The Complete Insider's Guide to Parkinson's

A controversial but resolutely honest guide to Parkinson's seen through the eyes of a committed "Patient Scientist."

Nothing is quite as it seems in the world of Parkinson’s. To the unwary observer, Parkinson’s disease corresponds to the “Idealized vision of Parkinson’s,” universally promoted by the medical, professional, business and charitable organizations that claim to represent patients. This “idealized vision” differs significantly from the “lived-experience of Parkinson’s” that patients actually suffer from, in that it corresponds to a highly restricted version of what is actually known about the real disease. This “idealized vision,” limited solely to the neurological aspects caused by the loss of neurons that produce dopamine and control movement, is then logically and coherently applied to define therapies for Parkinson’s and to orientate the direction of research spending. Unsurprisingly, therapies designed to treat an idealized version of Parkinson’s fail to treat the whole disease and research oriented by it will not change that. The result is that therapies for Parkinson’s disease have remained largely unchanged for decades, a situation that is likely to continue for as long as the “Idealized, but restricted vision of Parkinson’s” remains dominant. The losers are of course the patients. The winners are (……… ). “I don’t need to tell you.”

That is the damning conclusion of a scientist after meticulously researching the condition since his own diagnosis in 2018.

In “An Insider’s Guide to Parkinson’s” I will try to bring you a resolutely honest description of the true nature of Parkinson's as witnessed and analysed by "The Patient Researcher”. My understanding of Parkinson’s, based on my own experience and supported by research, observation and experimentation, has led me adopt a vision that is radically different from that “promoted” by most charitable and government organisations who’s declared objective is to support the Parkinson’s patient community. It turns out that the limited state of knowledge of the “Idealized vision” is consistent with keeping both care and research unchanged, whereas that of “The lived experience of Parkinson’s” is much wider and is consistent with shifting research towards disease-modfying therapies. Interestingly, the former preserves the interests of Parkinson's businesses, whereas in the long term, the latter would be disruptive to businesses.

Since I dont claim to be up to speed on every subject, This guide is open to “Insider Guest Writers” who have Insider knowledge Parkinson’s. All subjects related to Parkinson’s are open: medical, pharmaceutical, devices, professional experiences, personal experiences, business, politics.

You know your Parkinson’s? You have special knowledge about Parkinson’s? Become an “Insider” Guest Writer, Editor, Critic - You don’t agree with a post? Propose an alternative view. The Table of Contents is evolutive and flexible.
Mark your spot. “Insider” Authors welcome for: Nutrition, The intestinal biome, Public Health, Exercises, …

This is a VERY provisional Table of Contents for:
“A Complete Insider’s Guide to Parkinson’s”
The posts will not be published in this order.

1. About The Patient Researcher

   Biography of The Patient Researcher
   

   Biographies of Guest Writers

2. The context: Parkinson’s Research has been hijacked

   Drug development is controlled by Big Pharma

   The Big Pharma business model excludes therapies that we know work

   The system is designed protect revenues and fail patients

   We recognize the signs of organized PR

   The aim of the PR is to justify the failure

3. A Chronicle of my personal journey with Parkinson’s

   2018:
   Diagnosis - Neurologists are not up to date; signs of suspect PR

   Disagreement on causes of Parkinson’s

   Emergence of two models for Parkinson’s: Chemistry vs Neurology

   Oxidative stress (OS) and mitochondria – function and dysfunction

   2019:
   Control of OS – The transcription factor Nrf2 – function and dysfunction

   Nrf2 in neurodegenerative diseases: inspired by Prof Albena Dinkova-Kostova

   Nrf2 activators: Brassica isothiocyanates, Sulforaphane: Collaboration with Prof Jed Fahey

   2020:
   First Broccoli Seed Tea (BST) containing sulforaphane – effective, but inconsistent.

   BST Self-testing: “A pilot study by 8 Parkinson’s Patients” reveals that non-motor symptoms can be rapidly suppressed.

   2021:

   Collaboration with Dr Simon Stott, Cure Parkinsons – submission of a research project on BST to an International Panel of Parkinson’s Experts (iLCT): Project rejected on the (false) grounds that activating Nrf2 carries undefined risks.

