Has anyone actually got cured from parkin... - Cure Parkinson's

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Has anyone actually got cured from parkinson before ?

grandmaster727 profile image

i know this question has been repeated several times on the internet , but i really want to know if someone succeeded before to relief the parkinson symptoms completely , or this is just a myth ?

71 Replies

You've asked two different questions here, which may cause confusion, so i will answer them both.

1. got cured

Myth.

Inevitably you will hear 'what about person [x] or person [y]' (people that claim to have recovered or been cured). The far more likely explanation for those people is that they were misdiagnosed. Thousands of people a year are misdiagnosed and some portion of those ultimaltely are proven to have a more benign, non degenerative condition. And no, a response to levodopa is not a 100% predictor of autopsy proven PD (i say this because it is another myth).

Most of those mis dx (but with a more benign condition) either die (of something else) before they become aware of that, or become aware of it and then move on. A tiny portion write books or seek publicity in other ways about their 'recovery'.

Some people (quite often spouses, who in some understandable ways find acceptance harder to come by than PWPs) find hope in those stories. I find that to be false hope, and think it much more rewarding to live your life as if you dont know how you'll be in 1, 2,3,4,5 (and so on) years' time. Becuase all of the evidence suggests that you don't.

Ill believe a 'recovery' story when i start seeing meaningful replication. It wouldnt need to be in 100% of people that attempted it. Nor 50 nor 10. But it should work in at least a small percentage of PWPs that attempt to replicate it. And when that happens, you will hear about it from credible sources like large universities with neurology departments.

2. relief the parkinson symptoms completely

Sure. Temporarily. Often through appropriately dosed medication in the early years post dx. Surgery, maybe. Other means for very early post dx.

Gioc profile image
Gioc in reply to kevowpd

you contradict yourself as usual: first you explain that the diagnosis can be erroneous in large percentage, but who makes them? Neurologists.

They are the professionals who are educated in the same universities that you cite as the only authoritative source valid for you to declare a case of heal.

Make up your mind, it's the same science, it can't only be valid when you like it or don't like it.

CPT_Helen profile image
CPT_HelenPartner in reply to Gioc

Hi GioC.Misdiagnosis does happen surprisingly often as each person presents with their own combination of symptoms and many people do not have access to neurologists.

Gioc profile image
Gioc in reply to CPT_Helen

😐 uh ?It's true! Some go to the neurologist once and don’t come back

park_bear profile image
park_bear in reply to CPT_Helen

This is a reply to everybody on this thread. The study that has been cited as the reference for diagnostic accuracy:

Accuracy of clinical diagnosis of Parkinson disease, A systematic review and meta-analysis pubmed.ncbi.nlm.nih.gov/267...

From the abstract, confidence intervals removed for readability:

" Considering only these 11 studies, the pooled diagnostic accuracy was 80.6% ... Accuracy was 73.8% ... for clinical diagnosis performed mainly by nonexperts. Accuracy of clinical diagnosis performed by movement disorders experts rose from 79.6% ...of initial assessment to 83.9% "

That leaves the remainder of somewhere between 16-26% as misdiagnoses. What were these misdiagnoses?

From the full text of the study:

"Accordingly, we performed a qualitative review on the misdiagnosis issue (table e-2). Among clinic-based studies, okay MSA (range 0%–9.8%), PSP (range 0%–6.5%), dementia with Lewy bodies (DLB) (range 0%–8%), AD[Alzheimer's] (range 0%–7.2%), and VaE [vascular encephalopathy] (range 0%–7.7%) were the most frequent final diagnoses associated with false-positives"

Most of these misdiagnoses were Parkinson's plus conditions, which are even worse than standard Parkinson's. Likewise for Alzheimer's. So recovery from these conditions would be even more remarkable than recovery from Parkinson's. Therefore, for the purpose of evaluating recovery stories these conditions should not be excluded with the excuse that they were misdiagnoses. For this purpose, only the vascular encephalopathy misdiagnosis would count as a reason to disregard a recovery story. This was a single-digit percentage of diagnoses.

