"Many people have recovered from Parkinson’s disease.
The main focus of the Parkinson’s Recovery Project has been on figuring out, from the welter of methods used by those who’ve recovered, the commonalities that might link these recoveries.
If you go online, you will find many people have recovered from Parkinson’s disease. If these recovery cases are examined carefully, one finds highly specific commonalities among those who recover. Without even knowing the processes that cause idiopathic Parkinson’s, they have either 1) brought their attention to bear on an unhealed foot injury – usually an injury sustained in childhood or 2) made a significant mental adjustment: deciding that they are indeed safe from clear and present danger even if they let their guard down. For this mental adjustment, they may have decided to “trust a higher power,” or decided they are “safe, after all,” or simply given up on trying to use their own mental prowess to keep themselves safe from anything and everything.
In many cases, they have done both: they have gotten treatment or performed exercises that has brought their attention to a long-forgotten, still-unhealed foot injury and decided that they are safe enough that they can relax their guard or trust the universe or allow some higher power to be in charge of keeping them safe.
Many people who recover assume that, among the myriad practices and dietary changes they’ve played with, their more esoteric, elaborate, or difficult practices must at the root of their recovery, rather than the healing of a “mere” foot and/or ankle injury and/or their profound attitude change (deciding that they are safe, after all).
It can seem “too simple” to recover just from healing an old injury and/or changing a deeply entrenched mindset of wariness.
But if you look closely at the many approaches taken by people who successfully recover, one or both of these two events have always been a part of the process in every person who has recovered from Parkinson’s."
I've recently been reading their books, all of which are free and online. I'm impressed by this group's story, which is complex; equal-parts heartwarming, hopeful, and terrifying. It began when Dr Janice Hadlock investigated what appeared to be a simple and safe cure for PD. She applied it to several PWP who had been recently diagnosed. She claimed that it worked for these people, so she gathered volunteers and ran a non-profit clinic in Santa Cruz, California. Their problems began when they treated some PWP who were on dopamine-enhancing medication. This "PD Recovery Research Project" was basically a bunch of alternative-medicine types, and none of them was an MD who could write prescriptions (Dr Hadlock's doctorate is in Oriental medicine.) So they had to rely on their patients' doctors and neurologists to help with that. But legally they were not even allowed to suggest changes to meds, to either their patients or their doctors. They had to word everything very carefully. Anyone who's experienced the close-mindedness of some MDs/neuros can guess what happened next.
Several stories are told, but the most terrifying might be Rose's. By Hadlock's account, when Rose came to them, she was on a high dose of Sinemet and beginning to have dyskinesia. They applied their "cure" (not herbs or drugs, but oriental "life force" or chi manipulation, plus some fairly interesting mental exercises). It took over a year, but Rose brought her dose of Sinemet down very slowly, which stopped her dyskinesia, and she was beginning to "recover" from PD (fewer symptoms). Then her life was turned upside-down when her husband's own medical problems forced Rose to move far away to live with her daughter. Her MD had never been happy with Rose seeing an "acupuncturist" for her PD, so when asked, he told the daughter that Rose needed the full dose that he'd started her on, not the lower dose she was doing so well with. Hadlock claims that, because Rose had begun to recover, her brain had begun producing more "native" dopamine. The much higher dose, added to her native dopamine, produced an overdose. Rose quickly spiraled and ended up in a nursing home, still at the full dose, where she died a year later.
It's a fascinating read, even if you don't buy into all of their theories. They evidently had hundreds of patients (including some from other countries) from 1998-2010 (or so?) Hadlock claimed that they saw at least the beginning of "recovery" from PD in 90% of their patients within a year of beginning treatment. They kept notes on their weekly sessions and interviews, and their patients kept journals, so there might be a lot of data to mine?
I'm gleaning a bit of what might be useful information from the books. I don't buy into all of their theories, although some aren't impossible. But don't expect any response if you email them; Hadlock is semi-retired and working on updating the books. The group has evidently disbanded.
Also, due to patients like Rose, and many others, Hadlock very strongly discourages anyone who has ever taken dopamine-enhancing drugs (such as Sinemet or many others) to NOT attempt to use their methods to recover from PD. That probably includes all of us here. However, I want as much information as possible to get out to other PWP and researchers. If even 5% of their theories are right, that might be enough for others to make more progress.
"Stuck on Pause" lays out the main theories behind their basic approach, so probably start with that.
"Recovering from Parkinson's" has been very recently updated with the latest, but only the first 8 chapters so far, I think.
"Medications of Parkinson's Disease" or "Once Upon a Pill" is by far the largest book and has a lot of data about how meds might complicate PD recovery, while also laying out their reasons for discouraging doing it. I found myself rolling my eyes a lot, but have had to admit that it often makes more sense than I first thought.
"Tracking the Dragon" is part of a textbook that explains how to feel the energy (chi) flow that's supposed to help in evaluating someone's condition. (takes practice and you can't use it on yourself).
"Yin Tui Na - Hands-on therapy for traumatic injury" shows how the "light Chinese massaage" therapy can be used to heal old injuries. This one is a little harder to find the free download link to, but it is there.
Thank you JAS9 much for your thorough post & thank you Iqbal for this thread.
This has some resonance for me because in my previous life, I was a 10 mile per day runner when I stepped on the bottom of the broken beer bottle that was upright (while at the beach without shoes) doing severe damage to my foot at a time that I was being treated for PTSD from Vietnam, so both ingredients were prominent.
Also, I exchanged many messages with a woman who I believe is Danish (who was posting last month (forget her username)) who is confident she could make significant progress by addressing past trauma. (I declined to try her out only because I don't want to reopen VN.)
