Hi !
I often see people here mention "the honey moon period" which, as far as I understand, is supposed to last about 5 years. When does it start - upon diagnosis or when the first symptoms are observed?
Thanks for your answers!
Best regards
Mojca
Honey moon period in Parkinson's - Cure Parkinson's
Honey moon period in Parkinson's
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narcisa956
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Five years start when starting sinemet
narcisa956 in reply to
Oh, really? So this is the period when the drug is helpful without major side effects /off periods?
in reply to narcisa956
Doctor Costantini says no dyskinesia while on B1 and sinemet
I am still waiting for it
narcisa956,
I can't remember the forum member who posted a chart that showed how the "honeymoon period" varies very significantly from person to person. One thing that was clear from that chart is that some people have little to no honeymoon period while others might have a 10 year honeymoon! So, although it seems to exist for many PWP, it does not look like anything you can actually count on to any extent in terms of accuracy. I remember my first impression when I looked at that chart was that I was saddened to see that some people stumble right into this disease at full speed ahead with no real honeymoon period to speak of. ☹️☹️☹️
Art
That chart can be found here. Scroll down a bit after you open the link.
mdsabstracts.org/abstract/p...
That's the chart I was thinking of park_bear, thank you for posting it! I was just looking at that dot in the upper left hand corner, arghh!
Art
Thanks!
Expectation and anticipation are relevant here. If you are expecting to get worse, you focus on symptoms and worry that they are getting worse. I know that I am lucky, but I work hard at staying in the honeymoon period and focus on the positive. I expect to stay as good as I am now. I am 10 years in, on little medication, and people, when they meet me, don’t know that I have anything wrong with me. Beware of what you are creating in your imagination.
Good point! Sometimes my imagination runs wild and I see all kinds of disastrous situations....I have to learn how to control my thoughts which is not easy, especially since I am a born pessimist :(((
At the risk of upsetting certain people, may I recommend that anybody who has been diagnosed with Pd, should first investigate using exercise as the first way to go about dealing with Pd?
With exercise, and specifically fast walking, there are no side effects and the goal is to reverse the symptoms, rather than treat the symptoms with medication, which not only has side effects it also does nothing to slow down the progression of the Pd.
I have been medication-free for seventeen years and my symptoms are at such a low level that they give me no real problems.
I have done fast walking for twenty-five years and, at the age of 85, still live a good life.
Thanks, John, for the encouraging words. Do you use walking poles?
John - it's not either/or, exercise AND medicine is the way to go. Exercise has lots of scientific support to show it's beneficial, but it hasn't been proven to slow progression - see youtube.com/watch?v=FRry2Jz... .
Your antipathy to Levodopa and other medicines because it doesn't slow progression ignores the fact that the majority of people with Parkinson's need it in order to function on a daily basis. It's wrong for you to urge people to avoid prescription medicines. If you don't need them, fine, but the rest of us do. And there's no reason to avoid taking them early on, as soon as you need them.
No! If I did, they would slow me down quite a bit and the speed of the walk is what causes the brain to produce the GDNF, which repairs my damaged brain cells.
John, how fast do you have to walk to repair brain cells?
Thanks.
Natasha
The answer is, "AS fast as you can!".
If it helps you, your body tells you if you are walking as fast as you can:
1. If you can say more than three words between breaths, then you are walking too slowly.
2. If you can only say two or three words between breaths then you are walking at a safe maximum speed.
3. If you can't say anything betwen breaths, you are walking too fast!
John do you wish to respond to any of the comments made by Horace99 in this thread.
John Pepper makes claims - notably that fast walking has some GDNF related benefit that makes it superior to all other exercise - that are not supported by science. His story about his Parkinsons changes over time, usually if not always in order to support whatever point he is trying to make at the time.
The clearest indicator that John's Parkinson's is either not Parkinson's (its probably essential tremor, but who knows) or an incredibly rare form of mild parkinsons (so rare as to make his experience useless for other PwP) is that he is able to function at all after having whatever he has for 27 years (or however long it is) without using any medication. Any genuine >5 year PwP knows that the idea that training yourself to walk fast is somehow going to substitute or be superior to well targeted medication simply because the available medication doesn't slow progression is just the most ridiculous concept. It's madness. Some people cant get out of a chair without CL. Johns advice to those people? Start fast walking and stop CL because CL doesnt slow progression. Seriously.