It does not mean we should accept recovery stories uncritically. Janice Hadlock claims to have recovered patients, but only accepts very early stage, where symptom relief can look like recovery. Howard Shifke was under extreme stress at the time he was symptomatic, and was intimately familiar with symptoms because he cared for his Parkinson's afflicted father. In his book he devotes only a single sentence to his diagnosis. On the other hand, Bianca Molle, as far as I can tell, was properly diagnosed. She attributes her healing to Qigong. After personally engaging with this practice I very quickly was able to reduce medication to less than half. On the other hand, I am aware of others who practice Qigong, and if they have recovered I have not heard about it. There are other recovery stories that seem to be well documented, for example Chris Lacey.

Based on the foregoing, I do believe there have been recoveries, rarely.

parkie13 profile image
parkie13 in reply to park_bear

I'm going to say that the recovery depends on the cause of Parkinson's.

this is very helpful , appreciated

LindaP50 profile image
LindaP50 in reply to park_bear

I don't get how one can "recover" from PD. Maybe they didn't loose a lot of dopamine? Maybe just at the start of stage 1 of PD?

park_bear profile image
park_bear in reply to LindaP50

Yes, that could be it. In early stage there is a population of dopamine producing cells that are ailing but not dead. If those cells are restored to health it could produce a functional cure.

LindaP50 profile image
LindaP50 in reply to park_bear

Ah, so there is some hope if you are able to catch the disease early. Make sense.

Bennorca profile image
Bennorca in reply to park_bear

The “death of cells/lack of dopamine” model is just a theory. It has never been proved. You may wish to check out Dr Janice Haddock on Google and YouTube.

park_bear profile image
park_bear in reply to Bennorca

Nope, it is not "Haddock" it is Hadlock. And gravitation is "just a theory" too.

I already addressed the Hadlock situation above.

Bennorca profile image
Bennorca in reply to park_bear

Sorry for the typo! Btw: Howard Shiffke (whose claims may or may not be right), did not advocate Qigong but MEDICAL Qigong. That said, your cynical undertone makes it important for me to take you seriously.

Bennorca profile image
Bennorca in reply to Bennorca

… makes it impossible,,,

It's always possible to have other conditions in addition to Parkinson’s. Verbose pompous arse syndrome is one that springs to mind

park_bear profile image
park_bear in reply to Bennorca

I bow to your superior knowledge of Qigong

MarionP profile image
MarionP in reply to Gioc

Sorry Giocas but you are in error.

So is everybody and thinking there is something that can be rationally discussed as cure at the stage of knowledge we are currently at. In science it is only independent and verifiable replication of extremely clearly defined procedure that meets the test of required proof.

This is probably not the forum to educate, especially if you have already decided that there is nothing to educate you about, but for the benefit of other readers, rest assured there is much re-examining to do, even if only to the point of eventually realizing that there is so little known because we are not even at the stage of being able to agree on what has been talked about, to put anything to a rational test, when so much is yet still dependent on consensus and other fluid mushy vague terms. There are simply far too many faulty assumptions and bad communication and language, unclarified unqualified hidden assumptions and interpretations, variable terms, all very poorly described and inexact, to get into. Nature of the beast. I'm sure it's disappointing. Claims are simply not possible yet. Knowing what we are talking about is not possible yet.

At the state and stage of "truth" that the phenomenon of Parkinson's embraces, you are at the moment as likely to reach a stable testable definition of reality through religion, politics, how many angels can fit on the head of a pin, semantic debates, and everything else that cannot effectively separate what is true from what is idiosyncratic, unique, and arbitrary, as you are to be able to rationally discuss "cure" in the context of parkinson's. Even now people in this string alone are varying the terms, no one here answering has said "cure," so now it is a question of noticing when people by way of answer substitute the word "recovery" (is that like "remission," or different...oh, what was the result (and "caused by, or not?") treatment?), "diagnosis", "clinical," "science," whatever any of those is supposed to be defined as, what counts and what doesn't, and how do we know, did this case count well that case didn't, and how come...yet left unsaid and not agreed upon... Just a couple examples of at least a dozen I'm looking at here just in the string alone. What do you hope to achieve? One might just as well talk about achieving a "cure" for "bad."

Gioc profile image
Gioc in reply to MarionP

Ok Marion, but I didn't quite understand the points I should re-examine.