I do believe there's a boatload of people out there who, while they may not be 100% symptom-free, have made 90%-95% progress through some variation of cognitive therapy to resolve past trauma and/or meditation to reduce current levels of anxiety and stress.
Most of us are vulnerable to anxiety and stress and I've come to believe anxiety and stress accelerates our progression.
I like to think I have a very highly tuned bullsh*t meter, but I'm not about to write this off. You've certainly peaked my curiosity. Interesting material.
I thought her approach very 70’s when all disease was attributed to our thought processes and so we worked on ourselves seeking to be authentic and looking for self actualization, through encounter groups, psychodrama, Neuro Lingustic Programming etc etc.
It's worse than that. Much worse. I have it on good authority that she does not have the credentials or experience and is completely unqualified and in semi-desperate financial situation. Basically, it's a new business venture for her. So far, she has had 2 PWP, 1 of which gives her 0 stars.
(I deleted this comment previously, but ...) it's the 2nd time recently that my bullsh*t meter has failed me. It used to be able to tell bullsh*t instantaneously, from a mile away, even in the dark, but now clearly I need to trade it in for a newer model. Apparently, my PD interferes with its delicately balanced mechanism. I am mortified that I even entertained these 2.
Her username was "emotional freedom," but she has since been kicked off this forum. If she resurfaces under a different name, we will be able to figure it out from the content.
I rely on your bullshit meter Marc. I wonder if the batteries are a bit low. I could say I have badly sprained both ankles playing tennis, on separate occasions, and burned my shins on an earlier pyrotechnic adventure (set light to piled dry leaves in a wind driving towards a neighbours panel fencing). I also suffered a serious eye injury as a kid. So that's why I have PD. Or I could note that neither my father in law nor father (both with PD) have any obvious foot traumas, my wife and another friend with foot traumas long ago don't have PD, and I know hundreds at the eye clinic without PD.
Or just do that usual reality check - how easy is it to play on coincidence? This is the standard spiritualist trick "Does the name Ethel mean anything to a person in the room?" If yes - fish for questions about Ethel. If no, try another name. There are going to be a fair few people in the world, including some with PD, who have injured a foot. So maybe 10% of people with PD will say "hey, that's me, way to go - they know something"
The clue is in the first line of the 3rd paragraph of Iqbal's original post. It's a classic sales pitch - utterly unsubstantiated, and counter-intuitive. If there REALLY were lots of people with idiopathic PD who were cured, someone mainstream would have been aware of it by now. Lots - lets call 100 lots (although there are 10 million sufferers worldwide). Any chance anybody can name 100 people with confirmed PD who have recovered using anything at all?
Very well put. You put the final nail in that coffin. Thank you for saving me from myself. Something came over me. Yeah, that's it. I was temporarily possessed.
With one caveat. I believe there are 100 people who have "recovered," if by recovered, we mean symptom-free, but, of course, none of us would know all 100.
Of course it wouldn't apply to everyone, but I believe a surprising percent of the cohort, if when newly diagnosed, pulled out all the stops, i.e., 2 - 3 hours of robust exercise every day, fasting, diet, blah blah blah, they could be symptom-free or very close to it.
I'm quite satisfied that, if when I were 1st diagnosed, I knew then what I know now, I be symptom-free or close to it.
I believe there's been a few people on HU claim to be symptom-free. Sunvox definitely makes that claim. What about Silvestrov? Does he make the same claim? I seem to remember a couple others. What about Kwinbolt (SP?) I thought she said she runs marathons and perhaps I'm remembering wrong but I thought she was symptom free??
I hope you are right. I fancy being symptom free and I am at an early stage, so time to get it right. I am pretty sure, albeit with an element of faith, that you can significantly slow the progress and maybe limit the final extent of the disease by things like exercise, diet and microbiome management. But it's a boutique condition, different for everyone. So far, so good. I am drug free (well apart from the trial, which may or may not be a drug) and have "light" symptoms. But not symptom free
Yes. I can relate to that. I am struggling with the serve. The ball toss is with my left hand which is my bad side. In truth, at this stage I think it's in my head, not my arms. I can toss the ball properly when I focus. My real problem with PD is putting balls in, and worse, taking them out of my left shorts pocket.
I haven't played for 4 years, and always had this vulnerability to a mental block on a forehand feed, which now seems to have spread to forehand shots. I could do with a couple of hours remedial coaching but I can't find a coach in this part of the world. Might buy a tennis twist. No shortage of empty courts to practice one
Why not send a note to Silvestrov and ask if he is still symptom free. Silvestrov did not use Pharma but he did use mucuna puriens and many many supplements. In the SEARCH BAR write in MY LIST OF DAILY SUPPLEMENTS (Silvestrov). It came up Feb of 2018 and I printed it out.
Silvestrov was very honest about what he took, the research to back it up and WHY he took it for himself.
If I recall his dad had PD, but symptoms of his dad and he were subtly different.
Hi, I tried to access Silvestrov's MY LIST OF DAILY SUPPLEMENTS. It came up with ONLY the title of his post. When I put in Silvestrov's name I could not access it.. In addition I had to use the filter of "MY COMMUNITIES". My communities are PD and PSP.
You believe there are people cured but you are not-sure who they are and you have never met one.
You believe if you had been diagnosed earlier you could be symptom free now though you have no proof for this belief.
