Chapter 17. I dream of the revolution tha... - Cure Parkinson's

Cure Parkinson's

25,339 members26,641 posts

Chapter 17. I dream of the revolution that must come... 2/2.

parkinsonshereandnow profile image

This is chapter 17 of a book I published in 2015, "A Different Way of Looking at Parkinson's. Almost 20 years of experience with my father's disease (1994-2012)" (only in Spanish). Although we have learned a lot more since that year, I think it can still be useful to most sufferers and family members. And with that intention I have translated it from the original Spanish to English and share it with everyone.

I ask you to excuse any possible errors in the translation.

---

CHAPTER 17.

I DREAM OF THE REVOLUTION THAT MUST COME, OF A WORLD WITHOUT PARKINSON'S.

(continuation of part one)

17.3. The paradox about Parkinson's in the 21st century, between the puzzle and the labyrinth.

"Every day we know more and understand less".

Albert Einstein

When the situation becomes so complex, as is the case with Parkinson's disease, it may be necessary to resort to metaphors to better understand the current situation in the world of Parkinson's disease.

The disease appears to the eyes of researchers and physicians like a gigantic puzzle that is alive, whose pieces increase in number and decrease in size, some that we had already in place fade away and others seem to find their place. But the overall picture remains mysterious and distant, too blurred to find a cure.

Will the human being be able to "manufacture" a drug, a therapy, that can restore health in something as complex as Parkinson's? Will he be able to discover the errors and correct them?

And the disease itself appears to the eyes of the patients as a labyrinth, which begins on the day of diagnosis and whose path - which seems to be marked on the ground - is almost always the same and appears day by day as a self-fulfilling prophecy, with the certainty that it still does not lead to any exit. In this inner and outer labyrinth, we find ourselves lost and anguished, both patients and their families and caregivers.

Will the human being and the society to which he belongs and which he helps to form, be able to change a way of life that is contrary to natural laws and which is at the root of (almost) all his illnesses?

From the experience that my father and I accumulated, as well as from the experience shared by other patients and caregivers, as well as from what we read in books, magazines and forums or databases on the Internet, we know, we sense, that it will only be possible to complete the puzzle and find the way out of the labyrinth thanks to a change of mentality in all the components of what we call the "Parkinson's universe" (the "bubble"), which, like all "micro-universes", remains almost unknown to most of society, except for those who feel a special interest in the disease, whether for professional, vocational or personal reasons.

Are we facing a model, an exhausted paradigm?

I remember talking and discussing this with my father on many occasions. About whether this whole web of research, interests, altruism, vocations, professions, intuitions, fears, which is also Parkinson's, was at a dead end.

If the almost 19th and early 20th century model of disease was ineffective in dealing with one as "proteinaceous" as Parkinson's (proteinaceous in a triple sense: by its nature with a thousand forms, by the possible relationship with the lack of certain amino acids and by the existence of protein aberrations such as alpha-synuclein).

At first glance it might seem that the advances are many and important, that we are on the verge of solving the enigma of Parkinson's, but on reading the specialized literature and reviewing the news of the last decades we understood that it was an illusion, a mirage that moved year by year, decade by decade. Those who face the problem for the first time, without experience and without sufficient information, do not understand what it is, as it happened to us. We did not see in this any malice or conspiracy of economic interests, but the result of the struggle against a thousand-headed Hydra, Parkinson's, which like the mythological monster creates two heads where one is cut off.

Despite all the means employed, when studying the history of Parkinson's disease in Western medicine since James Parkinson wrote his famous treatise in 1817, the question arose as to whether the path or paths taken by research and the dominant treatments could not be other than the current one. As examples, using Mucuna pruriens as a source of levodopa; accompanying levodopa with supplements to reduce its side effects (vitamin C, B3, B9 and B12 sublingual, silymarin, etc.); delaying medication as much as possible, trying to favor the natural synthesis of dopamine, through food or supplements with all the nutrients that newly diagnosed patients lack and which are essential for the synthesis of dopamine, etc.