John's response to any kind of criticism is usually to build the straw man idea that his detractors are anti-exercise (or that they are part of an anti fast walking conspiracy organised by unidentified group that presumably also faked the moon landing and planned September 11). Which is incorrect. Personally, I am in favour of as much vigorous exercise as people can handle. Im anti people peddling unscientific ideas as fact, because I understand that people with chronic illness have limited time, resources and energy and that they should therefore be guided in a fashion that allows them to deploy their energy, time and resources in the most effective fashion.
Walking is better than no exercise at all, but the idea that John's particular brand of walking has some specific and unique anti Parkinson's effect that is superior to other exercise is complete nonsense.
The reasons John's ideas gain some traction is that absolutely all of us would love nothing more than for them to be real and correct. Can people imagine if fast walking ACTUALLY did what john says it does?
Gioc in reply to
IMO Response
Surely you have a lot of energy like Pd suffer to stay here and contradict Jonh and he has it too.
I dare not imagine what a great help it would be if this energy that you have, were directed towards creating a positive effect.
With a little responsibility on our part, which is taking care of people instead of fighting, we will all have a nice gain, but this is not a matter of energy, but of will and ability towards a positive goal.
in reply to Gioc
I disagree that energy devoted to calling out those that consistently (and relentlessly in John's case) present misleading information is misdirected. I have no issue with people reporting their anecdotes of successful alternative remedies but John presents his indormation as scienfitic fact which it is certainly not.
If you think its a positive contribution to tell (often vulnerable and more often desperate) sufferers of a chronic illness that they can slow/halt/reverse their symptom progression using some particular technique that is not supported by any empirical evidence, then I disagree with that, too.
Gioc in reply to
Sorry Horace, but personally I do not recognize myself in the caricature of a patient with PD that you do. I have PD but I am not stupid, worried for the future more for the weight on my family than anything else. I have three neurologists who remind me that scientifically the PD has no cure or known cause. I read the posts on HU to find the answers I haven't found elsewhere for one reason or another, even simple questions about the disease. So I don't need someone to evaluate for me the things I read and tell me what to do, what to think and what not to look because ugly and bad. If you can scientifically prove that Jonh is wrong, do it. Jonh, for his part, must demonstrate the results of his protocol if he wants a follow-up. Repeating the same success will not bring any follow-up unless he proves that it works the same for others. The road of research / discovery has always been steep uphill for everyone, always. The results always make the difference for me, for Jonh but also for science. Since no one has shown anything as a cure since now, they are all experimental pilot projects to be demonstrated, i.e.in a "maybe". This is IMHO the context in which we operate.
Here in Italy it rains ... always better than the earthquake while it is raining. Only a thought to the Albanian friends.⭐️
in reply to Gioc
I'm pleased for you that are capable. I haven't painted a caricature of PD patients. I said that those diagnosed with chronic illness are often vulberable and desperate (note that i didnt even specify PD and i said "often" and not "always"). That is true whether you think it applies to you or not.i I have not suggested you should be stripped of your right to judge things for yourself. Go for it!
In science, that which can be asserted without evidence can be dismissed without evidence. There's no empirical evidence (and no, people ffeeling a bit better after having a walk or John repeating his claim thousands of times does not constitute evidence) supporting John's claims about fast walking. He has an anecdote. It's an anecdote that he has used great energy (a book, a website, speaking tours, goodness knows how many forum posts) in distributing, but it's still an anecdote.
If I went to the same effort (a book, a website, all the rest of it) to say that masturbating not only slowed the progression of PD because it stimulates the neurotransmitter receptors in the brain, but also that it was superior to all other forms of exercise, would you challenge others to prove I am wrong? Or would you perhaps be a bit skeptical of my claim?
As I already explained, I have no issue whatsoever with people posting anecdotes about their experience with any kind of remedy, both typical or alternative. When people post things as fact that are not supported by any evidence, I may see fit to point out that out. Im not going to apologise for that.
This shouldn't be an issue for anyone. John can continue to do his thing and those of a that think his message needs a little bit of extra clarity can continue to do ours. Everyone wins, since as you say, we can all read for ourselves.
There's no reason to be afraid of a little fact-checking.
Gioc in reply to
"that which can be asserted without evidence can be dismissed without evidence"
The quotation from Hichens, who was a journalist writer, is not appropriate in the research/discovery since very often it is based on fortuitous discovers and insights that are later proven.
in reply to Gioc
Its perfectly appropriate in johns case. His supposed discovery is now 20 years old. If he is able to 'prove' it, I'm positive that everyone will sit up and take notice.
