Hi guys,how many of you believe tha... - Parkinson's Movement
Well if it turns out that covid creates a lot of new cases you might get even more people working on it!
I don't believe that anybody is looking for a cure for Pd. Big pharma make far more money out of treating Pd for many years than they would if they had a once-off cure.
They do have trials on the go but they are all looking for more treatments.
They only look for a cure for health problems that killm us!
How long did it take for pharmaceutical companies to find vaccines for Covid-19?
What conspiracy theory nonsense this is. And you wonder why the medical community wont take you seriously.
I know you arent the least bit interested in learning more about PD, but for those following along at home:
There is MASSIVE profit incentive to come up with a PD 'cure'. There are several members on this forum alone who have spent (or will spend) 100k usd on PD surgery. None of those people would call that surgery a 'cure' but they spent the money becuase it was the best thing going.
Assuming a cure without lifetime treatment was possible (and i highly doubt it, the next big thing is going be a treatment we need keep taking forever, in my view) PWP would be lining up to throw stacks of money at it. MANY times what PWP spend on meds over the courses of their lifetimes.
Surgery will never cure Pd.
I am not cured. I still have many Pd problems but I manage to live a normal life, medication-free, even if you don't want to believe it, that is your choice.
Show me what studies being carried out right now, the sole purpose of which is to test a CURE for Pd.
John - here are some of the studies being carried out right now to test a cure for PD, plus a lot of studies aiming to improve symptomatic relief. Let us know if you change your opinion.
The conclusion clearly stated that - There is a broad pipeline of both symptomatic and disease modifying therapies currently being tested in clinical trials for PD.
I don't see anywhere the word CURE! It is all dealing with symptoms.
I still have many Pd symptoms, but I have been able to lead a normal life since 2002, completely Pd-Medication-free. I have no side effects to deal with and at 86 I am probably one of the healthiest people in our retirement village.
No - it’s not all about symptoms. The authors say that disease-modifying therapies aim to interrupt the pathology of PD, and there are 57 of those. In other words, treatments that will slow, stop or reverse the progression of PD.
They range from exenatide as a drug already used in diabetes, hoping to slow progress, to gene therapies and stem cells that could be one-time treatments for motor symptoms.
If companies produce drugs to cure cancer and infectious disease, why would PD be an exception? Why would they not want to be the first ones to market with a disease-modifying treatment?
Let’s look at Roche. They make the madopar I take, which costs the UK NHS £0.10p per tablet. It’s hardly the goose laying the golden egg, is it? At the same time they are investing tens of millions into the development of prasinezumab, which is in phase 2. They also recently spent $450m buying a company with one therapy in phase 1. Do you really think they would do that to keep my £0.10p per tablet running?
To say that companies don’t want to develop a cure doesn’t make any sense.
Thanks for your response. I will try to deal with each matter as follows:
I am not aware of any treatment that reverses movement symptoms. Can you please tell me what they are? You mention exenatide, and sy they are hoping to slow... That is not actually slowing is it?
You mention that companies produce cures for cancer and infectious diseases. Of course they do. But have you noticed that they only produce cures for things that kill us? They only produce TREATMENTS for things that don't kill us.
Will prasinezumab be a cure or just another treatment? The takeover you mention is for a company producing a therapy not a cure.
It makes a great deal of sense to produce treatments, because they continue to provide those treatments for many years, whereas a cure is a once-off. A cure will also cost a lot of money yo develop, so why spend that money to produce something that the patient only takes once?
John - re exenatide and many others, 57 in total, the point is that a large number of clinical trials are trying to stop the progression of symptoms, they just haven't done it yet as the trials haven't finished. A lot of money is being invested here.
You don't seem to like me using the words treatment of therapy, so what is your definition of a cure?
You haven't responded to my point about the cost of current medicines (relatively cheap) vs the attraction of being the first to make a meaningful dent in the rate of progression, or to be the first to produce something that is a once-only administration.
Of course money plays the main role in pharma companies' approach to developing new drugs. Contrary to your conclusion, it makes absolute sense that the ones who successfully produce a "cure" will win the big prize, for themselves and for us.
What would happen if a drug stopped the progression? Would the patient be able to stop taking their medication, or would they still have to take them, but would not need to increase the dosage?
My definition of a cure is something that reverses all of the symptoms and leaves the patient free of whatever has been cured.
Do you regard the cost of MAO-b inhibitors as CHEAP?
I have made a reverse in the rate of my symptom progression but if I stop the fast walking they come back again. If I were cured, they would disappear and not come back again.
I agree with your assessment of what would happen if someone found a cure but that is pie in the sky. I don't believe in conspiracy theories but I would not be surprised if there is not an agreement between manufacturers not to look for cures for chronic illnesses, After all, it would diminish the future turnover of evrybody.
