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Finger Pointing....

Quote:

you also ignore the european/asian/canadian pd research community whichis much more collaborative and accepting of alt. pd research. you think german pd community, in germany naturpathy is huge, wouldn't have embraced this procedure if it worked? i don't think it's nearly as much publish or perish outside the u.s.
btw, google exercise and pd., a lot of research

there is a tremendous amount of research in europe/asia on natural supps.

you ignored my specific questions and responded with a critique of the u.s. commercial/academic pd community.
i don't get it.

I must say I really do not understand the attitude or contentious tone others take with one another over treatment. Really, what is bothersome to me is the petty expenditure of emotion over larger questions that should have us demanding better treatment than levodopa. Why isn't anyone getting ticked off at their government health agencies or protesting at clinical trials over the fact that we have had no novel treatments other than the crudest form of therapy with a 50 year old drug? Frankly, at this point a levodopa suppository would be Nobel prize material. As for any other scientific method...

- There is no scientific evidence that levodopa is toxic. This is a longstanding myth about the drug. There are, in fact studies that indicate it as neuroprotective.

-There are no controlled trials that indicate the Parkinson Recovery treatment or approach is the better than, equal to, or less than any other complementary including ayurvedic, traditional Chinese medicines, etc. These should be studied against one another to determine what is most efficacious- until that time, it's a crapshoot at best.

- Until we can unite on a global level to share knowledge; establish common clinical trial ethical standards; establish clear standards for diagnoses and care

Scottese has the right questions in mind. When we start squabbling, we end up finger pointing the wrong at the wrong issues. The question stands; why is research, trial design, and treatment more advanced in other countries. We can blame Amgen, Medtronic, Mirapex, all we want but we should not overlook our quite complicity in all this.

Laura

Im not sure about extolling anything. Someone said L dopa was not toxic. It is. I provided a quote. Thats disscusion not extolling. Olds news? Not sure what you mean there. Whats not old news? Things come a go. The car is old news, lots of us have one. It either works or not. Thing is old son lots of people suffered due to the meds on that program even after being told dont do the program if you have EVER taken meds. Take the meds cant do PD recovery, thats not in the fine print. Thats on the cover. Thats why they suffered. But understandably people were desperate

That is why Im talking, discussing, the meds here on a neuro forum. Simple really.

Jak

[QUOTE=soccertese;671342]best of luck, let me know how it works. i actually bought her video tape when i was first diagnosed 10 years ago, its old news. didn't try the technique. not sure why you feel the need to extol this unproven theory here, just doing us a favor? just smarter?
there was a message board devoted to pdrecovery, if my memory serves me correctly, everyone suffered greatly as they tapered off their meds and noone "recovered" in the slightest.

My best sort of American! Gracious and informed. Bravo sir.

jak

Quote:

Originally Posted by reverett123 (Post 671373)

Jak's "extoling of an unproven theory" is far more at home here than somebody copping an attitude. Just a brief look at the archives will show a ton of unproven theories and there aren't any guards at the gates trying to keep them out.

What was wrong with the 90's? :winky:

Chill S.

mate if you dont like the channel change it

Jak

Quote:

Originally Posted by soccertese (Post 671409)

i am entitled to a skeptical opinion, especially when one presents a theory as fact. in my opinion this board would be useless if every unscientific theory was given equal weight here and we discussed it to death.

i stated an opinion, you may not like it but i am not censoring anyone. this person posts on this board, states that the 1 drug that gives me decent relief is bad for me, define "bad" for a pd'er, and offers up an alternative treatment that started in the 90's, no independent validation that it works at all and if it did it's been around long enough how could it not be widely adopted since it's a potentially free treatment. you are basically asking me to believe in the tooth fairy. it might exist, it might have a placebo affect for young kids but i stopped believing in her years ago after i learned to read.

did you read the posts on that pd recovery message board? every hoping it will start working?

i call a spade a spade.

Your a smart Guy. (And Im chatting now to the others mostly since your already a believer.)Your right to mention money reputation, external PD forces and marginalization of the pt, data interpretation etc.

I am in health here in OZ, I C what happens, how it works at the coal face in ER. Health is broken here but its worse in the USA. Big pharm is raking it in. Another thing is the USA is broke. You economy cannot take one more shock. The world is in bad economic health too. Something that defines PD in another way will not be accepted mainstream in this climate or at all. Look at the Helicobacter story. That was provable but it took a mighty and long effort to displace old theory.

If PD ers say had no PD right now those on the meds would not be able to get off them. That has been proven. The meds are incredibly powerful and change the brain. I understand this is tragic for some to read.

If you think Big Pharm and the Health Industry is there for you 100%....... you need to rethink.