Some changes of direction, some doubts and hypotheses "whispered" by doctors and neurologists all over the world, point to question some of our scarce knowledge, and maybe this is due to my too simple view on Parkinson's. I am not sure.

The two Neurologies we saw: the official one and the one that was not yet official.

Over the years we have come to perceive (whether real or not) two parallel worlds in the field of Medicine and, therefore, also in the field of Neurology. The border between these two worlds is sometimes clear, sometimes confusing: they share medical journals, laboratories in Hospitals and Universities, and nevertheless, only the first one usually reaches the consultations and is the only one that patients and their families usually know.

The purpose of this opinion is didactic, to facilitate the explanation and understanding of this pressing problem.

One, that of accepted clinical practice, which is taught in the Faculties and used in public and private practices.

And then there is another, which is also Medicine, which is also Neurology and which is also Science, which "sleeps" published in medical journals and which, dispersed, atomized, awaits its moment to be able to benefit the sick. The laboratories of hospitals, universities and other research centers continue to knock on the door, inviting us to initiate a change of mentality, of paradigm. At least this is the conclusion I draw from everything I have experienced and learned in these years.

But it seems that the accumulation of thousands of indications and evidences (studies of varying scientific value) is not enough. What is needed? A change of mentality so that the disease is faced in a truly global, holistic, multidisciplinary way?

An Integrative Medicine, led by Neurology, but assisted by Psychology, Nutrition, Gastroenterology, Psychoneuroimmunology.

It seems as if each patient, each family, lives their suffering alone: the trauma of the diagnosis, begins to understand some things, but the disease progresses faster than the change of mentality and the willingness to change life, the side effects, the heavy burden of harmful habits and difficult to change, the aggravation of old and new symptoms, the hard final stage.

That intimate and familiar hell, in which, sometimes, the death of the loved one is seen as a relief, creating a guilty feeling in family members and caregivers.

---

17.4. The dream of a truly holistic protocol.

"It is he who cures who is right..... Where one method is inoperative,

For every evil there is a remedy!....

It is our responsibility, doctors, to discover it!".

Vladimir Petrovitch Filatov, Russian surgeon and ophthalmologist.

I have a recurring dream. The hope of an early cure of the disease that would be accomplished, to a large extent, by reversing the process by which it has come to develop, in the case of each individual patient, and by looking back to the recent and remote past, in the case of researchers to rediscover what has fallen by the wayside of the prevailing scientific currents of each era, as genetics is now and viruses or mitochondria were yesterday.

Taking advantage of the means available thanks to the Internet, the advances in neurosciences and opening official medicine to complementary and alternative medicines. A multidisciplinary team led by the knowledge and experience of a neurologist with an open mind and concern for any aspect that could contribute to healing and that was not dangerous or incompatible with the central treatments.

An internist, a gastroenterologist, an endocrinologist, a psychologist, medical experts in nutrition - nutrigenomics, in orthomolecular medicine (nutrient supplements in large doses, even intravenously such as Dr. Perlmutter's Glutathione or Dr. Birkmayer's NADH, as some megadoses of vitamins have been used in medicine to cure beriberi or pellagra) and in phytotherapy - pharmacognosy?

The protocols proposed by Dr. Jean Seignalet in his book "Nutrition, the third medicine" or by Dr. Heinrich Kremer to treat mitochondrial diseases, could help to outline this protocol that escapes my knowledge and that I only dare to outline, in a general way, as something that I would do for myself or that I would have prepared for my father.

A general protocol rich in food groups, supplements or plants that indicate the numerous studies available: intravenous glutathione, a cocktail with all the B vitamins, amino acids, important supplements of omega 3 EPA and DHA with vitamin D, etc.. Together with sports, acupuncture, sun baths, music therapy, homeopathy, thalassotherapy, etc.

