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3. Did you receive a placebo
for the first 6 months? yes
4. If so, did you receive GDNF after the 6 month trial
period ended? yes
5. If first given the
placebo, how many GDNF treatments
did you receive before the halt?
one, maybe two
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.
I am writing this for my husband,
who died on May 17, 2006. Bob died from Parkinson's
(aspiration pneumonia).
Bob was like each of the other
gentlemen in this "shelved" Phase II study,
responding to this questionnaire. He was absolutely
heroic and utterly strong. He was braver and more
optimistic than I can imagine in the face of such
grave personal loss. His positive and giving nature
made me (and everyone who knew him) remember him as
a great man, a hero. He, never said, "why me?". He
saw himself as a "lucky man" and his cup “half
full”. He loved his doctors and the world. Even
though he had been on the placebo, he had hopes for
the drug. When he finally did get the drug (one or
maybe two times), he was suddenly able to smile
again. The muscles in his face actually smiled and
his face wasn’t frozen. He was much more animated.
His handwriting improved, too. We were very happy.
This was what we had sacrificed for all these many
months. This was going to make it all worth while,
giving up DBS, for the possibility of playing golf
again and doing things with his friends. All of the
long, long months he had quietly, patiently waited
for the GDNF were finally over. . . or so we
thought.
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.
Bob stayed strong mentally until
near the end. He was, after a couple of months,
quite a bit worse off. The DBS surgery had failed to
provide any benefit. Although he had it within two
weeks of getting the catheter and pumps out, he
could not recover his former strength.
8. Are your pump and
catheter(s) still implanted?
NA
9. Have you had a DBS ?
yes
How well do you think the
DBS worked?
Bob remained hopeful, of course,
that the DBS would help him. Had we chosen the DBS,
instead of the Amgen Trial, Bob's last two years
might not have been spent just waiting in vain. As
it was, the DBS was a total failure. In my opinion,
Bob had simply been cut on and drilled into, stapled
and medicated way too much. By now, for Bob, DBS was
done too late to revive him even temporarily.
10. Additional comments:
Bob would have told you, he felt
great happiness when he learned he would finally
receive the GDNF on the next visit. We still didn't
know that this trial was just dosing 1/3 of the
level given to the study patients in Phase 1. That
information would more than likely have made us look
a lot longer at the study, before agreeing. I can't
say we would have gone that route, had we known. For
me, the whole thing had become a bit of a sham. I
think in retrospect, Amgen was not forthright with
us. Bob never blamed anyone, though. He only looked
ahead to the future. He died with his family close,
holding my hand. He trusted the GDNF study to give
him some extra time; instead it took some of that
precious time away. Although he would rather have
played golf or even just walked the course that last
Spring with his grandsons, Bob held off on the DBS,
until it was just too late.
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