John - nobody can say whether medication would still be necessary if a disease-modifying treatment would still need symptom relief as well, the work hasn't finished yet. My view is that it probably will as we are dealing with dead neurons here. For example, people with DBS usually need additional meds.
With your definition of a cure, I think it's impossible, again because of dead neurons. The most advanced ones IMO are gene therapy and stem cells. Even then the focus is on motor symptoms. People have different needs at different stages of the disease, so i reckon the solution will be a mix of drugs. As long as lives are improved and the majority of PD people can live normally, I wouldn't be too bothered about definitions.
Yes, MAOI-Bs are cheap, at least in the UK. I know the prices in the US can be obscenely high, but my rasagiline costs the NHS £2.60 per month, it's been generic for some time.
I was amused by your last point about conspiracy theories, it was fine until the second "but". It's inconceivable that a whole industry has a secret anti-competitive agreement that no whistleblower hasn't exposed it.
You are terrible at this.
I never said surgery would cure PD.
I said that the money people are spending on non-drug PD treatments demonstrates how much demand there is for a "cure", completely decimating your claim that there is no money in a PD "cure".
As for cure research, look at the stem cell trials.
How many people recovered as a result of stem cell surgery and at what cost?
You asked for studies. There are studies. If you were even a little bit interested in PD beyond milking your "PD fame" for the benefit of your ego, you would know all about them.
Yes, I have read about all the studies, but I have yet to see a study being conducted on a CURE for Pd.
Thanks for the 'ego' accusation! I am sure that thousands of people I have worked with and helped would not agree with you. But people like you know much more than those who have met me and in the position to make such a call.
Do you think that a study has to mention CURE in the study text for it to be a study into a potential cure? You cant possibly be serious.
ChrisWF, I will have to respectfully disagree with you and agree with John Pepper. Pharmaceutical companies and Biotech companies can do better but they don't. The motivations are murky and might not align neatly with what John said, but nevertheless are compelling enough to predicate that they don't necessarily have our best interest in mind. Their perception and notion of "profit" is quite different from what you and I as laypersons think it is. They believe in steady and guaranteed repeatability.
The easiest way to explain it is to compare it to the software licensing model. Microsoft, Oracle, etc. make their money with licenses and are quite profitable. If you start taking a medication for a chronic condition, you are effectively paying for a medication or drug license. Believe it or not, the massive money is in the repeat income and will exceed the largest one time sale everytime!
Take for example, DBS. On average, it costs $50k US dollars unilateral & $100k bilateral. I am on a drug cocktail. Nourianz costs $1800 a month, Rytary $1600 a month, other meds cost less because they are generic. I won't include them in my calculations. So, $3400*12=$40,800 for just one year!!!! You can do the rest of the math. Even if DBS costs more in the future because of advancement in AI, they will still not be as profitable as a non-generic drug.
For the above reason alone and because patents expire, pharmaceutical companies are incentivized to follow the route of newer drugs that offer the opportunity for repeated profit. This is primarily to keep the stockholders happy. Imagine that you got a medication that cured you for good. With just 10 million of us diagnosed so far on a planet of 7.8 billion, there's not enough of us to make it worthwhile for the drug makers to invest the time and energy and effort to develop a cure. However, there are enough of us to guarantee them a healthy profit year after year under the "licensing" model.
BTW, it pains me when you and others on this forum so viciously attack Mr. John Pepper. The acrimony is palpable. John is incredibly lucid and cognitively present at the age of 87 for a Parkinson's patient. My dad who died last year at the age of 83 was barely "here" despite having no significant health problems except the ones due to old age. Have you considered that John might be doing something right ?
John is "touting" fast walking and "packages" theories such as GDNF. So what? I don't think that this negates his success and doesn't warrant such hatred and animosity.
Not really, no. Your analysis relies on the following flawed assumptions:
1. That the deployment of capital into medical research is limited to a small number of market participants; and
2. That each of those capital owners can simply choose to deploy a lucrative patented PD drug.
First of all, the whole one time cure argument is pointless. There's no likely prospect of a one time cure in the next half century. And that's because we don't know enough yet about what causes the disease or how to repair the damaged brain. There is progress, but it feels slow.
As far as John's claim that they would have cured PD by now if it killed us: if that is true, why havent they cured ALS? Or Huntington's? Or pancreatic cancer? Or any other basically unlimited number of chronic deadly ilnesses?
But let's assume there was a one time cure available. How much would people pay, given that they are evidently willing to pay 100k for surgery that isnt close to a cure? 500k? 1m?
