What were you told when you were first di... - Cure Parkinson's

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What were you told when you were first diagnosed with Parkinson’s disease?

wriga profile image
57 Replies

I was diagnosed with Parkinson’s disease in 2018, but had many of its symptoms years before that. The first was loss of the sense of smell, but the symptoms that most affected my quality of life came in the 5 years before diagnosis: fatigue, daytime sleepiness, poor sleep, apathy, bad moods, confusion, urinary urgency, constipation, sensitivity to heat or cold and leg pain. All of these symptoms were initially attributed to something else. Apathy, sleepiness (laziness) and bad moods were obviously personality problems, so my own fault. Urinary urgency was a prostate problem. Constipation was due to bad diet. Fatigue was just getting old…

The expert opinion changed with my first visible movement problems. My left leg was dragging behind and my left hand started trembling. I became stiff and slow. In 2018, the neurologist said I had Parkinson’s disease and many of the symptoms I had endured over the last 5 years were now attributable to Parkinson’s disease! Strange how expert opinion can change so easily. And so you might ask your doctor: What can you do to control this disease?

“Well, your brain cells that produce a neurotransmitter called dopamine have been dying off for years. You have already lost about 70% of these special neurons”.

- “70% lost, like lost at sea. You really mean dead, don't you doctor?”

- “Yes, it’s a neurodegenerative disease. You will lose more each year until you have none left.” Remember the number, 70%.

And what has been causing these brain cells to die?

– “The cause is unknown…” your Doctor may tell you. “It’s already too late to help the 70% dead neurons and since we don’t know why they’re dying, there is no therapy to slow or stop the progression.”

Look it up on the internet, all the big Parkinson’s web sites say the same thing.

It’s all so simple and logical. It’s not the Doctor’s fault. Just bad luck really, you pulled the short straw!

Your doctor may have prescribed some pills to help replace some of the lost dopamine. They will help with the symptoms, well, some of them, for a while.

– “Your next appointment will be in 6 months, good bye”.

What your Doctor really meant was that “he doesn’t know the cause” and there is “no approved therapy” to slow progression, so he cannot propose anything useful.

So let’s just think about this for a moment. We started out with about 400,000 dopamine-producing neurons, so we have already lost about 280,000 which leaves about 120,000 still alive. If this is right, Parkinson’s disease is just a lottery. It’s like losing pennies through a hole in your pocket. You didn’t notice it happening and now you’re nearly broke. What bad luck!

Now, dear Parkinson’s disease experts, with all due respect, “Do you really expect us to swallow that?”

Now for an admission, I'm not a medical doctor and I'm not an expert in Parkinson’s disease, but for many years I was an expert in another field of science. My very first task, as a research student in physical chemistry, was to question an established belief from a previous era, still printed in the best text books. It didn’t seem right, but there wasn’t an obvious alternative. It was an enigma.

It took me 2 years of measurements, calculations and creative thought to solve that enigma before an elegant solution was published in “Nature”. That solution then became the new model that the experts could quote. It is often cited to this day, but the present interpretation is even more elegant than mine. So, one of the first lessons of science is to question what the experts say. If you are the expert, that applies to you too. If the accepted wisdom doesn’t stand up to logical analysis, then whatever the experts say, it is probably wrong. Remember that the Sun used to go around the Earth.

So, now think about the Parkinson’s neuron numbers game above. Does it add up? No, but it’s a great way of avoiding the next question. “What's the alternative explanation?”

If it were simply a game of declining numbers of neurons over time, wouldn’t that simply lead to a regular decline in health over the years without all these highs and lows, good days and bad days that Parkinson’s patients know so well? Why would sleep, diet, stress or exercise make any difference?

“So could it be that neurons somehow get sick or damaged years before they die? And could some of the missing 70% still be alive but simply too sick to function properly? Wouldn’t that make more sense?”

As their host ages, neurons, unlike many other cells, are not regularly renewed, but also grow old. “Neurons carry with them the scars of a lifetime of service”.

