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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.
It was a few weeks before my wife
had noticed that I lost the Parkinson's "mask."
During the first few weeks, I felt a sort of
euphoria which the doctors said was normal after
brain surgery. I regained my strength gradually,
partially due to the surgery itself. I had twenty
staples on the top of my head which really didn't
give me too much trouble and surprisingly I did not
suffer from any headaches as I had expected to. Most
of the recovery was from the two rather large (5" or
so, each) incisions in the abdomen where the pumps
were inserted.
It wasn't long before I noticed
the pain and tremors going away although this did
not happen at the same time. My energy started to
soar and by March 2004 I was ready to start enjoying
life again. I installed kitchen cabinets in our
house and by July had started building a deck on the
back of our house. 1 week before GDNF was taken
away, my wife actually had forgotten that I am sick.
I was pain free and did not shake. She always had to
remind me to take my medication (the dosage by the
way was cut in half by that time) because I always
forgot. You see, I had no symptoms any longer
therefore my body didn't tell me it was time to take
my pills.
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 did not notice any physical
changes for quite some time. When we had the drug
taken away, it was very depressing for both my wife
and myself. Our future became uncertain once again.
My depression, as well as my wife's, turned to anger
at Amgen. Who are they to play GOD and give me my
life back only to take it away again? I am fortunate
that my regression has been very slow. I am still
not at the higher dosage of medication that I was
before the trial. For that I am thankful. I do now
have a mild tremor once again and some of the pain
has returned to my legs. I am no where near as bad
as I was prior to the trial. I can still enjoy the
activities I did while on GDNF. As a matter of fact,
I built a shed in my backyard last summer after
being off GDNF for 11 months. I am currently working
on building stairs. I have been off GDNF now for
almost 2 years! You can't tell me it is ineffective
or unsafe!
8. Are your pump and
catheter(s) still implanted?
yes
9. Have you had a DBS ?
no
How well do you think the
DBS worked?
10. Additional comments:
We will fight to get GDNF back as
long as it takes. This is a drug that works. I, as
well as others in the trial, are living proof of it.
Amgen knows it works and until they get what they
feel is a valid delivery system, they will not
release this drug. It's too bad that everything has
to be about money. They can discard human life so
effortlessly and allow people to continue suffering
until they or someone else comes up with an approach
so this drug will be more profitable. I challenge
Amgen to do the right thing. Stop treating humans as
lab rats. Amgen has lost two years of very valuable
data. This is time PD patients cannot afford to
lose.
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