I skim-read Albert's interesting post a few days ago with the intention of reading it more completely when I got more time. When I searched for the post again a few days later, I discovered that it had been deleted by the moderator.
I searched for and found Albert's substack page, and have copied the link below for anyone who may be interested.
Yeah they'll come and get you too, and on the same pretext.
by taking down the post, they add credibility to the content.
Marion/Marc ,
Thanks for your comments; with which I concur.
This forum is called “Cure Parkinsons”, a worthy objective that all of the >26,000 members would surely aspire to? But which begs a question for the moderators; are Health Unlocked’s posting rules conducive to actually curing Parkinsons?
Like many PwP I sense that we are not being well served by big Pharma. It seems that their primary objective is to develop patentable molecules that have some efficacy but probably need to be taken on a continuous basis to be effective. They are not a cure but a band-aid to temporarily mask symptoms.
Dr Albert Wright has been a godsend due to his tireless efforts to resolve Parkinson’s. For me, Albert’s broccoli seed tea had reversed my non-motor symptoms markedly. See the chart above, which was created nearly two years ago. My non-motor symptoms have continued to reduce slightly with no contraindications and at an extremely tenable price point. Meanwhile my motor symptoms have got worse…
Not one to rest on his laurels, Albert has turned his attentions to reversing PD motor symptoms too. Once again he has had considerable success and while I have no personal experience of this new protocol, I have every reason to believe him.
If you’re interested in Albert’s work, please follow this link. patientresearcher.com/
I think a spotlight needs to be focused on PD research organisations to try and understand how and why extremely generous donors would contribute well over USD1 billion but have so little to show for it. Perhaps nominating Albert for a Nobel prize in medicine, would send a strong message to the donors? And divert much needed donations to fledgling research organisations that are already delivering impressive results on shoe-string budgets?
well put
Not. Really not well put
Albert for a nobel prize? When he learns to use the right TLA maybe.😂
Time for a fact check
The great martyr's post was not kicked for bad science,
it was not kicked for suggesting that the site's hosts are part of a global conspiracy to earn a living by selling chronic medications and inflicting needless suffering on all of us, who they could easily cure if they wanted to
It was kicked for coming out of the blue with a link to spend money with Albert. Rule 6
"6. This community should not be used for commercial or personal promotion
Please - no selling, no fundraising, no spam. "
That simple. Nothing to do with challenging Big Parma, which he is welcome to discuss here. Just "don't sell stuff"
But, whilst I'm here, let me have a pop at the conspiracy theorists weak logic and consistency
"It seems that their primary objective is to develop patentable molecules that have some efficacy but probably need to be taken on a continuous basis to be effective."
Oh right - so the only legitimate definition of a cure is something which produces a permanent and total resolution in a single intervention ??? Not something you have to take daily like a blood-pressure tablet?
Just like Alberts tea - one dose , or one course, and you are cured for life? Surely Alberts tea
"needs to be taken on a continuous basis to be effective.". But that's OK for Albert, not for Big Pharma's suppressed remedies.
And provides only partial non-motor symptomatic relief - maybe. Or a placebo effect or desperate hope effect. (The trial Bolt_Upright linked to has a completion date of 2023, last post date of 2023, and "recruiting" status.)
Which trial did I link to? I'm just curious. Thanks.
NCT05084365
Fortunately, the Chinese Trial cited above doesn't seem to have started even though the completion date was 2023. If it had, it would have failed because it was designed to measure cognitive function and motor symptoms. The detailed description quotes:
"The primary outcome will be the cognitive function improvement... Secondary outcomes include motor symptoms, biological data, MRI, safety and tolerability." Non-motor symptoms are not mentioned.
As I have stated many times in my publications and posts: Sulforaphane attenuates non-motor symptoms. I have always stated that Motor symptoms are strictly unchanged by BST. This distinction between non-motor and motor symptoms is the most important information that has come out of my research using Broccoli Seed Tea.
These results were published in January 2024 (no link given, no spam).
The problem is that the medical profession is only interested in motor symptoms which as we all know are related to, but not exclusive to, the loss of dopaminergic neurons and a shortage of dopamine in the striatum. Even if sulforaphane could stop the loss progressing, it won't bring back lost neurons and rebuild the neuronal network.