Science doesn't validate every single claim until they are proven invalid. That's not how it works at all.
Gioc in reply to
🙄🤟🌻
rescuema in reply to
John Pepper's claim is not entirely baseless. Please see the below study that shows that high intensity exercise does help stall the disease progression for people with de novo Parkinson disease.
jamanetwork.com/journals/ja...
in reply to rescuema
Except that john doesn't advocate high intensity exercise. He specifically states that it is inferior to medium intensity exercise, which the study you linked concluded was not worth further investigation.
85 percent your heart rate max is not walking.
rescuema in reply to
I prefer to extrapolate from studies, not be slave to the specificity nor the exact criterion. JP mentions above that he walks at a pace that he could manage to utter only 2-3 words between breath, so this tells me that it is not medium intensity and he is indeed raising his heart rate adequately to reap the benefit. There are so many variables that contribute to a diseased state such as deficiencies, toxins, genetics, etc, so if running or fast-walking could possibly help, all else equal, I’d say it’s definitely worth a try.
in reply to rescuema
I hardly think repeating the results of the study you cited is being a slave to specificity. The entire study was in part designed to distinguish between moderate and high intensity exercise.
John's position is that FW is superior to running and other "high intensity" exercise and that position is not what the study found, regardless of what mental gymnastics (of any intensity) you choose to undertake.
rescuema in reply to
No one can say absolutely whether running or speed walking is superior. The bottom line is that no matter who claims what, raising your heart rate high enough doing whatever form of exercise that you could manage or enjoy enough to stick to will be extremely beneficial to attenuate the progression.
in reply to rescuema
"No one can say absolutely whether running or speed walking is superior"
Agreed. Yet John does exactly that, which (along with his GDNF references that he uses to make it all sound more science-y) is my primary issue with his advice.
I'm all for exercise, as much of and as vigorous as people can handle. I said that in my first post.
in reply to Gioc
Well said, Gio. We should be positive.
JohnPepper in reply to
Giving credence to people like 'Horace' only encourages them in their quest to deride others, who refuse to be led like sheep in a direction that on;y leads to misery.
He claims that there is no scientific evidence that GDNF does anything to improve our condition. He obviously is blind to anything that goes against his claims. These are just a few websites I have picked up in other HU posts, that are positive about GDNF. Perhaps he missed them somehow.
ncbi.nlm.nih.gov/m/pubmed/1...
ncbi.nlm.nih.gov/pmc/articl...
parkinsons.org.uk/research/...
parkinsons.org.uk/news/gdnf...
sciencedirect.com/science/a...
Let me correct his chosen way of understanding what I do and what has happened to me.
We can all understand the BIG Pharma's opposition to anything other than medication as a way to deal with Pd.
In my talks to people, all over the English-speaking world, EVERY SINGLE PERSON WITH WALKING PROBLEMS, INCLUDING MANY IN WHEELCHAIRS, WERE ALL ABLE TO WALK NORMALLY, WHEN THEY WERE SHOWN HOW TO USE THEIR CONSCIOUS BRAIN TO CONTROL THEIR MOVEMENTS!
Just to make sure he actually heard what I have said, EVERYBODY I SHOWED HOW TO USE THEIR CONSCIOUS BRAIN TO CONTROL THEIR WALKING, WAS ABLE TO WALK NORMALLY! Can he give us any evidence of anybody, who has taken any medication, and has then been able to suddenly walk properly?
It may sound as if I am claiming to perform MIRACLES! But I am not. I became aware, in 1996, that Pd affects anything and everything I do, about which I don't have to consciously think about what my arms and legs are doing. Almost everything we do is controlled by our subconscious mind! All we have to do is to take back that control those movement by using our conscious brain, as we did as babies.
Big Pharma is very powerful and they don't like people like me telling other people how to overcome their Pd. I DON'T TELL PEOPLE TO STOP USING MEDICATION AND START DOING FAST WALKING! I don tel people to START DOING FAST WALKING, if they can, and when they start to get better then THEY CAN START TO SLOWLY COME OFF THEUR PD MEDICATION, AS I DID!
If he chooses to turn that all upside-down, then that is his choice.
I recommend doing the FAST WALKING because it produces more GDNF in the brain and GDNF repairs the damaged glial cells, which means we then produce more dopamine.
Big Pharma is not going to pay for expensive scientific studies to prove this, why should they? There has been at least one study giving evidence of this, but I have not yet found it.
