Anatomy of a Myth

Anatomy of a Myth

[*Note: 'Willful dupes' comprise that segment of a given group of people (take the HU PD forum group for an example) who believe ANY hope is better than no hope. They are the segment that is so desperate for some sense of hope that they willingly accept as fact any 'hope' that is dangled before them - even false hope. It is through this inevitable segment of the population that myths are allowed to propagate and charlatans are allowed to thrive - to the detriment of all.]

In order to arrive at the 'truth', one first needs to be able to distinguish anecdote from fact. Take for an example the Youtube video (below) of Norman Doidge M.D. (who is on a Dutch talk-show to promote his book) talking about the curious case of John Pepper. Beginning about 30 seconds into the clip, Doidge embellishes his account of JP's case by stating as 'fact' a couple incidents he has no way of knowing or proving. It is based entirely on hearsay from JP.

In the first instance, it is only by accepting and then repeating as fact JP's own dubious account in which he blames a lack of coordination - 50 years prior - on "early signs of Parkinson's", that Doidge now has ammo to hype his book (perhaps we all would have been sport stars if not for those darn "early signs"?).

In the second instance about 30 seconds after the first, Doidge is again stating as 'fact' an embellished account of something he - a psychiatrist with a book to sell - has absolutely no way of knowing or proving. In describing JP's experience with Sinemet or "l-dopa" (an event which incidentally took place 25 years ago, in 1992), Doidge claims, "initially he [JP] had a good response to it, but then he started to get side effects and the response started to wane".

If such loose conjecture (aka 'literary license') delivered void of eye-contact and with excessively shifty body-language fails to raise a healthy degree of skepticism, perhaps a couple of JP's OWN accounts of his Sinemet experience shared in this very forum PRIOR to Doidge's book will.

A few years ago in JP's 'Why do very few doctors prescribe a monotherapy of an MAO-b inhibitor, instead of immediately prescribing levodopa medication?' post, in a rare off-script moment during an exchange about his original Essential Tremor diagnosis (a NON-parkinsonian condition), JP admitted to 'Hikoi', "Other than doing regular energetic exercise and getting rid of the major causes of stress in my life, I only took Eldepryl, except for three months in 2002, when my neurologist said I should start taking sinamet… Because I had got most of my movement symptoms under control, at that time, and because the sinamet did nothing for me, I stopped taking it, after three months. I also stopped going to that neurologist, or any others, since then, for my Pd." Source: healthunlocked.com/parkinso...


In an even more revealing reply to 'Idq1997' (in the same exchange about JP's original ET diagnosis), JP conceded, "I took selegiline for ten years, with no other Pd meds, other than in 2002, when my neurologist advised me that I will be needing to take sinamet, as I had been on selegiline for a long time, and would be needing the sinamet. I took it for three months and becuase it did nothing for me, I stopped taking it... I am aware that this could mean that I do not have Pd, as sinamet is often used as a test for Pd..." Source: healthunlocked.com/parkinso...

In other words, JP was administered the standard 3-month "levodopa challenge" in order to confirm a parkinsonian condition - and FAILED - thus contradicting Doidge’s 'literary' depiction of the event. MOST notable, however, is his acknowledgement at that time of like likelihood that, "I do not have Pd".

The logical MINIMUM prerequisite for someone who presumes to write a book ambitiously titled, "Reverse Parkinson's Disease" should be to FIRST be able to demonstrate a confirmed diagnosis. The DaTscan, "the FDA-approved imaging agent which provides an assessment of the integrity of the striatal dopaminergic system via the dopamine transporter to help physicians determine whether patients have essential tremor (ET) or a parkinsonian syndrome (PS) movement disorder such as Parkinson’s disease (PD)", will help accomplish that. Source: genewsroom.com/press-releas...

Thus far, however, 25 years since his original ET diagnosis (1992), and 15 years since self-publishing his first edition of "Reverse Parkinson's Disease" (2002), JP continues to avoid this test like the plague. Rational minds should wonder why.

Perhaps the most important, and most sacred 'marketplace' on the planet is the marketplace of ideas. Ensuring the highest quality of product requires us all to be discriminating consumers of the ideas delivered. Meanwhile the myth lives on...

Last edited by

17 Replies

oldestnewest
  • What anti-JP folks miss is that JP believes what he says. What anti-JP folks miss is all his information is offered free on his web site.