For peoples information Silvestrov was never formally diagnosed with Parkinsons. He believed that he was keeping it at bay through what he took but as he ddnt have PD in the first place it is impossible to say whether that was because of his actions or not - if you get my meaning 😇
No, Hikoi, you did not read me right. I never use the word "cured." Poo used the word "recovered" and I asked if he meant "symptom free."
And, I did not say if I were diagnosed earlier. I said if I knew at the time of diagnosis, what I know now, I would be symptom-free or close to it and I'm satisfied that's true.
You said "Silvestrov was never formally diagnosed," but then went on to say, "but, as he didn't have PD in the 1st place..." which are 2 different things. Not being formally diagnosed does not mean you do not have PD. It means we don't know.
Rich, as you will acknowledge, was a serious, no-nonsense researcher and if he thought he had PD, that would be a more reliable diagnosis than what many neurologist might offer since being 'formally' diagnosed is no more than a judgment call which the data shows a substantial portion of which are later found to be wrong.
If you're going to pick on me, you have to actually read what I say.
PS. You were right about one point (which means you're batting 25%.) I am not sure who the people are who claimed to be symptom-free, but I've read numerous such claims on this and other PD forums and I'm going to begin keeping track -- because it could be critically important for all newly diagnosed PWP to know.
I accept your criticism. I have become sloppy in my responses, apologies.
I dont accept that Rich was objective and familiar enough with PD to self diagnose. Diagnosis is more than a judgement call, it is based on universally accepted criteria, skill, familiarity and experience and still it is not always right.
I consider skill, familiarity, and experience to be a matter of judgment because it allows 2 different neurologist to come to 2 different conclusions, as opposed to a quantifiable, scientific measurement.
There are few, if any, people on this forum who have produced the volume of detailed research Rich has. I assume you've watched all of the videos?
Read about and look on Facebook for "Out Thinking Parkinson's" and Gary Sharp.
He has become virtually symptom-free. He has a lot of videos documenting his progress from diagnosis.
Of course, becoming symptom-free does not apply to everyone, because nothing about Parkinson's applies to everyone, but my contention, which I will prove over the next couple months, is some PWP can and have become symptom-free or very close to it.
Wow. Sobering is an understatement. I've skimmed this and will go back and read it, but what are your takeaways from this story?
My initial take away, and I reserve the right to change this after I reread this is; we are far, far too casual in automatically accepting the dosing prescriptions from doctors, i.e., we should do everything humanly possible to remain on the most minimal dose possible (of every PD pharmaceutical, especially levodopa) for as long as possible.
I would ask everyone to open Hikoi's link. Mr. Sharp's story may be too long for many of you to read and if it is, please just scroll to the bottom and hit the "like" button to show appreciation for his taking the time and making the effort to share this story.
If you read this story, it will spur you to action.
I find your take away interesting because as far as I know Gary Sharp had shunned medical help and was self medicating. I could have that wrong but he does talk about taking increasing amounts of levadopa. It was a doctor that got him off his high dosage. I do think that less is more and agree we should keep to minimal dosages but not at the cost of making our lives and those who live with us, miserable. Its a fine line.
My other take away is that this supports my contention that no one has as yet reversed symptoms permanently. We need to be wary of any claims that people make. Fred Phillips is another one who has had a crisis and has had to rely on conventional treatment to get him back functioning again.
Well wasnt Rose a silly billy doing what the doctor said even though it made her feel worse ! And as to the explanation of the cause of overdose it is very colourful but is not based on fact. It is one personsfantasy.
I think you are of the view that PD follows it's course with constant speed no matter whatever strategies are adopted by the patient. Nothing can slow it down even exercise?
Perceptive and possibly right. I only accept things that are proven and perhaps exercise does slow progression though I think we need more time for that to be truely apparent. I do think we all have different types of PD with different rates of progression. As it is over 50 years we have been treating PD I think any simple cure would have been noticed by now.
A good attitude to the condition, exercise and eating well can make a big difference to our wellbeing. This may be largely a psychological effect on wellbeing or it may be largely physiological. I expect it is a mixture of both and varies from person to person.
Thanks, I think the same. There are a few people who have considerably subsided the symptoms by adopting these strategies. In the absence of any cure , exercise and diet are the current best
if pd can be cured why is ut not widely available this makes me angry some of us are struggling with this shite condition and don't need quacks saying they have found a cure it gives false hope sorry to be caustic but it sounds like a load of shite
In all the interactions I've had with the web, I never imagined I'd post a link to the etymology of "shite" - en.wiktionary.org/wiki/shite . Quick summary - it's pronounced as it's spelt, means the same as shit.
And that you will never be able to prove. However you had PD already when you had your foot problem, and as PD is always progressive I believe its safe to assume you would at some stage have arrived at where you are now
I believe neurological diseases are in fact neurological injuries. And the cause is a combination of factors.
1. Psychological/Emotional
2. Physical trauma (esp. head)
3. Chemical/Toxic exposure
No one gets through life without experiencing these events, but why do some get sick and others don't?
This is where genetics and epigenetics factor in. Research has shown that certain people are more vulnerable to neurological injury than others due to MTHFR defects, PON 1 defects, and defects in pseudocholinesterase. These are detoxification pathways. I don't consider them "defects" but rather normal variants that expose vulnerability in modern life.
A lot of us have the MTHFR variant, 40% or more of the population (I have 2 mutations). You don't have to dig deep to find a MTHFR defect connection to Autism and vaccines. Adults are diagnosed with "autism" too. They used to call it vaccinosis but that would be too obvious these days. How many of us are fully unvaccinated?
PON1 is involved with metabolism of xenobiotics, infants do not possess pon1 until after 6 months of age. Myelin is not fully formed until after 2 years of age. (I carry 3 paronoxinase defects and pseudocholinesterase deficiency.)