A quick look at the research going on to understand neurodegenerative diseases reveals many possible causes. One that stands out above the others is that neurons are constantly being damaged by aggressive chemicals produced as by-products of cellular function, because the system that should normally eliminate them is not working properly. These chemicals are called free radicals and Reactive Oxygen Species (ROS) or Reactive Nitrogen Species (RNS). They are highly aggressive oxidants… just like like bleach! The system that is failing to eliminate them uses a process that activates gene expression which produces antioxidants right inside the cells. In neurons of people with Parkinson’s disease, this system, which I call the Redox Balance System (RBS) is no longer working at full speed. The ROS and RNS then cause oxidative stress which damages various cell components, especially mitochondria. This causes inflammation and eventually cell death.

Can we do anything to reduce this oxidative stress or speed up the system that should normally take care of it? Well not officially, remember there is “no approved therapy.” However, many researchers agree that there are ways to reactivate the Redox Balance System and so slow down the progression of PD. They also know which type of medication is likely to be effective. One of the most promising substances is called sulforaphane, an isothiocyanate that can easily be made from broccoli seeds or sprouts. It has been tested in laboratories and on animal models of Parkinson’s disease and has been shown to be effective, but has not been clinically trialled on humans with Parkinson’s disease, so it remains “not approved”.

In the last 3 months of 2020, a small number of pioneering Parkinson’s patients decided to test whether sulforaphane would do the job. They purchased their own seeds and equipment and followed the same method to make and ingest a broccoli seed tea containing sulforaphane and record their PD symptoms. The results of this self-supervised experiment showed very clearly that their non-motor symptoms were strongly attenuated in just 6 weeks, whereas their motor symptoms remained almost unchanged. Remember that non-motor symptoms are those that show up 5 years or more before diagnosis and when “70% of your dopamine neurons were dying”. So what happened? “Could it be that they were not dead after all?”

Now, the beneficial properties of sulforaphane have been known for more than 10 years, but it remains “not approved” and is unlikely to get approval because it is very cheap to make and cannot be patented. Maybe it’s about time for Parkinson’s patients to get angry and seriously question what the experts tell them.

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wriga
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57 Replies
Farooqji profile image
Farooqji

I have been beating the same drum repeatedly that the neurologists and movement Disorder specialists are useles crap. They only have learnt about the symptoms and learnt the names of a few medicines (sinemet, selegiline etc). They have also learnt a few words including substantia Nigra, dopaminergic neurones, freezing gait, etc and boast by uttering these words when sharing the diagnosis with the patients. Most of them are in the pocket of big pharma and regularly accept their funds. I think God has given us PD to generate a source of income for species known as neurologists

wriga profile image
wriga in reply to Farooqji

Maybe it’s about time for Parkinson’s patients to get angry and seriously question what the experts tell them. Are you going to be first "Angry Parkinsonian"

Xenos profile image
Xenos in reply to wriga

Oustanding posts, Wriga.

Can I do that from France ?

wriga profile image
wriga in reply to Xenos

What do you mean Xenos ? I'm in France

Xenos profile image
Xenos in reply to wriga

Where to buy the seeds mainly, how to grow them, that kind of stuff...

wriga profile image
wriga in reply to Xenos

Just send me your email address via HU message system

FMundo profile image
FMundo in reply to wriga

Sounds like a PD Avenger candidate, eh Albert ?. . .

wriga profile image
wriga in reply to FMundo

I am a PD avenger, but nobody seemed to be interested in what I was doing.

I have set up a blog called the Patient Researcher. patientresearcher.com/

There are several pages, posts, articles and documents and more will be put on as soon as I can write or reformulate them. A good place to start is here:

"Resetting the Redox Balance to fight Parkinson’s disease"

patientresearcher.com/2021/...

AmyLindy profile image
AmyLindy in reply to wriga

We will Follow you-it takes several exposures (in marketing terms) before ppl catch on or decide otherwise.

