John's contribution to PD group regarding exercise is supported by professionals and research. John having or not having PD does not affect that fact. One example:
walking briskly, can help to improve the symptoms of Parkinson's disease
The walking sessions met the definition of moderate intensity aerobic exercise, with the average walking speed approximately 2.9 miles per hour ....45-minute sessions of moderate intensity walking, three times a week....
The researchers found that the brisk walking sessions resulted in the following improvements:
Motor function and mood: 15% improvement
Attention/response control: 14% improvement
Tiredness: 11% reduction
Aerobic fitness and gait speed: 7% increase.
I support and appreciate John's compassion and sincere concern for the welfare of us that do have PD.
Note: His purpose is NOT to sell his book. He clearly states and if you (the stone thrower) did your due diligence before accusations where thrown, you would see that everything in his book regarding exercise for therapy, is FREE on his web site. Just as he tells all that read his posts.
53 Replies
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why not
by the way
are you johnpepper just posting under another name
only he would post something like this
or am i johnpepper just trying to keep my name on the page
Sorry, RP, but I must correct you. When JPepper repeatedly proclaims (as in his reply to me 10 months ago) that, "The only type of exercise that has been scientifically proven to produce GDNF in reasonable quantities in the brain is FAST WALKING. Most older people I know hate walking. They ask me regularly if there is any other form of exercise that produces GDNF and the answer is always NO!", he is NOT "supported by professionals and research" as you claim.
Consistently and emphatically insisting - even to GENUINE Parkinson's patients in advanced stages of the disease - that the only 2 choices they should consider are 'Fast-Walking & No Meds' is reckless, dishonest, and potentially harmful. healthunlocked.com/parkinso...
Older people in advanced stages, and/or others with, perhaps arthritic conditions, compounding PD, may not be able to do brisk walking, or maybe not much walking at all, so one has to use common sense, when reading some of the advice that is working for PWP, and using it for themselves. I believe in exercise, and that it helps with PD. I modify some exercises to fit what's best for me, at this point in my life. It is wonderful, that people feel comfortable enough to share how they cope with having a debilitating illness, and what helps them!! Each day I learn something new with just reading this forum, Parkinson's Movement.
I do enjoy your contribution very much but I do have concerns about anyone on this site who promotes an exclusive answer to fixing PD. We can all read posts selectively and only accept the bits that fit our view, affirm those who agree with our view and ignore or argue with the others. But we all need to feel some openness to differing view points without continually being told that we have it wrong to the point that people stop posting.
I believe we all accept exercise is very important the issue is the promotion of one right way, especially when there is no evidence that anyone else has managed to followed 'the' path long term. Personally I have no confidence in the claims when I read
"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".
There is also the difference of experience between those Who are in the early stages of PD and those later. For instance this statement below may be accepted and believed by those who are in the first five years or so of knowing they have PD. I suspect that people who have had it longer would think the poster doesn't really understand PD to dismiss tremor and rigidity as such minor problems.
"I have never been very sure about what symptoms L-Dopa medication is supposed to alleviate. I suspect that the main symptom it is supposed to alleviate, albeit for a short period, is resting tremor. Why anybody needs to take medication for that I do not know. It is not painful, it is not damaging in any way. It is unsightly, and many people are far more self-conscious than I am, and would go to great lengths to hide that problem. I am aware that the moment the affected limb is put into use, the tremor disappears. Voila! Clench the fist and you have no tremor! That is being altruistic, I know, but think about it! If you have a resting tremor and it worries you, because it is unsightly, then concentrate on holding the fist clenched, when you are in other people's company. I have seen patients sit on the hand that shakes, or put it in a pocket, but why take a tablet? L-Dopa is also supposed to relieve the rigidity, but is that the same as relaxing? I am not able to answer these questions because I don't have a resting tremor and I don't have a problem with relaxing my limbs and my core muscles. It is not easy to learn how to relax but it can be done."
As to the research John refers to but never posts it is valid but over 10 yrs old and much has been learned in those 10 years, let's move on past one way is the right way.
Is your concern that I promote "an exclusive answer to fixing PD"?
To clarify, I do not. I like most members herein want to read about the experience and knowledge from other members without vitriol. As long as we keep within the HU rules for posting, I want all to feel welcome.
No no not you but John Pepper does and this post was your support for him. His responses to people who disagree can stop them posting (and I expect that I will now be told by someone that you don't have to read them).
I think you are missing my point, john overwhelms people who disagree with him. He is a very confident retired businessman who speaks with great authority . It is this that gives some people the confidence they want but if you have a different view it is difficult to question or disagree (you can review his responses on posts)
In general I do not accept most of his claims. But for those areas of recommendations that are shared by neurologists and professional researchers, I do find helpful in guiding my choice of treatment and therapy.
Hikoi, John Pepper gave me a lot of hope in the possibility that I could fight this condition and live an active life. Is it false hope? Who cares. It makes me get up and do everything I can and look in the mirror and feel I can do something. As long as it works, and for whomever it works. I find your posts very helpful as well. You have directed my attention to ongoing research and publications for which I am grateful. I know several people who do not take meds after two, three or even five years. I doubt, from research, that that makes much difference in the long run but it is their choice.
Thank you for your encouragement. I still maintain that his responses to people who have different views is not constructive and has led to people quietly leaving the site.
That is most unusual to take nothing 5 yrs post diagnosis. . At the risk of hijacking the thread .....
The research on delaying meds concludes that motor fluctuations and dyskinesias are not associated with the duration of levodopa therapy, but rather with longer disease duration and higher levodopa daily dose. Hence, the practice to withhold levodopa therapy with the objective of delaying the occurrence of motor complications is not justified.
Three years plus, w/o medication. I expect that time will come. When I do medicate, the drug will be effective later in my life than if I started at dx. Neurologist says it does no harm to postpone drugging myself. While not on medication, the money saved will be considerable. While not on medication I will have better health free of awful side effects.
I am one of those people-I have PD for 7 years and take Azilect only.
Janice Walton thinks that with PD neurons become blank but with Levadopa use they eventually die. I am not sure it is so but for now I can cope without drugs. Gym 2 hours daily keeps me alive,
When the times comes I will start getting " dopped" but hope I can manage without those a bit longer,
Raissakagan, Thank you for your response. I am 2 years post-diagnosis and am on the edges of the 'honeymoon' period when you say to yourself, "Not so bad, I can do everything." I take no meds so maybe there is an argument for taking Azilect which I understand is an MAOB inhibitor. I have noticed a definite progression in tremor where it is noticeable to others; a real weakening of my right side, which is the tremor side, to the point that I notice I'm using the left hand for many things. I noticed in swimming the vast difference between the sides; I also feel stiffness and some achiness in movement on the right side. I am due to return to neuro in April or May to discuss this but do you think it's okay to be with no medications at all? I wonder what is happening to my dopamine storage. I am 75. I do exercise a bout 2 or 3 hours every day but have been away for a month and doing nothing so that can explain some things; also some stress dealing with family....aren't they always stressful?
I have been diagnosed 7 years ego at the age of 50 and the tremor was noticeable straight away.
Plus reduced fine motor skills, limping leg etc. PD Textbook case.
Luckily my job had a gym so I started to exercise daily 8 years before PD manifested.
Perhaps daily gym explains the mild progression of my PD-I don't take any meds except Azilect which I took 2 years ego on recommendation from John Pepper.( when started didn't notice any difference inPD whatsoever)
9 months ego I found on line the Janice Walton program for PD.
It gave me hope to recover and I trusted her and found her observations of PD character very true.
I hesitated when I read her warning abut medication and tried to get off Azilect.
Unfortunately 6-7 weeks later I developed high painful tonus of muscles on right affected side and after some struggle came back to it, defeated.
I decided to proceed with the Janice Walton program anyway. FSR ( very similar to Reiki) and Positive thinking can't be harmful I decided. I wanted to recover-badly.
My husband gives me FSR on the right foot every day for last 6 months. I done CBT as Janice recommended and do her mental reconditioning exercises daily on top of meditations and affirmations...
The results? Unfortunately it is very difficult to say if the results are recovery symptoms or PD progress induced.
I will better share what I noticed:
•circulation in the leg s is better, dystonia in the foot almost gone
•flexibility is down- twice a week I do yoga and there is no doubt
•arms and especially are weaker- again body pump classes prove it
•I can force walk on treadmill with no stop for an hour (6 km)- a progress
•fine motor skills are down.
•more difficult to get up from armchair plus balance is slightly worse.
I read Yahoo Janice's program related site posts about people who are stuck in weakness stage for years-I won't be so patient if it comes to it.
However I do what I can and keep faith in the program by reading Janice's books daily.
I know faith in recovery is one of the most important ingredients for succuss,
Look, I have PD for more than 7 years and stay away from being Leva "dopped: -that is quite an achievement and I am proud of it. I put a lot of efforts in staying positive no matter what.
I am not for suffering- when it comes to it I will start medication.
I am just adamant to delay it while I can to see if I can recover from PD. Plus as aside benefit leave the dopa "window of opportunity" intact.
You are good- three hours in the gym is quite an achievement!
I can now do max 1.5-2 hours a day.
But I break sweat when I walk my 6-8 km on treadmill and for me it is a big effort.
Question about timing in starting medication is highly individual and complex. I am not sure my decision is right.Would be great to hear other peoples' opinion.
I am blessed with great supporting husband and no stress life (luck plus choosing what is important carefully and avoiding anxiety which brought me to PD in a first place).
I hope cure will be available one day but unwilling to put all bets in one basket. Plus doing something to stay as healthy as possible is empowering! Helping to resist unavoidable with PD doom and gloom.
I was curious to know if you managed to reverse your symptoms with the programme you followed. I see from your profile you followed Janice W for a year but by the end you write you were in a bad way and had to accept levadopa.
People can only overwhelm those who let them. Each of us has the ability to reject the opinion of another. In your comments, you tried three times to convince Roy that John Pepper is too aggressive in his post. Would that be considered by some to be too aggressive or "overwhelming?" I believe as Roy does, that we can read these posts, take what we believe is helpful., add it to what we already know and build our knowledge base. I do not think John Pepper has anything but good intentions. Sometimes he does seem a bit single minded about his views, but he did provide citations for his research along the way. We can believe or not, as we choose. I also believe that it is not productive or useful to challenge people unduly in our discussions. It distracts from the central topic. Just an opinion here/
The problem with some of John's posts is much more significant than other people being "too sensitive". It is great to recommend a potentially useful treatment. It is destructive to routinely throw cold water on anything else that does not include said treatment, especially in PD.
The reason for that is the placebo response is very powerful in Parkinson's. Positive expectations regarding the outcome of treatment causes the release of dopamine, which is not just feel good, but *therapeutic*. Likewise making negative suggestions regarding a person's treatment may well have the opposite effect.
So there is more than mere personal annoyance involved here, in fact people's anger in response to this is healthy. The destructive behavior by John Pepper is still going on as of this date and it needs to stop.
Try to stay focused, RP - the subject of your post is JPepper and people's response to HIS lofty claims - not yours (thus far). What you view as "vitriol", however, may be considered by others as justifiable critique of highly dubious claims.
Worth pointing out is the fact that neither the title of his book 'Reverse Parkinson's Disease' nor its contents are "supported by professionals and research". To the contrary, his book and his claims are roundly condemned by medical professionals (the reason for his own frequent vitriol aimed at them).
I like your attitude RoyProp! All should be made to feel welcome to express their views, as long as they follow the HU rules for posting, in this forum! PD can be very mild or very debilitating, depending upon neuro-degeneration within one's nervous system.This fact opens the door to many different types of commentary. As I would say, it is the nature of the disease and the way it presents itself differently for each person. I use the commentary that applies to my particular stage of PD, and I don't let some of the other commentaries bother me. This is a very helpful and valuable resource for me, and I appreciate people sharing their stories of living with PD, and all it's ramifications. This is a "club" that nobody would like to be in, from the viewpoint of having a chronic ailment, like PD, but it is important to me, that we stick together, and try to help each other out.
• in reply to
Thank you Roy for sharing your opinion, couldn’t agree with you more. I admire you for speaking out on this topic. While there are many forms of exercise that are beneficial I believe fast walking for sure has been for me. . When I hear of a recommendation or suggestion about what is working for someone else, that gives me hope. I believe that a positive attitude and hope are critical in fighting this disease. I find it disturbing when others want to discredit or poke holes in someone else’s ideas. Instead of looking for ways to disprove I’d rather look for ways to prove it works. We are what we think we are. I choose to keep my spirit alive with hope and optimism no matter how hard it can be at times.😁
This was sourced from research by others, not John:
walking briskly, can help to improve the symptoms of Parkinson's disease
The walking sessions met the definition of moderate intensity aerobic exercise, with the average walking speed approximately 2.9 miles per hour ....45-minute sessions of moderate intensity walking, three times a week....
The researchers found that the brisk walking sessions resulted in the following improvements:
Great, he's included a snippet of exercise research to justify his one-size-fits-all prescription for fast-walking, his conspiracy theories about Big Pharma and all its treatments and therapies, and his career-crashing release of a book titled "Reverse Parkinson's Disease" and you're convinced? [sigh]
It is not that I am convinced. It is I for one am willing to listen or read the opinions of others without lashing out at what does not meet my personal opinion.
...and you for one are quite willing to do so without holding them accountable for reckless, erroneous, and potentially harmful claims. Others may be less complacent. Tolerance of bad behavior invites more of the same.
Perhaps you can flip open the cover of Pepper's boldly-titled 'Reverse Parkinson's Disease' book, RP, and tell us how many members of the qualified, credentialed medical community have endorsed his book and its content(?).
"I have never been very sure about what symptoms L-Dopa medication is supposed to alleviate. I suspect that the main symptom it is supposed to alleviate, albeit for a short period, is resting tremor. Why anybody needs to take medication for that I do not know. It is not painful, it is not damaging in any way. "
RoyPop, thanks for your sane messages. I think Baily or Donny-c wants a preeminant position in this PD expertise and advice arena and feels threatened by someone who he deems has that position. Pity because his apparent routine and activities are admirable and they have obviously contributed to his good health and happiness. Yes, Baily any movement you can do is great and the more the better. If medications provide the relief you need thank goodness they are available to us all. Keep lifting those 300 pounds and doing all the strong things you do it gives PwPD inspiration to do likewise or their best.
"I think I will start adding your fast walking to my day"
"looking forward to your reply
good luck
and never give up on your dream and spread the idea
as far as u can
i will let you know if the walking helps
i wood like to get off meds
have tried but i could not function with out them
with respect
Bailey"
johnpepper reply
this is the post by johnpepper that started it all
"Hi Bailey. Are you aware that sinemet does nothing at all to slow down or stop your Pd? As such, if you don't have any tremors, what do you think the sinemet is actually doing for you? You mention joint pain. Are you sure it relieves that pain?
There is such a thing as OVER-EXERCISING and you appear to be doing that already. If you add 3 sessions of FAST WALKING a week won't you be doing even more harm to your body?
I am not a Phys Ed guy or a doctor"
there is not one positive note in his reply
" I think Baily or Donny-c wants a preeminant position in this PD expertise and advice arena and feels threatened by someone who he deems has that position "
do you stand by this statement after reading johnpepper's reply
I believe in good exercise and a good diet but there are people who just thing there is a magic drug. After 40 years of nursing I can say there is not.
I have had patients be admitted in a cloud because of the side effects of perscribed drugs.
Dr Mosley said recently that he was not taught about nutrition during his Doctorate and now his son at Medical school is not being taught anything about nutrition. Just lectures about drugs.
All of us should read Doctors research on vitamins & Minerals
Be kind to everyone
i am bailey
my original post
"I think I will start adding your fast walking to my day"
"looking forward to your reply
good luck
and never give up on your dream and spread the idea
as far as u can
i will let you know if the walking helps
i wood like to get off meds
have tried but i could not function with out them
with respect
Bailey"
johnpepper reply
this is the post by johnpepper that started it all
"Hi Bailey. Are you aware that sinemet does nothing at all to slow down or stop your Pd? As such, if you don't have any tremors, what do you think the sinemet is actually doing for you? You mention joint pain. Are you sure it relieves that pain?
There is such a thing as OVER-EXERCISING and you appear to be doing that already. If you add 3 sessions of FAST WALKING a week won't you be doing even more harm to your body?
I am not a Phys Ed guy or a doctor"
there is not one positive note in his reply
" I think Baily or Donny-c wants a preeminant position in this PD expertise and advice arena and feels threatened by someone who he deems has that position "
do you stand by this statement after reading johnpepper's reply
My opinion is , and it is my own opinion, that anger over others' postings can be a sign of the paranoia one can get with Parkinson's. There is nothing to be angry about. I don't think anyone is trying to put another down. We are simply trying to pass on what works for us, and is different for everyone.
When I was on a support site for what I thought was erythromelalgia (turned out to be chilblains)that I had for 20 years, I read a post by someone who had found a pill that worked for them. I mentioned it to my doctor. He let me try it, and from the first pill it cured it, as long as I keep taking it. So, the simplest idea that may come from someone, anywhere, can be studied and prove to be helpful.
Medication is effective for limited time. That should also be considered.
