PART I.IF WE DON'T CHANGE THE WAY WE LOOK AT PARKINSON'S... WE WILL NEVER DEFEAT IT.

[parkinsonshereandnow]

"To see clearly, it is enough to see clearly, it is enough to change the direction of your gaze."

Antoine de Saint-Exupéry

"To see what is in front of our eyes requires constant effort."

George Orwell

"One always starts with the simple, then comes the complex, and thanks to a higher enlightenment one often returns in the end to the simple. That is the course of human intelligence".

Voltaire

Without seeing Parkinson's disease, treatments and the Parkinsonian world in new ways, it will never be possible to treat it in new ways, to find the way out of the "labyrinth".I know it may seem crazy to some (it would have seemed crazy to me years ago). But I have seen many times in these 30 years the results of the current path in the Parkinsonian labyrinth.First of all, it is necessary to stop seeing Parkinson's as "incurable". And stop believing that medicine has the last word, the solution. It has a lot to say, but it does not have the last word. The attitude of the patient and the family is very important. And to have access to all available information as soon as possible (ideally before diagnosis, but it would require media campaigns). I know hardly anyone who has been diagnosed with Parkinson's for ten, fifteen or more years who does not agree.This is a book of struggle, search and hope.The second and also essential thing is to search for and gather this valuable information. And in this search we must be respectful of the dominant scientific and medical establishment, but also disrespectful. Because if we do not question the existing, there is no improvement, no Science possible.And from the union of the "old" (Birkmayer, Karobath, Jellinger, Youdim, Fahn, Jenner, Shults, Beal...) and the "new" (Suzuki, Espay, Monti, Schaffner, Costantini, Fullard, Lama, Mischley, Heo...), a clearer vision will emerge that will allow us to solve the Parkinsonian "puzzle" very soon, both the original one and the one that adds the heavy burden of iatrogenesis (negative effects of drugs and other therapies). ..What is already happening in individual cases (from Annetta Freeman to John Coleman), could be extended to the vast majority of patients thanks to future official protocols (perhaps based on the knowledge of neurologists Birkmayer, Perlmutter, Coimbra or Costantini, or neuroscientists such as Phillipson or Hinz) and truly multidisciplinary teams. Without a nutritionist or a neurologist with a deep knowledge of nutrition (or well advised and helpful), there is not much else to do.It is no longer (or not much longer) a question of continuing to accumulate thousands and thousands of studies of fantastic scientific erudition, or of seeing how time and again the majority of researchers run into an invisible wall (that of the extreme complexity of Parkinson's when it comes to the cellular, molecular or genetic level).

Rather, it is about making decisions with what we already have, which seems to us to be enough to radically change Parkinson's as we know it today, for the sufferers: the only important thing. If I live to be 90 years old, I don't want everything to be more or less the same when I wake up any morning in the year 2060. I couldn't bear it. We will not allow it. It is our obligation. To improve the lives of today's Parkinson's sufferers and their families. And to end this explosion of cases worldwide, even among those under 30. There should be fewer and fewer sufferers and their lives should be fuller.We urgently need a new paradigm now, a 180-degree turnaround...Current Parkinson's research is a paradoxical enterprise, one of great knowledge and almost total failure, because the objective is not met and its achievement is postponed year after year: the lives of the sufferers I know have not improved in almost 30 years.The main key seems to me to be to turn our eyes to Nature, where the solution to Parkinson's awaits. The laboratory has to be an auxiliary of Nature, not try to replace it (this is the drama of the last 60 years of the fight against Parkinson's). Without vitamins and medicinal plants it is not possible to win this fight against Parkinson's disease.On the shelves of Nature there is almost everything we need.Moreover, Nature cannot be surpassed and cannot be patented. Melatonin, milk thistle or vitamin B12 are good examples.The aim of this section is to tear down, to demolish the artificial walls that have obscured the world of Parkinson's for too long. Or to put it another way, to open the windows, to open the curtains, to let in fresh air, sunlight. To stick one's head out of the window to see other places and to go back in to turn everything upside down, upside down if necessary... with respect, but also with determination.

[parkinsonshereandnow]

CHAPTER 1. THE AMAZING REVOLUTION IN WHICH WE LIVE...ALMOST WITHOUT REALISING IT YET.