Keep on Truckin’ ...

in reply to wriga

Albert, This is so validating! At UCSF and other renowned hospitals, I have attempted to address the question of how one can improve via lifestyle intervention (diet, exercise, etc) if the neurons are dead. If they are dead they are dead and the most that can be hoped for is that the remaining don’t die.

So how is it that simple interventions like diet changes and exercise can reverse symptoms?

You have given me much needed bolstering to carry on my dig for solutions.

And, for our first “Science project” of the school year, my children are going to learn about sulphuraphane and we are going to grow broccoli sprouts based on your protocol.

I’m so grateful to you!

AmyLindy profile image
AmyLindy in reply to wriga

Let’s Be Angry Parkinsonians and challenge

and change...

Xenos profile image
Xenos in reply to Farooqji

So very true...

laglag profile image
laglag

Is it still possible to join the study and/or get the "recipe" to do our own test?

How or who do we get angry with? I have an appointment today with my neurologist, but it wouldn't do any good to talk to her? Do we write or go to Congress or EPA to let them know how we feel?

Farooqji profile image
Farooqji in reply to laglag

Just convey our feelings to her

wriga profile image
wriga in reply to laglag

Hi Laglag,

Just send me your email address via HU message system

I don't think getting angry individually will help. Anger has to be organised.

CaseyInsights profile image
CaseyInsights

This is what every scientist need to do: explain things in accessible layman’s terms without distorting by oversimplification, the underlying complexity of the issue at hand.

The suggestion is, we who have Parkinson’s “reactivate the Redox Balance System and so slow down the progression of PD”.

This is the theory of the redox balance of cells. And I find it mind-blowing as is its proposed activation involves every day food sources: broccoli sprouts, broccoli seeds, moringa leaves.

How hard is this - use food sources with a highly concentrated molecule to nudge the body into production of the necessary phase two antioxidants.

‘The antioxidant enzymes boosted by a phase 2 response include: heme oxygenase-1, thioredoxin reductase, glutathione peroxidase, superoxide dismutase, catalase, and the enzyme that is rate-limiting for glutathione synthesis, gamma-glutamylcysteine synthetase. Also induced are a number of enzymes which participate in carcinogen detoxification.’

🧐 When last I checked none of these molecules were available in the vitamin shop.

We can all act now: no need to wait on pharmacological or nutraceutical companies to supply the goods. There is no cavalry on the way. We are being asked to be the crucible, the laboratory for this experiment.

My food source of choice is moringa leaves/powder to make a tea. Look for details of this adventure in a separate post early March 2021. And thanks so much Albert ✨🙏🏾✨

Good health begins with food ✨🏋🏽‍♀️✨

🧐: Edit - 6, Feb 2021

wriga profile image
wriga

Thanks Casey, but don't overdo it. The dose required is very low, at least for Broccoli and the delivery method seems to be critical. There's still a lot we don't know, probably much more than we do know.

March 2021, return to the future ?

CaseyInsights profile image
CaseyInsights in reply to wriga

The Moringa powder is in use.

I have resorted to bribery in the face of non compliance: half cup Moringa tea mixed with half cup Dole’s unsweetened pineapple juice. Fantastic mix, if I may say so myself. This she takes with her tablets during the day.

March 2021, allows me a month of observation, on the fly and not your structured form.🌹

P.S:

Using 1 Tablespoon of Moringa powder to 1.25 cups of water. (She gets upset easily, so I will have adequate notice if I am overdoing it.)

M-o-ggy profile image
M-o-ggy in reply to CaseyInsights

Hi there. Is it possible to buy moringa powder/leaves?

CaseyInsights profile image
CaseyInsights in reply to M-o-ggy

Moringa powder is available on Amazon UK. I am not however familiar with the brands, so I cannot make a recommendation.

Here is what I use, available on Amazon USA

amazon.com/gp/product/B00Q5...

In making a tea do note in order to form the active ingredient, known as moringin, moringa must be steeped in warm water - 45 to 50 degrees Centigrade- for about 30 minutes.