How very very sad. An old man on a mission to do what he thinks is best to promote exercise, and a particular kind of exercise to treat PD, based on his expieriance which he believes to be valid. The gospel according to John may be slightly outrageous, just like coconut oil and many other cures/ treatments . Like Hikoi I have some serious doubts , but I defend to the death his right to publish and be wrong. Patience and tolerance towards those we do not agree with is required but it is difficult to meter out. Everything is not right or wrong. The demands that John be penalized , I believe are unwarranted.
Wow! I think I'm out of here. I joined looking for positive upbeat ideas on how to deal with PD. And all I'm reading is a bunch of drama and criticizing one of the best advocates We're dealing with and excepting the challenge of Parkinson's.
I am out there fighting and exercise has been my outlet for stress, strength and outlook. Neuroscientists in Canada and the USA are touting exercise even if it is in a chair. Dr. Becky Farley developed the exercise program that we follow in Victoria BC.
When I read Health Unlocked I read info from the greats who suffer from PD and from the medical community. It is important that we empathize with those who are moving along in the disease mode and give them hope and a vehicle to vent. Caring for others is proven to develop a sense of well-being. How is that for an upbeat proposition?
My problem with John is how he is framing the exercise issue. He implies there is only one form of exercise which will help PwP - and this is not true. Also, he does not consider that Parkinson's is a disease of the aged and therefore must account for some of PwP having osteo-arthritis hence preventing them from properly exercising at all. Finally, GDNF had 2 open label trials which, in scientific parlance, does not mean that much because they are prone to the placebo effect. The one GDNF randomized, double blind trial did not do much of anything for PwP hence the lack of interest in GDNF as a therapy. The GDNF used in the study was of exogenous origin (from outside the body) and the GDNF produced from exercise is endogenous (produced in the body). But exercise does more than just producing GDNF - it is not GDNF monotherapy. Exercise mitigates mitochondrial dysfunction, raises neurotropic factors like GDNF and BDNF and it lowers homocysteine levels in the body and scientists do not know why it does the latter. Exercise also lowers cytokine levels like tumor necrosis factor alpha (TNF-a) and interleukin (IL-6) 6 which pass the blood brain barrier and thus destroy dopaminergic neurons (they are very sensitive to pro-inflammatory TNF-a and IL-6). Exercise also alters the innate immunity of the body by altering the HDL-LDL cholesterol ratios and HDL is known to protect against both gram negative and gram positive bacteria and PwP are prone to infections (versus healthy controls in studies). So by claiming exercise is monotherapy for GDNF is a caricature of what it really does. I wish he would have framed his arguments as such: PwP need to exercise and if you are able start doing aerobic walking and I can show you how. If you cannot walk fast please explore hydrotherapy, rock steady boxing, or whatever you can do. The following article is not specific in regards to the neuroprotective nature of exercise and that is the way it should be:
Does vigorous exercise have a neuroprotective effect in Parkinson disease?
In the abstract they recommend using levodopa therapy to enhance the ability of PwP to exercise and that is the right approach. If you have a tool which can make you mobile so you can exercise, you should use it.
Parkinson's is a neurodegenerative disease in which alpha synuclein spread from neuron to neuron thus destroying nerve cells and no neurotropic factor has been shown to be able to reverse the spread - though correcting mitochondrial dysfunction may help. Articles like, "Mitochondrial Dysfunction: The Road to Alpha-Synuclein Oligomerization in PD", may point the way. What is needed (and is being thoroughly investigated) is the development of drugs, etc...that penetrate the blood brain barrier to stop the spread of AS. This in and of itself would make exercise more effective in promoting neuroplasticity and neural regeneration.
I could continue blathering on about the subject but this posting is my 'two bits'.
I've recently communicated with John Pepper via email. He sent me very useful information. I'm learning a lot from him and also from everyone on HealthUnlocked.
John did not try to persuade me to buy his book. He reached out to help.
Hi there everyone.... I haven’t posted in a while because of the negativity as well. I am an ultra runner with PD going on 6 years. Exercise of any kind is the best for us. I was already a runner before diagnosis and still continue and do Spartan races ect to the encouragement of my dr. If John Peppers posts gets one person with PD up and moving , that’s amazing !!! I was criticized because I tried the B1 regimen and it didnt work for me and was told I didn’t try hard enough. I’m sorry it’s not for everyone . As we progress in the disease and age things will get more challenging for us but if we keep moving and try to stay positive with our journey will help our day to day life. Take care everyone . Karen
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