"There is nothing more powerful than an idea whose time has come".

Victor Hugo

"The crisis occurs when the old has not yet died and the new has not the new has not yet been born".

Bertolt Brecht

"Revolutions take place in dead ends".

Bertolt Brecht

Difficult to perceive and overwhelming on paper: from the union of the old and the new comes hope. The best of the East with its incredible Ayurvedic or Chinese herbal formulas to treat Parkinson's together with the best of the West through brain scans, the growing role of various forms of physical exercise, of vitamins B1, B2, D3 and B12, as well as the combination of acetyl carnitine and alpha lipoic acid to restore the mitochondria.

We live at a time when everything seems covered in dark clouds and there is great darkness, but we also see rays of sunshine breaking through those same depressing clouds.We are on the edge of the precipice, but there is an accumulation of very important research and information, and changes that lead to hope where there seems to be no reason. It is there, but it is not easy to see it.It takes a lot of coincidences and causalities to pull back the veils. At least that is what has happened to me over the last 30 years.Brave neurologists have left us videos that have the virtue of breaking through the thick wall of current prejudices with a very powerful efficacy.This is not the simplification of every problem out of a fit of arrogance or ignorance, but the attentive compilation of what neurologists ahead of their time or contrary to the dominant discourse say, only in that sense they would be "dissidents" within the authentic orthodoxy, that of the search for the truth, such as Birkmayer, Shults, Coimbra, Perlmutter, Costantini, Fancellu, etc.I have learned more about what is definitive in unravelling the mystery of Parkinson's as a historian and digital journalist than as a son and caregiver.The testimonies, clues and evidence are abundant. Hundreds, perhaps thousands. Books, studies, articles, news... But the thick jungle does not let us see those trees.One of the paradoxes of the world of Parkinson's, not of the disease or its possible treatments, is that a real revolution is taking place and that it is so difficult to see because it is found in hundreds of studies that are not very accessible to the public and because it is almost buried by thousands and thousands of other studies and various news items, which in my opinion lead to greater complexity and, therefore, to increasing confusion (subtypes of Parkinson's, division between brain and enteric initiates, the role of alphasynuclein, etc.). What we are interested in "here and now" is what we already know works: antioxidants, anti-inflammatories, mitochondrial activators, reduction of the neurotoxic homocysteine, physical exercise... Be it drugs, supplements, herbal medicines, Indian and Chinese herbal formulas, medicinal mushrooms, therapies, etc. Like a swarm attacking Parkinson's until it becomes weaker and weaker... until it is expelled if possible or as far as possible.

[parkinsonshereandnow in reply to parkinsonshereandnow]

1. Evidence for this revolution.

In this book very radical statements are made which seem to be based only on the author's good wishes, but I can assure you that this is not the case.After the death of Oliver Sacks (the famous doctor in the movie "Awakenings"), there are two really famous neurologists left in the world: one orthodox, Stanley Fahn, who treated the boxer Muhammad Ali and the actor Michael J Fox; and one heterodox, David Perlmutter, the famous author of the most impressive videos in Parkinson's History showing the "miraculous" recovery of several patients almost unable to move and speak thanks to the use of intravenous glutathione (and strong doses of the main B vitamins that were part of the preparatory protocol, which would explain why glutathione has not been so effective in later studies). We should not forget the healing potency of Costantini's B1, Coimbra's B2, Birkmayer's NADH/B3, Christine and McCarter's B12, etc.).