Use a funnel and coffee filter to strain off leaves/powder. I will put up a post shortly, but if you do go forward with this, you can message me for any clarification if the need arises. 🌺

M-o-ggy profile image
M-o-ggy in reply to CaseyInsights

Thank you

wriga profile image
wriga

Bribery for a good cause

👍

LAJ12345 profile image
LAJ12345

I think what you say is very true. I think possibly most people eventually start getting these PD symptoms as they get older but maybe die of something else before it becomes official PD. I think it is a spectrum that when mild is attributed as you say to other things and only when it gets to certain point does it become PD and the neurologists get called in.

If you think of it that way, that everyone is slowly developing it over time to some degree depending on their diet, exercise and insults to the body it seems like it should be critical to research on how to stop it. At the moment other early symptoms are treated with various chemicals to stop those symptoms like constipation and possibly any one of the medications for these speeds up the process. Poor diet is probably another cause - slow malnutrition.

So if what you say is true there must be other compounds that do the same thing as surely there is a common ancestral food in all society that would have previously stopped progression naturally. You would think in regions where PD is lower and people live longer their diets must contain such a compound, and not every society eats brocolli sprouts or moringa. Or do you think these societies have had less insults to their bodies so don’t need as much correcting?

wriga profile image
wriga

Hello Laj,

Thanks for your input. This post was a real summary of my chronology , except that I made the diagnosis myself, but had to see a useless neurologist to be able to get the certain medication. I've since changed to a more committed one at the hospital.

Your post encouraged me to look up your profile with lots of very useful information. Can you tell me more about the Hardy's vitamin complex. What's in it and what do you think is doing the heavy lifting.

I see you are in NZ , someone visited my blog from NZ last week. I often get visits from OZ but rarely from NZ. Have you been tempted by the broccoli tea ?

LAJ12345 profile image
LAJ12345 in reply to wriga

Hi Wriga, yes I think it might have been me. I Have been looking at your posts for a while but as we keep trying new things I didn’t want to distort your results in case it was something else working for my husband.

I tried again to grow sprouts but as usual I got busy and had to go away a few days and had to throw them all out again. Is it possible to just take the unsprouted seeds and grind and extract them or is that no good. I am am a useless sprouter.

Hardy’s has many useful compounds and I think it a combination of them all at the right doses and they have proprietary blends that are supposed to help the body absorb things better. It is Canadian, quality controlled and has lots of clinical trials on things like anxiety, adhd so I thought it was worth trying as the root cause of all these things is probably the same as PD in my opinion, that is malnutrition and poisoning by toxins of various types. This provides nutrients and detoxing compounds in one formulation.

hardynutritionals.com/produ...

This has the ingredients but I can’t copy and paste them from their format so probably best you go to their page.

wriga profile image
wriga in reply to LAJ12345

Hi Laj,

Ground seeds are fine, but you need to follow a preparation method or they don't work. Send me your email by the HU chat message and I'll put you on the list for the next seed protocol update

Despe profile image
Despe

Hello, Albert

My husband has an appointment with his Vanderbilt MDS in March. Really, I don't expect much of a "treatment" other than getting his opinion about husband's PD progression, but I could convey some natural/homeopathic avenues people in this forum have been taking with success. Having said that, MDS was more than OK with "velvet beans and/or fava beans," however, he added carbidopa to my husband's "velvet beans" medicine. Guess he wanted to secure his position with this major university hospital, by prescribing what he has been taught and brainwashed in his medical school, hahaha. :)

wriga profile image
wriga

Hi Tina,Your Vanderbilt MD is right, Mucuna or Fava bean extracts will not work without carbidopa to inhibit an enzyme that would otherwise decarboxylate the natural levodopa in the liver and cause nausea.

BTW, I tried to contact Laurie Mischley, but she didn't respond.

Albert

Despe profile image
Despe in reply to wriga

Hi Albert,

How can I help? We haven't had a consultation for a while with Dr. Mischley, I was thinking making a virtual appointment to have her accessed current condition. . .