Sulforaphane acts to stimulate the Nrf2 transcription factor, the so-called master regulator of Redox homeostasis. It does this in astrocytes in the brain (astrocytes are the neuron's housekeepers) and epithelial cells in peripheral organs such as the intestines and urinary tract. This results in these cells suffering less OS damage, less inflammation and their damaged mitochondria being replaced by new ones, which in turn make more energy available to the cells concerned. These are all processes which, when left untreated, contribute to neuron loss which is associated with disease progression.
In parallel, Broccoli Seed Tea, which contains sulforaphane, strongly and rapidly attenuates non-motor symptoms. My argument is that non-motor symptoms are associated with the ongoing damage in both neurons and peripheral cells throughout the whole period of the disease (pre- and post-diagnosis). They are the symptoms that we should be monitoring. Any future clinical trials should be designed to stop disease progression by targeting Oxidative Stress in Astrocytes and peripheral organs and the Primary outcome should be non-motor symptoms of Parkinson's, not motor symptoms which are resistant to change. The objective of my blog on Substack will be to inform people about that. People with Parkinson's should be shouting out loud for research to be focused on targets that address that problem and not on re-repackaged levodopa as is now the case.
Thanks Albert
Very informative. I wish you success with your research. I'm waiting on a trial result to be published this month, before getting distracted with PD again. And I am behind with both the day job, and promised glove improvements. (Mrs WTP is not going to be impressed if I don't have a robust system sorted before our trip to the UK at Christmas)
Your plans for clinical trials, and subsequent uptake by PWP would benefit from a scalable Sulforaphane extraction. The tea doesn't lend itself to a double blind placebo controlled study. And it's a bit of a PITA in use too.
I think to suggest stem-cell research, c-abl inhibition, glp1 receptor agonist, vibrotactile gloves, and other research is just repackaged levodopa is a bit unconvincing, and there have been some excellent repackaging of dopamine therapies like duodopa, and the Lille University pump, not to forget things like the INSERM spinal neuro-prosthetic.
But I'm a great believer in the idea that if you turnover enough stones, you'll find the buried treasure, so its good to have another research option. And I'm glad it's working for you
One thing that I firmly believe pharmaceutical companies do, is if they find a natural molecule that may be useful in treating PD, they won't really investigate that molecule. Instead they will try to develop a synthetic patentable molecule instead and test that. An example would be NR, which was really just a patentable version of NA.
Yeah, for sure. Pharma companies are in it to make money. They only invest in what gives them a payback (or might do, at high risk of failure). Ford motor company only make cars they think will sell, and expect to make money doing it. So do Apple, Fender guitars, Harley Davidson bikes and every other business. It is a mystery to me why people confuse commercial pharmaceutical companies with research charities.
But alleging conspiracies which manifestly don't exist and are absurd - alienates potential friends and achieves 5/16 of 11/32 of f*** all.
Lol 😂, the pharmaceutical market it’s not the same as the motorcycle market since the pharmaceutical market is heavily regulated by government agencies that are in fact a protectionist system in favor of pharma.
in Europe or in US it is not possible to buy a drug directly from China if it is not approved by government agencies , even if it is the same thing , because this would cause revenues to collapse but also healthcare spending for the citizens 😊.
These are obvious things that everyone knows.
It is a well-studied system to maintain a de facto monopoly on the pharmaceutical market and set the prices they want.
This monopoly recently also affects the freedom to choose treatments, as doctors are also obliged to prescribe a predefined protocol for the disease for everyone, under penalty of revocation of their license.
Richard,
I don't quibble with big pharma's primary obligation is to the share holders and not the public and don't believe there is a conspiracy afoot, but my question for you is; is our health care best served by companies whose motive is to make money or cure disease?
After 60 years, there has been zero results that do more than mask symptoms, so either the drug companies don't understand PD or are simply not fiancially motivated to solve the problem. I think both.
If big pharma is judged by their performance is serving pwp, they have been an abject failure - whatever the reason.
Marc
Marc
I think it's fairly simple. As Bolt points out in a response to this thread, Parkinsons disease is not easy to fix. The good news is that as the disease becomes more prevalent the financial incentive increases. Which is why there's so much more promising research today than there was 20 years ago. Establishing that the drug companies have no success in treating Parkinson's disease and suggesting that they leave the market and don't bother to try is unlikely to help our cause. But drug companies are only going to do research if it will lead to a profit. If you want purely charitable research into the likes of broccoli tea it's either going to have to be by a government initiative or by a charity. Big Pharma are no more interested than any other public company. But the industry for profit is researching possibilities like Buntanetap which you got so excited about. There's plenty of scope there.
