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... ... that  ... is not in
          fact true we will be better prepared to deal with that  reality. ... I
          offer the following thougts
                       ## The cure is coming soon:

                       Of course it depends on how you define 'soon' [snip]

                       * 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.  [snip] what they are saying is, to speed up
          a cure takes money, so that research ... 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 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 higher 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 are 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 yours 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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