MarionP profile image
MarionP

Hi, can you give a reference or source to consult of the account and procedural decription of the informal or whatever non-institutional study of human trial of sulforaphane you mentioned?

wriga profile image
wriga in reply to MarionP

Everyone who has been following my posts knows where to find the information, so I didn't think the publicity was necessary.

This is a starting point, then follow the links and fish around.

wp.me/pc57vK-1o

MarionP profile image
MarionP in reply to wriga

Gee, Sorry, I thought you were inviting a dialogue and were looking to help find some answers. part of your text seem to imply so, and if that was not the case, I apologize. Not everyone comes here to establish an academic society or journal style of accumulative documentation or linked strings of correspondence. Usually there is a masthead to explain if that is the typical purpose of a blog.

If you were simply looking to vent your frustration, it would be good to know that you don't want any actual response beyond commiseration, some people are subtle in their style and not everyone knows to devote the seriousness and focused attention to your comments to extract your underlying intent without a bit of experience, or to significantly follow and dig into your generously offered compendium to obtain it.

Something indulgently simple and blunt by way of preface for us plain folk, such as "this is intended as a one-way communication and not an actual exchange, except for blind affirmation" would easily suffice. For the more erudite, perhaps "collegiality/mutuality not required."

After all, wouldn't want to intrude by inadvertently or clumsily devoting more effort than you yourself find it is going to be worth.

Andrac profile image
Andrac in reply to MarionP

Amen and amen!!

wriga profile image
wriga

Oops!

MarionP profile image
MarionP in reply to wriga

The U.S. Food and Drug Administration (FDA) issued suggested protocols recommending commercially grown sprout seeds be soaked and sterilized with 20,000 PPM calcium hypochlorite prior to sprouting. So in other words, chlorinating them. Oh shucks. Oops. And maybe they are wrong and that's the basic kernel of naturalist's complaints. Yes you may have to grow your own or be there to see that what you buy is not denatured behind the closed doors of commercial manufacturing of all those friendly sight-unseen "natural" sales pitches.

Just an example of what can create unanticipated defeats for a too-narrow vision of single track thinking and investigation not subject to peer criticism, which is necessary after all for good reason.

I think your ideas have some merit but are nothing new, even the idea of processes well in advance of more overt symptoms, such things as early developmental disease processes are already descibed in literature, generally termed "pre-clinical" now that they've been hypothesized and tools developed to look for them retrospectively, that's all emergent.

No evidence yet really suggests more than palliation to catch up with long term nutritional deficiencies (and only in cases where they existed in the first place such that filling them could make a difference) and the effects of modern stresses and persistent industrial pollution, which is to say all environmental sources of inputs as a theory of cause.

Ok, fine. But it's true of many diseases and the idea of ROS and RNS is ok, opponent-process has been around as a theory for neurotransmission and neurodevelopment mechanisms for at least 40 years, folding in immune functions including excess ROS activity is an excellent inclusion I agree, just as the idea of insufficient ROS production on the other side of the "Goldilocks" range of healthy ionization activity, whether within cells or outside, they were a hot new topic in the 1970s when I was first in grad school looking at color vision in cats and noticing the same thing in alcoholics, the mechanisms generalizing later to apply to investigation and then gradual demonstration that they apply to much of neural modification (the so called feedback and positive- and negative-feedback loops underlying neural process regulation) (also called the addiction model) in much of what we call non-associative learning, a good part of how the entire neural system develops, maintains, changes, and adapts it's structure ongoing as it encounters and lives in the world, these are no longer new principles in general. It's a physical, neurochemical and neurobiological description of the chemical mechanisms by which our machines constantly live, thrive, survive. It even applies to tissue growth such as muscles building in response to challenges like more weight to lift, more skills demanded to learn and master an instrument like a piano or a pencil or keyboard or a thought, a callous on a string instrument finger, melanin when you're in more sun.

Ok, fine. Down to the level of where a single tiny bit of a molecule with a nitrogen or sulphur or chlorine ion, a couple of little passing molecules flips a protein from cell-grow-mode over to cell-kill (apoptosis programmed cell death) mode, both program keys embedded in the same nerve cell. An extra ROS or two or even not enough ROS molecule just across the neutral "just right" Goldilocks band of an electron spinning through it's outer shell.

