Generally, I don't believe any such claims, but I feel different about this one.
Diagnosed with PD & MSA
1:06 mins, April 11, 2022
Generally, I don't believe any such claims, but I feel different about this one.
Diagnosed with PD & MSA
1:06 mins, April 11, 2022
Rethinking Parkinson's Disease, was my first PD book I read after diagnosis. Was rather septic at the time. After seeing the video and 2 years of experiences richer, I can definitely share your positive feeling.
I don't have an hour at the moment to list (bookmarked it). If you have time, what worked for him? Why do you feel more positive about this?
It's too involved for me to cover briefly. Check out his book where he goes into his regimen in detail.
Diet, meditation, exercise, right attitude, a few unnamed supplements, and other hand-waving. Nothing new nor remotely revelatory.
Some very questionable claims - particularly about his quick, apparently drug-free, recovery from "advanced Parkinson's", "Multiple System Atrophy", and having to crawl along the floor, sing to speak, and dance to walk (while still holding down a responsible job).
Yes I agree on that point. My husband is at the advance stage of Parkinson’s Multiple System Atrophy and unfortunately cannot move a muscle. However I keep alert for any suggestions that have helped other people, why not !
Think I will remain sceptical
Small steps and a ‘Can Do’ attitude is a great reminder. You don’t need to buy the book he says a lot of stuff to help you understand your own self/body.
Thank you for your comment. I can assure you that my story is true.
I have not been "cured" and, if I am foolish and work too hard, eat the wrong food, put myself under too much stress, then I start to develop a tremor again and, I am sure, if I continued to be foolish, would develop PD symptoms again.
I have told my story to let others know that we don't have to wait for a "cure" if we are prepared to work really hard, trace the causes of our symptoms, use proven strategies and, slowly, we can regain our heath.
I am now 80 years old, work full time, and enjoy a good life provided I am smart and live well.🙂
Thanks for sharing your experience and what had worked for you. Exactly I’m curious about your position on dopamine supplements. Sinemet versus Mucuna versus nothing. My Dx was five years ago and overall I’m doing great. I have a similar strategy to you in that I do a lot of different things and don’t believe that there is any one silver bullet. It’s the collection of all of the effort towards health and wellness that will get me to where I want to be. And meditation has been a big part of that. I was lucky enough to be trained in transcendental meditation when I was a teenager. But I do take both the standard sinemet as well as the extended release to keep a baseline amount of dopamine in my system. And I thought I caught in the video that you said the medication‘s are not good. Curious as to your thoughts on that. Thanks for any insight you can provide!
Hi. No, I am not anti-medication, but do warn against over-medicating.
Meds can alleviate symptoms, but will not slow or stop the illness process and can disguise the progress so causing us to relax our efforts to get well.
Research, a very large study, has shown that the levodopa drugs are the best for symptom control long term, but only at low to moderate doses (up to 400 mg daily).
If taking levodopa, we MUST take around 1000 mcg folate extra each day to mop up excess homocysteine.
Because we now know the causes of PD, we can focus our efforts on reversing the causes of our individual symptoms.
Thanks for the info. I take a wide variety of supplements based on bloodwork and hair tests and my naturopath’s observed deficiencies in her PD patients. Folate is one of them. I go back and forth on how much meds to take and sometimes do it by feel, rather than a prescribed regimen. I think the most challenging thing about this disease is that it presents so differently for each person and requires a relatively unique and multi-varied approach , and it requires a lot of effort and discipline to overcome it. My hat is off to you for making it happen for yourself and putting in the effort to share it. Folks in my local support group sometimes ask me what I’m doing that is working so well. Initially I would eagerly share the laundry list of things I do on a daily and weekly basis. But after a while it became clear that no one wants to put that much effort in and they would even get annoyed with me that I would suggest it.
Axter I agree. I haven't got an hour to watch this. Is he claiming to have cured himself ? If so has he gotten his neurologist to confirm and had it officially broadcast ?
But yes 40 for a book ! Is obscene profiteering from people's misery.
I wonder though, 40 for a book, or thousands and thousands for meds to big pharma companies that only have one goal, to keep you as their customer.
I agree big pharmas main motive would appear to be profit. But 40 for a paper back book ? To be fair the author is probably not a billionaire and likely needs income like most of us, so shouldn't be judgemental.And if it's successful and develops into a mainstream technique then i guess it will be adopted into other cheaper formats by others and he will likely become famous and rich anyway. Then everyone wins.
The discussion really should be how effective it is.
The publisher sets the price.
The book took over 2 years to write and another year to edit. That is, at least 3 hours daily, every day.
I get about $3 from each book.
