Demand the powers at be <not political, conservative labour or the the raving monster loony party> .demand the multi national drug companies to fund intensive stem and cell regeneration research .Only last night i wasnt shocked to hear that the latest self re generation of heart tissue had to be self funding . the men who really control the world.the ones who bought president bush to suspend stem cell research for years,refused to fund a penny.Why would they?
I can think of hundreds of £billions of reason why not.Imagine when the genie eventually forces its way out of the bottle onto the table or more specifically into your dead but replaceable brain cells how much they stand to lose . their very existence is at stake !This is no longer new technology its out there and if i was bill gates and could commission my own team i m willing to wager ,if not cured i d be well on my way in 12 months, not the 10 yr process it take the fda to launch a new repetitive pill. what a joke .maybe i watch too many movies but if you had the method and approached the drug companies , i dont think youd need to worry about your parkinsons you would become one of the disappeared. vive le revolution
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ecker
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Hey oh here we go again, the old conspiracy theory. Big pharma doesn't want to cure us as there's more dosh to be made from keeping us sick rather than cure us. And speak out against the pharma industry and your friends and family will end up wondering why you never come home these days.
Half of me thinks you're mad harbouring and perpetuating such ridiculous thoughts which surely belong on the A to Z works of fiction on Amazon's virtual bookcase or equally at home as the theme for the latest blockbuster.
But the other half has niggling thoughts about treatments on offer, particularly the 'gold standard' levodopa which is coming up for its big five oh. The guest speaker at our support group's meeting earlier this month delivered the cheery news that other treatments discovered since levodopa have very little economic benefit. I failed to share the cheer as my evening allotment of the gold standard wasn't kicking in and I felt like shit - a feeling that is occupying an increasing portion of my 24 by 7.
So what is going on? Or more to the point, what's not going on? Are we mad for not thinking the way you do?
If one thinks that for well over half a century they have been treating PD with Levodopa, the only known source of medication to make any such headway into its treatment, and after all these years of research really they have not come this far when the drug of choice is still Levodopa or some deriative. Then of course they now have modern drugs to counteract the effects of the Levodopa. (They come with their own problems)
I suppose when one thinks about it they have not come very far.
Yet we read almost every week of advances but who sees the consequences of the results?
I am one of those believers who think that cures will never happen for most diseases, because the Drug companies/Governments have too much to lose.
It make pure Economical sense.(Well it does to me)
yes look at the progress in pc s phones .commission samsung and apple to find cure and we might get somewhere . I believe stem cell and self cell regeneration is as big as penecillin and is gathering a pace they cant stop.on one OF the TED talks a neuroscientist says by 2050 we will view pk and alzeimers as we view cholera and the like still around but cureable a disease of the past ,too late for me but i hope he s right
It wasnt until 1960 that it was suggested that Parkinsons was associated with, or caused by, a reduction in the levels of dopamine in the basal ganglia of the brain. Sinemet was introduced in 1971. The media hype which gives promise of an imminent cure ignores the fact that they are often reporting mice studies, with many years of research still required. The drug testing process is long
Jon Stamford writes about the placebo effect on drug trials
". .....In some cases, drugs which have reached their last hurdle before being allowed on to the market can fail at this last fence. The placebo effect is sometimes that strong.
For a drug company, the failure of a treatment in phase 3 trial (that's the large-scale double-blind, randomised, controlled trial needed to satisfy regulators that the drug is safe and effective) is a financial catastrophe. By this stage, the drug will have costs billions to develop and its failure means that none of that money will be recovered through medicine sales. In some cases, such a failure can end a promising drug development programme. In extreme cases, it can bring the company to the point of collapse."
But as he points out "for patients, this is every bit as large a catastrophe. A drug which has shown considerable promise in earlier human studies (phase 2) for instance, will now not make it to the market. It will not be available as a treatment option for us as patients. And this is every bit as large a disaster. In a therapeutic field such as Parkinson's, where there has been little in the way of game changing drugs for decades, such failures are doubly dispiriting."
So what can we the patients do about the situation? How can we hasten and or change this process? Jon gives his thoughts in his Sugar Sugar blog. I agree with him.
Well, let's see here now. Who rakes in more profit than all the pharmaceuticals, big oil, airlines, and we could go on forever and yet has never produced one drug (that I know of), developed any oil/gas fields, flown me anywhere in my life, or really accomplished anything productive that I'm aware of while impediating the productivity of the above and myself while extracting enormous taxes that could be used by those who are productive. That would be our federal government. Vote them all off the island!!