Perhaps someone could help me here?
in reply to JohnPepper
Yet again john argues against an argument that was never made. I never drew any conclusions about GDNF generally because unlike John, i am self aware enough to lnow that i am not an expert in it.
The rest is the same old regurgitated nonsense.
John: any documentation at all of your claims that does not depend on your just telling us about them in past tense? In other words, any documentation of claims that do not bottleneck through you and any ability you have to influence the results inside the bottleneck (even unintentionally) before the only-typed-here claims issue forth from it, so that a reasonable person could look at them and conclude "damn, there really must be something there" ? That would help. (It would help make you an instant worldwide sensation and a billionaire, for that matter.) But even beyond that, correlation does not equal causation unless you have some really good numbers, i.e., enough cases ("n" that is pretty big...so far your "n" after all this time is one, with several unlisted others implied).
Would help quite a bit to address what others' skepticism is actually rather reasonable, and also ''responsible," in that if someone should go down your road on the basis of your words, and thereby choose instead to forego methods that had at least some good publishing and professional endorsement (the kind where they convince actual professional liability insurance companies to underwrite them, which is a great way to tell a lot about a claim...e.g., how do you know when you can trust self-driving cars? When insurance companies will cover them), have bad things happen that might seem to have been preventable but for having taken your advice (or shall we say, observations) unsalted. So for me, it's wonderful for you, but the best I can say yet it that it probably "couldn't hurt."
Hi MarionP. Can you imagine anybody, in the medical profession, openly endorsing what has happened to me?
Can you imagine anybody in Big Pharma giving credence to my story?
Do you know how much it has cost me to get my story out there and what I stand to gain by having other people listen to me?
I have gone all over the English-speaking world, at my own expense, so that people can see how well I am and can see how they are able to do what I do, without any outside interference. I have taken people who were wheelchair-bound and shown them immediately how to walk, 'Unaided'. How could that happen unless what I am telling everybody is NOT TRUE?
I am fighting a loosing battle, but I will continue to do so, regardless of my chances of succeeding.
I don''t want to be a millionaire, I am not looking for financial gain. What I make on selling my book is more than wiped out by the cost of keeping it 'current' and factual.
No I cannot imagine Big Pharma giving credence to your story for many reasons one being that despite your protests no one NO ONE has had a sustained reversal of symptoms like you claim to have had. 20 plus years is a long time with no positive results.
As to your expense, yes it wasnt a paying tour but i know that it cost $100 to see you privately in some countries and a door charge.
Many wheelchair bound people walk again. Here is one. youtu.be/BJYZL7LFLt8
If somebody had to pay $100 to see me, that could only have been what the organizer of the tour charged. I only every received donations at meetings and they did not cover our airfares and all our expenses. All moneys received by me came from the organizers.
I hope you don't think I go around 'Faith Healing?". I have nothing against it but what I do is merely common sense. Our subconscious brain no longer functions properly, but our conscious brain still works normally and is quite capable of taking over from the subconscious.
Sure, I will give you a like. I will encourage you. You are at the very least one of those lights of hope. "It worked for me." That's a hell of a gain to the rest of us to hope for, after all.
But in all that time, no one, no one, seems to claim any sort of similar outcome doing what you have done? No one seems interested to get behind it, so that someday the link between single case and multiple proofs may evolve in reasonable time, incontrovertible outcome even if an actual explanation (like so many successful drugs for instance) eludes? Even some young interne with a career emphasis ahead to fill, an institution or medical training facility? Nobody else has taken up the same banner in all that time to give it a try, give it its due? Big Pharma (ok, they want billions of dollars worth of disease to treat, not cures, we know that), Little Pharma, no pharma, experts, novices, avocationers, complete naives? I have said, I thought, to keep up the efforts.
You have some stiff competition, lots of credentialed (and even more than credentialed) whackadoos with the gift of mass communication down to a science, art, and instinct, such as all these I found after watching a super convincing (presentation skilled interview formula, that is) EWTN broadcast (EWTN is th e Eternal Word Television Network the Catholic-Church-Institution TV) very longstanding expert, then looking him up (it well, that one was about alzheimers, but if you read the article about all these hyperqualified super-popular hooked-in experts and the horrible distracting nonsense they were spouting, as scientifically accomplished as they were, you get the idea, it's in every field)... oh yes, here we have it: skepdoc.info/hope-and-hype-...