My point was how easily conspiracy theories form and grow. You posted that
"by taking down the post, they add credibility to the content"
they did nothing of the sort. It had nothing to do with the content other than the sales pitch. It was simply enforcing the rule of the forum that Albert was either too lazy too arrogant or too ignorant to follow. Rule six says "no Spam". I don't want spam on this forum and I don't believe you do either. But somehow it became about the conspiracy theory to silence Albert, instead of a simple breach of a good rule
That's how these things spread. "They're eating the cats and dogs in Springfield Ohio. "
Best of luck USA.
Maybe if Albert stopped linking his research to the "Big Pharma want to keep us suffering to keep making money out of us" shit, his research and theories might be taken more seriously. As it is, they are tainted with the moonlanding faked in a studio association.
But, Alberts research is irrelevant to this discussion. NO SPAM.
I understand the intent for rule #6 and preventing SPAM as you noted. Which is sending irrelevant or inappropriate messages to large number of recipients. #6 is to keep this forum clear of junk that clutters discussions. Right? Albert's messages must have been interpreted as being so SPAM-ish and sales- aggressive that it cluttered and disrupted the forum? If that's the case, I can count at least 3 other users' posts that should be removed comparatively speaking to that of Albert's message.
In the past when I have clicked on a link provided by a member of this forum it might take me to a study or even to a youtube channel that might wish to sell me something. This was for the first time a member's link took me to a place where that member was in a manner of speaking selling something. And I have to say, I was taken aback
Right but here the rules are applied based on liking , some people laugh at our expense, then people go elsewhere, donations for research too and so they don't laugh anymore.
We have been left to our own devices for a long time now, at least Wriga tried to do something.
Others just make small talk, and then come here to cherry picking a few words for censor people of good will like Albert for the sake of it.
It was 2018 and 7 years have passed😂:
The thing that complicates comment , is that either I'm going senile, or the links are not the same when I look again. My recollection was a link to a site, where the first thing on the site was a link to a subscription payment. That's SPAM. I also recall a page with maybe half a dozen references to Dopamine Replacement Therapies (DRT) as DRP - and that seems to have gone. I'm not sufficiently interested to investigate further.
"Rule 6. This community should not be used for commercial or personal promotion. Please - no selling, no fundraising, no spam."
That's pretty simple. Nobody wants a shelf full of case law (like "Decisions on golf"). So no exceptions and special cases. Just don't post SPAM
point made and taken
I wonder if eating cats or dogs counts as Keto?😆
No that's geese! 😂
As for the conspiracy theory, imagined the scene at the Pfizer board meeting as the chairman makes the following address
" Anderson in research has come up with a new molecule ABC123 which is a completely safe and non toxic one a day oral tablet, which holds the progress of Parkinsons disease, reverses all symptoms including non-motor, and restores patient experience to Pre Parkinsons diagnosis. Obviously although we have total revenues from Parkinson's disease remedies of $zero, and this molecule is expected to generate new revenues during the 20 year patent period of $1 billion per annum in the U.S. market and $2.5 billion per annum in the global market, we will be suppressing any information about this molecule and ensuring that there are no leaks from the 35 research staff who worked on the project, and not producing or selling it for shareholder profit, because we are committed to protecting the revenues of commodity generic manufacturers"
the reality is that the main Dopamine Replacement Therapy (DRT - not DRP) was Sinemet discovered and launched by Merck Sharp and Dohme (MSD, Merck) more than 50 years ago, and long out of its 20 year patent protection such that most of the manufacturing is not by Big Pharma, but low cost, low margin, low profit, commodity generic manufacturers such as Teva, Sun, Mylan, Amneal, Dr Reddy, Lupin, Sandoz, Aurobindo, Apotex, Torrent and others
Big Pharma is not SMERSH from James Bond, but a number of public companies, responsible to their shareholders for profit, in fierce competition with each other, such as Johnson & Johnson, Abbvie, Novartis, Merck (MSD), Roche, Pfizer, Bristol-Myers Squibb, AstraZeneca, Snofi, Eli Lilly etc
Nb MBAnderson the "suppression" (legitimate moderation of forum rules) speaks volumes about - attention to detail, courtesy, and following forum rules, and nothing whatever about adding credibility to the content.
