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) ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn