I have read about John Pepper. Has ANYONE read his book? Do his Protocol of exercise and mindfulness? It seems like it has worked for a lot of people!
John Peppers book: I have read about John... - Cure Parkinson's
John Peppers book
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smv123
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Hi smv123. You are so lucky to be here in this esteemed forum! You will certainly hear personally by this world famous author and fellow Parkinson's comrade. Just wait for John to respond.
"Mindfulness"? From John's book? That's a new one. Anyways I will let him explain his core message of fast walking.
Fair warning. John has his fans as well as haters. Be prepared for the vitriol that might follow.
“Love me or hate me, both are in my favor. If you love me, I will always be in your heart ... if you hate me, I will always be in your mind.
(William Shakespeare)”
Who could possibly hate you Gio?lol
No one!! He’s talking about j pepper
Nobody.
I'm humoring myself! Roses are red! Violets are blue! Gio who could possibly hate you? LOL
By mindfulness I just mean I guess he has you "think" about how you walk or talk.
Do you do it? Has it helped you? Can anyone say it has "kept" them at their current level???
I have to be honest and say that I don't do it often because of my inability to walk with a proper gait. Only recently, I have been able to walk properly and steadily. I intend to do it more regularly because it has been helpful in the past.
I dont believe anyone has answered your question so here is John’s answer. He writes :
“ I am the only Pd patient, that I know of, who has managed to reverse many of his/her movement symptoms. I am also the only patient, that I know of, who has not had to take any Pd medication anymore”
Elsewhere he writes: “When I was 58 in 1992, at the time of diagnosis, I had been going to the gym for intense work-out for an hour every day, six days of the week. It did not stop my Parkinson's from progressing,
For the next two years I went to the gym for 90 minutes every day but my Pd got even worse, and at a faster rate. After two years of walking badly, sleeping badly, getting more and more worrying symptoms, I decided that as the exercise was obviously not helping me, I would give it up. So, I stopped going to the gym. My late wife had been doing fast walking for two and a half years and had lost 14 kilograms in weight and had come off her blood pressure pills and also her anti-depressant pills. She begged me to try the fast walking program. I told her that the 3 hours a week she walked could not do better than the nine hours I had been spending in the gym, but she did did not give up nagging me to try it. What had I got to lose?
I started the fast walking three months after stopping going to the gym. “
Strange that only walking works for him and not the gym!
Hi Hikoi
Do you keep a file on everything I say? Thanks for the mention anyway.
If you had an open mind on the subject, Fast Walking is totally different exercise to any other that I know of. Fast walking is not natural. walking is but pushing it to your limit is different.
Walking is normally controlled by the subconscious part of the brain. Fast walking has to be controlled by the conscious brain. I think that when we walk at our fastest our brain thinks we are in trouble and the 'Fight or Flight' response produces that special growth factor called GDNF, which the name implies, repairs or replaces the damaged Glial cells. That produces more dopamine, which reduces the level of many of our symptoms.
I cannot prove that, but a very cheap controlled study could be done on it, if anybody is interested! Obviously big Pharma wouldn't like that to be proved to be correct, and they are the ones with the cash to pay for studies.
There are so many people who are doing so well with the fast walking I don't have to worry about people like you anymore. We all want to get better and are prepared to do the hard work. There is a physiotherapist in San Francisco who ONLY teaches my method of dealing with Pd. One of her patients is a pro golfer and he is now back playing golf again after having had to give it up. He is just one of many.
I don't personally believe you have Pd. I think you work for somebody in the pharmaceutical world and you work on people like me, who are trying very hard to help others. I wish you luck!
John. Hikoi has PD. So do I. She is not a spokesperson for the pharmaceutical industry. Come on, she speaks from experience.
I’ve been a disciplined cyclist for many years. Recently 5 years post Dx rigidity and stiffness starting to set in. I walk but cannot possibly get speed up (steep ascents) without c/l. I’ve tried believe me. With c/l I can walk with concerted effort up 11%+ grades. I read your book years ago and enjoyed it. However with my progression I can easily understand Hikoi’s position. I Walk every day ( yes in excellent shape) and c//l allows me to exercise at an acceptable level. Without it no. I also feel that cycling also accomplishes what you claim with fast walking , however I will not attempt cycling anymore without c/l (steep ascents) dangerous to myself as well as others. Lastly, I wouldn’t take c/l if I didn’t need it.
Hi ParlwPark. I have made it quite clear that bot everybody can do fast walking. If anybody is able to do i, but needs C/l, that's fine. If they get to the stage where they feel they need less CV/l, so much the better.
Thanks for the reply.
“I cannot prove that, but a very cheap controlled study could be done on it, if anybody is interested!“
Isnt your un named physio interested? She is in an ideal situation. Who is this person you claim anyway but wont name?
You cannot prove what? two studies need to be done, the first to see what type of exercise produced the most GDNF in the brain. That would need quite a number of participants and scientists to measure the GDNF regularly.
he second study should be on several people, half of whom walk as fast as they can and the others to walk the same distance or time but at a more sedentary way.
That is not very expensive but who is going to benefit from doing it? Universities. yes!
Possibly people aiming to set up an organisation like Rn/Walk for LIFE (EWFL).
The first sentence was a quote from your post.
The second part, who is the physio in San Francisco? I feel sure some HU people would like to consult her
Her name is Lisa Oei, I'm sure she would welcome anybody contacting her. The name of the golfer I do not know myself.
Thanks for that John. Lisa has a very interesting web site with heaps of different activities though I failed to see you or your book mentioned.
in reply to Hikoi
"Dr. Lisa Oei, physical therapist and Parkinson’s wellness coach has taught a variety of Parkinson’s classes with SteF, co-founder and certified fitness trainer. Lisa’s non-profit organization PD-Connect™ serves Parkinson’s people in Marin County.
Exercises called imaginary jump rope, count the squats, what is your favorite snack, and catch a tissue are a few of the crazy activities you might find yourself doing at PD-Connect™ to keep fit. Not only are the exercises unique, the exchange between the two trainers is entertaining. Their exercise is based on PWR!Moves®, a Parkinson’s-specific skill training program to maintain or restore skills that deteriorate and interfere with everyday movements. "
No mention of Fast Walking, which is odd if she ONLY teaches John's method.
WE only got together a month ago!
But but but John
You wrote “There is a physiotherapist in San Francisco who ONLY teaches my method of dealing with Pd. One of her patients is a pro golfer and he is now back playing golf again after having had to give it up. He is just one of many.“
I presume the guy back playing golf is doing so because of following your method otherwise why mention him, just one of many!! And the physio ONLY teaches your method! Yet you then say you only got together a month ago.
And from her web site it is clear she teaches lots of methods, yours isnt one of them. Hmmm something doesn ‘ t add up.
Hi Hikoi. It is very difficult talking to you but let me put you right. Yes! He is playing golf again because he did what Ms Oei taught him, which is what I taught her during my talks in SF in 2016. I did not know she started doing that. Nobody is under any obligation to tell me what they are doing. She contacted me just over a month ago to give me this news. Why doing you contact her?
You love criticising me and what I do. I can't help questioning your motives? Is it to help others or maybe to protect them from unscrupulous people?
sorry if have arrived in the middle of other discussions.I am wondering .on behalf if my HWP if John you have any knowledge of or thoughts on ambroxol.
it is discussed on health unlocked.
It seems rather radical to.take a drug that is not approved for Parkinson's but sounds like it it is approved we will all wish we had taken it Asap.
it's a cough syrup which seems to have a way of improving brain clarity. dementia and also other movement disorders associated with Parkinson's.
Interested to know if you have any knowledge of this. fairly new finding
thanks
louise Taylor
Nz
Sorry. Never heard of it!
I have read his book and appreciated his viewpoint. Exercise is critical and his book was motivating.
Trouble is it is fast walking only that is the RIGHT way.
Fast walking is the best way, not the RIGHT way!
Do you do it?? Has it helped you? I'm looking for those who do it and think it has helped them stay at their current level.
in reply to smv123
What do you mean by "stay at their current level."?
gaga1958 in reply to
Meaning disease didn’t progress.
I’m working on it. I walk a mile every other day as fast as I can. It is difficult for me due to arthritis. I do feel that it reduces symptoms.
Goldencbc,
Where do you feel your arthritic pain?
Art
Hi Art, Left hip and lower back. I am getting PT twice a week now and that seems to be helping. Plus my left leg gets very stiff. It’s always something.
Goldencbc,
Have you ever read my post about borax (yes, the laundry booster) and arthritis?
I have psoriatic arthritis that made it impossible for me to go for daily walks anymore because almost every joint in my body hurt and walking made every pain as apparent as a flood light in your face and seemed to aggravate the condition.
After working my way through what seemed like endless supplements, borax put the PA into remission for well over a decade now! Here is a link to the post I wrote about it :
healthunlocked.com/parkinso...
If you have any questions, please post them to that thread so that I do not completely hijack this thread!
Art
I’ve been “doing” it for over a year now, admittedly not sticking to it exactly until just recently. I now walk as fast as I can (nearly) for at least an hour. I do over 5kms each time and am working at improving.
I cant tell how much it helps by itself because I also do Qigung and boxing in between. I also do the High Dose Thiamine protocol as well as dancing. I do feel better and move more“normally” after each walking session. My best guess is that it’s all grist for the mill- every little thing helps.
Hi LeuraPark
Dancing, boxing and qigung are all controlled by your conscious brain, which is not affected by Pd. If we could all start taking control of many of our actions that give us problems we would all be winners.
The most important part if fast walking is that if you do not walk as fast as YOU CAN, your brain does not go into 'Fight or Flight'mode.
At the beginning, walk as fast as you can and stop when you feel you must slow down.
Don't walk every day!
Increase the time by a maximum of 5 minutes every second week, maximum 1 hour.
Do ir that way and see the difference.
Thank you John. I really appreciate the assistance you willingly give.
My pleasure!
If you look me up in Google and contact me, I will send you the stories of a whole lot of people who have benefitted a lot from what I do.
John asked this question on a couple of threads. there wasnt anyone who had his results.
I cannot reveal people's names but I am prepared to supply you by email, the letters and emails I receive from people who have done well.
Contact Ms LIsa OEI, a physiotherapist in San Francisco.
I have read his book and I do believe it is an excellent way of keeping fit. I believe that keeping fit reduces symptoms . His book was written at a time when the whole idea of sport with this illness was questionable. The book is very motivating and I would recommend any PWP to read it.
Thanks Jackundmicky. I am most appreciative!
Walking in general seems to relieve symptoms, my toes curl up quite quickly on a walk if I haven’t been out for a while but after a couple long walks or some running, symptoms subside. Don’t personally feel fast walking is the magic bullet though.
Hi Ratzkywatzky. If you try walking as fast as you can, even if for only 10 minutes, and do it every second day, you will find, within four months that you are already feeling better. If you keep trying to walk for longer, with slowing down, you will be a different person (One with less Pd symptoms). Don't do it for more than one hour, every second dsy!
John, what would you recommend on a treadmill? I have heard 80 - 85 rpm for 30 - 35 minutes?
Hi I read John's book just after my diagnosis 5 years ago. Since then I have walked daily , I also do yoga and a bootcamp once a week. I believe the exercise has helped me slow the progression of the disease down. I had been medication free for 4.5years. I have only recently agreed to try medication which I do as 1 tablet am and a half at lunchtime. I do take B1, which I believe is very helpful. Reading John's book is very helpful and empowering.
QUEL MEDICAMENT PRENEZ VOUS ?
Hi Is that the standard B1 you find in the health store? And what dose u take per day? thanks
Hi I use solgar B1 500mg I take 2 Am and 2 at lunch time both with my seminet. Which I take 1 tablet am and a half midday both on empty stomach. I found I had to slowly work up to 500mg B1. If I over did it my tremor increased. I just purchase at my local health store or on IHerb. I found when I started using B1 my sense of smell returned and I had a bit more energy. Hope this helps , to be honest I am still not sure if I have my dosage right but I am continuing to try to work it out.
Thanks Chaise. Please don't walk every day! Your body needs time to recover after each walking session. If you don't walk at your fastest rate for the whole walk, you will not be getting much benefit from doing so.
Hi Chaise. There are strict rules about fast walking. You obviously missed the point, by walking EVERY DAY.
Hi John sorry I have missed the point . I thought about my walking and to be honest I am probably not walking fast every day but I am out walking daily . You are inspirational and you have given me hope and direction. But I need to take closer notice. I have your book and I need to re read it. Thanks so much John. Hope you are feeling better. I see you have not been well ?
Hi Chaise. Thanks for your kind interest in my health. I am on blood-thinners and that has caused internal bleeding in my left knee. It is now in its third week and not better yet by any means. I am sure it will come right, and thanks for asking,
Remember, John says power walk only every OTHER day!
Hi Chaise. There is a huge difference between doing exercise every day and doing fast walking every second day. When you walk flat-out, in my opinion, it causes the brain to produce a natural chemical called GDNF, which repairs the damaged brain cells that manage the production of dopamine. That is what you want to do, is repair the damaged brain cells, not to just get fitter. You do get fitter with the fast walking and on the in-between days you can do other exercises that do not involve your legs.
in reply to JohnPepper
"When you walk flat-out, in my opinion, it causes the brain to produce a natural chemical called GDNF, which repairs the damaged brain cells that manage the production of dopamine. That is what you want to do, is repair the damaged brain cells"
This is one of the things that some of us take issue with. You have no evidence that this is happening. I will acknowledge that you are now saying "in my opinion" which is a slight improvement.
If we accept that your claim is true, for a moment, then why do other exercises not produce GDNF? What about running? Swimming? Pushups? Cycling?
JohnPepper in reply to
Hi ChrisWF. I am not the only person who has reversed their Pd symptoms by doing the fast walking. The fast walking was not my brainchild. It was the brainchild of someone here in SA, which has helped many other people with many other health problems. My wife and I tried it and it worked for both of us.
Everywhere I go and show people how to consciously control their movements, not one of them has been unable to do it. That must tell you something!
I am not a scientist and I am not selling any products with any claims attached. I am passing on useful information to help others. Nobody will ever be harmed by doing fast walking.
The Conscious Control of Movement is the result of my own experience. As it works for everybody I would say that it is therefor unquestionable. Does everybody, who has been successfully shown how to walk normally again, continued to do so? No! quite a lot of them are either too lazy to practice doing what they have been taught or they are people whose neurologists have told them that I do not have Pd, and they should not listen to what I tell them. It is funny that, although it works for them, they listen to their Neuro and carry on taking medication that does nothing to permanently improve their movements and has serious side effects. You pay your money and you take your choice, In my case they don't even pay any money. Maybe I should start charging for what I do, then they will have more respect for it.
in reply to JohnPepper
John
Why are you unwilling to address specific questions? You just go off on these tangents.
Why does fast walking produce more GDNF than swimming or doing pushups? Or, perhaps more accurately, why do *you* think it does?
JohnPepper in reply to
Sorry ChrisWF. I answer this question many times. This is my experience, but it has not been put on trials, because nobody. other than Pd patients want it.
I did 60 minutes in the gym 6 days a week for over 20 years before diagnosis. I then upped it to 90 minutes a day for the next two years, and watched my symptoms getting worse. faster than they had been doing. I then stopped because why do all that work and make your symptoms worse.
I then joined my wife's Fast Walking program. Over the previous two years she had lost 14 kilograms in weight and had come off he blood pressure and anti-depressant pills she had been on for many years. She begged me to join her, but I asked what can 3 hours of fast walking a week do that all those different exercises, I had been doing for nine hours a week, weren't able to do. She responded with the retort, Ï don't know, but it has worked for many others with more serious problems than Pd.
I joined, just to prove she was wrong, but after only four months, my walking improved from more than 10.5 minutes per kilometre to less than 9 minutes a kilometre. That was the fist improvement in anything I had been doing for more than the previous five years. I was not allowed to walk more than 20 minutes per walk for the first two weeks, because I had been walking 20 minutes every day in the gym. Most other people were only allowed to start for no more than 10 minutes per walk.
Every second week we were allowed to increase the time by a maximum of five minutes. If our times did not improve we had to stay at that level until they did. We were only allowed to do a maximum of one hour, three times a week, because it is so strenuous and our muscles need a day to recover after every session.
I had been doing cycling, step-climbing, rowing, running on a treadmill and all the various machines at least three times a week. How much more proof do you want than that?
What does fast walking do that nothing else I know can do? It is strenuous, but can be tolerated for an hour by most people of all ages. It involves the brain and the body, because it cannot be done subconsciously and we have to look where we are going and avoid falling over objects or holes. Under those circumstances, it is my guess that our brains go into 'Fight or Flight' mode, which means it thinks we are in danger. It is not natural to walk flat-out. When we are in danger the body produces something called GROWTH FACTORS. These are produced to repair or replace every different type of cell in the body, if it gets injured. If we did not have this we would never have survived as a species,
The Growth Factor that interests us is called GDNF (Glial Derived Neurotrophic Factor). Glial cells are the cells that get damaged by Pd. They manage the production of DOPAMINE, which is what we lack and what causes Pd. So we actually have our own repair kit for Pd.
In 2003 an experiment was carried out in a hospital in Bristol, England in which they drilled two holes in the head of 6 patients with severe Pd. They inserted a catheter into each hole that reached right down to the substantia nigra (where the glial cells are being attacked by Pd), they joined these catheters to a storage tank and pump, which were installed under the ribs, in the chest cavity, That was kept filled with artificial GDNF, which was known to repair the damaged brain cells. They had to do it that way because GDNF does not pass through the blood brain barrier, so it cannot get into the heart by taking it orally.
Every one of those patients got very much better, and GDNF was proved to have been able to do the job, But that operation was expensive to install and maintain. They did more experiments to improve the procedure but nothing was heard of them and it died a natural death. Since then I have asked at every Pd conference I have attended, why don't we hear anything more about GDNF? But I get no answers!
The brain produces natural GDNF and all we have to do is find a way to produce more of it, but that does not suit the medical world, If everybody with Pd were to get better just think of what the losses would amount to in the medical world!
I am certain that my brain has been producing more GDNF over the years because when I stop the walking, due to other health issues, my symptoms started to get worse each time.
I hope this is what you are looking for.
in reply to JohnPepper
But if I was actually in danger, John, I would run. I wouldn't fast-walk. And so would anyone else that had the ability.
Surely then, I should be running to produce GDNF rather than walking?
If I was being pursued by a shark, I'd probably swim. Can I swim for GDNF?
Surely contact sports where one has to run and jump and handle a ball would produce GFNF?
JohnPepper in reply to
Chris. That is what I think! Very few people could maintain running at top speed for an hour, not that that is pertinent.
I don't think the 4brain analyses why I am doing something unnatural, I think it reacts to what I am doing. Perhaps there is literature on the Fight or Flight condition.
I cannot ignore what has happened to me. What has happened to me and what I conclude from it is highly possible. The fact that others are doing it makes even more sense.
We have all the facts and if there is any desire on the part of people with Pd to put it all to the test, then it would be very worthwhile.
If, on the other hand, what I say does not make good news to me, I would do what you are doing, to keep it out of reach to other people.
John
Please explain
what a glial cell is
where they are found
what evidence exists that they are damaged in PD
why one of the potential treatments for PD is to convert surplus astrocytes into dopaminergic neurons
Thanks
(Just direct answers please - nothing off topic)
Sorry Winnie have mercy on us, we're not in school, now JP, at 86 yo, must be allowed to live in peace with his ideas. Your father has a beautiful garden 
Glial cells are the policemen in the brain. They control what neurons do, so if they go AWOL then all the neurons they control also go AWOL and we don't get as much dopamine as we need. The fact that glial cells are damaged or destroyed is well documented.
I don't understand your last question. Creating more, or repairing more glial cells is the treatment we need to work on. We cannot get artificial GDNF into the brain, because it will not pass from the blood into the brain.
I have to be honest and say that I don't think the medical world wants a cure for such money-makers as Pd and Alzheimer's etc. I know lots of people will Poo Poo that theory but I stick to it.
Why is it that when something comes along that actually kills us, the scientists are able, within months, to come up with a vaccine? It does not pay anybody to cure chronic disorders, if they can be 'treated' for many years before the patient dies. It is a business decision, and takes no note of the suffering caused by these chronic disorders.
When I was 10 or 11, we thought I had polio, during the second-world war. Because there was nothing the doctors could do about it I just lay there helpless. It soon turned out that whatever it was, was not polio and I got better. Very soon after the war, a vaccine was found that stops people from getting Polio. Since then, we have had things like HIV, Ebola, SARS , and MERS, which all killed their sufferers. All of them and probably lots more have been dealt with, but chronic illnesses are 'CASH COWS' and will be with us forever!
I make my point.
John. You're wrong on every point you make but it's a waste of time telling you so.
You've heard of GDNF and fantasised a world of Harry Potter around it.
Since you asked, astrocytes are the most common form of glial cell in the brain and so abundant in pwp that they are working on a way of genetically reprogramming them to act as dopamine neurons in the SN.
There is absolutely nothing about damaged glial cells being a feature of Parkinson's which, together with your laziness, is why you can't provide a link to one.
I think you mean well, but by your own account you almost certainly don't have Parkinson's disease and people hearing your confident assurances of how you reversed it should be made aware that you have no evidence (like a dat scan) and you state that the neurologist who last examined you told you that your neurological condition was NOT idiopathic Parkinson's
Winnie, you amaze me! Are you talking about what I think GDNF is doing in my brain?
Am I wrong in thinking that my symptoms have been reversed and are kept at bay as long as I do the fast walking.
I don't recall asking you about astrocytes
Thanks John , ok I get this now , will start walking fast every second day. Blood thinners are a tricky med. I do hope you can get on top of them. I must say when I walk fast for a period of time I am less stiff and my tremor seems to reduce a bit. Thank you again for your advice John & for not giving up on me !!
Keep the good work up
I am so pleased you have found some success, but I would plead with you, 'do NOT WALK FAST EVERY DAY!' Your muscles need time to recover!
well i must admit i have not read his book but i have been walking every day even before i had p.k i have ciatic pain i find it hard to walk in the morning as im bent over for a few hours every morning and night.the pain killers dont really work im on walking sticks when i walk every morning it takes about 2 hours before i go walking i walk about 5 or 6 klm every morning as a good pace some of the parks have different machines and i use them as well my grand kids got me to go on the internet its a thing called tic-toc you will see me dancing on it i did that about 4 or 5 months ago under my own name so yes exercise is very important so if i can do it then most of you can give it a try you have nothing to lose every thing to gain.regards john.
I had a pinched sciatic nerve until I had a disc removed from my lower back and have not looked back since. I was advised by my neurosurgeon not to let anybody join any of your vertibrae together, it only causes more problems.
Have you tried any YouTube videos for sciatica? Bob and Brad are good, and I am sure that there are others
Hi justjohn. One should avoid walking fast every day, it can do more harm than good.
Hi, I definitely endorse John’s methodologies. I believe wholeheartedly in the move your body concept. I went from being an athlete to just coping right before my diagnosis. I had other problems crop up simultaneously (coincidence or not?). I had debilitating osteoarthritis in my knees to the point I had to walk backwards. I paid for stem cell replacement therapy and have been virtually symptom free from the osteoarthritis for 5 years. But this kept me walking! I actually took up golf (I walk never cart) because it pushes me and now the days I don’t move or golf are my worst. I also dynamic dose to coincide with my lifestyle. This happens to be very specific to me and my habits. In fact, I golf better after 2 pm, lol! And this is definitely (I believe) because of my dosing schedule. Anyway, yes I definitely believe John has something important to tell anyone, even those without Parkinson’s. Move, if you can! Cheers and good luck!
Thanks PalmSprings. You certainly live in the right place.
Hi PS
You therefore endorse fast walking above all other exercise. You endorse Only walking alternate days and you endorse concentrating on every step you take, and you endorse reducing your meds.
Those are John’s unique methodologies which he claims reverse Parkinson’s - the name of his book.
Or are you just endorsing exercise which is well known to enhance well being
Hi Hikoi. I did gym for an hour, six days of the week until diagnosed and then upped it to 90 minutes a day for the next two years. I used every machine in the gym and gave it my best, but all I did was get worse
Hi Hikoi,
I hear what your saying but I guess I am a person that takes out of a book what I consider to be the essence or maybe I am very myopic but I hear John saying “get out and walk” and walk fast. His concept of concentrating on every step is important for some of us because then we walk with more purpose, faster and with better posture. And our brain focuses on the activity and away from the tremor or freezing that we may suffer from. I believe his point is connected to this idea behind neuroplasticity. Maybe, you see the trees and I see the Forest? I read a lot of books and I don’t necessarily agree with every single word written but I try to glean what I think are the important points. I certainly don’t expect everyone to agree with me. I have been known to be wrong.
Hi Palm Springs,
I have watched the evolution of Johns ideas and claims over 10 years. They have subtly changed. See his claim here that a physio successfully teaches his technique then his admission that they have only been in conversation a month.
I know he was removed from his position as chair of the Parkinsons org in Sth Africa because neuros do not believe he has PD, i know he does not display the cardinal diagnostic signs of PD, i know he got no relief from levadopa medication and when he says he stopped all PD meds he means he stopped the only one he was on Eldipryl . I know it takes 6 weeks for John to find his symptoms returning if he stops walking yet he claims he still has PD. Six weeks!!! So I reacted to someone who writes I DEFINITELY ENDORSE JOHN’s METHODOLOGIES.
John has painted any opposition as working for drug companies and anti exercise. For years many have tried to have a discussion but maybe it is his personality he always makes it a conflict situation in which he persists to win and he has a loyal band of women and men who jump to his defence. I do think he genuinely believes he has PD. I on the other hand agree with HIS report that the last neuro he saw said he did not have idiopathic PD. John doesn't know what sort he does have.
His exercise programme, is fine, it is lifted from the Walk/run programme designed for stress relief and weight loss And it is scientifically based but there is absolutely no research that shows the programmes benefit in PD. Nevertheless John continues to give advice and run a consulting practice on here.
Yes I think I do see the wood from the trees. Hope you continue well for many more years.
Hi HikoiI only picked this post this morning and want to try to cool things down, by making it a discussion and not an argument. I want to pass comment on some of the above statements: -
See his claim here that a physio successfully teaches his technique then his admission that they have only been in conversation a month.
y statement is correct, I taught that Phisio in 2016, since when she told me she has changed her concentration to teaching my methods of dealing with Pd symptoms. You were not to know that but the people reading your comment will view me as a liar or fly-by-night operator; of which I am neither!
because neuros do not believe he has PD,
That was not the reason they made me resign as Chairman. They accused me of claiming I was cure, without the use of medication, using the Assn to sell my book, and for misleading people!All those accusations were untrue! In my book I never claimed to be cured and mentioned my various medications 57 times. The Assn asked me if they could sell my book and make 40% profit towards funds. It turned out that the Director was the one who sold the books and pocketed the profit!
I have to wonder, Who is misleading whom?
he got no relief from levadopa medication.
I did not go off Pd medication because I got no relief, I went off because I had expected my condition to have improved, but it had got worse. I was never told that Pd medication does nothing to slow the progress of Pd.
his symptoms returning if he stops walking yet he claims he still has PD. Six weeks!!!
My symptoms have never disappeared! They have come down to a level where I can tolerate them, without needing to take medication!If I do not do fast walking every second day, my symptoms start to get worse again after two weeks. They do not immediately return to the level they were in 1994. It will probably take more than a year to get to that level!
John has painted any opposition as working for drug companies and anti exercise.
In fact, I conclude that you must have a reason for having a go at me, at every opportunity you get, making unfounded statements, rather than questioning what I do. In my mind, you have to have a reason to attack me, rather than questioning me!
he did not have idiopathic PD.
Idiopathic means 'Of unknown source'. If someone can tell me how I became a Pd patient, then it would not be idiopathic. I don't know of anybody who knows how he/she got Pd, so they are all idiopathic.
John continues to give advice and run a consulting practice
What I have done has been responsible for my improved condition, which is proved by the fact that when I stop walking fast my symptoms slowly return. I do not run a PRACTICE! I try to help others, at no cost to themselves. SOME PRACTICE!
Why don't you ask me questions, rather than making infa=lamatory statements? Can you wonder that I react the way I do?
I don’t recognize your description of your condition as PD and nor would any doctor. Anyone who has had PD a few years know symptoms return within hours not months or a year.
Are you telling me that four neurologists, one of whom was the leading neurologist at the university, were all wrong in their diagnosis? Is that because I have managed to reverse the symptoms? Or is it because, for some reason. you don't want others to believe that I have Pd?
“In 2003, after writing a book about my experiences, I visited another neurologist, because in my book I said that, 'Nobody would ever know that I still have Pd", and I wanted to put that to the test. I told him about my book and asked him if he thought I had Pd? His response was one of anger! He said I did not have Pd, Therefore I never had Pd, because there is no cure for pd. What I had was Parkinsonism, whatever that means, and he told me to stop taking the Eldepryl!”
I guess it wasnt him!
“My neurologist, who diagnosed my Pd, described my tremor as 'Essential Tremor'. I am not aware that it happens in isolation. “
Not him either as he said you have essential tremor!
“I recently, towards the beginning of this year, went to see the top neurologist in Cape Town to get his diagnosis of whether I do or don't have Pd.. He did his normal series of tests. He said that my Pd is NOT idiopathic Pd. What that means I do not know, because idiopathic means cause unknown. That would mean that we know the cause of my Pd, which of course we dont. “
Perhaps it is this one!
Reading that email makes me realize that none of the neurologists have a set way of diagnosing Pd. But they all have a set way of prescribing medication, whichever that is. I appear to put neurologists on the defensive because I have tried very hard to get a neurologist to witness me showing Pd patients how to walk properly. They are not interested in ways of helping patients to get better because, in their mind, they have been told there Is NOTHING we can do to get better.
What conclusion can we draw from all of this?
in reply to JohnPepper
Maybe that you have essential tremor? I.e that you have the condition known as essential tremor as opposed to the condition known as parkinson's disease?
Do you at least consider it a possibility? You are keen to note that youve been dx 4 times, but then one looks at the details, they werent exactly 4 unambiguous diagnoses, were they?
JohnPepper in reply to
Does essential tremor have all the symptoms to which I have given full details in my book?
in reply to JohnPepper
I dont know. But they laregely aren't considered to be differentiators pointing towards PD, either. Having neither bradykinesia nor resting tremor would make a PD dx unlikely in many parts of the world.
You were also 75 when you wrote this list, and several of these items would be seen in 75 year olds suffering from neither PD nor ET.
A datscan would be particularly interesting. Do you avoid getting one due to cost? And yes, i know datscans are not 100% accurate. But clinical dx arent either (in your book you say 75%), and you've had 4 of them...
‐‐---------------
1. Bad muscle co-ordination.
2. Constipation.
3. Choking and swallowing problems.
4. Rigidity and limited movement of limbs.
5. Insomnia.
6. Poor balance, when exercising.
7. Congestion in the chest.
8. Inability to handle stress and conflict.
9. Inability to walk over uneven surfaces, or on carpets, unless I am concentrating hard on what
I am doing.
10. Inability to write normally in a cursive script.
11. Inability to find words, and form sentences, especially when tired.
12. Clumsiness.
13. Frequent nighttime urination.
14. Sudden urges to urinate, which are not always real.
15. Fatigue.
16. Poor concentration.
17. Eyes go out of vertical alignment.
18. Hand and leg tremors, on waking up.
19. Profuse perspiration, when performing simple physical tasks.
20. Lack of awareness of temperature, thirst and hunger.
21. Bad walking gait, when not concentrating.
22. Bad memory.
23. Emotional instability. I cry very easily, even while singing songs.
24. Rigidity, after sitting or walking.
25. Inability to multi-task.
26. Loss of voice.
27. Mood swings.
28. Watering eyes.
29. Movements are jerky, when exercising.
30. My toes curl up very tightly (Probably dystonia).
31. Painful leg and foot cramps, mainly at night.
32. Lack of organizational ability.
33. Biting through my bottom lip with my right eyetooth, and through my inner cheek with my
back molars.
34. Confusion with which is the right and left side.
35. My calves become flexed, when sitting.
JohnPepper in reply to
We did not have DatScans in SA in those days. It might have changed but any scans are expensive and I cannot justify any expense to please the doubting Thomases, unless it is 100% reliable. What is the sense of that? You can send me the money and I will take the test!
Hi John - just to clarify your comment quoted by Hikoi above, idiopathic PD does mean of unknown cause, and accounts for around 90% of PD cases. The remaining 10% are mainly genetic. This is when mutations in genes are inherited and cause the disease we know as PD. Example genes include GBA - very high prevalence in people of Ashkenazi Jewish heritage - , LRRK2, SNCA, PINK and PARKIN. Unless you have a family history of PD, or a positive test for a known gene mutation, a neurologist saying you don't have idiopathic PD is telling you that you don't have PD.
I'm afraid that this label is being used as a means to make other patients think I don't have Pd. It is bad for business if patients get better and don't need medication. You are free to make your own decision on that one. If you look at all my symptoms you will know that they are all associated with Pd. Whatever they want to call it, I have managed to overcome it and so are many other people in the stages of overcoming it.
If you Google my name and make contact with me, I will send you my videos and lots of information as to how I went about doing this, I do not charge anything for this service.
in reply to JohnPepper
How many "patients" have you had that have gotten "better and don't need medication."?
It's zero, isnt it John?
JohnPepper in reply to
There are degrees of 'Better'. I have man emails from Pd patients who tell me how much better they are.I only know of one man who has 'Cured' himself and his name is Chris Lacey in Tasmania. He did not do it my way but did do some very intricate carving over a protracted period of time. His neurologist backs up his claim to be cured.
As I have told you, I don't have the time to write to all my contacts to see if any of them has stopped taking medication.
in reply to JohnPepper
So you continue to imply that people will be able to come of meds despite never hearing from a single follower that has done so? Wow.
You have the time to post here every day.. You have enough time that you suggest that people here contact you to discuss fast walking.
Why dont you write to ten people that wrote to you ten years ago? Take one day off from recruiting new followers to see how the old ones are doing?
Juliegrace in reply to
He just can’t give you a straight answer. There’s always an excuse.
What he asks is impossible for me to do!
JohnPepper in reply to
I have done so, therefore others can also do so!
in reply to JohnPepper
If others could have, they would have, and they would have told you, and they would be advertising it on every PD forum on the internet, including this one.
But they havent, and they arent.
The most likely explanation for your reluctance to do even a small number of long term follow ups with your followers is that deep down, even you suspect that their PD will have progressed and they will still be on PD meds. Is that the reason?
JohnPepper in reply to
So Many IFs. I regularly get emails from people who have found that fast walking helps them. Some of those people also tell me that they have reduced their medication. I have had a few tell me they came off the medication but had to go back off it soon afterwards.When I cam off the Selegiline I soon went back on again because of increased symptoms, but after a month I came off again and went back on again. But within a year I stayed off the medication and it only took about six months until my symptoms levelled off.
This is not a discussion, you are just bullying me and making totally foolish statements. If this is the way it is going to go in the future I am pulling out!
in reply to JohnPepper
You regularly get emails, but its "impossible" to respond to them to follow up.
I think people can draw their own conclusions about who here is making foolish statements.
It is immoral to lead people to believe that they will be able to cease medication if you dont have evidence of other people doing it.
JohnPepper in reply to
Would you please show me where I have said 'they will be able to cease medication'. I certainly do not remember saying that, and if you are correct then I must clear that up?
Thanks John, I read your book several years ago so I’m aware of what you offer.
I update my book regularly with the latest happenings.
I started exercising almost every day (maybe 355 days a year) 45 years ago, when I was 32. I ran for half an hour and did weights for 10 minutes. When I was 55, i had two diskectomies and switched from running to walking an hour a day (4 miles) to try to avoid a third. Shortly thereafter i was diagnosed with PD, and not long after that I started having trouble walking. Brady diskinesia, "rubbery" feeling in legs soreness. I had to cut back on walking. I now skip walking some days, do 20 minutes on others, and on good day walk a mile and a half in half an hour. Then I fill out the time on a stationary bike. I do stretches I got from Spaulding Rehab for another 20 minutes
I almost always feel better after exercise, and am glad I have maintained that level of exercise for all these years, and plan to keep doing it. But i have no idea if it slows PD progression. As Alan Alda said "One day you wake up feeling you've been cured and the next day you think you're gonna die."
It is almost impossible to get an accurate average when there is such variability. All I can say for sure is that my PD has progressed but I think the exercise I do has helped me feel better.
One interesting fact: In the process of adding stationary cycling to my routine, I bought a Theracycle to help me get and maintain the 15-mile-an-hour pace they recommend for PWP. Theracycles have a motor and you don't have to pedal at all. That's not exercise you might argue.
But I found two things: Using the Theracycle relieved my leg problems with walking, and,. somehow, as little as 15 minutes at 15 MPH, letting the motor do all the work, I feel better, My legs feel better; my balance is better; my mood is better; my off-time is reduced, and my tremors are quieter.
There is such a thing as DOING TOO MUCH! I have had two discs removed from my lower back. Walk as fast as you can, one and the next day do the theracycle. Stop any exercise when you feel you cannot maintain the same level. Listen to your body.
I was dx May 2018 and bought his book finally this year. I heard about Johns ideas my first year and started the walking right away. Quickly I maxed out at 4.2 miles in one hour, which I do every M, W, and F. I’m still faithful to that. I was dx stage one, and am still stage one at 58 years old. I did NOT go on the class of medicine John recommend though. My MDS has had me try amantadine, mirapex, and now C/L. None have stopped my tremor. I go back for checkup next month. I take daily vitamin B and D. As far as the value of exercise, I do question how lifelong runners, and 0lympic cyclists like Davis Phinney ever got PD to start with with their active lifestyles!! John is at least 85 now so I hope he stays with us a long time! He has great videos also under his name John Pepper on YouTube. He does not like those walking poles because u can not go but so fast with them. As far as I can tell, my progression is stable for now. Thanks, John!
Thanks FergusonJR. I wish you lots of luck!
Hi Ferguson JR. I revisited this link and wanted to mention that I think that running marathons does not create the same response in the brain. They cannot run the whole race at their maximum speed, which is what we should be doing with the fast walking!
I ADORE JOHN PEPPER! His book gave me encouragement and hope following my diagnosis six years ago. ❤️❤️❤️
So do you do the walking every 3 days. Great!!
Thanks shanaandbear!
John, is FW on a thread mill okay?
Hi ion_ion.
I have seen people on treadmills watching TV, while they are walking. That means they were using minimal brain activity on the treadmill. Pd affects the brain and the more we use our brain, to control our exercise the better the brain will become.
Invariably, those that report benefits from fast walking were leading sedentary lifestyles, either for some period since they were diagnosed (because the disease has demotivated them) or for some longer period than that (which isn't surprising- most people in their 60s don't exercise a great deal).
Well, of course getting out and doing *some* exercise is going to make you feel better than you did when you were doing none. Theres a number of reasons for this that are well understood. But there's no evidence that "fast walking" (in any combination, whether or not you follow John's precise plan of 45 minutes here, 5 minutes there, wait 19 minutes, take a day off, take 2 days off but wear a red shirt etc) will slow your PD (and John literally makes up the science he uses to argue that it does).
If you want to exercise to slow your PD progression, the scientific studies are pretty clear about how to do it, and it isn't "fast walking".
Gioc in reply to
at least make the effort to indicate which scientific study you are referring to. Come on, can you do it?
JohnPepper in reply to
Hi Chris WF. If you had read my book you would have seen that I spent an hour in the gym, 6 days a week for the 24 years previous to diagnosis. I then increased the gym time to 90 minutes each day. Because I was measuring my performance on each piece of equipment in the gym, it was easy to se that my performance at every activity continued to get worse, at greater rate. I therefore decided to give up going to the gym.
Three months later, I started the Fast Walking program, for 20 minutes every second day. That was in in order to give my muscles time to recover. Four months later my performance RWFL improved by nearly 20%. I was allowed to increase the time by 5 minutes every second week. After six months I was up to one hour every second day. I kept on getting faster and faster until I was walking 10 kilometres in under 70 minutes.
In your smarmy way of making light of the rules related to the walking (red shirts). there was a solid reason fordoing everything that way and it got the required results.
After 4 years I could have stopped taking the MAO-b inhibitor, but my neuro was dead against it. I stopped of my own accord after eight years and have never looked back.
I suspect your motives for your unkind article, and it is obviously aimed at dissuading other people from doing the walking. You must be proud of your efforts, but they were definitely not in the interests of any Pd sufferer.
in reply to JohnPepper
I think people should do the walking if they think it provides them some observable benefit. I.e if it elevates their mood, or helps with symptoms etc. Especially if walking is all they can do. Id apply this logic to all other exercise too.
If they want to alter the rate of progression of their PD, i think they should do what the studies indicate is the best thing to do.
I don't see how anyone could have a problem with that position.
I do have a problem with you making scientific claims that you have no basis to make, and if pointing that out makes you think I am an agent of the pharma machine (or whatever) then that's fine.
My suggestion that people follow the science is entirely in the interests of all PD sufferers. It mightnt be in *your* interests.
Gioc in reply to
well then, tell us what these scientific studies are you referring to, or do you have a conflict of interest in doing so?
JohnPepper in reply to
Hi ChrisWF. I have been spreading the message about FW for over twenty years. Not everybody can do it or even wants to do it. For all those who have done it, in exactly the way I suggest it, they will succeed. FW is not my invention, I learned to do it through an organisation called Run/Walk for LIFE. They provided all the scientific proof of the benefits obtained by following the rules. Both my late wife and I derived a great deal of benefit from doing it. My benefit was that my Pd got lot better; she lost 14 kgs in weight and came off all her blood pressure and antidepressant pills she had been taking for years.
John, you mention you got to 10 km in 70 minutes——-I’m at 4.2 miles in 60 minutes. Been at that speed for almost two years. I’m 208 lb and 6 feet tall at 58. Am I not going fast enough?
Hi FergusonJR. There is no fixed target for speed. The objective is to walk as fast as you can. When you do that it is, in my opinion, what makes the brain go into 'Fight or Fight' mode and produce a natural chemical called GDNF., which repairs damaged brain cells that control the production of dopamine. The shortage of dopamine is the cause of Pd.
I suggest that you don't try to walk as far as you can for an hour, your aim is to find out just how FAST you can walk! If you do some warm-up exercises first and then start walking AS FAST AS YOU CAN FOR AS LONG AS YOU CAN, you then stop when you can no longer keep up that speed. Few people are able to do that for more than 20 minutes to begin with. But that 20 minutes is worth more than one hour of walking. Keep on walking every second day and slowly but surely you will go a bit further each time. You can aim to increase that starting time by no more than 5 minutes every second week, but if you cannot walk any longer at that fastest speed then stick to that time for the next two weeks and then see how much further you can walk at your fastest speed and do the same every second week until you reach 1 hour. I only mention that 10 kilometre walk in 70 minutes because it was a fun race and the time was measured by the organizers.
I hope this helps you.
In case anyone is interested your book is on the Kindle unlimited plan so if you have the plan you can borrow it to your library. The book Spark also speaks of working at your personal maximum for a period of time, each person's is different and the book speaks of GDNF too. My husband has recently had 2 serious spinal surgeries and fusions PD was diagnosed in between the 2 surgeries. It would be difficult for him to walk because it is too weight bearing right now, thinking he may be able to adapt it to a pool walking or treading water, I understand about the maximum effort. Reminds me a bit of HITT training. That is also good for your brain, but way to impactful on body for most older folks. Hopefully once cleared for more exercise by surgeon this will help. Pain is still a big factor for him so we will work towards this goal. Peace!
Hi Sydney75. I wish your husband a successful recovery and whatever he chooses to do when his health returns to normal, I hope it all works well for him!
JohnPepper in reply to
If you are referring to a medical solution to our problems, I would like to know what that solution is please!
JohnPepper in reply to
I try very hard not to react to your posts but try as hard as I might, you always get my back up! I want to ring these 'Discussions' back to a more 'civilized' level. How do you expect me to react to:- John's precise plan of 45 minutes here, 5 minutes there, wait 19 minutes, take a day off, take 2 days off but wear a red shirt etc. will slow your PD (and John literally makes up the science he uses to argue that it does).
That is nothing like what I recommend! Where did you dream this rubbish up? And WHY did you say it?
I have never claimed scientific proof of what I am saying. I always say it is my opinion! How can I give scientific evidence if nobody appears to know about it. If they do, they are keeping very quiet about it!
the scientific studies are pretty clear about how to do it, and it isn't "fast walking".
Really? Could you show me their 'Clear results?'
Please make an effort to be honest and objective in your posts, I find it very hard to be civit in my response to you!
in reply to JohnPepper
Didnt you characterise my post yesterday (which wasnt impolite) as being something Donald Trump might have written? So much for you supposedly seeking civility 🙄
That was before I made the decision that we were not getting anywhere, for which I apologize.Tou may be part of the medical profession, which should make no difference. You are entitled to your views and if your goal is to make others believe that I don't have Pd or that I haven't successfully helped anybody, then you have a right to do so.
So let's be more mature in the future!
Hi John,
I'm curious as to what your peak heart rate is when you're fast walking for an hour.
Have you ever measured it? At your age, would you say that you reach around 110bpm or more?
I have never measured it. I recently had a Cardiac Ablation operation to my heart and after that my pulse has been very regular, which it wasn't before the operation.I walked this morning and will be walking again on Thursday. I will try to count it for you and let you know.
That'd be great to know for everyone. I'd say that your pulse rate probably goes well over 110bpm since you walk as fast as you could, but wanted to verify. Looking forward to hearing back, John.
in reply to rescuema
It would be good if John was to wear a reasonably accurate (i.e chest strap style) heart rate monitor, given that you are fairly clearly setting him up to draw new conclusions about his fast walking.
rescuema in reply to
What does it matter how accurate his heart rate is whether it's manual or through digital HR? Are you afraid that he just might reach what some scientists deemed to be in the "therapeutic zone" by a small study?
It helps no one for you to constantly be cynical and harass someone on this forum. You're tireless in hounding John as you have over a year ago under your older name Horace99 on the below post on the same exact topic.
healthunlocked.com/parkinso...
According to Dr. Katrina Volz (PhD in stem cell biology & regenerative medicine), they determined that "It became very clear is that Parkinson's is not one disease. It actually is many different diseases... we picked up on five different clusters of Parkinson's patients." - BrainMind Summit at MIT 2019
John obviously does not belong in your idiopathic Parkinson's cluster, but I believe he has a form of parkinsonism with the problem in the ability to release dopamine to synapses resulting in his movement disorders and he's definitely not faking it, so accept the difference and just please let go. The bottom line is that everyone benefits from exercises - medium or high intensity, or simply moving around.
in reply to rescuema
"What does it matter how accurate his heart rate is whether it's manual or through digital HR? Are you afraid that he just might reach what some scientists deemed to be in the "therapeutic zone" by a small study?"
The only reason you are interested in his heart rate is so you can then point to it and confirm that it is in this "therapeutic zone", so I don't know why you are belittling the study design. You are already stacking the deck for by drawing a conclusion for him before he has even reported anything. As for whether accuracy matters, what is the point of asking him if accuracy doesn't matter? You might as well just push on with your existing conclusion and not bother asking him to measure it.
I have acknowledged elsewhere that fast walking may push some people into the 80%+ zone. So no, I am not "afraid" of that at all.
My suggestion that John measure his heart rate accurately (not sure why you would have an issue with requesting an accurate measurement, but anyway) is driven by:
1. John draws inferences in favour of Fast Walking wherever possible (and sometimes even when it isn't possible). Anything that doesn't support his existing conclusions is ignored.
2. John suffers from the following symptoms (inter alia, and this is in 2010 and according to him - I doubt they have improved) that clearly could impact his ability to take an accurate manual heart measurement whilst also 'fast walking':
16. Poor concentration.
22. Bad memory.
25. Inability to multi-task.
Consequently, it isn't difficult to imagine that 95 could be rounded up to 110, whether intentionally or not.
We are never going to get to the bottom of whether John has a parkinsonian condition or not (interesting that you have ruled out Essential Tremor), since he refuses any further diagnostic efforts. What some of us would like him to do is stop misrepresenting fast walking. For starters he could stop implying that fast walking will enable people to come off medication entirely, at least until he can demonstrate success stories that are not him. If exercise is good for us in any form, does it need misleading claims attached to it? No, it doesn't.
Several posters have been run from this forum because they could no longer tolerate John's relentless war on PD meds. It is actually documented. So spare me your faux outrage about my cynicism and "harrassment" 🙄
Even if I was 'horace99', so what? Plenty of posters have joined under new accounts. I'd also note that 12 people seemingly agreed with the comment that you linked to. Maybe it's a more popular sentiment that you are willing to acknowledge. Or maybe those 12 accounts were others I have set up too, perhaps? 😂 Maybe it's just you and me here, and every other account you interact with is just me??
rescuema in reply to
Expecting that he'll probably be over 110bpm is stacking the deck? Wow.
He has repeatedly recommended to others to walk as fast as they could (which will obviously result in sweating), so I am wondering what that is for his particular case, an 86 year old with a few decades of walking.
Like I said, your cynicism knows no bounds.
I have definitely noticed others being very impatient with his anti-pharma views to the point of leaving the forum simply because they get annoyed with his stance that the meds are harmful in the long run and do not slow the progression. However, I've NEVER seen John being hostile or ridiculing anyone harshly for using medications that they absolutely need. Show me where he has done this.
Here are John's symptoms:
"Here is my list of symptoms. I still have most of them, but the movement symptoms are now at a very low level. The Insomnia, constipation, tremors when stressed, are still problematic.
Posture
Balance
Clumsiness
Insomnia
Constipation
Speech Difficulties
Chest Infections
Memory Problems
Tremors
Depression
Dribbling
Urination Problems
Writing Problems
Rigidity
Biting the Inside of my mouth & tongue
Confusion
Daytime Sleeping
Flexed Toes
Concentration
Inability to handle Conflict
Inability to Manipulate Fingers
Inability to Multi-task
Inability to Walk on Uneven Surfaces
Lack of Feed-back
Poor Coordination
Watering Eyes
Emotional Instability "
healthunlocked.com/parkinso......
in reply to rescuema
If you dont think that John's all-caps "WHY TAKE MEDS WHEN THEY DONT SLOW PROGRESSION" is ridiculing the use of meds that people absolutely need, when the answer is not only bloody obvious but has also been put to him 1000 times, then fine. Not my problem. It just happens to be a group whose practices he is ridiculing, and not an individual. And who gives a shit if 'hostile' or 'ridicule' are the appropriate terms anyway? You have acknowledged that people have left because of his relentless pushing of anti-pharma views. Apparantly you dont have an interest in ensuring that those people feel comfortable visiting here. When it comes to the feelings of some ill-defined group that you claim has left becuause people cant let others have their views (as you claim below, enjoyed your Trumpian use of 'many', by the way), you suddenly hold grave concerns for their feelings.
healthunlocked.com/parkinso...
rescuema in reply to
Correct me if I'm wrong, but that was his passionate response to people who take the Dr. prescribed meds at regular intervals even when they don't need it yet. He was also inferring to himself from his personal experience where levodopa didn't help him just as it doesn't help some on this forum who were also diagnosed with PD.
Just as others who leave this forum for one reason or another after a quarrel, you've been driving others away from this forum by regularly ridiculing others who are pro alternative/supplements.
"Apparantly you dont have an interesting in ensuring that those people feel comfortable visiting here." - Look at yourself in the mirror.
in reply to rescuema
Seems odd that you acknowledge that John's anti-med rants have driven people from the forum but then seek to interpret those rants in the best possible light (lol, passionate. Ok). If you think those rants exist solely in the narrow frame in which you are claiming here, then good for you, I guess. I suppose all those that left simply misinterpreted him. Seems like a logical conclusion from someone that uses the term 'fake media'.
As for me driving away others? Who, please? Any names? ElliotGreen is still here, and frankly my remarks about JWH were relatively tame, given what others here have said about her.
No shortage of members made it clear they didn't think the place should be home to off topic arguments about COVID19 treatments either. Wonder who was posting those. By the way, I never got to thank you for your hydroxychloroquine advice. Now, if I get COVID, I can inform the doctors of your threads, and they will administer your protocol. Thanks again for the actionable info.
rescuema in reply to
Show me ONE example where he didn't say that in light of his frustration against the general medical practice that simply promotes the meds blindly for all.
in reply to rescuema
Why tf would i show you anything? You will simply deploy the same mental gymnastics that you have already ably demonstrated. "He has run people off the forum but his comments were reasonable and simply passionate!" Ok mate.
rescuema in reply to
Thought so.
in reply to rescuema
And all of this because I suggested an accurate heart rate measurement. You wierdo.
rescuema in reply to
lol
Edit: by the way, stop editing your comments although I know you love to do so - it gets out of context.
in reply to rescuema
Priceless, given that you do it too. "After a banter"? Ring a bell? I love that you think i will take any notice of any instruction you provide. Bit slow?
rescuema in reply to
Changing a word doesn't change the context, especially before your reply. You on the other hand insert a whole paragraph or two.
in reply to rescuema
I dont change things after i recieve a reply. I accept that things might change after you start drafting your reply. If you are slow at typing, maybe there's a vitamin you could take for that.
rescuema in reply to
Oh I know you do, quite often. Don't lie.
in reply to rescuema
Maybe there's a vitamin for my lying! (And i actually don't).
rescuema in reply to
I certainly hope so! 😂
edit: there you go again!
in reply to rescuema
Screenshot? Put up or shut up.
rescuema in reply to
Denial denial...
in reply to rescuema
How you going with that list of people ive run from the forum? Any time is fine.
rescuema in reply to
I value their anonymity, but we talk. All people have to do is visit your replies and how you often engage in pessimistic ridiculing with various members who don't post actively anymore.
You said it - you were actually pretty tame with ElliotGreen but not so much with others, especially not with bepo
in reply to rescuema
Thought so. No evidence whatsoever. This is in 'massive election fraud' territory. I have the evidence but i can't provide it! Good job.
Why dont you report the posts that you think fall foul of the rules? Instead of making up claims about massive forum member disenfranchisement.
rescuema in reply to
Sure whatever helps you to sleep.
My resting pulse rate was 52 and at the end of my walk today it was 78.
A lot different to what you thought!
Yes sure is! Much lower than I expected but your resting HR is also much slower than most as in trained athletes or you suffer bradycardia which is unlikely. It would appear that you're coasting with a few decades of the routine under your belt. If you measured 78 at the end of exercise while stopped (vs during) then it’s also possible that the HR quickly dropped from the peak. How is your health lately? Have you recovered from your surgery fully?
Thanks for your interest. My pulse rate has always been low, but before I started seriously exercising in 1968, I know that I used to get very out of breath and my heart was pumping very fast, I do not know what my pulse rate was in those days. I started the exercise to strengthen my back, because of having prolapsed a disc and only exercise could improve my pain levels.My health is back to normal but I am not as fit as I was two years ago, when all that trouble started. I am struggling to get back to walking 4 Ks every second day.
I know what you mean. My resting HR is also in the 50s, but that's because some of us are quite used to endurance exercises and fit. I guarantee you that most PWP starting will never be able to coast with HR in the 70s while walking as fast as they can and sweat. Hell, I can't even manage that!
When you were going out of breath with a higher heart rate, it was probably to compensate for your blood pressure change that was lowering oxygen supply, maybe due to the meds if I were to guess.
That's admirable that you're still so motivated to get back in shape at 86 even after the heart surgery. Even if others may not be able to attain the benefit at your level to completely go off the drugs, you're a model for why people should absolutely try.
I walked 4 Ks this morning, for the first time in nearly two years. OK.my time was just over 10 min per K, but my legs are getting stronger. I keep wanting to fall forwards when my walk is finished. It is difficult to explain. I am not standing upright, but find it really difficult. After a rest, I can stand upright and not feel that I falling forward.
So that’s over the speed of 3.75mph - that’s a decent pace for a long walk. If you feel like you might tip over you may be experiencing a temporary balance issue in the result of a blood pooling when you stop abruptly instead of gradually slowing down for the BP and HR to adjust. You could’ve been dehydrated as well so be sure to drink enough liquid as well as replenishing electrolytes. For now, you might want to stop trying to measure your HR manually and get a decent HR monitor if you want to keep track of it. At a walking pace, wrist Fitbit or iWatch work pretty well for HR monitoring. Keep your eyes on it and be sure to go see a Dr if it gets worse if the above doesn't explain the issue.
Thanks. Is this Fitbit very expensive?
No, a decent model with GPS tracking feature and sleep monitoring is around 120 US$ on sales right now. it’s called “Fitbit Charge 4,” and costs less than the Charge 3 without innate GPS tracking that’s not on sale at the moment. The more recent models cost much more with smartwatch features along with oxygen and temperature monitoring but seem bloated with clunky user interface for now. I like iWatch but the battery life is only about 1 day vs Fitbit's 7 days (with GPS turned off). There are even older Fitbit models with fewer features that you can get for a lot less. I wear Polar chest strap HR monitor for running because the wrist ones aren’t very accurate for higher intensity, but many models are also affordable while not good for 24/7 + sleep anomoly HR monitoring.
I live in a country whose currency is now graded as JUNK. Our Rand was once equal to the GB Pound. Mow 1 GB Pound is worth 23 Rands. The GB Pound has also devalued in that time. My pension does not even cover 10% of my expenses, so I live on my savings. So I have to watch every cent I spend. Living more than 26 years since I retired has not helped matters.
So excuse me for asking the cost of something I can ill afford.
There are also many knockoff brands that are much cheaper and work fine nowadays - go out to an electronics store and see what you can access. They should be more affordable.
Thanks.
My falling forwards problem is the result of not standing erect. If I am leaning forwards I will naturally fall forwards. M problem is trying to stand up straight, after finishing the walks. Most older people tend to bend forwards at the hips, and the muscles used to keep them upright become useless due to lack of use!
Sounds like you’re describing camptocormia, often associated with PD. You said you were fine after a short rest? So unlikely the more common senile osteoporosis - go see a Dr and get evaluated.
I seem to be living in the doctor's waiting room these days. If it isn't this it that. I prefer to meet my Pd problems head-on and find my own way of overcoming them. I don't need or want more medication.I walked 4 Ks early this morning and was able to stand upright at the finish. It is;t easy but I am winning!
It’s good to hear that you’re continuing in your recovery after the surgery. You’re a trooper!
How can a person write a book about a subject that nobody knows the real cause and less about the drugs given and then make money on suggestible innocent hurting people.
If not for such notable anecdotal success coming from people such as John, there wouldn't even be scientific studies eventually acknowledging/proving such benefit. Unfortunately, the same analogy could be applied to many PhDs, MDs, and scientific researchers who have no in-depth knowledge of knowing the real cause of various illnesses, nutritional knowledge, and knowing what contributes to actually healing the bodies systemically except to prescribe meds with myriad known/unknown harmful repercussions, often incorrectly. A positive mindset based on hope, motivation, combined with truly beneficial exercise has a tremendous value.
Thanks for that information. I Hope I didn't affend anyone.
You didn't. ; ) Welcome by the way.
Thank's
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