Hello Art,

Your message to Jill could not have been better timed because I have been
deliberating whether to post something to the group after reading several of
Murray's postings over the last few days.

You're right one should not be afraid because there is nothing we can really
get wrong as we are sharing information with each other like a family; and
families (should) listen and respond accordingly.  I would go as far as to
say that this group is my family because my own family show no interest in
what I have to say.  They are more concerned with fashion and materialism
than with the ideas I wish to put to them.  I can tell when they are not
listening and occasionally the only feedback I get is something like, "what
do you know, you're not a Doctor"?  Or, "why don't you do as the doctor
tells you to"?  Or, "you read too much"!  They without exception have heard
the words, "at the present time there is no cure", so they've decided that
there is nothing to do other than take the prescribed medication.  It is bad
enough having to deal with PD but when one's family show's no interest and
is totally indifferent, it's tough.  The good news is that I'm a stubborn
bastard and am determined to win this one on my own if I have to; and
perhaps on the journey will find someone that will share my hopes and
aspirations.

"We don't know what the cause is and I'm afraid at present time there is no
cure", this was said to me on April 6 1993, the day on which I was told I
had PD.

"We don't know whether the medication or Parkinson itself causes the
accelerated degeneration", Professor of neurology, national neurological
hospital, London.

About 18 months ago I posted a hypothesis for the group to consider and one
or two sent back encouraging replies.  Over the last few days Murray has put
up three or four key news items which lead me to repeat once more this
(refined) hypothesis.

PD has been described as a designer illness in that each one of us is quite
unique, yet we are prescribed the same medication, I accept in different
doses.  I wonder if any of you have seen the film, "Awakenings"?  This is
based on a true story written by Dr Oliver Sacks, MD.  In the early phase of
the film Dr Sayer is pouring through the records of every patient looking
for clue's and on leaving work for the day he turned to his assistant and
said, "with so many atypical's you think would find a typical".  Up until
the last couple of days I thought that the cause of PD was manyfold and
therefore involved finding many cures.  Something which would take a lot of
investment and time to produce the medications.  Quite depressing if you
think about it too long because based on historical developments in the last
30 years the only medication to have been produced L-dopa & derivitves and
agonists. Therefore how long before the next significant development/product
launch?
a
Then the other day Murray's posting regarding, "the wheat bowl of the USA",
followed by another posting about Michael J. Fox and his crew on Spin City.
I was so excited by what I read that I couldn't sit still!  For the first
time I was convinced my I'm hypothesis was on the right track in that the
part of the brain producing dopamine was not prematurely dying/aging through
natural (unknown) causes but it was due to external toxins (agricultural
chemicals: pesticides, weedkillers & nitrates), class a (illegal) drugs:
heroin, cocaine and all the other trendy drugs that have been around since
the Sixties.  And antidepressants (I know the latter to be true as there is
documentary proof in the BMA stating that Prothiadin can induce
Parkinson's).  I took this medication from August 1988 through to January
1990 and toward the end of 1990 the first signs of PD (loss of balance and
difficulty writing) appeared.  In effect the brain receives a massive blow
by one or more of these "chemicals".  Therefore, I think we have the cause,
"chemical toxicity".  Something which has been completely overlooked because
the medical people are so set in their ways that they are applying an
analysis and diagnosis and medication plan based on very old procedures.
That is, it's the body which is ageing and they never look to the external
possibilities.

I have always held on to the words, "it's dying".  That is a percentage of
the dopamine producing part of the brain is still functioning. However, we
then come to what I believe is both helpful and destructive -- dopamine in
the form of Sinemet, etc.  The body has the capacity to repair itself all
the time and it has monitoring systems that records more things concurrently
than a computer ever could and makes adjustments etc.

So let's take one example the level of dopamine in the body.  If natural
dopamine + orally taken dopamine = > body's requirements the brain sends a
message saying, "stop production".  Therefore, because of the external
symptoms worsening we gradually take more and more dopamine each day at the
same time the brain produces less each day to the point where they crossover
and then eventually the naturally produced dopamine ceases.  I hold that
taking dopamine in ever-increasing doses is the nail in the coffin.