We are talking about neurologists. I insist on this "detail". We are talking about another way of looking at Medicine and Neurology. This is part of the revolution... But not only David Perlmutter, but also the Brazilian neurology professor and neurologist Coimbra, the Italian neurologists Costantini and Fancellu, the Argentinean Villafañe with the nicotine patches until they closed his practice at the Henri Mondor Hospital in Paris, and a very long etcetera. Wise men who have passed away, such as the great Walter Birkmayer, other younger ones who move on the frontiers of what we know, such as Borah, Aoyama, Mischley, Espay, Villafañe, Monti...It is a mystery how a real revolution can have developed in the last decade on the role of scientific studies and how almost nothing has reached the majority of patients and their families or the clinical practice in the daily private and public consultations of neurologists.Some examples are:Alberts (2011), forced physical exercise on a bicycle (in tandem with a healthy person), produces a physical benefit of 35-40 %, like a dose of levodopa;Suzuki (2013), vitamin D3 can slow the disease (at 1200 IU daily for one year, UPDRS scale);Phillipson (2013), with a combination of supplements and regular medication one patient got his symptoms under control;Schaffner (2019), vitamin B12 is able to silence (epigenetically) the main gene of so-called familial or genetic Parkinson's: LRRK2.Monti (2019), with the use of oral and parenteral NAC (N-acetylcysteine), a precursor of vital and scarce glutathione in Parkinson's patients, increases dopamine receptors and significantly improves motor symptoms;Fullard (2020), vitamin D3 affects and ameliorates almost everything in Parkinson's disease. In 20 minutes on the beach, the body synthesises between 10,000 and 25,000 IU of vitamin D3.

[parkinsonshereandnow in reply to parkinsonshereandnow]

2. The revolution in the world of Parkinson's.

I write this simply as my father's son and carer until his death in 2012. Since then as a searcher and disseminator of everything I "rediscover" in books and study databases, thanks to Google and Pubmed.The first alarm signal was when I found a specialised manual on dyskinesias in Parkinson's and it did not even mention pyridoxine or vitamin B6, despite the studies by Sandyk 1990 or Lerner 2007 and 2015, etc. An article by Chilean neurologists Juri and Chaa in 2006 put me on the track. I don't even mention nicotine or melatonin.You can see that this is orthodoxy, but orthodoxy that has been forgotten or marginalised.But it was also happening to me on the CAM (complementary and alternative medicine) side. One of the most famous books on food and health did not even mention Parkinson's (or Alzheimer's either). And when my father was still alive, we desperately consulted an expert in alternative medicines (it would be 2010) and he confessed to us with great honesty that he knew very little, that there was hardly anything. He recommended alpha lipoic acid and a type of spinal massage.When one visits many sites on the internet on both sides, confusion increases, because strange therapies abound, very difficult to carry out and generally very expensive.

Not a word about homocysteine, vitamin C (essential for tyrosine, carnitine, to enter the brain as its oxidised form and to be brought back to life (as an antioxidant) by glutathione or NADH, to recycle glutathione, to activate B9 against homocysteine, etc. ), NAC as a way to raise glutathione (which plummets to a catastrophic 2 % in the most advanced stage of the disease), milk thistle to help the overburdened liver in those sick from medication.

[parkinsonshereandnow in reply to parkinsonshereandnow]

3. The end of Parkinson's as we have seen it so far.

And the revolution we have been living through for some years now is reflected in very hopeful changes, some of which have already been mentioned:- adult neurogenesis is possible (between Ramón y Cajal's Nobel publication in 1928 and Erikson's study in 1998, adult neurogenesis was thought to be impossible).- GABA could be as important as dopamine in Parkinson's disease (Sabatini 2012, Sulzer 2015). The*** same enzyme that transforms dopa into dopamine transforms tryptophan into serotonin or GABA.- Epigenetics comes to rescue us from the fear of genes, from the heavy burden of genetics. Genes do not have the last word. Vitamin B12 controls the main gene for hereditary Parkinson's, LRRK2 (Schaffner 2019). Vitamin D acts on more than 2000 genes known so far, magnesium is so important in gene regulation that Piovesan speaks of a "magnesome". We should not forget the pioneering twin studies by Tanner and Maher, both in 2002...- the neurons of the "sustantina nigra pars compacta" (SNpc) that we thought were dead, could be largely dormant or "deactivated" (Heo 2020);- dangerous homocysteine, elevated in Parkinson's patients and more so in those taking levodopa, could trigger alpha-synuclein aberration (Enomoto 2019);- a different vision is advanced with the use of nutraceuticals to "starve" Parkinson's (Lama 2020);We already know enough about the disease (although much needs to be clarified and more studies are needed) and about treatments (a synthetic levodopa could be used, adding the compounds that make Mucuna pruriens infinitely superior; or Mucuna with carbidopa or benserazide, together with new MAO inhibitors of plant origin; studies on nutrition, vitamins such as the forgotten B1, B2 and B3, which seem to be marginalised). What holds the Parkinson's world back is the way the Parkinson's world itself has developed in recent decades. Its dimensions, the economic interests at stake (patents, profits, careers) are factors that can distort the free action of research towards curing the disease. Most of the time unconsciously, dragged along by the mainstream.The challenge is not easy.