A 'cure' for PD would sell better than iphones. And it almost wouldnt matter how much it cost. All these 60 somethings would throw all of their retirememt savings and home equity at it. I know i would. As for your commercial requirement that the income be recurring (which is not actually a real thing, by the way: loads of capital is deployed into enterprises that do not have recurring income streams), here it is: there's a million people diagnosed a year with PD. They are all going to want the one time cure. Sounds like a pretty amazing recurring income stream to me.
I dont believe the majority of PWP are spending anything near what you say you are, but lets for a moment assume they are. Clearly, some IP holders are doing well out of their PD drugs. But not every biotech firm or pharma firm is making loads of money like this. Most PD drugs are now off patent and consequently the margins are tiny. Then there's all the other firms in the marketplace that arent generating any revenue from PD patients at the moment yet are investing in disease modifying treatments. They arent making any money from rytary. They ALL have an incentive to get the next massive piece of the PD pie.
The reality is that the next great advancement wont be a one time deal. It will be another thing we have to take forever. And i dare say we are all totally ok with that. Will it be a 'cure'? No, probably not. But if it stops PD in its tracks, i dont think those of us that have PD will give two shits about what its IP holders make out of it. I know i wont.
John just lobs up the ball about the "cure" because it fits his anti-pharma narrative. It has no basis in fact or reality.
"John is incredibly lucid and cognitively present at the age of 87 for a Parkinson's patient. My dad who died last year at the age of 83 was barely "here" despite having no significant health problems except the ones due to old age. Have you considered that John might be doing something right ?"
And i would encourage you to sit down and really analyse this. Do you think that if your dad had simply undertaking a program of "fast walking", he would still be with you and as lucid as John is? Or did you witness him fall victim to a clearly devestating condition that wouldnt have given a rat's ass about how much fast walking he did?
Perhaps there is another reason (and it's painfully obvious what it is) that john shows basically no symptoms that an 87 year old man that claims to have had PD for 59 years would certainly have?
ChrisWF, I should have prefaced my narrative about the cost of medication by saying that my medical insurance pays for almost all of the cost of Rytary and Nourianz. I assumed that you would have inferred that because we have interacted with each other a few times and the topic of insurance has come up a few times. For instance, an MDS visit costs $1000 to the insurance company, discounted per contract. I pay $35. I wish I was rich enough to afford it all on my own because this benefit might go away if Obama Care is struck down next week. I will then have to go back to Sinemet etc.
The costs of Rytary and Nourianz is the discounted price to the insurance company. Street price for people without insurance is higher. My copay is $100 each which is almost fully reimbursed from the manufacturer. I end up paying $25 and $20 eventually. If the drug companies can afford to pay down that, their profits must be through the roof. No wonder they have been churning out so many new medications at such a rapid pace. I have lost count of the number.
Anyways,. I am not holding my breath for a cure in my lifetime. Consider this: the Hindus of India used Levodopa 4500 years ago (Mucuna Pruriens) with great success in their Ayurveda system of medicine. In 2020, the majority of people in this forum are using the same thing after giving up on Sinemet or Rytary. Go figure 😅
It would be funny, except it isn't. Every other medication for Parkinson's has a side effect. Mucuna (only the unprocessed, plainly grounded seeds) have little to no adverse effects. If 4500 years of human progress has not produced a cure, I am not sure that the human brain has advanced to the point that we can realistically hope for some brilliant discovery.
BTW, I am impressed by your typing speed which I am just basing on your response time. It is so consistent at any time I interact with you. What is your secret?
4500 years sounds a long time....but nothing happened for about 4400 of those years, and then we got electricity.
Sergey Brin: "If I felt it was guaranteed to cure Parkinson's disease a check for a billion dollars would be the easiest one I have written."
Plenty of interest in a cure.
Re typing, when medicated my thumbs work well on a phone. Computer keyboard typing is shot.
Her secret is: NO PD!
You know so much about me that you literally got my gender wrong 😂
ChrisWF, well, what is your secret to fast typing. I am asking because I am curious as a majority of my day is spent typing on the computer for my IT job.
Me too. Accountant. Computer keyboard typing sucks now. My thumbs are cooperating still so i browse (and reply) HU on my phone.
Congratulations Cris! Although I've never heard that the PD saves thumbs.
I personally find it very difficult to write on small keyboards.
But the PD is different for everyone, isn't it?
Yours and JP's could be very different.
Did you do the Dat scan?
You should ask for it if you can because it is a test that with the initial symptoms objectively confirms the clinical diagnosis of PD if positive.
Notably, i have not written a book about "reversing" parkinsons.
Have you been able to cease taking PD meds, Gio? I mean, between High Dose Thiamine and Fast Walking, surely yes?
You have written hundred replies to JP and 4 post in a few months on HU.
