once Upon a Pill (A complete description ... - Cure Parkinson's
once Upon a Pill (A complete description of patients experience with dopamine enhancing drugs and supplements)
Not sure if that link did anything. Took me to a transfer site. Thanks though.
the link is to a pdf book. you have to download it
From Pdrecovery.org (my bolding):
Also, the book Medications of Parkinson’s or Once Upon a Pill provides even more information, and is available for free download on this website. Note: the dopamine-enhancing drugs cause significant distortion in the thinking processes: they often create the feeling that one is more clever or more capable than “other people.” We have seen, often, that people who are on the drugs are unable to understand the risks discussed in the website warning or in the above book. Their drugs cause them to assume that they are “different” from the cases we discuss in the warnings and the book and they conclude that the warnings do not apply.
Therefore, if you are taking dopamine-enhancing drugs, please have a friend or family member read the material and advise you, rather than trusting yourself. The medications work by making you “stoned” and inhibiting your ability to be wary. They diminish your ability to use good judgment.
I'm gonna pass, and i'm a bit surprised you arent doing the same, Farooqji.
Beaulieu‐Boire, Isabelle, and Anthony E. Lang. "Behavioral effects of levodopa." Movement Disorders 30.1 (2015): 90-102.
movementdisorders.onlinelib...
Abstract
In recent years, levodopa-induced behavioral changes have received increased attention in the medical literature and in clinical practice. The spectrum of these symptoms includes non-motor fluctuations with neuropsychiatric symptoms, compulsive behaviors such as punding, dopamine dysregulation syndrome, and impulse control disorders, psychosis and hallucinations, as well as hypomania and mania. Despite knowledge of the clinical features associated with these behaviors, many of them are probably underdiagnosed. Although the mechanisms underlying behavioral symptoms are still incompletely understood, recent data from imaging and pathological studies have increased our understanding and guided new treatment strategies. Appropriate management remains challenging, because reduction of levodopa (l-dopa) and dopaminergic treatment is often recommended; however, doses required for control of motor symptoms may still induce behavioral changes. Newer modes of delivery of dopaminergic treatment, deep brain stimulation, and nondopaminergic agents may either provide alternatives for treatment of these behavioral problems or permit treatment of parkinsonism with less risk of these behavioral disorders.
None of that goes close to supporting what was written on pdrecovery.org. If they wanted to express those kind of ideas, they could have used those terms. Instead, they said levodopa makes you "stoned".
Have you recovered from PD using the techniques espoused by JWH?
I'd say in terms of severity, the conditions described above are on par, or worse. Dopamine-enhancing medications definitely can have a psychological impact. Using colloquial terms such as "stoned" can be helpful in describing the personal experience. There is room for disagreement and varying experiences.
No, I have not recovered from PD using JWH's techniques, but I'm working on it, and I have spoken extensively with someone who has.
Pdrecovery.org implies that across the board, PD drugs work by making you stoned. The article you linked to talks about things are sometimes observed in some PWP.
Not the same thing.
"I know someone who has."
I doubt it.
That's fine. Doubt away.
I agree with you that the word « stoned » may be too familiar and not very elegant. However, that PD medications inhibit their users’ ability to be wary cannot be dismissed so easily and this is particularly true during the Levodopa blissful « On » times. Unfortunately every Ying comes with a Yang according to Traditional Chinese Medicine and the Levodopa « Off » phases seem to stress that very wariness (fear) at the root of the disease.
Have you recovered from PD using JWH's techniques?
Yes, almost every day if it weren’t a decades-long unending trauma known in the scientific literature as CTSD (Continuous Traumatic Stress Disorder) or CTSD (Complex Post-Traumatic Stress Disorder). In other words, it happens to me the same that happened to one of Dr Jeanmonod (Focussed Ultra Sound neurosurgeon )’s successfully treated patients:
« The patient had to be brought back in emergency to Switzerland because of massive gait imbalance, which started just after the mentioned discussion and made an independent trip back impossible.It took more than a year of psychotherapeutic support for him to be again able to walk without aid. These comments fit well with the demonstration in the literature of a strong placebo effect in Parkinson’s disease. »
Source : sonimodul.ch/wp-content/upl...