[JayPwP in reply to parkinsonshereandnow]

So do you advise taking Vitamin C, NAC or GlyNAC, Vitamin D3 and Magnesium?

I know that these are generally recommended for PD, but so are hundreds of other compounds.

One lifetime isn't long enough to try and then incorporate a myriad list of substances ranging from chemicals to bacteria.

[parkinsonshereandnow in reply to JayPwP]

I think the different layers of a possible “protocol” could be:- a diet around Mediterranean, reinforced with oriental treasures;

- physical exercise

- 5-10 supplements (sublingual vitamin B12, magnesium, mild B complex, around 10,000 IU of D3, source of liposomal glutathione, milk thistle...), reduced by foods very rich in:

Selenium: Brazil nuts

Zinc: Pumpkin seeds

Vitamin B6: pistachios

Turmeric, green tea, ginger....

That's honestly what I would take if I had Parkinson's or recommend to my father if he were still alive. Asking the doctor and pharmacist for advice, especially in case of other ailments.

[Pixelpixie in reply to parkinsonshereandnow]

Can you point me to more information about B12 & LRRK2?

[parkinsonshereandnow in reply to Pixelpixie]

In my opinion, one of the most reliable and complete sources may be this one from Mount Sinai. I am looking for the section of my book dedicated to vitamin B12 and as soon as possible I will publish it here.mountsinai.org/about/newsro...

[parkinsonshereandnow in reply to Pixelpixie]

Vitamin B12 or cobalamin could be a very important key against Parkinson's disease. It is one of the substances that has brought the most reality and hope to the Parkinson's world through studies published in the last decade, although it is still almost ignored in forums and chats dealing with the disease.

In the last few years there has been a real revolution within the general one I claim we live in that is hard to see. That revolution nested within the other is that of vitamin B12.

Far more important than the extraordinary benefits of taking enough vitamin B12 is not being deficient in it.A low level of vitamin B12 is common in the general population and also in Parkinson's patients.A high level reduces the risk of developing Parkinson's disease.

Epigenetics. Schaffner's 2019 study has changed everything.

Vitamin B12 is able to regulate, to silence the most frequent gene in the so-called familial or hereditary Parkinson's: LRRK2.So important is the issue that it is worth consulting a specialist about the possibility of using the intramuscular or sublingual route (safer in terms of possible allergic reactions). Another groundbreaking study showed that vitamin B12 influences the future risk of dementia. People who did not develop dementia had significantly higher vitamin B12 levels when they were diagnosed than those who did (648.5 vs. 452 ng/L). A vitamin B12 level of 500 ng/L was associated with a 69% reduced risk of dementia compared to 400 ng/L (McCarter 2020).

Nori seaweed, vitamin B12 safe for vegetarians.

Vitamin B12 is normally bound to animal protein sources. There is one exception that has vitamin B12 that is as biologically active as that of animal origin: nori (a seaweed commonly found in Japanese cuisine), which is said to have as much vitamin B12 as beef liver (Croft 2005), between 55-59 mcg/100 g of dried product. It also contains all 5 forms of B12.

Functions include:

essential for maintaining a healthy nervous system; for the metabolism of proteins, fats and carbohydrates; essential for mood; necessary for DNA synthesis; helps maintain the myelin sheath of nerves.

Deficiency symptoms include:

high levels of homocysteine, a neurotoxic amino acid; several studies highlight the ability of vitamin B12 deficiency to "mimic" or resemble numerous diseases, including Parkinson's symptoms; numerous mental disorders: memory loss, confusion, mental fatigue, depression, sleep disturbances, mania, nervousness, dementia in the elderly, etc.; as well as pain, weakness, tingling and numbness in the extremities.

(Part of chapter 19, "Each and every vitamin of the B group").