MarionP profile image
MarionP in reply to Gioc

Exactly. Now you have it. That is exactly what I am trying to say is the problem. That's the problem that has to be solved before we can tackle the problem.

Gioc profile image
Gioc in reply to MarionP

Ok Marion, I get the point.

Let's put it this way if I were dead I would have no problem, so it is Life that poses problems for its solution.

This do the Life, it poses the problem for example "how i do eke out a living?" and then works out a solution to the personal and family economy.

Here we have two points of view: Life the problem and Life the solver. Two points of view easily interchangeable.

What can I say that I live my life more from the point of view of the solver than from apathetically accepting the disease as someone would like to push us to do with his posts aimed at erasing all hope.

It is not a matter of principle, it is simply more fun to take the point of view of trying to solve problems than to fall into apathy and die, even if the problem will eventually at the end , go away.

Who writes that the cure to PD is unattainable should leave this forum HU CURE PARKINSON'S as it is completely misaligned with the aims of its founder Tom Isaac and I quote:

"Tom's spirit was and still remains inspirational. His vision and drive in creating Cure Parkinson's was simply extraordinary . His determination to help find a cure for everyone living with Parkinson's led to the charity supporting ground-breaking science with huge potential and medicine that is achieving exceptionally important breakthroughs for people with Parkinson's. It remains the mission of this incredible charity to fulfill his vision : we are more determined than ever. "

cureparkinsons.org.uk/tom-i...

Translated with google translate, if something is not clear, it's not my fault. :-)

Greeting from Italy Gio.

Everything you can get from goat's milk. For dairy lovers. ☑️ (a bit expensive €€€)
Bolt_Upright profile image
Bolt_Upright in reply to Gioc

I love that this group is called "Cure Parkinson's".

MarionP profile image
MarionP in reply to Gioc

Okay much better.

My favorite economics educator was John Maynard Keynes. What did he say about the "long run?"

Solvang53 profile image
Solvang53 in reply to MarionP

we're all dead?

MarionP profile image
MarionP in reply to Solvang53

🦉 You got it Jack

We had a super long thread on this a year ago when I joined this group. The only cases of cure I have seen was a couple of cases where people had REM Sleep Behavior Disorder and were just starting to get PD. They went on like 2 mg Melatonin and a strict bedtime for 6 months and seemed to back out of it. I can't find the thread but if you like I can find the examples later.

Then there are the Qigong people that seem to have recovered and that guy that did wood carving. Maybe they were misdiagnosed, hard to say.

Believe it or not I just finished reading the whole thread, it was tied to something I was looking at. I tried to find it again now and repost it however all my searches did not bring anything up from a year ago.

No! I am not cured but I have reversed most of my movement symptoms since 2002 and have not needed to take any Pd medication since then. I am now 87 and still do not so fast walking.

Solvang53 profile image
Solvang53 in reply to JohnPepper

thanks for posting...I've read some of your blogs...if stopping or slowing the progress is considered a "cure" count me in...I am for finding the primary CAUSES and exploring NATURAL treatments instead of big pharma's chemical concoctions created to make money but not really "cure" anything...curing people isnt big pharmas goal...see chemo for cancer as one example...peace to you sir

JohnPepper profile image
JohnPepper in reply to Solvang53

To the best of my knowledge there is no food or suplimet that revereses Pd symptoms. There is only one way to reverse the symptoms and that is fast walking. You may think you can't do fast wlking, but that may not be true. I stopped needing to taks any Pd n=meds in 2002. I had been doing fast walking for eight years and had not tried to comeoff my Selegilne. But, after a month of ignoring the effects, which were not serious, I was successfully off and have stayed off since them I am 87 and still fast walking.

Solvang53 profile image
Solvang53 in reply to JohnPepper

thats because big pharma has never spent the money to research anything other than pills that supposedly hide the symptoms...they dont want a "cure" for anything...it would kill their business model...keep them sick and sell them pills...

JohnPepper profile image
JohnPepper in reply to Solvang53

Yes! You are quite right. Have yo noticed that they only look for cures for illnesses that kill us? How o===long did it take tom find a cure for Covid 19? Only a few months!