Or an individualized protocol adapted to the special circumstances of each patient (for example, if the parkinsonism is suspected to have a psychogenic origin, caused by occupational exposure to manganese or by a drug that produces or aggravates parkinsonism, such as neuroleptics, calcium antagonists, etc.).

The first ninety pages of Dr. Hurni's doctoral thesis and numerous paragraphs and pages of Dr. Gonzalez Maldonado's books, I believe, provide the keys to solve many problems posed by Parkinson's disease today. I find the digital article of "LifeExtension" on Parkinson's disease very interesting.

---

17.5. Hypotheses and speculations.

Those ideas that crossed my father's and my mind and that we talked about in endless conversations, have become reality as we have discovered hundreds of studies that affect almost every vitamin, mineral and trace element, phytonutrient, bacteria of the intestinal flora, sport, music, laughter... and their unsuspected effects on internal or endogenous (melatonin, superoxide dismutase) and external or exogenous neurotransmitters and antioxidants (melatonin, superoxide dismutase). ... and their unsuspected effects on internal or endogenous (melatonin, superoxide dismutase) and external or exogenous (glutathione, lipoic acid, vitamins C and E, D, etc.) neurotransmitters and antioxidants.

For a long time we went blindly through the parkinsonian labyrinth.

In the last year of my father's life and in the following three and a half years that it has taken me to put this book together, things have become much simpler and clearer.

Some neurologists and other scientists, more or less recognized in the official world, have argued the character of Parkinson's as a syndrome rather than as a single disease per se. Numerous deficiencies also appear in the general population that are exacerbated among Parkinson's patients, some already associated with an increased risk of developing the disease: zinc, magnesium, vitamin D, vitamin B3, vitamin K, etc., possibly causing disorders of their own or leaving the brain and essential organs defenseless against internal and external toxins.

Two questions were gaining momentum from the endless readings and conversations:

Does Parkinson's have a strong multiple deficiencies or subclinical component?

We found it interesting that the symptoms of vitamin B1 (beriberi) and B3 (pellagra) deficiency diseases so closely resemble numerous Parkinsonian symptoms. And that the functions of the B vitamins, on each of which there are more than revealing studies, and the deficiency and subclinical symptoms of all of them together, so closely resembled those of Parkinson's disease.

The articles by Paris M. Kidd (Parkinson's Disease as Multifactorial Oxidative Neurodegeneration: Implications for Integrative Management, 2000), by Walter Last (Parkinson's disease. A Holistic Therapy, 2011), by Hans R. Larsen (Parkinson's Disease: Is Victory in Sight?, 1997) or by Ward Dean and Steven Fowkes (Mitochondrial Nutrition, Aging and Cognition, 1996), helped us to see things differently.

Was the evolutionary protection of the "sustantia nigra" left to nutrients?

It seems possible that in the same way that humans lost during evolution the ability to produce vitamin C in the liver from glucose (with the danger of scurvy or subclinical deficiency) and, according to some experts such as Dr. Abram Hoffer and Professor. Abram Hoffer and Professor Harold Foster, would be losing the ability to produce vitamin B3 or niacin from tryptophan (with the possible helplessness to neurological diseases), the protection of sustantia nigra would be left - due to the evolutionary process - in the hands of fatty acids, in the hands of omega-3 fatty acids, vitamin D, melatonin, SOD (superoxide dismutase), amino acids, all the vitamins of the B group, antioxidants dependent on zinc or selenium, glutathione, neuromelanin, coenzyme Q10, etc. In other words, the possible evolutionary weak point of the brain would have been left in the hands of nutrients, of the liver for its blood purifying function and, as a final defense, of the blood-brain barrier (so dependent on collagen, vitamin C and flavonoids).

Neurologist Dr. David Perlmutter's intravenous glutathione and neurologist Dr. Walther Birkmayer's intravenous NADH (a form of vitamin B3) have "miraculous" effects on patients with many years of Parkinson's disease and medication. The videos of these cases had a great impact on my father and prompted us to search. It is no coincidence that magnesium, for example, necessary for more than 300 metabolic reactions and directly related to the production of dopamine and other neurotransmitters, is known as the "anti-stress" mineral. It is also essential for the correct assimilation of vitamin B6 (essential for converting dopa into dopamine).