The chemical assault to our brains often begins before birth. We have cognitive reserve, but emotional trauma in combination with physical injury depletes this resource.
It's important to embrace the concept that you do not "cure" an injury - you heal it. The body has an amazing capacity to heal itself.
You start by healing unresolved emotional trauma. This is an important contributor to oxidative stress.
You heal the physical trauma by supporting the body with nutrition.
You heal the chemical/toxic trauma by detoxification.
Rarely is it a single event that tips us over, it's cumulative, until there is no more capacity to compensate for toxic insults.
And we can take into consideration the fact that our DNA, which we pass down to the next generation, is being continually altered in innumerable ways, by traumas we experience, the choices we make from day to day, and the habits we develop throughout our lives, etc. When we live healthful lifestyles, we pass on to our children a heritage of stronger and more resistant bodies. The same things can be said of our (and their) mental, moral, emotional and spiritual characteristics.
Thanks, everyone, for contributing to this discussion. There have been a few reactions that I’ll try to address.
What are these people? Fraudsters? Or are they well-meaning alternative-medicine types who might have stumbled across something important that could possibly be studied?
I haven’t gotten into the theories behind this group’s therapy treatments, so let me do that now. The foot injury theory is just one small part that everyone seems to latch onto. It sounds silly to me too but bear with me a minute.
So what’s the big hypothesis behind all of their efforts? It’s very similar to the “stuck in Fight or Flight mode” theories, with one big difference: In the really old Chinese medical documents, they speak of another mode, one that translates to “Clinging to Life”.
It’s rarer, as it only triggers when someone is near death and needs to ‘play dead’ or conserve all energy to stay alive. Some theorize that when we “go under” for an operation, the anesthesia simply triggers this mode. We might also be able to trigger this mode by telling ourselves to deaden our responses.
For example, as a 7-year-old, I was beaten daily for several months by a neighborhood bully. If I wanted to play with the other neighborhood kids, I had to let him punch me in the stomach, slap me, sit on me, etc. for as long as he wanted. And he wanted to do it until I ran home crying. All of the adults thought I was lying or making too big a deal of it, and they told me to “grow up”. So I told myself that whatever he did, I wouldn’t react. That’s what I did, and it worked. It worked so well that I’ve continued to use this trick. And that kind of thing is what Dr Hadlock is calling “stuck in pause”. She thinks that about 90% of her patients had triggered “Cling to Life” mode (or what she calls ‘pause’) in this way.
Normally, a person (or animal) who’s actually in a situation of imminent death will eventually look around and decide that it’s safe, literally shake themselves out of this mode, and go on with their life. But when we command ourselves to do it and never turn it off, we can become stuck.
“Cling to Life” (CtL or pause) is significantly different than “Fight or Flight” (FoF), but there are similarities. Both use the sympathetic nervous system, but the big difference is this: pause tells the muscles to shut down (imagine a mouse cornered by a cat), to lower body temperature, put on a facial mask of death. Don’t move because your life depends on it! Sound familiar?
In contrast, Fight or Flight tells the muscles to kick into high gear. Under FoF mode, our brain doesn’t use dopamine, it uses adrenaline (called something else in non-US countries?) to move us fast. During CtL mode, our brains even stop producing dopamine almost entirely because our brain is “playing dead”. Only the limbic (lizard brain) and risk assessment areas of the brain are prioritized.
But, you may be wondering, if we’re stuck in CtL mode, how can we move at all? We can still over-ride CtL with adrenaline if we have to. This is well-studied in FoF; our brain’s response to adrenaline is immediate and precise: “move your shield up to block that battle ax!” And that’s what the sympathetic system is so good at.
So, as PwP, that’s what we do constantly; we command this or that part of our bodies to move in a specific way and our brains use adrenaline to execute those commands. Very often, people who later get PD have excelled at sports or business because we are constantly pushing ourselves on with adrenaline. However, eventually, the adrenal system becomes tired, because it was never intended to be used constantly.
Compare all of this to the parasympathetic nervous system, which is used by the “Relaxed and Curious” mode. It doesn’t use adrenaline constantly; it uses the lower-priority and less stressful dopamine. Commands to muscles aren’t specific death-defying orders; they’re more like general requests: “I’d like a glass of water.” And before you know it, you’re holding a glass of water. Most of us have forgotten what that even feels like.
Some of you have wondered how “recovery” from something like this is possible. Their theory is that, over decades of under-using dopamine, the dopamine production centers shut down and the adrenal system is too tired to support all of the brain’s functions. By getting back into Relaxed and Curious mode we can begin to use dopamine more. Over time – maybe a year or more – the dopamine infrastructure (producers and receptors) can be re-built.
This is what they claim they saw in their patients; they would start to have longer and longer periods of normalcy as their “native dopamine” production slowly increased. I can get into more detail, but for now, I’ll just say that you have to feel safe to turn off CtL. It's not something you can fake. And maybe that’s where a foot-massage might help? I personally suspect that the old foot injury idea came from someone who had that kind of training: the old “if you have a hammer, everything looks like a nail” adage. So how, specifically, do you break out of “Cling to Life” (pause)?
In addition to foot massages and talking to an interviewer once a week, their patients were taught to use some interesting mental exercises to stimulate certain parts of their brains; parts that, when active, help us to feel safe. It’s all in the books and I’m getting tired, so maybe next post I’ll tell more about that if there’s interest.