Solvang53 profile image
Solvang53 in reply to JohnPepper

they didnt find a cure for anything...the vaccines are killing more people than the so called virus...which has NEVER BEEN ISOLATED...almost every death that was attributed to the "virus" were people with co-morbidities...childrenshealthdefense.org/...

JohnPepper profile image
JohnPepper in reply to Solvang53

Does a vaccine not count as a cure? I'm alarmed at the thought of vaccines killing anybody. All of my familay have had covid and survived, one of thm 3 times. My wife and I have not had covid but have had the 3 vaccinations and the booster.

Solvang53 profile image
Solvang53 in reply to JohnPepper

read the article I posted...I personally know two people in their fifties who died from "heart attacks" within a month of getting the "booster"...certain "batches" of the clot shot have higher rates of adverse events after being administered...coincidence? accident? intentional?... I am 68...never got the shot...never got sick...while living in southern california...a highly populated area...healthimpactnews.com/2022/f...

JohnPepper profile image
JohnPepper in reply to Solvang53

You win some, you lose some. That's life.

thanks all for kind and informative replies , where can i get more info on Qigong?

Here is my report, with links:

healthunlocked.com/cure-par...

Kevowpd makes several good points

A certain diagnosis requires an autopsy

PD is notoriously hard to diagnose. PB has selected one perspective and drawn a conclusion. There is substantial alternative corroboration for misdiagnosis which could account for apparent recovery ajmc.com/view/poll-finds-1-...

Whilst it may be frustrating that every person "recovering" is told they didn't have it, the key to a convincing recovery therapy is replication. If a therapy is effective it will be repeatable. Not necessarily universally but significantly and consistently

This is a poll of people with Parkinson's who had been initially misdiagnosed as having something else. That is not the same as people being diagnosed with Parkinson's and not having it.

"In a poll of people with Parkinson disease, more than 1 in 4 (26%) participants reported having been misdiagnosed,"

It was an example of the widely acknowledged difficulty in diagnosing PD, which could account for people being "cured" People received drugs and surgery for the PD they didn't have

"Results showed that among participants who were misdiagnosed, 48% were given treatment for their nonexistent condition, with 36% receiving medication, 6% undergoing operations or procedures, and 6% given both medication and operations/procedures. A decline in health was reported in 34% of those misdiagnosed"

Gioc profile image
Gioc in reply to WinnieThePoo

“People received drugs and surgery for the PD they didn't have”

No WTP is not like that. Wrong example.

They had PD and they were diagnosed and medicated with something else they didn't have.

Quote:s:”In our survey of more than 2,000 people, more than a quarter (26%) reported they were misdiagnosed with a different condition before receiving the correct Parkinson’s diagnosis.”.parkinsons.org.uk/news/poll...

WinnieThePoo profile image
WinnieThePoo in reply to Gioc

OkI'm not sure which surgical procedure you think they might have received for a condition which wasn't parkinson's, but have another

jnnp.bmj.com/content/73/5/529

Parkinson’s is notorious for misdiagnosis

Gioc profile image
Gioc in reply to WinnieThePoo

But not fantastic you find that while you quote a research where it says that drug-induced parkinsonism is diagnosed distinctly from PD and I quote: "Drug-induced parkinsonism was diagnosed if the onset of parkinsonian symptoms was within six months or at least six months. from treatment with dopamine receptor blocking drugs, and still present on the day of prevalence ".

And on the other hand Kevo cites another research where he says the opposite and I quote:

"Drug-induced Parkinsonism. Drug-induced parkinsonism (DIP) is the second most common etiology of parkinsonism in the elderly after Parkinson's disease (PD). Many patients with DIP can be misdiagnosed with PD because the clinical features of these two conditions are indistinguishable. ”.

Who should I believe?

This is science, not art criticism where you can tell everything and the opposite of everything on the basis of a self-styled authority and for your own use.

This is notorious too.

"People received drugs and surgery for the PD they didn't have"

NO. This did not happen according to the survey that you cited. They had Parkinson's and wrongly received treatment for conditions other than Parkinson's. I have notified you of your error and yet you deliberately persist in making the same error without any justification. At this point you have no credibility as far as I am concerned.