Pretty tight tolerance, amount, time and place to get the right bullet to the right place at just the right time, through all those other ions pulling and twisting at along the way from the usual nutritional intake port, the human mouth, all the way on to get just the right shaped and correctly ionised key into just the right lock, right Albert? It is easy to shorten telomeres, like a fuse, like a programmed timer that is consumed as it runs, but reversing that to make them longer and re-constitute them, certainly that's not so simple to do by just improving the diet, maybe in many cases, but at our stage isn't that a little simple, or maybe more accurately and fairly put, impractical, narrow, emotional, patchwork?

Where we are, at the moment, you want a new fuse or wire for the worn out one, even an electrician, or an electrical engineer with a focused ion beam can't repair it enough, or rebuild it at some point, has to get a new part from the factory, manufactured under factory conditions...even a rebuilt part has to have the precision and environment to accomplish it. Sometimes you can't reconstitute a burned fuse, or cigarette...you can't un-burn (reduce) it back into what it was... it's already been oxidized.

You are on the right track but just really sort of re-inventing the wheel. Not that much new here, which is why neurologists haven't had that much new to offer regarding dietary inputs to help a great deal with DE-GENerative disease. Aside from the noted occasional exceptions, which might be exceptions...the exceptions, like Popper for example, should of course be excitedly mined.

Really sorry about that, truly I am. The time for good and continual nutrition building is in our youth, not our 50s and 60s or the few years prior to the emergence of formal disease-label clinical symptoms...for most of us. What is left to most of us by this stage in our lives is not curative, but remedial. Science isn't yet perfect, but blaming the practitioners who really only apply what the science has given them is not going to put much on the horizon. Meanwhile, a flashlight only illuminates where you choose to shine it.

Meanwhile, holding doctors responsible for not being scientists is unfair. Doctors, that is, physicians treating patients, are not scientists, they are specialists in APPLYING the science, not CREATING it...something I think you are informed enough to know, certainly. It takes a lifetime career to apply it, for most of us, just the one specialized discipline, and a whole separate lifetime career to create science, which is way different than actually creating something from it to actually put to use ...the two are NOT the same.

You take unfair advantage over those here in this group who don't know that difference, people of us who wouldn't and wouldn't be expected to, unless they've known or were pointed to make something of personal interest to specically go looking to learn about, to know the difference. Cheap thrill. Like expecting Hawking to machine his own lasers and being disappointed that he should have built his own programming disc foudarty and microscopic imahing photolithographic circuitry, as if being a scientist made it proper to be a machinist electrical engineer at an Intel plant that he also built himself. Uh-huh. But you let people here think it's that simple. Reductionism is a human trait, it's why we need PEER review, and you know it. Oops again... Doctors don't have enough time to do it ALL. Who does? Play nice.

wriga profile image
wriga in reply to MarionP

MarionP, I have read and am trying to understand what you say.

You have some interesting points.

1) Yes, Research needs peer review to validate it. I would be delighted if people with the resources and authority would show some "intellectual curiosity " and criticise what I'm doing. Criticism would imply taking an interest. I've written to many of the PD gurus. They mostly don't even bother replying. Alberto Espay did reply. He said " if your work is not double-blind placebo-controlled, I'm not interested. That's what Cuadrado tried to do and could get it funded because sulforaphane cannot be patented. I did what was possible, not what was ideal but impossible.

2) Doctors are not scientists. I agree, that was unfair. They don't have the time to get involved, but once they have left medical school, medical science continues to make progress. If they ignore that they should at least listen to patients who are another source of information.

3) Nothing new here. ROS, RNS. Sure, it's been around for years, just like Nrf2 and sulforaphane. I invented nothing. I just joined up the dots and tried to apply it to PD. Albena Dinkova-Kostova and Antonio Cuadrado and Jed Fahey were right after all. I'm happy to give them the credit they deserve. There work, by the way, and it's colossal, is peer reviewed, so why does nobody in the PD world take notice?