I was a therapist (among other things) in my previous life, so I can confidently write that feeling safe is at the core of Hadlock's theories and treatment. And, at the core of THAT is learning to be crystal clear and honest with yourself; the "person" you're trying to convince resides in your own mind and knows as much about you as you do. This means that just thinking "I feel safe. I feel safe" isn't going to cut it. I'll do my best to provide links and page numbers to get you started.
I'm very interested in more info. Claire Weekes talks about this very same thing but for people who deal anxiety and panic attacks [like myself]. She has a program to switch nervous systems but again it is geared toward those with anxiety... who obviously don't feel safe. Her program is helping me. I would really hear more about what you have learned.
Well, "learned" might be stretching; all I've done is read through the books - except I'm still working on the 600+ page one that's full of technical jargon and hyper-details on one case study (which isn't even all that interesting).
I'll be working on answering questions all day today, so if I don't get to yours right away, please check back. In order to keep my posts small, and to avoid posting copywritten material (even though it is free) I'm going to be providing links and page numbers within these books.
Definitely interested in learning more, especially about :
"During CtL mode, our brains even stop producing dopamine almost entirely because our brain is “playing dead".
My symptoms began when I took the conscient decision to "accept" all kinds of undeserved blames, lies, etc, from some siblings. I accepted this in order to start attending family gatherings, after many years of my boycotting them.
When I did this in novembre 2016, my pd symptoms abruptly started... I kept going to gatherings for one and a half years and absorbed hurtfull behaviors, time after time, until I realised that no matter what I said or did, the abuse was not going to stop.
So I stopped going to gatherings, stopped answering emails, got them out of my life again. But I am stuck in this "playing dead" position... Seems like the damage is done.
I always believed it had something to do with my pd. I often tried to convince myself they cannot hurt me anymore, but deep down I know it isn't so.
Thanks for sharing that. Even though we're anonomous here, it can be difficult to do. I'll be working on answering questions all day today, so if I don't get to yours right away, please check back. Although I've read through almost all the books now (except some long, detailed technical stuff in "The Medicines of Parkinson's Disease"), I am faaaar from an expert on this.
I've just anwered ConnieD's question, which applies to both you and me. You and I both need to process our pent-up feelings. We must take real steps to truely feel safe. What will do that for you? I'm doing that by "talking" with my best friend, Harlan, who died recently. I know it sounds strange, but it does make me feel much better. But what makes me feel completely safe? I'm still working on that.
I was a therapist before PD, and I would tell my clients to imagine someplace very safe, then imagine whoever you need to "clear the air" with and tell them whatever you need to say. You're completely safe and in total control. Much better than saying it to them in person and letting them do what they do!
As I come across other things that might help you, I'll add them here.
Below are two snippets taken from one of their (free) books. They don't claim that this idea of exercising certain portions of the brain is unique to them. In fact, since Dr Hadlock and her group drew much of their ideas from people who have claimed, over the years, to have recovered from PD, it shouldn't be surprising that there are examples online of exactly this (see links below). The striatum and thalamus are nearly silent in PWP, but when activated they give us a sense of belonging, being connected to others and the universe; in a word "safe".
"In the first exercise, the person should treat all thoughts and spoken words throughout the day as if they were part of a silent two-way conversation with a “friend”: a deceased beloved friend or relative, a “higher power,” some saint or sage, or even a beloved, deceased pet. And when I say “two-way” I mean potentially two-way. Grandma might be silent, but the assumption had to be that she was listening and could reply if and when she felt like it. The friend had to be someone you could laugh with, someone who loved you in an easy-going, honest manner. It could not be a stern or spiritually “superior” critic. The thoughts need to become all-day, fun conversations and not the usual obsessive, silent monologue that is characteristic of most people with Parkinson’s. This stimulates the striatum, the brain area that exhibits increased activation while thinking of a God with whom you could converse."
(Snippet from page 86)
"For many, it felt ridiculous, at first. They were embarrassed to be “talking to nothing.” And yet, if they stuck with it until their friend seemed real and then eventually added the thalamus-stimulating request of “let me feel your presence” or “let me feel your joy and love inside of me,” their long-running use of pause mode (*which is what she calls the 4th Chinese mode which translates to "Clinging to Life" - somewhat similar to "Fight or Flight" - see her books for more) turned itself off. When they finally felt internally stable and safe enough to come back to life, pause mode turned off. The Parkinson’s ceased. Recovery symptoms began."
Finally, here are a few links to people who have used prayer, meditation, etc. to recover from PD:
Finally, finally, I'll just mention another simular way that one might be able to trigger recovery; what she calls an "epiphany". Here's another snippet from the same book, page 68:
"What I failed to connect, for years, was what led up to each person’s epiphany: a vigorous, even bitingly honest and profoundly intimate communication with someone or something loving, invisible, and outside of and separate from oneself: behavior that can stimulate the striatum, a brain area that is inhibited in people with Parkinson’s disease.
I didn’t learn about that connection until I stumbled across some radically new brain research in 2015. This research showed the relationship between the thalamus and striatum and a person’s ability to feel connected with something outside of himself and larger than himself, or mentally communicate with something outside of and larger than himself, respectively.
After reading about this new brain research, I went back over my notes and realized that every person with an epiphany-type recovery also had a very long history of regularly talking to someone outside of himself, either a spiritual figure or a departed loved one. During the epiphany, they had just taken the relationship to a higher degree of trust or let go of some mental distancing."
Sr Marie was cured through the intercession of St. John Paul ll. The nuns in her community prayed for Sr. Marie’s healing, it was one of the miracles that led to his being declared a saint. It was a full and instantaneous cure.