My income these days (and I have worked full time for 64 years) is around $40,000 per year. No savings and no superannuation. My illness and my son's early death cost me everything.
I am not crying poor - I live a good and happy life - but don't try to claim that I am getting rich from my book.
I would love to treat people for free but, to do that, I need another full time job so would have no time to treat anyone or write books.
Crewman I already said that your unknown situation should not be judged. But 40 for a book is significantly more than I, or most people i know, have ever paid. If at the other end of the spectrum someone can charge 6.99 then questions spring to mind on the reason for the large difference. Your income of $3, as the creator, seems a very small percentage . So some other body must be accounting for the difference.
Id suggest that If you could get it published at a more competitive price then youd sell more, become more accessible to others and reach a wider audience.
Sorry to hèar of your sons death crewman.
$40 is way too much but it is available at £6 in the kindle edition at Amazon. (I generally agree, if I had the cure or route to full health, I would gladly share it freely,)
I have spent days and weeks presenting at conferences and webinars for no payment at all.
My practice pays me about $40,000 per year and, from that, I care for myself and my wife who has a traumatic brain injury.
I get about $3 from each book, so not really a fortune.
You sound very angry and I don’t blame you but it might be beneficial to your body to take steps to manage your anger x
Hi, I assure you that my anger is very limited, I only get angry with the scoundrels who exploit others. And then I tell you that a little anger is good for you, you don't have to be a boiled fish all your life, you also have to fight for the right things . have a good life
$8.50 on kindle. Can't complain about $8.50??
Every PD health guru I know of with the exception o f Daphne Bryan (Mercola, Joe Dispenza & Dr. Dale Bredesen are multi-millionaires, Laurie Mischley charges $3,700 for a 5 day session, Dr. Michael Okun (UCF) & Dr. Ahlskog (Mayo Clinic)) sell books for $40/.
I could name dozens more.
It (PD knowledge) is their expertise. They are entitled to profit from their years of research.
So have you replicated his result by deploying his approach? Because ultimately that's what actually matters with all of these recovery method pushers. Him. Pepper. Bianca Molle. Any evidence of reliable replication?
kevo,
Point well made. I haven't, but then I haven't followed all his recommendations - yet.
Equally important, what may work for one, may not work for others.
Bill Curtis comes to mind. Should I doubt his claims because his regimen hasn't worked for me? I don't.
Marc
But it should work for some others. As i've said in another thread, i've never seen someone claim that they have replicated John's result? Have you? If not, why not? Surely there has been no shortage of attempts.
If/when I do, I won't expect the same level of benefit.
I used to doubt everyone's claims of complete symptom relief, but then there is always the real possibility that a regimen may well work for one person, but not for anyone else.
It may also be that in many such cases their regimen has nothing to do with the benefits claimed - which I believe is what is happening in most such cases.
Coincidence and dumb luck.
Marc
There are a number of reports and have been some TV reports, but pulled quickly by medical "authorities".
There is an open-label retrospective study of 59 PD patients showing improvements in 56 (by 1.5 stages), 2 stayed the same and one got a little worse. Pretty good results.
My "approach" has been replicated and each person who has become symptom-free has returned to their neurologist to report, and has either been rejected or ignored.
It is scary for those locked into a tightly controlled medical system to think that they may have more to learn.
You've provided no evidence for any of your claims about replication. None. Claims of replication are not evidence. Nor has anyone seemingly heard from any of these supposed success stories independently. Perhaps part of your methodology is that one must permanently move to an area in which there is no internet.
Daphne is British. Otherwise is yours not a comment on the US health industry?
both of you guys are correct
there are a TON of con-men ... shysters out there...
EXAMPLE: see my post on
parkinsonsprotocol.com
TOTAL FRAUD who deleted 90% of the web page the day AFTER he saw my post here that revealed the fraud ....
------------------------------------------
on the other hand ...
for people who are devoting their lives to SINCERELY finding cures and relieve our symptoms .... they deserve whatever our capitalist- free enterprise system will bring them
I find books like this helpful. He’s not making outrageous claims. If you don’t have a Kindle, you can also read it online if you purchase that way. When you think about it the Parkinson’s protocol PDF, which pops up everywhere on the Internet, and does make outrageous claims, costs $50, so the Kindle version of this doesn’t seem too bad. But either way it doesn’t seem like there’s a right or wrong way. You can choose to pursue this information or not. And it is nice to be able to decide which choice is right for you.
Good point.
I do highly recommend this book.
Its probably the title of the original post 'John Coleman tells us about his recovery from Parkinson's' which suggests a cure.There are a number of non pharma techniques that help with my pd but it isnt a cure. Its either slowing it or the brain finding new ways to do things. But unlikely a cure or recovery.