  • What pro-JP folks tend to miss, RP, is the fact that the "FREE" info magnet (which draws you to a homepage with a prominent "PAY NOW" button) has been used since Apple came out with its first PC in order to troll for the 'willful dupe' contingent. I suspect the fact that JP is currently on a 4-month, all-expense-paid world tour with the new wife has also evaded your radar(?).

  • A 4 month cruise? I would rather be water boarded.

  • Yeah, I live in a small town, it's like taking a whole town with you on a cruise.

  • JP believes what he is preaching so very enthusiastically. I seriously doubt it weather he's gotten rich from selling his book. However I do agree with your one point it would be wonderful if we had a proof of a scan and put this matter to rest.

  • Is JP, the former CEO of Proctor & Gamble, presumably wealthy & in no need of a book royalty? Or is the JP that posts to HU one of the other John Peppers of the world? Just hope JP is THAT accomplished and resourceful JP of P&G. As a worldy businessman of means he probably employs a media staff to do this sort of online (HU) work and is not bothered by the negative. With that thought I should say I will start mentally putting JP's posts and replies into the never mind category. :(

  • J P is one Parkie I did believe. Do you see any similarities. Hyperfocus. The push to air your mind because you just want to help. I do know that there are people out there like JP but they are very rare.

  • PD Conscience, I agree with the need for critical analysis and desperation can lead us to be blinded and deceived, however, I read JP's book and the take-home message for me was: 'vigorous and sustained exercise is good medicine'. My neurologist ( A very highly regarded physician in Melbourne) stated; 'exercise is equal in effectiveness to drugs for you'. There are pages of information from scientists stating the same, whether it be fast walking, dancing etc.. That is not to say drugs are not effective in relieving symptoms, it is to say that we may feel better if we, in addition, pursue exercise. The take home message of Norman Doidge for me is, question everything, be prepared for positive changes, keep an eye out for alternative innovative therapies...after all who would have thought ten years ago that the 'gut' and apparently what we put in it, was connected with a brain malfunction like Parkinson's?

  • Coling, It's universally accepted that, as you note, 'vigorous and sustained exercise is good medicine'. If you caught the title of JP's book and the numerous claims therein, however, you would find that he doesn't leave it at that. In promoting his current 4-country, 4-month roadshow (for one example) he steps well beyond: "I have decided to come to Europe, UK & USA to show people, personally, how to use their CONSCIOUS BRAIN TO CONTROL THEIR WALKING AND OTHER MOVEMENTS!"; followed by, "[In previous events] I was able to show everybody who was brave enough to let me show them... There were no failures... I am sure that everybody who shuffles and/or freezes is immediately able to walk properly, even people in wheelchairs…”

    Source: reverseparkinsons.net/2017t...

    Promising "people in wheelchairs" the ability to walk again is where I begin to have a problem.

  • Reminds me of a tent revival in the 20s

  • The interesting fact about PD is that positive expectations cause the release of dopamine. IOW, the placebo effect is therapeutic. So, unlike a paraplegic with a severed spinal cord, it is within the realm of possibility that a PD patient could get up out of a wheelchair and walk when the "miracle worker" comes to town. That does not mean the effect is long lasting, nor do I endorse making false promises.

    That said, I strongly object to labeling people taken in by these promises as "willful dupes". They are simply mistaken and to take it to this extreme is arrogant and condescending.

    I am a believer in science as a method; not science as a cudgel.

  • Eh?!

  • And your point is?

    Norman Doidge's book is a welcome breeze in a sea of hopelessness; the idea that you can take an active part in your mental status and well being is empowering., not bad to take an active part in your status.

  • If JP won't have a DAT SCAN he is the charlatan I always thought him to be

  • I believe JP totally. He has PD and what this guy is publishing above is nonsense. I don't understand his motivation. I go to Cleveland Clinic and even they do not give DAT scan's and they are huge.

  • What a lot of emotion. Personally I like JP's optimism and his advice really can't hurt. The placebo effect alone is worth something.

    This site doesn't provide rigorous scientific fact ( some people laughably suggest we beg an invisible diety for help!) but just offers a few ideas you can take or leave. If you decide to take them it's advisable to research them further.

  • You have gone to soooo much trouble to build up a totally misleading story I have to wonder who pays you to do this and what your motives are?

    As I have said before, you are despicable!