I catch up with someone who has 'cured' his symptoms regularly. He shows no symptoms now when you talk with him, however he has noted that of he drops his regime and the way he lives that he notices that the symptoms return within a period of time.

gginto profile image
gginto in reply to AaronS

Can u say what his regimen is that keeps pd at bay? tnx

from ADPA

o

I guess there would be "cures" possible if one had drug-induced Parkinsons...just go off the offending drug. Other than that, IMO no. There might be significant slowing of progress. I think right now that's the best we can hope for. And I feel pretty optimistic about that.

But in the future? With things like stem cells? Why not?

park_bear profile image
park_bear in reply to amykp

As far as I know there is no such thing as drug-induced Parkinson's. Certain drugs can induce tremors which can be expected to resolve upon cessation.

Parkinson's can be caused by toxic exposure but that does not resolve upon cessation of exposure.

kevowpd profile image
kevowpd in reply to park_bear

Drug-Induced Parkinsonism

Drug-induced parkinsonism (DIP) is the second-most-common etiology of parkinsonism in the elderly after Parkinson's disease (PD). Many patients with DIP may be misdiagnosed with PD because the clinical features of these two conditions are indistinguishable.

ncbi.nlm.nih.gov/pmc/articl...

park_bear profile image
park_bear in reply to kevowpd

Well okay then.

Years back someone here had an apparent case of drug-induced parkinsonism. It was not responding to levodopa, and a review of that person's meds disclosed 2 different meds known to cause tremors. Medication review should be standard practice as part of Parkinson's diagnosis. Should be, but all too often, not.

kevowpd profile image
kevowpd in reply to park_bear

This framework is part of why i am open to believing (and do in fact believe) that "healers" never had a degenerative synucleinopathy.

If a drug can induce parkinsonism that is indistinguishable from PD, there is no law that says a certain environmental chemical exposure (of which the patient may be completely unaware) couldnt do the same.

amykp profile image
amykp in reply to kevowpd

Not uncommon in the ELDERLY. It's pretty rare, really, I mean, it's not all that similar to what we have, so it's not like half of us might be walking around with it not knowing.

I know about it because my 90yo dad got it...he was getting very strong chemo for brain cancer and literally, between one week and the next he developed full-blown Parkinsons, like, stage 3 with all the fixings.

In his case, sinemet worked pretty well, which I guess it doesn't always?

Sadly, as if that wasn't enough for the poor man, he got Covid. That took him from us :(

Hikoi profile image
Hikoi in reply to amykp

At 90years I would want to die peacefully without all that medical intervention!

amykp profile image
amykp in reply to Hikoi

You think. But he didn't want to. He was active and healthy before he was struck suddenly...and struck blind actually. He really wanted to regain his sight--he lived for walking trips, and fiddling on his computer. And they gave him excellent odds because he WAS so healthy. His mom (my grandma) lived to 104.

He was doing well. The PD was a surprise.

BTW, when he got the Covid, we put him in hospice. Comfort only. That WAS too much, we all agreed. But it seemed so unfair (he had all the shots). (And you know, it's horrible. Family not allowed to be with him. Awful.)

laglag profile image
laglag in reply to park_bear

Because I have opened a discussion about drug-induced Parkinson's, I just wanted to let you know I haven't been diagnosed with it, I was just thinking it could be a possibility for the list of reasons. At one time early in my diagnosis I thought it could be a possibility. 🥊

You can go to YouTube, there on only two people ,one by using qigong Bianca Molle and another using similar modalities. Also some symptom relief using Dr. Joe Dispenza meditation formula.

Hikoi profile image
Hikoi in reply to akgirlsrock

And they are all self report with no independent verification. Could they be fake news?

you will want to watch a video from Dr. Perlmutter, helps a patient walk with glutathione, alot of other things that help on y ou t ube

Have you had this treatment? Or do you personally know anyone who has had this treatment? If so, how have they responded?

Or are you watching a 20 year old video made by a doctor with a reputation as a charlatan?

complaintsboard.com/perlumu...

If a person takes the trouble to read the entire thread at that link, one will find there is an offsetting positive review by user "beautiful day".