Would be good if he had any neurologist he's ever had to write the book preface and confirmed his changed condition and improvements.
Since working in IT for 35 years I have an aversion to looking at screens for long periods so kindles aren't for me and I suspect not something many of the older generation generally use either.
Me too. (I much prefer books.)
I agree I would rather read an actual book and I do not want to try to read a whole book online - maybe an article even a long article is okay online but not a whole book and besides if you have a real book you can put bookmarks in the areas that are the most helpful and refer back to the information
Moving with the times though, just a matter of getting used to. All kinds of screen adjustments are possible so that it is also pleasant for the more traditional reader. Taking notes and colour markers is fine with kindl, without damaging your book. And of course ideal for translations, but most of you don't know that inconvenience. At Storytel you can read this book 'for free'. If you are not a member, 14 days free trial subscription possible.
I have never claimed to be "cured" or to have a "cure".
There is no cure for anything by anyone.
However, we CAN recover our health by finding and treating the causes of our symptoms.
I have NOT been cured and know that, if I choose to revert to my old lifestyle, symptoms will appear again.
I live without symptoms because I choose to and that is okay by me.
I think it's symantecs. Parkinsons symptoms as I understand it are caused by the loss of certain brain cells. To me 'Recovery from parkinsons' means recovery of the lost cells or at least stopping the decline.
I do believe life style changes can help, as can intervention techniques, toward negating lots of symptoms. If you're claiming to have negated all symptoms back to normality that's great for you. Whether that's a Recovery from Parkinsons ...depends on the interpretation of Recovery
It will be useful to widen your research base so you understand the actual causes of neurodegeneration and inflammation.
Yes, there is cell loss but Victoroff, Lipton, Mate, Van der Volk and others have shown that these cells can be either repaired or replaced given the right environment.
Call it what you like - I live without symptoms after being diagnosed (by neurologists) with stage 4 PD in 1995. That's enough for me.
Hi John, I congratulate with you on the results you have achieved. Have your patients reported the same results as you?
Yes, there are a number of patents who have become symptom-free and others who have reduced their symptoms significantly.
Not "cured" but living healthily.
There is no doubt that the key to regaining wellness is our own efforts rather than any "protocol" or "cure".
Those patients who have succeeded in reversing symptoms have been dedicated, patient, persistent, assiduous in their activities and have always looked beyond medical nocebo.
parkinsonsprotocol.com is a TOTAL FRAUD
see my other post
Plus he is literally repeating what some others like him have said, that PD has helped him learn to truly care about and love himself. To me that sounds like the perfect gift... hard work, but I'm dead set on it now.
Marc, thanks for posting this. I found it to be highly inspiring, and a breath of fresh air. He is not professing a "cure", but saying symptoms can be reversed and you can be better. The interviewer drove me a bit crazy, however. And kindle price is certainly affordable
The only thing I would disagree with is his recommendation for Bowen Work. I did it for several months, and it was great for a while, but I believe some of it exacerbated my right hand and shoulder tremor. Also Bowen folks are very hard to find in the states. And not cheap either of course. But I am certain that when she worked on my neck injury, she made my tremor worse ... and it has only gotten worse since sadly.
As with any therapy, the quality of practitioner and their training varies.
Bowen as been shown to produce a thixatropic effect on our fascia which enhances absorption of nutrients (and meds), increases mobility and improves immune function.
However, those inexperienced in treating people diagnosed with chronic disorders (PD, MSA, PSP, ALS, MS Lyme, etc) sometimes treat too heavily or attempt to much at each treatment, so can cause aggravation (like too much medicine). I write about this in my books.
that's exactly how I felt. She overdid it and caused permanent damage.
"...You can cure a pig by turning it into bacon...😘 "
Never would I make any reproach to those who make a good and honest business when there is an opportunity. I've written cca 20 books in a dozen languages ... No one's interested. Yet these books deserve interest because they're good. They're funny. But the marketing starts at the other end, not with the book but with the reader. The community of PD people, literate in English and who can afford the book, is large enough for a good business. With such a book, I am really sorry that the author made only $3 per copy. He should have fought for more, and no doubt if there is another edition, he will. $7 would hardly be enough, anything up to $9 possible. Then, the name of the author comes in and/or alternative publishers (the more, the better). Competition has the best impact on marketing. So he could push up the price by ... let the imagination fly... All this to say that such a book has potential, wheter in a "Calvinist or Catholic" milieu, for people get ill in both and most of them can afford $40 for a book. Cars are expensive and no one makes a fuss over it. But expensive books are no good. Indeed, if by some divine decree, the price of all books was reduced by 50% or more, the selling of books would not change dramatically.