Negative, Positive, or Realistic?

[Charlotte Mancuso <serenityplus@xxxxxxxxxxxxxxxx>]

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 - dennisg@xxxxxxxxxxxxxx
             Website - 


--
Charlotte Mancuso
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