I always think that trying to cure Parkinson's is like trying to stop an apple from decaying while it is inside a sealed jar that you can not open. It's a challenge.
… and as you can see, there are too many objections from people in knowing the truth. This thread is a great example of what happens out there. A person comes forward with a proposed treatment, the validity of which is yet to be established, and immediately there are objections that censor the post without even knowing what it is about. (Yes, because in order to remove a post, it must first be reported by users to the moderators as spam).
An example of an objection is what you say, that is, if the drug is not patentable, no one will finance the research and this eliminates the substances not patentable that remedy the genetic dysfunction.
So in Resercher & Discovery there are too many objections to knowledge and practically there is a priori self-censorship of the research itself, which does not bode well. You could have yours and I could have mine, a vast field which prevents people from observing.
If Parkinson's cure were a completely new thing I'm sure no opinion leader on this forum would notice for this reason.
I am also convinced that soon there will be a very positive turning point, and it will be something that some good researcher will decide to look at without prejudice or partisan interests, will say, “the king is naked “ and we will simply have a cure for Parkinson's, as it has already happened.
Sometimes prejudice is the greatest barrier to knowledge and everyone has their own.
Greetings from Italy, Bolt_Upright .
“Big Pharma is not SMERSH from James Bond, but a number of public companies, responsible to their shareholders for profit, in fierce competition with each other, such as Johnson & Johnson, Abbvie, Novartis, Merck (MSD), Roche, Pfizer, Bristol-Myers Squibb, AstraZeneca, Snofi, Eli Lilly etc”. Novo Nordisk
And on which products would they compete fiercely if they all have the same owners or main shareholders like Vanguard Group, BlackRock, State Street Corporation and institutional funds? All of them! Just check and you will see that it is so, this is not confidential information.
Agree with much of what you say winnie, except for the following actual reality: Actually big pharma IS partly smersh... BUT DON'T FORGET ALSO WE HAVE PHARMACY BENEFIT MANAGERS, INTERMEDIARIES THAT ARE EXTREMELY SMERSH... I guess in the UK sort of world you might call them "value adders" ... We have them too but we don't have that very careful political term "value added" no it's pretty much the same here as it is with them) I think the term is entirely ironic and contradictory, except in the sense that an "adder" is also a deadly poisonous snake...That's what makes the world go round after all, value does not grow on trees, somebody has to create it and maximize it because of the great expense required BEFORE it's investment can generate a return justifying the investment that is needed to create it in the first place and must show reasonably presage a sufficient return or it won't be given (gambled) in the first place, because everybody has to eat and you can't eat dirt, you have create real food, so if you hand somebody a huge amount of money this is what it takes, you happen to have a reasonable promise of a return to justifies the investment (gamble with no guarantees), which may never pan out and therefore leave you hungry. Money is like your own blood in that regard. It's actually very hard to do, the money also does not grow on trees, unless somebody has to value it enough to give what they can produce an access and exchange for what they can get for that money that matters in their actual life, and that does not come from governments or fiat as much as it comes from the promise of getting that stuff back and then the experience of getting that stuff I exchange for money you give out for it when you give up that money to somebody else. In our situation or example here today that we are discussing, one very important tool which we didn't mention just yet, is Big Pharma companies buy up generic manufacturers because what they then can do is increase the price for generics until the generic is almost but not quite as high as the brand, because drawings apply the market will therefore bear it, and that is indeed what happens if you observe. You need to understand something about mercantile capitalism, that has in fact happened if you do a little studying, all about it is commonplace on the larger general principal of "catch and kill" or the principal of concentrating by controlling and limiting supply until then highest price that equilibriates supply and demand, that it is extremely flexible and brilliant and it's part of the Best of the Best March towards goal, which is not cure, it is maximizing long-term shareholder/investor {read large investment funds and corporations} profitability for shareholders, it's particular business happens to be in pharmaceuticals but is true about every business, and believe me, everything IS a business, even government...and there is plenty of experience that buying a competitor is also part of mercantile capitalism, because of your restrict supply your profitability goes up and that is one of the oldest principles in the book and it happens today because it works so well. So not only SMERSH, but SPECTRE too. CURE IS NOT PROFITABLE, WHILST DISEASE MANAGEMENT IS.