   2022:
   Standardization and optimization of BST: excellent repeatable results, complete remission of non-motor symptoms in most patients. Instructions to make BST at home are now avaialble online: https://patientresearcher.com/

   2023:
   The Redox Stress Test – a unique analytical tool using BST redefines non-motor symptoms of PD: Published January 2024.

   2024:

   Reclassification of Parkinson’s Symptoms: non-motor symptoms are related to oxidative stress. Motor symptoms are related to dopamine shortages

   A new paradigm for Parkinson’s: Early PD is dominated by non-motor symptoms.

   Non-motor symptoms are key to finding a cure for PD. Motor symptoms are much too late in the process.

4. What is Parkinson’s

   The causes of Parkinson’s

   The progression of Parkinson’s

   Chemistry vs Neurology

   Gut-brain axis

   Parkinson’s altered microbiome

   alpha-synuclein - cause or consequence of PD

5. Parkinson’s symptoms

   Non-motor symptoms = chemistry in action

   Motor symptoms = neurology in action

6. Medication

   The Blood-brain barrier

   Carbidopa-Levodopa

   Enzyme inhibitors

   Dopamine agonists

7. Nutrition

   Diet and disease progression

   Mediterranean diet

   Ketogenic diet

   Proteins and medication

8. Exercise and Parkinson’s

   Walking

   Aerobic exercise

9. Parkinson's Research

   Academic research

   Non-profit Organizations

   Private pharmaceutical research

   Patient participation

   Conflicts of interest

   Follow the money

   A flawed and wasteful system

10. Drug development

    Pre-clinical

    Patent protection

    The drug business model

    Clinical trials

    The huge cost of drug development protects Big Pharma

    The role of the FDA

    Conflicts of interest

    Follow the money

11. Public healthcare

    Public Healthcare uses a flawed model of Parkinson’s

    Non-motor symptoms should be given priority

    The absence of preventive medicine costs $Millions

    The delegation of drug development to Big Pharma ensures only expensive drugs

    Inexpensive plant-based drugs could save public healthcare $Millions

    Drug protocols restrict the role of physicians to approved expensive drugs

12. Patient selfcare

    Why patients turn to selfcare

    Patients’ state of knowledge

    Food supplements

    Alternative medication

13. Enough is known to develop disease-modifying therapies now

    The science is well-known, but has been suppressed.

    Nrf2 is OK after all: AstraZeneca pays $400 million for patented Nrf2 activator

    1. Sulforaphane (SFN) – is a highly potent Nrf2 activator - but it cannot be patented.

    2. SFN is very effective in reducing OS in peripheral sites (intestines and urinary tract) to resolve non-motor symptoms (constipation and urinary urgency)

    3. SFN partially reduces OS in astrocytes to resolve brain fog and balance issues, but not motor symptoms.

    4. Nano-colloidal transport of SFN across the BBB should be tested

    Alternative Nrf2 activators that cross the BBB

    1. N-Acetyl L-leucin

    2. DMSO

There is mounting evidence that Parkinson’s can be stopped/reversed

14. Patient advocacy: Changing the mindset

    Nothing will happen until we change the expectations of Parkinson’s patients

    The current negative PR message (to protect business revenues) falsely claims:

    “Parkinson’s is extraordinarily complex and we don’t know what causes it.”

    This must be called out and rejected.

    A new Patient-led PR message needs to be created along the lines:

    “We know Parkinson’s can be cured now”

    Its strength lies in the fact that Patients know their own Parkinson’s better than neurologists. This guide is to help you learn a lot more about Parkinson’s and why there has been no progress to develop new drugs for decades.

    I advocate to build a movement to promote this theme.

    The articles and information that I will be sharing with you are the result of more than 10,000 hours of hard work and experimentation extending over more than 5 years. My initial objective was to try to understand Parkinson’s enough to treat my own disease and share the results with other Parkinson’s patients. That objective was achieved in 2022. The present objective is much more difficult, but deserves to be given a try. Please give some thought to this when you click on the subscribe button.