Hi,
Let me offer some thoughts along side yours, if you will.
I have no wish to start an argument but I would love to
start an exploration
of these statements in the hope that should we find in
practice that any of
them is not in fact true we will be better prepared to deal
with that
reality. To this end I offer the following thoughts.
## The cure is coming soon:
Of course it depends on how you define 'soon' but I see the
following as
indicators that the cure is still some years away.
* they are still at the basic research stage with the most
lines of
investigation - no-one has yet got past the 'this looks
very promising'
stage. As the lead time from E Day (Eureka Day) to C Day
(Cured Day) is
anything from 5 to 10 years we have that period of time
still in front of us
AS A MINIMUM. It could well be very much longer.
[Dr. Fischback of the National Institutes of Neurological Diseases and
Stroke, which does most of the PD research, and grants most of the
dollars in the U.S., says that with enough funding it may be able to be
done in less than 5 years. He doesn't and can't commit to that, but has
always said within ten along with the top researchers in the US--and
I've heard them in person say so. Now, what they are saying is, to
speed up a cure takes money, so that research that is ready to go
forward now, must not be put off for the lack of funds, because that
will lead to decades of delays. We want to see various research
approaches on repairing and replacing brain cells to go forward
simultaneously, not sequentially--that will take too long. There is
brain cell replacement going on in humans already. Conclusion: There is
a realistic, authentic, educated reason to pushing the legislators to
fund vital, research for a cure, AND for improved therapies that last.]
* I would suggest that the medical establishment
anticipates that the
cure will be some while yet. A strong indicator of this is
the
proliferation of centres performing PD surgery and the
numbers of doctors
learning the techniques. You don't invest that much time
money and
infrastructure unless you anticipate a return on your
investment over a
reasonable period. [You must realize that this is the U.S.
and competition is the name of the game--everyone doing and promoting
their own thing; it not controlled and coordinated by government. Just
because there are new developments in Fiber Optics, and DSS or whatever
that is, and digital cable doesn't mean that everyone is suddenly going
to give up the Modem business at 56K---alot has been invested in current
therapies already, and the possibility of being outdone or replaced is
something that coexists with innovation in the global economy daily, and
certainly very strongly in the US, where there is little government
control over industry.]
## The cure will be found
Again it depends on exactly how you define cure. If we are
talking about
eradicating a disease so that it no longer exists then we
are really going
up against the odds. I tried to think of how many and which
diseases
medical science had eradicated and there aren't many - and
most of those
were
'cured' by preventing people getting them in the first
place. If the 'cure'
for Pd falls into that category it will only occur after
they find the cause
and wonderful as that will be it won't be of much help to
those of us
already
afflicted. As any cure of this nature is only likely to
occur after a cause
has been found I would think it is a long way off yet.
[ Let's define prevention as eradicating the incidence of PD, and
therefore, in future, no cure needed. And let's define cure, as a way
to reverse/repair virtually all damage, and halt progress of disease
that already exists, and very nearly a cure, virtual cure, for
therapies that make an outstanding improvement by repairing the brain
and greatly slowing progression and/or protecting the brain from further
degeneration:
* Agreed--Prevention will take a long, long, time--it's not going to
be eradicated in time for us, but maybe for our children who are at
risk of inheriting it. Again, I agree, it will require what the
causes are to do this.
* Since they are already making real progress in repairing human
brain tissue, and there is some research for strategies in slowing
progression, there is a REALISTIC expectation for a Cure or
Virtual Cure in 5 to 10 years or less. I don't agree that it
requires solving the causes of PD to cure it, but it would be
helpful in halting the progression. Let me give you a real-life
story, my son's story, to try to make my point: He had Acute
Lymphocytic Leukemia when he was 4 years old and had a 55% chance
of survival and what they called Virtual Cure, since the children
who were survivors had not yet lived out their lives at that time.
They did not know then, and still do not know why children get
leukemia OR why the protocol of chemotherapy and radiation works.
But I'm HAPPY TO TELL YOU and MY SON'S HERE TO TELL YOU THAT IT
DOES! He's 28 years old and has never relapsed along with, the
other 45%, before him and since his experience. Some are in their
forties, married and have children. I repeat, there is a realistic
REASON (as in reasoned) why we can expect far better therapies, and
a cure.]
Any cure which will benefit those of us who already have PD
will, by
definition, be one that cures the individual but does not
remove PD from the
earth. Which means that the often expressed wish - for the
day to come when
we are cured and PD is no more - is meaningless unless we
are talking about
two different days and two different cures. [Yup, two
different days two different things--eradication and cure are two
entirely different things in my view.]
## The cure will benefit everyone
This, as already discussed, will depend on what form it
takes. A
preventative helps only those who don't yet have PD, an
inhibitor is better
for those in the early stages than for those in the later,
and so on. [All of aspects of what you say here are being
addressed---is there a guarantee that all will be helped in the PD
community? No. But I believe that the advocates who say, all will be
helped are talking about the funding for research, which will help all
the other diseases research progress.]
## the cure should be the paramount consideration of the PD
community
I believe that it is far from certain that the cure is
imminent and also
that we do not know that it will be of equal benefit to all
of us. [And?]
Consequently I believe that research into managing the
disease should have
at least equal priority.
[Agreed, but there again it has a far larger priority as things exist
today, i.e., the drug companies!]
This type of research has the added advantage that
benefits flow from it continually as opposed to us all
waiting on a cure
that will be some years yet and may be a great many years
yet. [True, but better therapies, maintenance, and intervention is
needed, and has always been dominant; but without a way to stop and
reverse the disease process, I will end up as my mother did, choking to
death on her own saliva, unable to move or speak, during the night in a
nursing home alone. Morris Udall, for which the Udall Act was named
here in the US (he was a Congressman from Colorado) died in 1998 just
like my mother did.]
## time is running out - we must have the cure now
[we're in a hurry BECAUSE of the very things you say; advocates want to
put the pressure on to speed things up because we don't want another 30
years to pass between when my mother died in 1972 five years after she
was in the L-Dopa trials at Columbia Presbyterian, and when they develop
really life-saving therapies. Not because it has to be for us, but
because it won't happen unless we advocate for it.]
I too would like to see a cure in my lifetime (preferably
one I can benefit
from), but I have never quite worked out why so may of us
seem to think that
it MUST happen in time to save THIS generation - what's so
special about us? [And why shouldn't we want to be rescued,
and make sure that are children won't have to face the threat of PD.
We're as special as any other generation.]
## anyone who disputes any of these is thinking
negatively. [If the situation is truly negative and virtually
hopeless, then I would agree that a reasoned understanding of a poor
outlook is realistic; but IMHO this is not a reasonable outlook to have;
I think there is a realistic reason to expect major improvements in the
management, reversal, and slowing the progression of PD for many of if
not all of us.]
It is not negative to see things as they are. [ This
presents the question of how you think things are.]
A positive attitude which exists by ignoring the realities
is really denial
[Agreed; that is why I am so positive about a reasonable expectation for
a major improvement and/or cure. It's doable, no guarantee, but since
it is already happening, why not have a realistic, reasonable, positive
perspective to move the process forward?]
[What do you say? Comments, Dennis or anyone? A debate, not an
argument?] [Charlotte}
Dennis.
+++++++++++++++++++++++++++
Dennis Greene 49/dx 37/ onset 32
There's nothing wrong with me that a cure for PD won't fix!
email - [log in to unmask]
Website - http://members.networx.net.au/~dennisg/
--
Charlotte Mancuso
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