The interesting thing I've noticed about successful entrepreneurs is that they don't tend to worry about all the crap that governments require to do business. They just do it and often fake till they make it. These people tend to be fly-by-the-seat-of-their-pants optimists and for the ones who succeed they learn to let the lawyers and CPAs worry about that stuff when the money starts rolling in. Corporations however have been in business long enough to have lost their founders and have been taken over by the lawyers and CPAs (still responding to the redtape and taxes related to running a large successful business). In essense there's no one left who's creative.
perhaps samsung and the like should be broadening their horizons the advances from the telegraph wire to almos tstar trek face to face wi fi etc etc technology is incredible due to profits to be made and healthy competiton.drug companies will continue to dress up rebrand levadopa till dr spock beams down with the cure .profit rules all that s why we still crawl across the atlantic ocean in 5/6 hrs when concorde was doing it in 3. 30 years ago .opec victorious again
since we're throwing out our solutions to the world's problems, here's mine. we're looking for the cure in the wrong part of the body. when I die I'm leaving my brain and my colon to science for research. I am the cure! Meanwhile:my neuro, who's a great research doctor, says that (after years of research) only things that are proven neuroprotective: exercise, chocolate, coffee and sex! ANyone volunteering for clinical trials?
To this i would like to add that we have a slow disease, and that in someways the drug development process is not well suited to this. We take time to sort out what of the many symptoms we get are improved, and it may take longer to ascertain those improvements clinically, i.e. as a measurable observable phenomena. If the cohort of participants it too small and the trials is not conducted for a reasonable length of time for PD participants to show such chnages adequately, then the end points of a trial do not get met.This is a problem because potentially good drugs could be lost in the process. A way round that would be to recruit PWP for longer term studies, after the safety endpoints have been met.
Hi Everybody. I sit here and wonder at our predicament. Let me start by repeating the old adage, "We are all different!" Bearing that in mind, I want to remind participants that I have been able to reverse some of my more debilitating symptoms by carrying out, what I believe to have been, the causes of that improvement. Remember! I have said that we are not all alike!
1. I only took one type of medication for ten years - Eldepryl, which is an MAO-b inhibitor, which helped me to make use of more of the dopamine already in my brain, rather than putting in levodopa, which turns into dopamine in the brain.
2. I had been doing a lot of exercise before diagnosis and have changed it to regular energetic walking ever since
3. I made the difficult decision to give up my job, and got rid of a great deal of the stress out of my life
4. I Learned how to control many of my movements by using my conscious brain to control them.
5. I changed my attitude towards my Pd from being a victim to being a winner.
6. I increased the amount of brain exercise I did every day. I also purchased a BRAIN EXERCISE program from Posit Science, which did wonders for my memory
7. I took two supplements, which I have later learned can, and do, have a positive affect on Pd. They are Folic Acid and Chellated Calcium and Magnesium. You can look these up on Google.
At the time of writing my book on my changed condition, I was the President of our National Parkinson's Association, which received most of its funding from Big Pharma. Behind my back, I was asked to resign from the Association. The reasons for asking me to resign were;
1. I was using the Association to sell my book. That was a lie. I never once mentioned my book at any meeting. Yes, people did ask me about my book, after the meetings.
2. I was claiming to be cured, without the use of Medication, which was a lie because I have never claimed to be cured, either in my book or anywhere else. I mention Eldepryl over 50 times in my book.
3. I am misleading people! How can I mislead people by telling them a true story?
4. I obviously do not have Pd, so I should stop telling people that I do. Who, I wonder, diagnpsed the Pd? It was not I. It has been confirmed many times by other neurologists, since diagnosis. Who do you think put the Association up to this? Why did two leading neurologists head the attack on me, without ever having examined me?
From this you will understand my attitude towards both the medical profession and Big Pharma. I am a realist! I know what makes the world tick, and it isn't caring for the sick! We generate an enormous amount of money for the fiscus and many others. I keep telling everybody, "We are on our own!"
THIS WAS WRITTEN ELEVEN FREAKING YEARS AGO???? Who puts this crap on here??? This is the lamest “Support group “ I’ve ever encountered!! It’s more of a game called HUNGER! Who can one up the other by digging up the latest and greatest studies that never make the cut. More than half of you dont even have PD but you act like you’ve found “the cure” Well no shit Sherlock! If I had merely “symptoms of PD I could also find a cure! Dont you think Neurologists are up to date on a cure? Do you think people have been cured and are hiding it from the world? What you need to do, and I mean you all who are stuck in this group like blind mice is to first get rid of this John Pepper thing that’s keeps rearing its ugly head like the non stop miracle Gundry videos! Pretty sure JP never had PD and if he did dont you think we would all be healed????? Let’s stop drinking the kool aid ya’ll are constantly stirring and get your head out of your ass and say something that matters,
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So You Want A Cure For Parkinson's Disease 
Do you think embryonic stem cell research is unethical? 
"There's no money in a cure"
DO YOUR RESEARCH. Cure yourself. 
Why don't we have a cure yet? What are we paying the drug companies for anyway?