This post is just to cover the basics from their introduction, and some preliminary disclaimers, warnings, et. I will be adding answers to specific questions by adding posts to those questions (not here). I will be using links to the online books, which are free. If you have trouble with the links, let me know.
First, everyone reading this should know that Dr. Janice Hadlock, DAOM, LAc is not a western MD, but a Doctor of Acupuncture and Oriental Medicine.
Also, you should take a look at the disclaimer and warning here (be forewarned, it's a bit depressing): pdrecovery.org/medicated-pa...
If you're still with me, I believe that their warnings should be taken seriouisly, but merit a whole new conversation. Let me focus on answering questions first. Here are the two basic ones:
Q: How do we get "stuck in CtL (pause)"?
A: There are 4 ways to get stuck. There can be combinations of these. The single most common of these is "self-induced pause". pdrecovery.org/wp-content/u... (Page 11)
Q: How do we get unstuck?
A. Just as there are 4 ways to get stuck, there are 4 ways to get unstuck. Again, you may have a combination of them to deal with. Some might take longer than others. Same link as above, Pages 12-13. Short case studies follow.
I will add more detailed answers as I go through the books again over the next few days. I will be answering each submitted question as I can by replying to the question's post.
Recurrent foot and ankle injuries were exactly what I had in the years preceding my diagnoses of PD and severe dystonia !
Do they suggest specific ways to deal with this type of trauma ? Perhaps they have never healed completely, although I did receive treatment for each and apparently got well every time.
Yes, there's quite a lot of material here that explains what might be happening and how to deal with it. In short, Hadlock recommends using Yin Tui Na, which is a type of light-touch therapy. It sounds very mysterious but it's really very simple. Here's a snippet from one of their free books. A link to this free book: pdrecovery.org/wp-content/u... (Page 2)
"The two hands don’t do anything except hold, firmly, until such time as the patient’s subconscious mind starts to feel safe enough to pay attention to the area being held, at which point the patient’s injured or painful area starts to move on its own – often in motions that suggest relaxation of tension or motions suggesting a delayed follow-through and response to the original injury. During these movements, the therapist keeps his firm, supportive hands (usually the palms) pressing on the patient’s skin or clothing, while allowing his hands to be carried along by the spontaneous movements being made by the patient.
That’s it. Sounds too simple? It is simple."
If the injury really isn't completely healed down deep, the above might have to be repeated many times until the healing is comlete. But once the subconscious mind's attention is drawn to the injury, it should heal, and you should just "know" when it has.
There's also a section in another book which describes, briefly, how to do this in other ways (you ask someone you trust to examine the injury and tell you if it's healed or not). I can't find that right now, but I will as I go back through the books. I'll add anything I find here.
But the very first thing you can do, if you can find a Qi Channel Flow practitioner near you, is have them check the flow of your chi (if you believe in that sort of thing). I gather that they're pretty rare, but if you can find one, they should be able to tell you if your trauma was resolved or not. Or you could find someone willing to learn how to do it. It takes practice and you're not supposed to use it on yourself. Here's a link to the first part of a textbook that tells how: pdrecovery.org/wp-content/u...
From what I remember, Howard Shifke's protocol is very similar. He was definitely aware of her and gives Janice Hadlock credit for some insights on his blog. fightingparkinsonsdrugfree.... He and his wife had already been applying Asian medicine for several years and applied some of the same techniques that Hadlock suggests: Yin Tui Na and sensing the flow of Qi, as well as Qigong. In his book, he describes how difficult and painful it was to not take any PD drugs. Hadlock very strongly discourages the use of PD drugs if you're going to use her techniques to recover from PD, so they also agreed on that. Shifke describes his wife giving him foot massage every night and doing his best to practice Qigong every day. Hadlock promoted these things too. I remember that he was vegetarian or vegan, and Hadlock doesn't mention this, so that's a bit different.
I don't remember what else he suggests. It's been a couple of years since I read his book., but as far as I recall, they don't disagree very much. One thing that I found interesting is how Hadlock and Shifke differ when they refer to disease. Hadlock puts everything into scientific terms; she promotes the idea that ancient concepts such as Qi are actually the same as modern concepts (electrical and chemical flows that western science is only now discovering). Shifke promotes the view that diseases are similar to intelligent spirits with motives:
"Parkinson’s likes to hang around and make us feel like we have to have it forever. It knocks us off balance physically, which leads to knocking us off balance mentally (anger, frustration, depression), which knocks us off balance spiritually (we give up hope). Drs. Sha and Walton-Hadlock are correct – we have to reverse the order to beat Parkinson’s at its own game."
I'm not encouraging anyone taking "dopamine-enhancing" drugs of any kind to try this approach. Hadlock goes further by discouraging anyone who has ever taken these drugs for more than 3 weeks. So, if you do try it, please be sure to study the books first so that you know what the dangers are. That's a whole other discussion worth having.
Thank you so much; I am completely aware of that. But; Requip and Azilect did very little for me, and gave a lot of side effects. Even my neurologist admits this, and he is very reluctant to give L-dopa. I am now on low doses of Requip and Azilect, and think about gradually decreasing and stopping them entirely. Perhaps there might be a washout. I also tried thiamine, with marginal benefit.
Meanwhile, I've had the impression (from my humble inquiries) that;
1. L-dopa could be considerably more harmful for the brain than dopamine agonists.
2. There are PwP's who were able to recover even while taking a low dose of ropinirole.
Anyway, nothing is certain, and there is no guarantee. It would be nice to ask Dr. Janice Hadlock.