What is true for history is often true for other issues as well. When a problem seems to have no solution, we must delve into the past, as difficult as the problem is. And with Parkinson's it also worked.

The current "dogmas" of Parkinson's disease (damage in the "substantia nigra", lack of dopamine and treatment with levodopa to compensate for it, etc. ), are seen differently in the light of the History of this disease or syndrome in the last 200 years, published in medical journals and in the books of neurologists, both of the most orthodox like Jean Marie Charcot and of other more strange ones like Walther Birkmayer, totally orthodox first - so much so that he was one of the "fathers" of levodopa - and, later, the main "heretic" on Parkinson's disease years later, when he proposed NADH. ... at least, these are the conclusions my father and I came to after 18 years of diagnosed disease.

I think we know much more than we believe and dogmas in Science are short-lived (only 80 years, Ramón y Cajal's dogma that the number of neurons is reduced by their death, without remedy, inexorably, without the brain being able to create new ones: neurogenesis). But the majority continues to believe that this is so, so perhaps it is so for many brains?

Intuition, mystery, humility, common sense, love, myth or metaphor to explain what we do not really understand and is hidden behind a complex language, in short, applying thought, the scientific method to Science and Medicine...

All this will lead one day to the "revolution" that has to come, that is waiting at the gates.

I hope to see very soon... a world without Parkinson's disease.

END OF CHAPTER 17

Part One

healthunlocked.com/cure-par...

Written by
parkinsonshereandnow profile image
parkinsonshereandnow
To view profiles and participate in discussions please or .
Read more about...
4 Replies
MBAnderson profile image
MBAnderson

I'm in the process of going back and reading all your threads here (on HU) which I spent the past 2 hours doing, so I'm about halfway through and I must say it is some of the more interesting content I've read about Parkinson's. When I'm done with your threads here, I'm gonna start on your blog posts.

Between all your threads, you name virtually every vitamin (and many supplements) as though each is critically important. I'm assuming and hoping that someplace you have a cogent statement of a formula or recipe that one should follow. If not, the conclusion I would draw from what I've read so far is that your approach is similar to Dr. Dale Bredeson, whose name I have not yet run across (or, Dr. Michley's -- who I am sure you know is to Parkinson's what Bredeson is to Alzheimer's "... The roof is leaking from 15 holes and our job is to patch every 1 of them..."

I, of course, don't know if this philosophy cures Parkinson's or if you think it does or just makes the best of a bad situation.

Anyway, thank you for posting all this. It's a good read. (I cannot find in English language version of your book.)

parkinsonshereandnow profile image
parkinsonshereandnow in reply to MBAnderson

Thank you for your interest and your words.

When my father asked me to promise him "that I would not leave Parkinson's patients alone" (verbatim) and I remember it, it leaves me cold what he had already understood about the world of Parkinson's and had not told me....

Since then I began to gather the information that I would have liked to know when my father was still alive and I discovered obvious things, but that it took us a long time to really understand (in the midst of the jungle of information, news, etc.), that Parkinson's was a defeat of the neuroprotective mechanisms against an aggressive and neurodegenerative environment, with nuances in each person. For me, Parkinsonism due to MPTP, glutamate or rotenone is a facet of the more complex whole that we call idiopathic "Parkinson's disease".

In origin, it is possibly the progressive reduction of melatonin over the years, which also regulates glutathione (and that none of the other protective substances with sufficient presence to repair that weakness: green tea, coffee (phytomelatonin, similarity to iron chelators, BBB vasoconstrictor; resveratrol; curry; physical exercise; outdoor exposure and vitamin D3, etc, etc. ) against an excess of dopamine and its metabolites (6-OHDA) -perhaps not only its synthesis is reduced but also the ability to eliminate its neurotoxic residues increased with L-dopa and carbidopa treatment-, due to genetic aspects, history of occupational exposure, glutamate-producing stress and magnesium consumer; excess of iron (lack of B1?), aluminum (lack of magnesium?), etc.