[crewmanwhite]

Well said. And one of the most important new ways to look at Parkinson's is tio look more closely at the causes.

Let's stop treating symptoms (i.e. "Parkinson's") and start treating/reversing the causes - trauma, toxic load, infections.

Then we can see millions of PwP becoming well.

[india245]

thank you for sharing your thoughts. I resonate very much with what you say, and I appreciate you taking the time to put your information here 🙏🏻

[Diamonds3]

Fantastic !! Very well written and full of indisputable information. I am on your team 1000% I have been investigating natural remedies since the day after I was diagnosed. You were very poetic and polite in your essay, but lets face the fact that medicine has spent billions off $$ and 60 years looking for the cure with very little to show for it. Thank you for having the courage and motivation to write this essay.

[jacksmar]

Well there it is. All the useless information in one thread. Did you watch Awakenings? Did you see the guy say, “I feel swindled.” That doesn’t nearly cover the POed I generate on a daily basis. The very thought of someone scrapping up after me because I’m lucky to have made it to 80yo abhors me. I’m not indolent, my air intake doesn’t satisfy me to supplant what I’ve lost over 15 years.

Farm raised sharks fin placenta from the manure fields of Constantinople, vitamins, diet, and exercise don’t work. It’s pixie dust in a world filled with hope. You still have Parkinson’s after you’ve stretched and swallowed.

If you take away HIV, heart disease, breast cancer, ALS, MS and anything else that makes you shake or limp you would still have MJF and Ali with Parkinson’s. It’s simple what to look at for a cure(4D Pharma): to cure a brain failure you need a brain that can’t be ruptured. That’s cause/source prevention. The cure is to remove and replace the rupture. In the IT BIZ, you don’t replace a computer with an old computer. The speed of the memory in an old computer doesn’t react to the speed of the CPU properly. Black and white. Good enough is a step down, satisfactory.

That’s why I don’t complain. I’m stuck and POed; my problem. I don’t “share” my journey(Neal Schon is a guitar god) because I don’t play well with others. FIX IT. Get on with it.

BTW: I went to my 1st Parkinson’s convention in Louisville. I went to the mens room and looked to my right and left when MJF and Ali were suddenly on either side. I told my wife you won’t believe it; I picked a terrible day to wear sandals.

[Gymsack in reply to jacksmar]

"I told my wife you won’t believe it; I picked a terrible day to wear sandals."

That is the funniest thing I have read on this forum ever, NEVER TALK TO THE MAN BESIDE YOU, Thanks, may they both rest in peace. I know what you are going through, 77 (maybe 78) years old, diagnosed 20 years ago . I will take advantage of the M.A.I.D. in the fall just need to give 3 months notice. I hope you can continue to contribute and take my place as the grumpy curmudgeon , God knows they need it.

GymBag

[JayPwP in reply to Gymsack]

Why? Is it that bad?

[Gymsack in reply to JayPwP]

It is not a nice walk in the park , even with your wheeled walker, and your back brace and the prism eyeglasses and the medication and the cannabis ointment and the pain pills and the help from your family. I know 3 or 4 who took the option but our PD may be different from your PD.

[jeeves19]

I bought your book and followed the suggestions and protocol. I continued to degenerate. I think that this disease is multi-sited and multi-organ involved and virtually incurable. 🤔😕

[parkinsonshereandnow in reply to jeeves19]

I am very sorry. Parkinson's is like the mythological Hydra. With a thousand heads. My father could hardly benefit because we learned late and he was afraid of the changes.Despite publishing little, I have not stopped reading and studying since the 2021 book.

I know sick people who have been able to recover much of the essential acts of life, including walking and caring for their plants.

The key remains prevention and treatment before starting medication. But most of us resort to the “alternative” when the years of iatrogenesis are many and the deficiencies are very important.

We know the negative effects of levodopa. But very little of carbidopa and entacapone.

I just know many paths in the same integrative direction and that is the one I follow.

[parkinsonshereandnow in reply to jeeves19]

When I write, I also think about not worsening or scaring sick people and their families. All the major adverse effects of medicines and so on and so forth...Why isn't a standardized form of Mucuna already used (perhaps with B6 and zinc), why aren't foods controlled to prohibit neurotoxic sweeteners or flavor enhancers, why aren't additives like thimerosal or formaldehyde banned in vaccines, or the use of aluminum, fluoride or pesticides that damage the central nervous and enteric systems reduced by law?