I do believe we are crowds of PwP in a similar situation.
I do not understand your answer at all.
Perhaps you are too rationalist and God this is a good thing, not any criticism on my behalf. Unfortunately, psychological stress is too often downplayed in this field (by neuros to start with) and this is one of Dr Hadlock's merits to have brought it to the forefront.
Your profile says you are taking madopar. Why, if you have 'recovered'?
I said recover every day but also relapse as soon as this happens because of that bloody stress that gets me stoned, to use the same word. I am confident that when stress fades away, I will be in a position to wean off of that medication, just like John Pepper and others did succeed in doing so.
Hi, how long do you have Pd? Do you use some medication?
I was diagnosed with PD about 5 years ago. I'm taking melatonin for sleep, and various supplements, but I do not take levodopa or any dopamine receptor agonists or anything like that.
Thanks for the reply. I was also without pills for 4 years but the symptoms got worse and I started the pills. I still believe in my recovery I heal myself in my own way because I am the cause. Do you have any symptoms?
Thanks for the conversation. Yeah, I wouldn't have been diagnosed if I didn't have symptoms, lol. They include loss of smell, partial paralysis of right arm and leg (bradykinesia), micrographia, minor tremoring, broken sleeping, etc.
You are welcome...all the best. Thank you for your answer. Stay strong.
You can get this book from Janice Walton-Hadlock's site, PDRecovery.org, along with her other works, including Recovering From Parkinson's (recently substantially revised) and Stuck on Pause.
She has been working with Parkinson's patients for over 20 years, and had Parkinson's herself. Her level of inquiry and insight is unparalleled.
Most neurologists prescribing drugs only see their patients occasionally. JWH saw her patients weekly and had them pay attention to drug dosages and symptoms on a daily basis.
First, she only decided that she had PD after years of working closely with PWP. She diagnosed herself and then "cured" herself. You can see why this is taken with a bit of healthy skepticism. People who diagnose and then cure themselves often have something to sell (re: John Gray).
In Hadlock's case, I don't think it was malicious. She really, really wanted to be taken seriously and honestly believed that she had a cure. I'll give her the benefit of the doubt by saying that she probably actually believes her claims. I think that she simply became too vested in her patients and empathy did the rest. Maybe she subconsciously wanted to show them that she could cure herself so that they would continue to believe in her methods.
I also think that she saw her clients getting into trouble with their meds, felt helpless to help them because (as she repeatedly explains) she wasn't a doctor and so couldn't prescribe medicines. This frustrated her and she kept doubling down repeatedly; she worked hard & studied hard, becoming something of an expert on addiction. She recruited several volunteers who helped interview many clients, who had PD and kept detailed journals. I think some of this work may someday be useful.
Over the last few years, I've spent a lot of time studying these books. I haven't really concluded anything 100% and I'll consider any new insights anyone would like to share. As of now, I believe that there are good points that are actually helpful (I've found the spiritual approach she describes to be powerful, though not a cure as of yet). Many of her other assertions probably reflect her inability to see that she might actually be causing (or contributing to) her clients' suffering and deterioration.
For example, she describes several cases in which she claims that her clients were "recovering" from PD and were (under her guidance) also rapidly reducing their use of various dopamine-related drugs. Over several years and many cases, she believes that she saw the same dynamic play out: her clients would be "cured" before they were completely off their medications, resulting in them having too much dopamine (the meds from their doctors + the dopamine being generated by their suddenly recovered brain cells). This over-medicated state was (in her theory) the cause of all the problems that came next. What came next was invariably a bad end for the client. Hadlock blamed their doctors because she couldn't blame herself. She also blames the medications, claiming that they have damaged the brains of those who've taken any of them, making them a kind of super-addict that can't come "down" off of dopamine (thereby contributing to the many failures she'd seen).