.
There's a perfect example I saw yet just today, about a product called Meibo, some other name in the UK and Australia New Zealand and Europe, helps keep eye moisture from evaporating, and is a "first in class" product (a fluorinated six fluorine hydrocarbon with a hexane I think), which I guess works by the very powerfully bonded fluorines keeping half of the otherwise hydrogenated carbons from dehydrating, about thus helping keeping dry eyes moisture from evaporating... kind of a teflon for your eyes when you think about it). Imagine putting Teflon in your eyes. In Australia the product is over the counter, thus also in New Zealand, much more socialized in their medical mercantile industries process, cost is about $34 NZ and €30 EU for a month... Whereas in the US is controlled by prescription, and the base cost is $1,237 US dollars (about 1170-1250 euros...wikipedia) for the same 1 month bottle, and no generics allowed... {But eventually when they are, in the US at least those generics will find eventual price to be about 90 % of brand...my observation of a couple of actual cases}.
🙂
youtu.be/E6c2iPBXVow?si=1S3...
goodreads.com/quotes/232221... 🙂
I think she needs to get out more...
You didn't watch the video, did you?
She is the most enlightened PD researcher I know of.
you're right. its 2 hours , i have seen several of her videos. i got turned off by the apostrophe pedantry. was there something specific? a time reference? I skimmed but kept getting turned off. I used to be a fan. I still find a lot helpful. but she earns a few bucks, and is very haphazard with science and the truth
for example - 35:45 glutathione. great. lets all take it. but its a placebo effect (source? Mischley L 2017 pubmed.ncbi.nlm.nih.gov/284...
it doesnt work. she proved it doesnt work. but continues to plug and supply it.
simpharmacy.com/collections...
I'll raise this with her and we'll see what she says.
Sure
But what was the point you were trying to make by posting the video? Which bit is relevant to the subject of this thread? Looks like the USA is going to get what you wanted, with RFK jnr I charge of health care. Fortunately pharmaceutical companies wanting to develop new treatments can licence with the EMA first instead .
Richard,
Please check your last post against the community guidelines. Please also get off your conspiracy bandwagon - something you raised yourself by referencing "Big Pharma's suppressed remedies" Most of us here have a serious condition that we are serious about treating.
Two questions :
Did broccoli seed tea help your non motor symptoms and have you considered that the reason your urinary urgency eased temporarily is because at the time you consumed a large amount of sulphur-rich food?
Yes. Fair point. Never tried broccoli tea or anything with sulplhurapphane. Urinary urgency change is permanent (well for now). Very familiar with placebo effects and coincidence
The bit that is relevant to this thread is it is a good thing to have researhers like her and Albert thinking outside the traditional pharmaceutical box since the traditional thinking/approach has done very little so far, except mask symptoms for a few hours at a time and often with side effects .
We heard different things in the video.
I heard her (humbly) emphasize that her ideas may not be best & I heard her describe PD as too multifacited, too complex to be cured by a single drug.
RFK Jr. is not what I wanted
No I appreciate that. Others looking for big Pharma bashing, and the like will view RFK as a champion. He is an advocate for the Big Pharma chronic illness exploitation theory. And he thinks out of the box on vaccines, ivermectin, hydroxychloroquine.
Thinking outside the box is maverick and exciting, but if its bad thinking, based on a selective understanding and no clinical evidence then it's not a good thing. Inside the PD research box there is enormous accumulated scientific understanding , and experience.
It's like climate change - and deniers , like Trump, who think outside the box. What that means is they dismiss and denigrate science and the consensus of trained, educated, experienced, and dedicated scientists and researchers. Experts - dismissed because its more attractive to blame someone, and find simple populist "out of the box" solutions.
Granted, Albert understands the science better than Trump, but not so well he can casually dismiss the establishment as fools, or worse, deliberate suppressors of knowledge which would alleviate chronic illness, because they seek to profit from its exploitation. Sackner-Bernstein syndrome.
And tell me, as someone with a serious condition, who is serious about treating it, which alternative remedies make a really big and consistent impact on PD? Probably the only "Out of the box" thinking I have encountered that has made a really chunky difference to my PD management is Peter Tass' gloves. (note correct use of Grocer's apostrophe, and avoidance of prepositions at the end of sentences. "That is something up with which I shall not put"). And Peter Tass' gloves have been developed inside the box - with much of the initial clinical experience coming from DBS - again, creative thinking inside the box.