I have not reviewed all of Dr. Perlmutter's work, but he does get the issue of uric acid correctly – high levels are bad. There are some other MDs out there who misunderstand and get it wrong.

A single bad review does not make an M.D. a charlatan.

Hikoi profile image
Hikoi in reply to park_bear

But Perlmutter is of dubious reputation

thecut.com/2015/06/problem-...

One of the best and most curent resources I have found, is Brain Fables, written by Ben Stecher (patient) and Dr. Alberto Espay of the Cleveland Clinic. It is about 150 pages and summarizes where the field of PD research is and, more important, isn't, relative to both understanding and curing PD. It is not encouraging news for those of us who already have it. Their conclusion is simple, though fixing it is not. Parkinson's and Alzheimers are old ideas created to categorize a group of patients with similar symptoms. Researchers have treated these groups as homogenous when we are clearly not. The weird patterns in Phase 3 clinical trial results (some helped, some hurt, some neither) over and over again, can only be explained, not by concluding that all these researchers didn't do the trial correctly, but because the population of participants do not have the disease being treated as defined.

They recommend a restart of research to understand the aging process and what can accelerate aging. Also, regrouping clinical trial participants on the basis of their biology rather than their symptoms. Smaller trials, more focused trials, will produce results applicable to smaller cohorts. There is no cure for PD because, they believe, PD is a fable...made up years ago to explain a pattern of symptoms. PD as we now define it, does not exist.

stocktiki profile image
stocktiki in reply to Jana86

This is a fascinating comment. Hope shortcut.com says something similar in that PD is just a made up diagnosis when people have a handful of symptoms. Lilian is saying that what we think of as Parkinsons is simply a body flooded with too much adrenaline for too long, thus triggering fight, flight freeze response. It's also interesting as Dr. Huberman in his brain chemistry post says dopamine is the precursor to adrenaline. Basically when you're stressed you body turns dopamine into adrenaline in milliseconds. Similarly. John Peppers fast walking makes lots of sense as the walking consumes some of the excess adrenaline... Essentially fighting so you don't freeze instead. I feel like this thinking is right, but not sure how to apply it to get better.

Jana86 profile image
Jana86 in reply to stocktiki

Without knowing which cohort each of us is in, we can only experiment on ourselves and do what seems to help. (N of 1 experiments.) The one solid treatment that seems to help most of us, is exercise.

HekateMoon profile image
HekateMoon in reply to stocktiki

Wow. I can relate to this comment so much!!! On adrenaline overload for too long...

Please see pdrecovery.org - All books on that site are free.

Hello grandmaster727, In Joel Wallach's book, Rare Earth's Forbidden Cures, he gives nutrition information (maybe the founder of this web site wasn't thinking in that way, from what Gioc shared). Here is an example regarding something else, "In 1978, the first universally accepted diagnosis of nonhuman CF was made (Wallach) from the pancreas and liver of an infant rhesus monkey." "There was great excitement by everyone, including representatives of the CF Foundation until they learned that the CF in the monkeys could be reproduced with a selenium deficient diet."

PS, Regarding the web page given by Gioc, There was a picture with the founder of this web site and a Pope. If anyone is following a Pope, in Matthew 23:9 it said, And call no man your father upon the earth: for one is your father which is in heaven. (Edited Geneva 1599)

When I get my next series of blood work, I'm going to have cystatin c levels checked. it is a possible biomarker for PD progression. pubmed.ncbi.nlm.nih.gov/352...

Obtaining cys-c blood levels over time may be a more objective method than relying on symptoms to determine progression/regression of PD.

Rather than ask whether "anyone has been cured of PD?", we could ask whether "any PwP's quality of life has improved?". Here we can see many successes and some failures. But, it's not downhill all the way. While accepting that the progression of the disease continues, PwP can improve their condition, by optimizing their treatment regimen. Many can have a good quality of life for decades (I am 17 years post diagnosis).

As an example, for years my worst PD symptom was impacted constipation. I was spending hours on the toilet. When I found a way of controlling it (enema) my quality of life improved greatly.

In some ways, the focus on cure is at odds with the small, incremental approach.

Seems like way more than 69 replies. In summary, If you find relief of symptoms - You must not have had PD.

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