Jak

Quote:

Originally Posted by reverett123 (Post 671530)

I think we will agree more than not. And so you have a better idea of my thoughts:
1) Science is the gold standard when it is allowed to work properly. But with PD external forces and conditions have to be dealt with.
2) One is the force of money. We represent about five billion dollars a year. To pretend that that much cash does not impact things would be naive. It is a factor at every level, too. From my decision between brand and generic. To a scientist's calculation of how to structure a grant proposal. To a department head's decisions that influence a subordinate's tenure. To public funding allocation at NIH. To Big Pharma boardrooms where the discussion is on duty to shareholders, not to welfare of the patient. To the multi-Orgs where staff's first duty is to raise funding for their own salary each year. Each level influences the science.
3) Another is the force of the marginalization of the patient. With few exceptions, nobody cares what we think and they darn well don't want to hear why we think they are wrong. And as individuals, our voices grow weaker each day.
4) Another is the force of academic conformity. Nobody gets tenure because they discover that a blamed foot injury really is the cause of PD. Truth would be irrelevant.
5) Another is the sheer success of science in gathering data over the last forty years coupled with the failure to interpret it. It is like those NASA warehouses of precious lunar orbital data from the 60s left to rot.
6) Finally, there is the fact that the current orthodoxy on PD is dead wrong and time and money are being wasted. PD is not even a neurological disease! It is an immune-endocrine disorder that, with a little help from the GI system, damages the nervous system under the onslaught of environmental insult mediated by genetics and epigenetics. IMHO, of course. :D

You see why they don't invite me to their parties. :D:D
4)

Remember Thalidimide? The Researcher knew then had to prove it? It took time. Its only a matter of time IHO until how oral L Dopa meds work gets fully understood. But whos going to fund this. Big Pharm? Why would they its one of their cash cows. So it takes individual people to join the dots, compile the evidence. If you think Big Pharm do lots of R&D read an insiders book

Im responding so that myths dont perpetuate but u have to do your own research.

This is from a PhD study going on

Background: Levodopa (L-DOPA) is the most widely used and effective treatment for Parkinson’s disease (PD). Many in vitro studies however have shown that L-DOPA is toxic to dopaminergic neurones and have raised concerns that L-DOPA could cause neurodegeneration and accelerate the progression of PD. Despite extensive research over the last three decades the toxicity of L-DOPA has never been completely understood

Quote:

Originally Posted by Conductor71 (Post 671752)

I must say I really do not
- There is no scientific evidence that levodopa is toxic. This is a longstanding myth about the drug. There are, in fact studies that indicate it as neuroprotective.

Laura

Quote:

Originally Posted by alongcamejones (Post 671789)

So what do you suggest we, who have been hoodwinked into taking this drug, do. Find a tall bridge somewhere?

I'm a skeptic when it comes to pharma, but you offer no solutions, just arguments.

Im not God. If your solutions are working then whats the issue?

If they are not then maybe you will follow any discussion that questions whats going on. Then again maybe not.

If you dont like the discussion change then, I say this repespectivly, just change channels. We all make choices right?

I choose to seek. Did you know Low dopamine levels inhibit seeking behaviour?

Jak

Quote:

Originally Posted by bluedahlia (Post 671797)

So what do you suggest we, who have been hoodwinked into taking this drug, do. Find a tall bridge somewhere?

I'm a skeptic when it comes to pharma, but you offer no solutions, just arguments.

I grew up with someone with untreated PD, my understanding of her has changed immensely since I started to get symptoms that were similar, around fifteen years ago. It took seven year to get to diagnosis (wrong age, wrong size, wrong face, no tremor), I was by then shuffly, blanked-faced, sooo slow, sleepless, perseverant, and looked and was treated as though I was years older, hostile, and possibly unbalanced. I got passed around the various disciplines where nobody found anything wrong with me at all, until I wound up with a neuro who recognised PD and treated me.

The years since have given me back a life, I can smile, answer a phone, function, for some part of the day move the way I want, sleep..... I would not have had those years without l-dopa.

IT is imperfect, it does have serious problems, but I would not be without it. The fact is that those who try to come off it and do have PD have great difficulties precisely because they have PD, and their brains become starved of dopamine. That there is more to PD than dopa is not in question, it's something that still needs proper attention from those who are looking at the disease, rather than the treatments. Some would say it is addictive, some would say it damages the brain, but others like me say it has given them years that they would not have had otherwise. Untreated PD does not look good, unless you are fortunate enough to have one of the very benign varieties.

Insulin has problems, it is not a cure all, but ask a diabetic what he would do without it and see what he says. Same goes for l-dopa. Until they find a way of stopping this thing in it's tracks it is one of the things we can use as a lifeline, and even the doctors are now realizing that many of the problems with it come and came from indiscriminate prescribing done by people who do/did not understand the implications, using it like a hammer to crack an egg.......

I don't see the point of trying to demonize l-dopa, there are other much worse drugs prescribed for PD, but even they offer help for some..... all of them are imperfect, what would be perfect would be a cure, but as yet there are none of those on the horizon........

Lindy