Meantime, sinemet lets me ski black runs...
I agree with much of what you say, except it seems you are lumping all 'out of the box thinking' (OoTBT) together and portraying them as anti-science & anti evidence.
"... no clinical evidence then it's not a good thing." I am a believer in science and facts yet those of us pwp have little choice but to proceed acknowleging that while OoTBT can rarely rely on evidence, enough anecdotal experience makes many remedies worth trying, such as the (non-pharma) Tass gloves - which has no meaninful, real evidence (I don't know that we get to use the science of DBS as the "evidence" of the gloves) and is therefore OoTBT.
There are a number of other OoTBT remedies with no evidence, such as B1, Mucuna, Cinnamon, Fish Oil, Qi Gong, and yes, Sulforaphane, etc. and like all drugs, don't work well for everyone, but do work well for some. (Same with Tass's gloves.)
I am satisfied that if we took two, 65-year-old, identical twins with Parkinson’s, 5 years after diagnosis, where, with all other things being equal, one’s therapy was limited to pharmaceuticals and the other’s therapy was devoid of pharmaceuticals, but was a robust supplement regime which included good life style habits, exercise, and diet, of which supplements are really a part, most likely the supplemented person would be healthier and would have progressed less.
There are people on this forum who believe they are progressing slowly and some say they feel better now than before they were diagnosed. A few even say they have become virtually symptom-free. Some of those people follow a nondrug regimen only while some take prescription drugs and pursue alternative and complementary therapies, but none of those who say they have become virtually symptom-free follow a drug therapy only.
I think you are right. The right sort of out of the box thinking is a wonderful thing. The wrong sort disparages experts, for their knowledge and expertise, and/or their integrity. And the worst whines about "them" deliberately failing to cure chronic illness for profit. Whether it's "big pharmacy, Santa's elves, or the strictly come dancing judges, if there is a." them" there's a conspiracy theory and a sad potty self-pitier promoting itBut, thinking out of the box is a great thing. As for the gloves I would note Stamford are planning trials. And as for not working for everyone there is a lot of variation and misunderstanding by DIY glove makers.
You know the mantra "if sex is a pain in the arse, you're doing it wrong!"
At the risk of "and another thing" - you make a very good point about people experiencing benefits from their regimin, and that is never just a drug therapy alone.
That would include me. i could cite "off label" drugs like Doxazain, or exercise, turmeric, B vitamins, and of course , the gloves.
But i think the No1 "non drug" therapy is "attitude". Belief that you are doing something to take back control. I used to feel, look and behave better for a week after one of my trial infusions - even though the trial failed.
And if it makes an improvement I'll take a placebo effect every day of the week.
My original post was not intended to "tigger" (sorry WinnieThePooh) anyone or score points. It was to direct people to Albert, who virtually singlehandedly, developed a remedy that has done more to help ease my Parkinson's symptoms than any drug/remedy/diet/supplement. None of you can argue with this statement.
Much of my career was devoted to continuous improvement but a key part of CI is root cause analysis. If you don't know or aren't focused on root causes, then any improvement realised is a fluke. Albert's post above demonstrates a clear understanding of PD root causes and how the active ingredient in BST eases specific symptoms. Out interest, while I take the tea regularly, one person hasn't done for about 2 years but claims they are still seeing benefits.
To be fair, big Pharma does develop drugs to cure disease. But when it comes to PD they appear to treat it like a headache! ~60 years ago they developed a better Aspirin for PD called Carbolevadopa. Since then various agonists, slow release iterations etc have come along but they are still only temporarily dealing with the headache. The larger PD research organisations seem to follow the same model?
I was wrong regarding PD research funding. It is now up to >USD2 Billion. If 1% of this (USD20 Million) was diverted to the right parties, I firmly believe that there would be effective PD motor and non motor symptom reversing modalities available within 2 - 3 years.
These small research organisations tend to be staffed with people who have PD. Individuals who are not motivated by profits but continuously reminded by their symptoms that they are doing it to ease the misery of millions.
While I have some specific ideas as to how we might progress, I would rather leave it to y'all to have your say first...