Why does it matter if someone has taken dopamine in some form? Is the concern mainly of overdose as in the case of Rose? In Howard Shiftke’s book I believe one of those who was healed was an elderly woman in a wheelchair with Pd and her daughter did the medical exercises he prescribes with her mother. I mention her since she most likely would be medicated.
Believe it or not, I did try to keep this short, but there are literally hundreds of pages in “Once Upon a Pill” that explain why it could be a bad idea. She offers many theories, based on years of observation. I’m not saying that I agree with all of them, just that it’s complicated, so this is long. First, here's my attempt to provide some foundational 'facts' without distractions:
•People without PD (PwoP) can’t survive long taking even relatively small doses of PD dopamine-enhancing meds ('meds' from here on) including anything with L-dopa. But PwP can and do. This, evidently, is our super power.
•Using Hadlock’s recovery protocols there is a distinct “switching on” event; before this event, one has PD, after this event, one does not have PD and enters the “recovery process”.
• While the recovery EVENT is nearly instantaneous (one minute you are “stuck” in "Cling to Life" mode, the next you aren’t) the recovery PROCESS isn’t (it takes some time for muscles, etc. recover from years of PD).
• As it's now 'normalized', your brain instantly begins to produce more dopamine (this ramp-up could take days or years). Remember that "normal" brains are unable to survive even relatively small amounts of added dopamine over an (unknown) limit.
•The time it will take to reach one’s recovery EVENT is hard to predict; it could take an hour or a year or more.
•Once the recovery switch has been flipped, you can’t un-flip it (the recovery process can’t be stopped or slowed down).
In Hadlock’s words (Page 5 of "Once Upon a Pill"):
•“We had learned from our relentless patient interviews that PwP were nearly impervious to addiction. Many had quit smoking, alcohol or stronger drugs, simply by deciding to do so. Not one of our patients had ever had difficulty in overcoming an addiction – though many had used addictive substances.”
•Dopamine, for people without Parkinson’s, is more addictive than cocaine, nicotine, and the various opiates. It's been known since the 1960s that [people without a condition that causes dopamine deficiency] can't tolerate additional high amounts of dopamine.
•And yet, when PwP take these medications, they can often tolerate them very well at high doses. This immunity goes away the instant that the recovery process begins.
•When PwP in our project recovered from PD and their brains normalized (which could happen very quickly) they began producing [more] dopamine. They then became susceptible to addiction and intolerant of the drugs. [Their native dopamine, added to dopamine from the drugs could easily cause an overdose effect.]
•Horribly, if a person recovered and continued to take the drugs at a level that was even slightly too high (as evidenced by the usual side effects of excess dopamine) for a period of more than seventy-two hours, that person could become lost to an extreme form of brain damage and addiction, utterly unable to ever overcome the new, physiological need.”
When Hadlock’s group began, they didn’t know any of this, so they started their patients who were on meds on two programs simultaneously; ween them off their meds slowly while they also began the work leading to recovery. But time after time the recovery event came before they were off their meds. Some of them died because their docs didn’t understand what was happening and Hadlock wasn’t allowed to suggest dose changes. One patient who she refers to as “Buzz” basically went cold turkey and nearly died. He survived though, and as of about 2012 was doing well. (Page 409).
But what if, instead, you come off your meds, and only once you’re off of them begin the work that will trigger the recovery event? Using Hadlock’s advice to come off the meds safely can take over a year, depending on your beginning levels. If you wait until you’re completely off your meds (a year+?) before you begin the work leading to recovery (another year+?) you might have to survive without PD meds for over 2 years before recovery starts.
However, according to Hadlock, even this approach has major difficulties and dire consequences if you get it even slightly wrong:
(Page 30) “People who were taking drugs for their Parkinson’s disease apparently had two problems, not one: they had Parkinson’s disease, and they also had drug-related problems. If they ever, even briefly, had been overmedicated, manifesting adverse effects, they seemed to have permanent brain damage from their medication. Even if most of their PD symptoms vanished and they stopped the drugs, they might have residual, long-term, drug-induced symptoms such as tardive dyskinesia. These manifestations of the brain damage are similar to the symptoms of Parkinson’s disease; in fact, they are called ‘drug-induced Parkinsonism’ in the medical literature.”
According to her, this damage makes it unlikely that full dopamine production will ever be restored, so the patient will have to take a small dose of meds forever. BUT if you get that dose even slightly too high, that “extreme form of brain damage and addiction, utterly unable to ever overcome the new, physiological need” could happen to you.
You might think that you’ll be different; you will do it perfectly, suffer as long as you need to, and never give in to the lure of meds. But, keep in mind that (if she’s right) you won’t quite be you anymore; your Parkinson's immunity to addiction will be gone. Are you sure that you’d never take a dose of meds slightly earlier than you should? Slightly more just to feel great again?
Sobering indeed. Thank you for this explanation. Interesting if I understand correctly that it’s not lowering the meds that’s a problem but stopping them all together could be. I know we have a forum member who was able to eliminate Sinemet after starting a keto diet and had been on it for I believe 7 yrs. I don’t know if his Dr followed him closely or not.
Oh, no. I just brushed over the difficulties of reducing meds. But at least she has plenty of protocols for doing that. For example, not reducing by more than 10% steps and (usually) waiting 10 weeks between reductions. According to her, the limbic part of our brains takes that long to adjust - or to throw a tantrum. She strongly suggests having someone who can be a gate-keeper to dispense your meds on time and dose, and possibly even hide them from you if you and your limbic become unreasonable.