The last I heard, she had disbanded her group of volunteers and was semi-retired. I've heard that she still works with a select group of PWP; those whose brains have not been damaged by the dopamine medications.
This is my current take on these books. As I said, I think there are a few good things in them, and I'll try to be open-minded about the rest.
IMHO, she does a lot of harm to PWP, spreading fear of conventional meds (ie, meds that can actually help people!).
As to whether she happens to be right about anything, "Even a Broken Clock Is Right Twice a Day".
I can't disagree with your far more succinct summation.
She is a doctor, a DOM, i.e. a Dr in Oriental Medicine and this is why she was capable of offering to the world such a revolutionary prospect, a Chinese one by the way. She was also teaching psychology, the Western version, I presume. I am afraid she did not have anything to sell and the evidence is that her books can be downloaded for free, unlike similar stuff on many PD sites not to mention brand new PubMed studies...
Thank you for sharing your understanding. At least, it's not all negative.
Hi, thanks for your response.
One of the things that encourages me about JWH is her extensive knowledge about Parkinson's. She knows so many little things about it.
As regards to her own illness, JWH describes that when she first realized she had Parkinson's symptoms, she strongly dismissed it as the "Doctors Disease" (or something like that). She assumed that she was just identifying with her patients. However, she methodically went through her symptoms and their starting dates. She realized that many of her symptoms actually began before she ever was working with Parkinson's patients or knew much about the illness.
I understand the skepticism. I've also been through my own long process assessing JWH and her books. My assessment is more positive than yours. As I've written before, I'm impressed with the overlap between JWH's writings and polyvagal theory (which has empirical evidence). And personally, having had prolonged contact with someone who recovered following her protocol has certainly increased my optimism and hope.
Hi Elliot, can you bring me a brief in your own words of what’s JWH cure protocol is about it? Thanks so much in advance!
You might want to check out my friend's blog. He has an introduction, plus a lot more.
I'll dm you a link.
Western science typically recognizes two autonomic nervous system modes, parasympathetic (calm, relaxed) and sympathetic (fight or flight). Chinese medicine recognizes two more: sleep, and one called "clinging to life". JWH's understanding is that some people get stuck in the latter mode. She calls it "Pause" to emphasize that it is something you can come out of. It might be the mode that polyvagal theorists call "shutdown".
There are different ways that you can get stuck, and that affects how you go about turning it off.
Many people have an early life trauma of sorts, and they responded to the trauma with an instruction to themselves such as "life isn't safe; I must be hypervigilant" or "don't feel feelings." They may be inadvertently using "Pause" as a coping mechanism.
Other people have particular injuries in their bodies that convince the body that it is in Pause/shutdown.
In the first case, there is a mix of psychological and spiritual work to change your experience so that you feel more "okay" and can come off Pause.
In the second case, some simple treatments help (not acupuncture in many cases though, because part of the manifestation of Pause is that the Stomach meridian begins to flow backwards, and increasing electrical conductance with needles is actually counterproductive).
I'm aware that much of this may sound questionable or strange. But JWH is deeply and thoroughly knowledgeable. check out the blogs and read JWH's book, particularly her latest revision of Recovering from Parkinson's Disease. It's available on pdrecovery.org.
Oh, I should add that following her protocol really can only be done by someone who is off levodopa medications. Trying to work her program while you are on dopiminergic meds like levels can be DANGEROUS. Quitting these drugs very quickly can also be dangerous)!!! She has had a policy of not working with people who had been on dopamine-stimulating medications for more than 3 weeks. Once Upon a Pill goes into painstaking detail about the issues with levodopa, and gives guidance for anyone who wishes to change levodopa doses.