In my case I started on a  monotherapy of Permax, February 1999.  Within
three months I was doing everything for myself once more on a daily dosage
(total) 1 mg.  The Neurologist increased it to 3mg at a review August 1999
and I stayedon this up until about six weeks ago when I reduced into 2mg per
day of my own accord.  I also take the smallest size Sinemet tablet (62,5)
three times a day -- I intend to cut these back to 0.

May I say at this point that this is what works for me and in no way am I
recommending it to the group.  All I'm trying to facilitate is discussion
and provoke thinking about the scenario of a solution.

The cure which needs to be found in effect  is an antidote to the cause of
the damage and therefore the diagnosis should really collect data relating
to the individuals history (military service, employments, geographical
location and medical).  By doing so the cause should be quickly identified.

The cure needs to be something which will protect the remaining functioning
part of the brain and allow it to continue producing dopamine at reduced
levels whilst it repairs itself and gradually increases production again.
It is possible in conjunction that the smallest possible doses of dopamine
may be given for short periods of time in order to provide reasonable
mobility.  This can also be achieved with an agonist mono-therapy.

I feel very confident that my hypothesis is on the right track because of my
first-hand knowledge of antidepressants and the articles posted by Murray:
Wheat regions of USA; Parkinson's the Enigma; AND New Zealand.

What can we do?  I think the first thing we need to do is complete the
survey that Edith and Mario have been working on as we have sufficient
numbers to generate meaningful analyses.  We should encourage foundation
groups such as Michael J. Fox's and Muhammad Ali's to investing some $ in
extending survey to include as many patient records as possible (living and
deceased).  No one should be afraid of doing this is as it's for our own
benefit and morally we should do it to save future numbers from being
affected.

I'm sure we can find one or two dedicated people in the medical profession
who are prepared to take this on.  The real champions are the ones who do
this for the benefit of man rather than kudos.

If we could put men in a place like Los Alamos and within months they
produced the most terrifying weapon ever made think what we could do by
putting together a team of people to tackle Parkinson's, MS, motor neurone
disease, Alzheimer's, etc.  And at the same time regulated the industry
which is involved in both agrochemicals and pharmaceuticals.  And stopped
the CEO's of the companies within this industry paying themselves such
obscene amounts of money -- the outlgoing CEO of Glaxo recently tried to
award himself a parting gift of £20 million that's Pounds not Dollars!
Think what could be done this amount if it were applied to research?

Do I dislike the Agrochemical & Pharmaceutical Companies? You bet I do

Do I believe that the Pharmaceutical Co.'s want to find a cure? No (there's
no money in cure's)

Do I believe in creating a Global database of Patient records going back as
far as Possible? Yes

Do I believe in premature aging of the Brain? No

Do I believe in external causes? Yes

Do I believe in finding a way of protecting the undamaged part of the Brain?
Yes

Do I believe that diagnostic procedures need to be updated, to include more
historical data? Yes

By the way, on a lighter note, I made a recent discovery that caffiene, in
the form of Espresso or Cappucino, made on my Home Espresso machine, gives
me the most amazing boost; my mobility is dramatically improved for anything
upto 6hours. If you're interested in trying this out go to Starbucks or
similar and take an  Espresso, maybe a second, and as you get up to leave
consider whether you feel any better. If it works for you and you don't have
an Espresso machine at home I suggest those of you (who want to) in the USA
checkout www.wholelattelove.com (Todd is one of the best Sales Support
People I've ever dealt with) and in the UK www.havanacoffee.co.uk. I've no
personal interest in either of these companies. All I would ask is that if
you see substantial improvement, tell the group and your GP and  Neuro. I
liken it to firing neat fuel into fighters engine on take-off; the lift is
amazing

You'll need: an Espresso Machine*, a Burr Coffee Grinder** and the highest
quality Espresso Beans (and maybe some cups/saucers; an espresso is not an
espresso unless it's in the right cup (LOL)

* Gaggia Classic, Rancilio Silvia or Briel  Chamonix

** Saeco Maestro and Dualit (made by Saeco)

I hope I've provoked some thinking and motivation into doing something as a
group. I firmly believe we hold the key to the solution; which is on the
horizon.

Warmest regards,

Marco
(54, London, England)

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