The best can be said: it worked for one, but to prove it for one, we need longitudinal pictures of your substanta nigra, samples showing whether you have some of those globs of misfolded a-synuclein clusters, small sized or limited-number lewy bodies...
So in the meantime, you are the proverbial example of Jesus's miracle (among others) of the crippled man who was told "Pick up thy bed and walk," and did. Can't say it didn't happen and the mechanism you say did it. But in all that time, or in any time, at some point there has to be someone, somewhere, to come out and say "me too." Maybe there are, and they just don't have the internet gifts that we have, or run in the communication circles or crossovers that we do.
But do carry on. Many great advances were preceded by universal disbelief and ironclad skepticism for very long times first. You are the man in the iron mask.
Hi Marion. It took me eight years to come off the medication. It only took 4 years to feel better and four more years to pluck up the courage to come off the MAOb inhibitor. Should others be expected to get there quicker?
I was lucky because we had this organization here inn SA conducting the WALKING program and controlling it very well. Without that, I would never have taken up the walking. My late wife joined them over two years before I did. She managed to lose 14 kilograms in weight and came off all her pills (BP and Anti-depressants), which she had been taking for years. Many others had successful results with many other ailments.
If you really are interested and want to further the search for a proof of what I have been doing, then perhaps you can successfully motivate a study on the fast walking for Pd patients. They have nothing to lose by taking part and everything to gain. At the age of 85 and living in a retirement village, I am not in a position to do so or to persuade someone else to do so.
I know lots of people who have written to me telling me how well they are doing etc, but they don't belong to HU and I have never thought of asking them to join and tell everybody how well they are doing. Perhaps that is what I should do and see what results I get,
"I know lots of people who have written to me telling me how well they are doing etc, but they don't belong to HU "
Yes, by all means get 'em in.
What was that MAOB inhibitor you had at the time, by the way?
Selegiline, ttrade name Eldepryl. It is similar to Rasagiline (Azilect)
I like the idea of a so-called “honeymoon” period, but who says it has to end? These types of predictions sound like another logical fallacy based on the misuse of statistical data. This is common among medical professionals. They should know better, because such predictions can lead to a negative placebo effect. Here’s a simplified example: let’s say the SD of the negative prognosis of a condition is 6 months. The physician announces “you have 6 months to live”. Lo and behold exactly 6 later the patient drops dead. The renowned hypnotherapist Milton Erickson used to turn this phenomenon on it’s head. His dictum: “I’m going to pretend to heal you, and you’re going to pretend to get better. Only you’re going to forget you’re pretending, for the rest of your life.” Joe Dispenza has it right: you ARE the placebo. My advice, for what it’s worth: treat statistics as the useful tool which they are, but put your faith somewhere else, where it can do you some good.
Student of Milton Erickson's work, that's quite a nice little trick he pulled.
Readb oat, Please come back to me on this and your progress (either way) in 5 years.
Let’s just say I’m an optimist
I am too, a realistic optimist
Well I’d like it if you got back with me in 5 years as well. But it’s not necessary to wait that long. May I ask, please, how long you are past diagnosis?
Hi there. I hesitate to comment , I mean no disrespect to anyone’s journey and what does or doesn’t help someone. I am or was an ultra athlete, always exercising and eating clean ect. I was diagnosed over 6 years ago in the midst of my running career. The only thing that enabled me to continue running was to take cd/ld . Exercise helps tremendously with PD not only physically but mentally too but to say for me anyways , it would cure or slow or stop me from taking meds , isn’t true. If extreme exercise , fast walking , running , ect is the cure why did I get it in the first place. ? 🤷🏼♀️. I continue my passion of running , however at this time I’m recovering from a severed hamstring that was surgically reattached and I am looking forward to my next marathon. Everyone has their story and what works for some doesn’t always work for all but is worth a try. Take care everyone. Karen
I’m doing c/l + mucuna + B1 + tai chi & yoga + however much aerobic exercise I can manage to squeeze in. As you said everyone has their journey. Karen you might consider Tai Chi for pt while you’re working on healing your hamstring. I’ve seen it do good things for sports injuries. Best of luck and Happy Thanksgiving - JG
For me, it was exactly that. I had significant decline between my 5th and 6th year after diagnosis. It was also when the doctor insisted on me taking carbidopa/levadopa. I changed neurologists both (MDS), but the second doctor prescribed exactly the same as the first. Different region, different health systems, same prescription and dosage.
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