And since I'm back on this thread talking about glutathione with Marc, note that it wasn't that the supplement failed to produce a significant improvement, it was that the placebo produced an equally big improvement. Take a look at the recent Buntanatep results for the same effect. Or dozens of other examples in PD research. So maybe your improvement was Albert - maybe it was placebo, maybe it was coincidence. Maybe it was something else at the same time. How can you be sure?
Albert's big non-motor symptoms when I chatted with him at Marc's Sunday group were fatigue and urinary urgency. As discussed with him, I suffered from both. Siestas helped manage the former. For the urinary urgency, probably in retrospect my earliest symptom, I had all the public toilets in the area I worked in my sat nav. I used to just make it to the first motorway services on the way to my Biogen trial participation at Toulouse. There were essential "yellow snow" laybys en route to the ski resort...
Last week , my wife and I were out for 11 hours and I didnt pee once. No brocolli tea. No specific drug or supplement. No idea frankly. But facts as stated.
If I could only find a doctor who could administer IV DMSO!
midwesterndoctor.com/p/dmso...
"In turn, this is what we find, and that much in the same way DMSO reverses many other complications of aging (e.g., skin issue, hair loss, poor organ function) IV DMSO is one of the most effective anti-aging therapies for the brain (along with ultraviolet blood irradiation or improving the physiologic zeta potential). Likewise, IV DMSO is one of the only therapies I know of which can help challenging neurological diseases Parkinson’s or ALS (where in both cases, while not curative, typically halts the progression of the disease). In turn, I periodically come across anecdotes of DMSO consuming centenarians who have no cognitive impairment despite their age."
I was reading this again. can you explain to me please Albert's route cause analysis? What is it that causes PD in me, but not the other 99 people in the village?
Albert, best you advise what you consider the root causes to be please, rather than me misquote you...
Try, if possible to keep it short. I am interested in the route cause. Why does PD start in 1 person in 100 but not the other 99
This is what I currently believe is happening.
Several things can contribute to DA neuron loss.
1) Age: we are born with more DA neurons than we need, but as we age we lose more and more. The cause is the oxidative stress (reactive oxygen species, free radicals) which are produced by mitochondria due to failure of the electron transport chain (ETC), esp Complex 1. These further damage mitochondria and the ETC, so it becomes a vicious circle. In healthy young people this is controlled by the Nrf2/ Keap1 pathway. Keap1 normally captures and destroys Nrf2, but harmful levels of ROS progressively inhibit Keap1 so newly synthesized Nrf2 are not captured and then binds to DNA antioxidant sequences which then release antioxidant enzymes to mop up excess ROS. The most important are cytoplasmic SOD1, a copper- and zinc-containing enzyme, and SOD2, a mitochondrial matrix enzyme that scavenges oxygen radicals produced by the electron transport chain in mitochondria ... As we get older we make less Nrf2 and more Keap1 which means that the Nrf2/ Keap1 pathway responds more slowly to excess ROS.
2) Exceptional events:
- Exposure to pesticides (esp Paraquat, made by ICI when I was a kid and we used loads of it, now banned in the UK, but still manufactured in the UK and sold to third world countries) ,
- Exposure to toxic substances (solvents such as trichloroethylene, CCL4 etc),
- Viral infections (Flu, Covid, herpes, ..), create periods of excessive ROS and neuron loss while they are active in our body.
3) Genetic mutations also cause damage to the ETC and speed up the excess ROS throughout life.
If we have too many genetic mutations or exceptional events then the rate of loss of DA neurons is excessive and we won't have enough DA neurons left for the brain to work properly before we die of some other cause, so PD shows up sooner or later. 1% but growing.
If we don't have too many genetic mutations or exceptional events then we will still have enough DA neurons left for the brain to work properly when we die of some other cause, so no PD. 99% and declining.
I try to explain the process in this article about reclassifying Parkinson's symptoms.
patientresearcher.com/2024/...
Thank you Albert.
But it doesn't answer the question, relating to PDKiwi's point regarding root cause analysis
"a key part of CI is root cause analysis. If you don't know or aren't focused on root causes, then any improvement realised is a fluke."