TheGimba profile image
TheGimba

Honestly, I diagnosed my husband three years before any of his four neurologists. His mom had PD too, but this has no significance apparently. Pretty much useless and waaaay overpaid and what is probably worse, they ignore insights and opinions of family members who live with this disease 24/7. I'm not sure how they sleep at night but I'm sure their beds are expensive and comfortable. I haven't witnessed any intellectual curiosity.

wriga profile image
wriga

"I haven't witnessed any intellectual curiosity."

That is probably the best description of a neurologist I've ever heard.

Buckholt profile image
Buckholt

I thought your last paragraph was interesting. “Now, the beneficial properties of sulforaphane have been known for more than 10 years, but it remains “not approved” and is unlikely to get approval because it is very cheap to make and cannot be patented”. Surely that’s why we have Parkinson’s charities, like MJF, to fund such basic research that drugs companies couldn’t justify. We keep being told that great progress is being made in research, but is there another health condition that is still dependent on 50 year old therapies?

I think I see my Neurologist once a year, and this is quite telling. Clearly the “industry” doesn’t expect much to change and is this the apathy you talk about? It does appear that they are waiting to be told what the solution is, rather than think for themselves.

wriga profile image
wriga in reply to Buckholt

Buckholt: I totally agree, you would think MJFF would welcome such natural therapies. The reality is just the opposite. I'm in contact with Antonio Cuadrado, who is a brilliant and very hard working neurologist. He was very upset to get this trial refused. If it had been done, I'm quite sure we would be in a different place now. He has told me that he will try once again to get funding to get this subject moving again. Don't hold your breath.

I have set up a blog called the Patient Researcher. patientresearcher.com/

There are several pages, posts, articles and documents and more will be put on as soon as I can write or reformulate them. This is a section from an article called :

"Resetting the Redox Balance to fight Parkinson’s disease"

wordpress.com/page/patientr...

Can resetting the redox balance help Parkinson’s disease?

Resetting the redox balance system has not been officially tested on humans with Parkinson’s disease. In 2010, a leading neurologist, Dr Antonio Cuadrado proposed a Phase II trial using sulforaphane to reduce oxidative stress for Parkinson’s disease, in a human trial supported by 16 European hospitals. The Michael J. Fox Foundation for Parkinson’s disease turned down his request for funding. The reason given was:

“If it would show a relevant efficacy, no company would be interested in covering the huge cost of a Phase III trial for a natural compound that could not be patented.”

Put another way – “Well, even if it would benefit Parkinson’s patients, we will not support it since there is no financial incentive for pharmaceutical companies to develop such a therapy.”

Over the ten years since this statement and despite considerable progress by researchers, no pharmaceutical company has shown any interest in using sulforaphane to treat Parkinson’s disease.

Despe profile image
Despe in reply to wriga

". . .no pharmaceutical company has shown any interest in using sulforaphane to treat Parkinson’s disease."

And they never will, Albert! I believe it's a waste of time and effort. No financial incentives, no T R I A L S! If there are PwP who donate to such organizations, they must be very naive. :(

Zella23 profile image
Zella23

My husband is one who has benefitted from reading about what has helped people with PD on this website and is now on his 3 rd month of experimenting with broccoli tea protocol and am very grateful to Albert for all his help with sharing his knowledge and protocol as well as providing us with everything to help with this.

My husband also thought he had PD before dx as had similar symptoms as above.

Our experience for the first 4 years after dx was frustration about the condition not many places to find out information and absolutely no help from our Neuro who saw him for 10 minutes every 6 months to a year.

On my suggestion about Vit D he said yes you should be taking that and so it went on. Zilch people skills and no two way conversations.

We changed him after 4 years and feel our new one is supportive of new ideas.

I wonder how he ll react when we inform him of broccoli tea, red light therapy and supplements as well as increased exercise and reduction of PD meds!

Thank goodness for patient researchers!

Despe profile image
Despe in reply to Zella23

Yes, patients are the best neurologists!