For various reasons I do not have enough time to delve into the immense deterioration of the blue nucleus of the brain (before and more than the “Sustantia Nigra”), producer of noradrenaline and related to fear, stress, depression, insomnia ....

And a long etcetera.

I will find the necessary time.

[Gymsack]

Anyone who writes that he has the answer ( and many do ) will find the response much more angry and unappreciative than he expected. Frustration is heavily born by the victims of PD and anger is constantly under the surface barely under control.

I am 77 years old and have had Parkinson's diagnosed for 20 plus years. I have witnessed a tremendous amount of change in how PD is viewed and treated in that time and I strongly believe that much of that change has been due to what has been written here and in other fraternal web sites with forums that people with Parkinson's and their caregivers have used to share their experiences .

Twenty years ago, Parkinson's was a movement disorder and the experts were Neurologists that specialized and were called Movement Disorder Specialists. They were educated using out of date text books and out of date professors. A revolt occurred when the angry mob of the long suffering with first hand experience that previously had been ignored suddenly gained a common voice and rejected the status quo.

Movement may be the least important symptom and the complaints of PWP , vision, constipation , body distortion , muscle deformation, cramping, stress , depression , falling. slow thinking, short term memory loss sense of smell etc are the direct effect of Parkinson's .

Young recently graduated doctors understand this . There are neurologists who have 3000 to 5000 patients . If they give each one a 15 minute appointment either in their office or via a television computer link . That only allows in an 8 hour day 32 people to be seen and you see that the numbers do not work. The doctor has little time to review "Trade Papers " or the latest texts or attend conventions .

My first neurologist that diagnosed me said "some day, what we know as Parkinsons will be 20 or more diseases in the family Parkinsons all with slightly different symptoms and causes" We may find the causes, or it is possible that we may not. We may find instead better treatments or we may not. We may find the reason why the incidence of PD is increasing all over the world and skyrocketing in the USA and Europe and why Women are such a small portion of the people with it.

A word to anyone that believes he knows what the world should do and how to cure or treat all the PD or prevent its growth, you dont understand the complexity. Personally I believe PD is the reaction by the body of too much stress, and if correct I see little opportunity to prevent it without a complete change in the western philosophy of what is important and what is not or a method of medically identifying and reducing stress in real time . If that is correct then I believe that the rate of growth of the incidence of Pa rkinsons will continue to grow. Grains of wheat on a chess or checker board .

GymBag

[rodov in reply to Gymsack]

You are reading my mind!

Mixed emotions,

1) glad to hear you are still strong 20 years after diagnosis as I am only 5 years after mine.

2) I’m pessimistic the status quo will exist until big-pharma discovers a treatment protocol/cure that coincides with a patent in which it can profit.

[jeeves19 in reply to rodov]

He said he’s had PD for 20 years. Didn’t say he was strong 💪 along with it!

[rodov in reply to jeeves19]

It’s my opinion that if one manages this condition for 20 years they are strong, mentally if not physically! Sorry if that confused some people.

[jeeves19 in reply to rodov]

Oh he’s tough alright, I’ll give you that. 😂

[jeeves19]

Thank you for your repost. I do hope that others will benefit from your observations.

[LivSimple]

thank you! I just joined this site and it was because I read this.

My 73 year old husband was diagnosed with PD 3 years ago. I had been noticing changes for 6 years prior. We DID see a functional medicine Dr for the diagnosis but then he moved and we can’t find anyone else that fits our lifestyle so his “dr” is my daughter who is a holistic health practitioner and medical intuitive. We have used supplements, herbs, homeopathy, flower essences and nutrition which has kept most outward symptoms and some of the internal symptoms in check.

Unfortunately, there has been enough of a decline in the last few months that his body doesn’t seem to be up-taking the natural “meds” we’ve been using. I don’t think his body’s nervous system can utilize them anymore.

Any suggestions for this next phase? Cognition and balance are the worst issues right now.

Thank you for your words!