It doesn't answer the question "why does neuron damage due to oxidative stress" and the rest of the explanations you offer, affect the 1% who get Parkinsons Disease, and not the 99% who don't
Incidentally, my village is in the Languedoc, where there is a higher incidence of Parkinsons Disease associated with chemical pesticide use in the vineyards. We are a wine producing village of a population of 100. I am the only one with PD, and my PD developed before I came here. 4 families farm the vineyards which surround me and at least 8 of the 100 population spray the vineyards regularly with chemicals in open tractors with no protective clothing. Serge has been doing this for over 60 years and is in his late 70's - fit as a fiddle.
So - at it's most basic - CI root cause analysis - why does the disease occur in 1% of the population and not the other 99%?
Really I want an answer that is comprehensive, internally consistent, and in language I can use to explain to my mates in the pub, my Mum, and my kids. Not too many long words.
And that starts with a definition of Parkinsons Disease. There are many neurological disorders, that are not Parkinsons Disease. John Pepper, was a regular on this forum, who believed he had Parkinsons Disease, although an objective review of his (long) history of statements about his condition, suggest he probably had essential tremor.
Parkinsons Disease acquired it's name because of the enduring descriptions of James Parkinson in his "essay on the shaking palsey". But as Laurie Mischley pointed out, in the video Marc posted elsewhere in this thread - Parkinsons Disease can only currently be definitely diagnosed on post-mortem. And that diagnosis involves the presence of Lewy bodies in the dopamine neurons associated with motor symptoms. No lewy body - no Parkinsons Disease (so just one of hundreds of other neurological disorders).
Moreover, Lewy body formation is very much part of the disease process - and when post-mortem examinations of patients with PD who had received dopamine stem cell transplants at the turn of the milenium were carried out, lewy bodies were found forming in the transplanted cells, although the donor source did not have parkinsons disease, and would not have had lewy bodies.
So how do Lewy bodies fit into the description of the disease - and our root cause analysis? Feel free to chip in PDKiwi since you stated
" Albert's post above demonstrates a clear understanding of PD root causes"
which implies you too were able to understand and evaluate Alberts theory.
Now, I appreciate the following explanation uses long words, and isn't really up to the job of explaining to my mates in the pub, but how does this fit into the total picture?
"Animal models of PD suggest that activation of the Abelson tyrosine kinase (c-Abl) plays an essential role in the initiation and progression of α-synuclein pathology and neurodegeneration. These studies demonstrate that internalization of misfolded α-synuclein activates c-Abl, which phosphorylates α-synuclein and promotes α-synuclein pathology within the affected neurons. Additionally, c-Abl inactivates parkin, disrupting mitochondrial quality control and biogenesis, promoting neurodegeneration. Post-mortem studies of PD patients demonstrate increased levels of tyrosine phosphorylated α-synuclein, consistent with the activation of c-Abl in human disease. "
It doesn't specifically mention Lewy bodies in that section, but it is internally consistent with it . Trying to keep it short and sweet.
It is not impossible that one of the reasons "Conventional Science", "Big Pharma", "They", haven't been able to offer effective disease modification relief yet, is because understanding this disease properly is quite tricky...
A bit late to this post but very interesting read. What is apparent from the thread is how frustrated everyone is. The faith placed in pharmaceutical companies, and the millions raised by individuals often busting a gut, has got us pretty much no where. The five to ten year promise never gets any closer and the early optimism at diagnosis ebbs away and so naturally people are left to fend for themselves. What we are left with is self help and unscientific guessing, trial and error, quackery, snake oil, but mostly proposals by well meaning people.
Perhaps one day a clever individual working for nothing will come up with something special so I support a scattergun approach to research hoping that something will hit the target. What this community seems to be good at, is reviewing the ideas, examining the evidence and supporting those that appear credible and dismissing those that are not.
I agree, that's a good summary. I would slightly amend it to note that the dramatic increase in the incidence, and forecast incidence of PD, has increased the market size for Pharma, and resulted in significantly increased research funding and activity in this area. That is going to produce results eventually. It's basic sales training "turn over enough stones on the ground and you'll eventually find gold under one of them"
Ambroxol cough suppressant repurposed for slow down progression or hopefully stop PDKOYAH Organic Broccoli Sprout Powder 1 Scoop = 1/4 Cup Sprouts: 36 Servings, Freeze-dried, Tested for Active Myrosinase and Glucoraphanin
Visit to Parkinsons PhysiotherapistApparently, Art (easilly) has left HU.
RESTORE/MAGIC DIRT