I've reduced my meds twice now. I'm down 20% and it's going smoothly enough. I'm pretty sure I was overmedicated, so reducing is a good thing, regardless of whether I ever go for the "recovery". I think that HDT is making it easier than it would've been.
That makes sense, thank you. It makes me think of celebrities that go to rehab who are free from all drugs and doing well for a year or two next thing you hear they fell off the wagon one night and take the drugs again once and die. I used to think why would one time kill them but I heard a Dr. explain when they try it again they don’t go back to the dose they started on they go back to the dose they last took which after being clean for a period of time is now way too much and they overdose.
Just one more quote, in case anyone is attempting (like me) to simply reduce my meds:
(Page 18) "Now, when people ask me for more information about drug reduction, I tell them that their starting point is the National Institute on Drug Abuse (NIDA). The NIDA website is a treasure of information about dopamine. Log on and do a search for “dopamine,” the latest information on the role of dopamine in drug addiction will pop up. Armed with this information, patients are less likely to humbly submit when their MDs assure them that their drugs are not addictive, or that their drugs are not causing their dyskinesias, paranoias, and 'tremors' [tics]. If the patient’s MD insists, despite new evidence, that the drugs are benign and non-addictive, the informed patient understands that any journey through drug reduction is one that he must do by himself, most likely without any help from his intelligent, well-meaning, but under-informed MD. Another patient researcher is born."
Hi, I've been lurking on here for months, this is my first post. I'm a 48 year old man - I've tracked my first PD symptom, a shaky foot, back to 2007.
I'm speaking up now because I traveled to Santa Cruz in 2011 to meet with Janice and the Recovery Project. I must say to the people on here dismissing her as a quack (with very little information) - that is just wrong.
Janice is most sincere, and like Dr. Costantini, not seeking to profit off her work. Her (all free) books are dense and fascinating. Though I had leaned towards skepticism of such things, she had what I can only describe as a Buddha-like presence/energy. Very powerful. And she is on to something. I look forward to the revised books and I'd recommend them to any PWP.
I read some of her work, which I discovered after four months on c/l. Indirectly, it's what brought me to this forum. I absolutely believe she is sincere and has done a lot of research. The one thing I have not seen (and I have looked) is a direct testimonial from anyone who has gone through her treatment successfully, other than in her books. If her method works on drug naive PWP, it should be shouted far and wide so that it can be found by those looking for alternative treatments prior to taking levodopa in any form.
I agree completely. One theme throughout her books is the tendancy of many neurologists to say... well here's a sample:
"Zoe saw Dr. Pender every six months. On her first visit to him after she started in our program, he noted that she was doing very well. He even wrote on her chart that she might be overmedicated. Zoe brought me copies of her doctor’s notes. At her next visit with Dr. Pender, he wrote in her chart that possibly she had been misdiagnosed.
But the next report was even more important. Zoe showed me a photocopy of the notes Dr. Pender had written up: he had noted that he did not know why this patient had pretended to have Parkinson's disease for six years.
I was excited. Zoe’s doctor was a big shot at an important clinic that specialized in PD. I could understand his feelings; if he had misdiagnosed her, he was in a bit of a spot. Therefore it must be that the patient had pretended to have PD for some crazy reason of her own."
Still, there should be some testimonials from the patients themselves somewhere. I will look.
In 2014 or 2015 I joined a yahoo group that had supposedly been formed by some of JWH's original patients. But none of the "recovered" were active while I participated, leading me to wonder if long-term recovery was actually achieved. It was 12+ years later, but you'd think there would be some record, somewhere. That yahoo group is what lead me here.
This is how it starts. Desperate people looking for anything that might help. One of them finds a leader, someone making claims of experience and hope saying exactly what they want to hear . A doctor , or faith healer, or supplier of medicines or just a quack saying that there is a vitamin or herb that is a cure, or a saint or a holey shrine where you can leave your crutch that you will no longer need. Then a cult group forms attesting to the miracles and cures. No amount of scientific or rationale nor logic will dissuade them so they gather together quietly away from the criticism of others and support each others fantasy complimenting each other,and reinforcing the big truth , the fantasy. This has gone on for centuries, maybe back to the beginning as we leaned on the religions and supernatural to reassure ourselves that we were not helpless or alone.
"Normally, a person who’s actually in a situation of imminent death will eventually look around and decide that it’s safe, literally shake themselves out of this mode, and go on with their life. But when we command ourselves to do it and never turn it off, we can become stuck."
I believe this coincides with the following "Cell danger response" explanations by a regular Doctor from the University of California School of Medicine:
Cell danger response (CDR), is a natural and universal cellular reaction to injury or stress.
Robert K. Naviaux, MD, PhD, professor of medicine, pediatrics and pathology at University of California San Diego School of Medicine, posits that chronic disease is essentially the consequence of the natural healing cycle becoming blocked.
"The purpose of CDR, Cell danger response, is to help protect the cell and jump-start the healing process," said Naviaux, by essentially causing the cell to harden its membranes, cease interaction with neighbors and withdraw within itself until the danger has passed.
But sometimes CDR gets stuck. At the molecular level, cellular equilibrium is altered, preventing completion of the healing cycle and permanently changing the way the cell responds to the world. When this happens, cells behave as if they are still injured or in imminent danger, even though the original cause of the injury or threat has passed."
I think the reason there is so much difference in opinion is that old school says that the immune system works by distinguishing self and non-self. The latest theory that this is grounded on is the idea that the immune system distinguishes rather between things that might cause damage and things that will not.
Has this theory been advanced or collaborated by any science or accepted at any medical schools ? Of course building theory based on a theory is always tenuous at best but can prove the original theory sometimes.
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