All this complexity of multiple factors and deficiencies could be simplified (with all the risks of simplistic interpretation for those who start on this path of the disease) in a melatonin-glutathione antagonism against endogenous dopamine and exogenous treatment?

The key would be to oppose factors responsible for neuroprotection and neuroplasticity (green tea, turmeric, plants, etc.), as was done or recommended by the protocols I know: Annetta Freeman, Marty Hinz, etc., which are characterized by having to be adaptable to each case.

I have not yet studied the Costantini and Coimbra protocols in depth.

I'm not saying that I have, as I learn every day and strive to be completely open-minded. I know there are thousands who know a hell of a lot more than I do, but I have a promise to keep and I will not give up.

Chapter 17 answers what I knew in 2015. Since then I have learned many: Hoffer, Costantini, Coimbra, Fullard, Borah, Aoyama, but mostly in 2020 and I have not yet been able to assimilate.

I want to interview many: Fowkes, Espay, Borah, etc. I would have given a lot to be able to do it with Walther Birkmayer or Abram Hoffer. I lack time and means.

I have to assimilate Bredesen, but Del Rio Hortega in the 30's, Snowdon, McGeer and many others said it before: Alzheimer's is brutal neuroinflammation. Plaques and tangles are remnants, not causes.

I am not a scientist but a historian, and I have a hard time understanding certain studies. I look for others who interpret them in books or explain them in later studies by way of summary....

The 2015 book is not translated into English. I am going to translate some chapters and some things I have written since then and put them together in a free book in pdf format. I hope to have it in less than a week or two.

I have searched for publisher, translator, patrons, donations, with very little success. I have dedicated about 40-50,000 hours to Parkinson. And my dream is to be able to dedicate myself to this completely. But for now it has not been possible....

I hope that the sale of the future "Checkmate Parkinson's" will allow me to do so. The discovery of this forum has been like the "horn of plenty" for me. I am learning so much thanks to all of you.

We already know enough about the disease and its treatments. We have to put order and simplify all this "unassimilable complexity". The problem is in the "Parkinson's world.... in preventive decision making and treatment: otherwise, it would be impossible not to give B vitamins to regulate homocysteine to all patients at the onset of the disease, as recommended by Ahlskog in his books. Or a supplement of C, Q10 and B3 together with levodopa....

MBAnderson profile image
MBAnderson in reply to parkinsonshereandnow

Your father was wise man and lucky to have such a dedicated son. I admire your commitment and perseverance.

Please let us know when you're PDF is ready.

Gioc profile image
Gioc

There is no need to be a biologist to understand PD today, but only good observers of the obvious things that is that Parkinson's is a disease caused by cellular aging and its mechanisms that in Pwps for an anomaly first affects an area of ​​the brain. Thanks for these wonderful and enlightening posts. I fully share your goals.

You may also like...

\"The cure for Parkinson's disease\". New book in Spanish. Coming soon in English.

Amazon a book in Spanish about Parkinson's disease. Possibly closer to the one I would have liked...

Can we give CuATSM a try without waiting for the Australian trial completion (5 years from now)

Cu/Zn-superoxide dismutase (SOD1) is a ubiquitous enzyme responsible for scavenging superoxide...

Our Unknowable Quest To Slow Progression...

Oil. Mannitol. High Dose Thiamine. Vitamin B3. Vitamin B12. Vitamin D. Bio Kult. Fish Oil....

Interview of Daphne Bryan following the publication of her book: “Parkinson’s and the B1 therapy”.

the Italian neurologist Dr Antonio Costantini began treating his Parkinson’s patients with high...

When to increase dosage of Carbidopa/Levodopa

going to give him one extra C/L this morning. Hubby is on the HB1 protocol (which has done him well)