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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.
I had a violent experience right
after surgery with extreme dyskinesia from too much
Sinemet given too soon after surgery. Staff doctors
prescribed antihistamines. Later, my surgeon visited
my bedside, recognized the problem, reduced the
Sinemet and my flaying body was able to rest as the
Sinemet left my system. My 6 month cognitive test
involving oral addition of random numbers was a big
surprise to me in that I was easily able to surpass
my previous score by triple in an area that is
normally very difficult for me. There is no possible
way I could fake, learn, or duplicate that
improvement. Adding numbers is for me, very very
unpleasantly, humiliatingly hard. My children and
hesitantly I, too, noticed an exponentially
increasing participation in social interaction,
daily increased activity, future plan- making,
interest in living, artistic expansion such as
writing songs, poetry, and tackling things such as
projects that are hard for me.
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 seemed to retain its benefits
for about 6 - 10 months after the drug was withheld.
I did not notice a dramatic decrease of symptoms
from the drug and in like manner didn't experience a
dramatic increase of symptoms after the drug. But
there was a difference. The fact that the difference
was not shown in my doctor's recorded tests is not
surprising, but very disappointing and emotionally
had a negative impact on me which in itself could
have caused damage effecting my symptoms. I get
worse when bad things happen. My stubborn
presonality and refusal to succumb to this dastardly
disease is testimony that tenacity and attitude make
a significant difference and I believe my faith in
God also sustains me. I am now regressing back to
the level of disability that I was before GDNF, but
I don't feel I have quite reached it yet. So this
time -between 11/05/03, the date of my original GDNF
surgery, and some future date when I will regress
back to the way I was in 2003 - is like a reprieve.
And I appreciate it. And I feel anger and
powerlessness to prove or point out to those who say
this treatment didn't work that GDNF made a
difference in me that was significant. I can't prove
it. So either they believe me or they don't.
8. Are your pump and
catheter(s) still implanted?
no
9. Have you had a DBS ?
no
How well do you think the
DBS worked?
10. Additional comments:
I don't know of a way to be precise
about the testing because the symptoms of Parkinson's
are so many - the fluctuation of them is so
unpredictable, the factors that effect each individual
are so numerous and each day, each span between
medication taken, each amount of medication, each diet,
exercise, outside stress, inner turmoil, other health
issues, support system or lack of, attitude, personal
discipline, and the timing of the testing, the choices
of the doctors who do the testing - all effect the
outcome and end result.
Just one example is the tests done
when I came into the doctor "off". I took tests, took
Sinemet, waited, and was tested "on". One of those
times, I had taken a sleeping pill to get some rest the
night before and it was still effecting me so my "off "
was not very off and more than once, I was the last
person before the lunch hour to be tested. I then
didn't come "on" after taking the Sinemet very fast and
there was impatience to get me out the door. I sensed
it and my body reacted to the stress. That made it
worse; they wanted to go to lunch; I was "on" but not
like I should have been. The tests were taken anyway.
Which is to say - there were not
enough tests, not enough people, not enough
restrictions, not enough averaging, and I don't know
that it is even possible to get enough similarities in
people to compare them in a "scientific" way. How could
one find enough people that took the same medication,
had the disease the same amount of time ate the same
foods, lived under the same amount of stress, went to
the same doctor, were the same age, gender, weight,
progression rate, attitude, and were willing to undergo
constant testing? An impossible scenario, physically as
well as financially.
So where does that put the results?
My personal statement is, I am grateful I was given the
opportunity to receive GDNF. I have great admiration for
the doctors involved. I have disillusionment in regards
to how things were handled by the primary decision
makers of this GDNF method of distribution and
subsequent analysis of its effectiveness, and
experienced deep emotional disappointment personally.
Despite all of that, I remain confident, determined,
and hopeful that a cure will be found and irregardless,
my life is what I make of it and I work on making it a
good one daily.
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