began to notice a slight
improvement. In particular I had several mornings
when I woke up feeling well, which had not been the
case for at least 5 years.
7. Since the trial halt in
September 2004:
Did you notice any
physical, cognitive or emotional changes in your
Parkinson's Disease?
Please describe the changes and when you first
noticed them.
I slowly lapsed back to the
condition which prevailed before the start of the
GDNF trial.
8. Are your pump and
catheter(s) still implanted?
no
9. Have you had a DBS ?
yes
How well do you think the
DBS worked?
It has been a great help in
dealing with freezing and dyskinesia but my sense of
balance and my lack of energy and strength are an
increasing problem.
10. Additional comments:
I was disappointed to learn, after
the trial, that we had been given a dose about one third
of that given to phase 1 patients. We should, as a
matter of ethics, have been told this and we should have
been allowed to continue the trial with an increased
dose.
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