Charlotte,

I welcome the opportunity to explore the discussion points further.


In regard to the time until the cure is found you wrote:

>[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.

What concerns me is that it is possible to read statements like the one
above and forget four things.  The first is that little word MAY, and the
second is that after the cure is found there will be the 5 - 10 year wait I
mentioned while it is tested etc. The third is that the word cure has
several meanings and that the doctor may be talking about high levels of
management while we are dreaming of rising from our beds and walking (in a
figurative sense for most of us:)  It is my belief that it takes one kind of
mindset to be positive over a 5 year period and a different kind of mindset
to be positive over a 10 to 15 to 20 year period.   We will all have to use
our own best judgement to decide which of these mindsets to adopt.
you wrote:


>           [ 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:

Thanks Charlotte - exactly the point I was trying to make - that the phrase
"the cure" is used to cover all of the above and that  if our deliberations
are to have any meaning and if we are going to decide anything about our
attitudes to the future we need to stop using the phrase 'the cure' in such
a generalised way.

>              * 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.

Charlotte - The only thing I remember saying we would need to know the cause
for was prevention.

I don't doubt that the cure (in one form or another) is coming. I have no
doubt whatsoever that every dollar spent on PD research is a dollar well
spent- I don't doubt that the more that is spent the sooner we will get
results.  The point I am making is that if they found the cure today it
would be at least 5 years before it became generally available. So in terms
of when we could hope to be actually cured we need to add 5 years to the
periods given. When we do that even the above 'realistic' period becomes 10
to 15 years in subjective terms.  Which means that someone diagnosed today
will have had PD 10 to 15 years before the cure is available.  Look at the
PWP you know who have had PD that long already. Ask yourself, or better yet
ask them,if they feel they have had PD for a long time or a short time.  10
to 15 years is not a short time to have had PD.  10 to 15 years is not
'soon' in PD terms - and 10 to 15 years is a best case scenario.  I am not
trying to be negative - I am not trying to scaremonger - I'm not even trying
to prove I'm right and someone else is wrong;  what I am doing is trying to
get across my  concerned that if we just accept the 'good news' without
questioning it and putting it into perspective, we are going to put
ourselves into the wrong positive frame of mind (as mentioned before).

I don't see that as an unreasonable thing to do - but I've been wrong
before:)

Dennis.



I'd like to end by discussing your response to my  '##  time is running
out - we must have the cure now comment'.  I agree with everything you say
about the need to have the cure/or virtual cure found as soon as possible,
but, speaking as a full blown, bona fide, fully paid up member of the "Baby
Boomer" gimme generation I find myself amused that we take that gimme
attitude into even this arena. Its the 'must' that gets to me