GrandmaBug profile image
GrandmaBug in reply to Zella23

What is your recipe for broccoli tea?

wriga profile image
wriga in reply to GrandmaBug

It's not a recipe. It's a protocol. It requires rational thought and interpretation.

If you're still interested, send me your email address via HU message system

Jean-louisVLR profile image
Jean-louisVLR

Thank you wriga,In your opinion, are tremors likely to be reduced by following suggested sulforaphane diet ?

wriga profile image
wriga in reply to Jean-louisVLR

Yes, in my experience, but it takes a long time, 6-12 months. I have not found any good research that convincingly explains how tremor develops. It seems to be due to collateral damage several steps away from the initial cause. Quite possibly related to calcium ion fluctuations in cells with damaged ER or mitochondria (both of which are calcium ion reservoirs) , but even that's not certain. If reducing oxidative stress removes the cause, it does not repair the damage, but at least allows the damage to be repaired.

Jean-louisVLR profile image
Jean-louisVLR in reply to wriga

I thank you

715McGee profile image
715McGee

J’aimerais aussi recevoir de votre part les instructions pour l’utilisation des graines de brocoli.Un grand merci si cela fonctionne!

Je suis du Québec

Mathieu

wriga profile image
wriga in reply to 715McGee

Same reply, just send me your email address via HU message system

Tobe profile image
Tobe

Hi wriga. I remember my very first doc's PD appointment very well. After reeling off my list of symptoms, my doc looked at me and asked, 'Has your face always been like that?!

roslynlady profile image
roslynlady

You are so on target. Voiced my sentiments. I followed Dr Constantine from Italy and my husband is on b1 thiamine 500 x 4 in the morning and 1 later in the afternoon. Do you follow B1 therapy? He takes 25/100 cold. I am interested in hearing from you and about hardy nutritional. Thank you/ Be safe and be well!

Tacitus1953 profile image
Tacitus1953

Hi wriga!Interesting please send me details

Info@rmbotman.nl

ion_ion profile image
ion_ion

My first symptom was REM disorder, those nightmare where I was fighting with monsters.

Then it came an intermittent low amplitude tremor which I ignored and which with years started to amplify.

The diagnose turned me upside down.

I was lucky the HDT solved all my symptoms except the RH tremor.

I just checked my smell few minutes ago and it works fine on a banana.

gregorio profile image
gregorio

Hi, I live in the south of Spain and am 70 yrs old. Your intro sounds just like many I have written to people, I was given a prescription for Azalect, told to come back in 3 months and shoved out the door. I thought I had been given a death setence and understood nothing about PD. That changed rapidly with about 4 hours a day for months on the interweb ! . I chucked the pills away, went on a Keto diet, started B1 tablets. Macuna, Nac and Nadh suppliments.. I play golf, walking, 3 times a week and walk anywhere I can. I do not think I have progressed in my PD and only have a tremor, my drooling and sleep problems and at times my no smell are gone and I seem OK otherwise.. I started a FB page to spread the gospal so to speak locally and think I have been able to get a few sufferers thinking for themselfs.

facebook.com/groups/3014825....

I would love to learn more about your protacol, I think just having the tremor which is fairly constant, I would be a good study of it's effect on my shaking.

gre.g@live.com

KERRINGTON profile image
KERRINGTON

Hello....I would really appreciate your opinion on Avmacol. It is a broccoli seed extract product. I'd include the listed ingredients, but at the moment don't have my glasses.

You can view its' ingredients nicely on Amazon.

I have been taking 1 pill, once daily for approximately 3 months, but I'm not sure if it is enoughto match your sulforaphane dose. I had to abandon making my own broccoli seed extract due to sprouting issues.

AaronS profile image
AaronS

Its all money mate, its a bloody game emptying wallets of those that just want a fair go from the affliction they have to contend with. Big Pharma and some neurologists can go eat a big bag of self serving d**ks. I doubted your initial post about sulphoraphane, and I'm sorry for that, my research since has backed you up, I'd love to know more.PS: this is not an angry post im just being honest

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