You understand that this would appear to be a search for visibility, on a par with JP, since you have been discussing the same thing over and over again for months.
Will you be famous ?
PS:Thanks for not insulting (and then canceling) me this time.
JP posts a lot. The same stuff. Over and over. If we wish to correct him, we have to reply. Over and over.
So no more PD meds right? Between Dr C and JP, your PD must have been stopped and reversed, yes?
Why you care so much about my PD that I have already written everything about my PD in the appropriate posts and I am truthful. You are a mystery to me because your posts do not show the slightest concern for the future of the disease, the PD ends very badly you know? You seem not to know it. I wish you to always be well Cris.
It's late go to sleep, it will be dawn in a while.
PS: One day I will explain to you why marketing must be based on a product that works and gives results otherwise it is "falsely advertised" which always comes back and hurts the owner as reputation.
Bizarre. You follow me around this site like a hungry dog, constantly asking me personal questions, yet when i ask you about your PD: "Why you care so much about my PD".
“In 2020, the majority of people in this forum are using the same thing (mucuna) after giving up on Sinemet or Rytary. Go figure”
What a claim! Where do you get your figures.? This shows confirmation bias, you are only seeing what fits your agenda.
Hikoi, I am not a politician, expert or doctor 😅. I can't preface every post with the caveat that I am a layperson, a Parkinson's patient with an opinion and a perspective based on anecdotal observation.
If you have been in this forum for long enough, you would have gleaned that forum members lean towards natural alternatives and well researched possible symptomatic remedies such as b1, Mucuna and Mannitol. Much more information is provided by members like Chartist (Art) and others. The forum audience loves the information from what I can tell with my observation. It's not a leap to infer that most members prefer the Mucuna. I don't take Mucuna anymore, but I don't begrudge those who do.
I too would like to see a "cure". However, I find it elusive given that the gold standard for symptomatic treatment of Parkinson's is Levodopa. Mucuna Pruriens is the "natural form" of Levodopa and controversial as it may seem, Parkinson's patients are flocking towards various forms of Mucuna Pruriens with the questionable added benefits over Sinemet or Rytary or other similar options.
There's zero evidence that a) PWP users are flocking to mucuna or that b)most members of HU prefer mucuna.
The fact that alternative or natural remedies are popular here is not evidence that people prefer mucuna over CL.
I bet i can find 10 posters that have clearly explained that they use prescription CL (in the last year) for every one that has explained that they only use mucuna.
It's not even close.
Frankly, if PWP were flocking to mucuna, your argument about pharma making a fortune from rytary is effectively disproven.
As for Hikoi's understanding of this forum and its relationship with natural remedies, she has been here 9 and a half years. She is about as well placed as anyone to observe the typical fad patterns. I know she remembers that coconut oil was the forum's next big thing. When did you last see coconut oil promoted here?
ChrisWF, the profit aspect of Rytary and Nourianz that I wrote about was to demonstrate the thought process that drives big pharma to choose to address symptomatic relief over a search for a cure. I never said that every single drug that comes out is a blockbuster money maker. However, if a particular drug becomes successful then the example I showed tells you how they make those massive profits. Their argument is that they need to recover the cost of developing the drugs that failed commercially.
I am going to stop responding to this thread. This has been an interesting conversation, but it is very tiring. If you and Hikoi fed that my opinion is bogus, then please rest content with your own opinion.
Bottom line is that we can only hope that tomorrow brings better news than yesterday. I am only saying that ismy honest opinion, I don't see the interest, motivation and incentive to work on a cure. I hope that I am wrong.
"I am only saying that in mindmy honest opinion, I don't see the interest, motivation and incentive to work on a cure. I hope that I am wrong."
The Cure Parkinsons Trust (who manage this forum, by the way) and the Michael J Fox Foundation are two organisations that can very easily point you in the direction of information that will quickly disabuse you of this misguided notion.
Hi PD Patient.
I do notice a flurry of interest in threads on alternatives but I dont surmise from that that they are using these or that they are more popular than conventional meds. I will give you my spin on what I see happening based on my observation.
1) people use this site as the source of info on alternatives as their doctors do not give them that information
2) this is a UK site but the majority of posters are from the USA. The lack of trust in government, business, academia is a US phenomenon though of course others too, but to a lesser extent. It has led amongst other things to the strident antivax lobby and to the search for alternatives and the fake news phenomenon.
3)medicine can be very expensive for US citizens as opposed to those from countries with a 'socialist' or welfare system. Alternatives are attractive especially if they suggest a cure. My meds are all free for example as is DBS.
As to the alternatives being well researched that I think is fake news. There is a little research, none on B1. I get the impression that not so many members are getting good results from B1 now. Much is anecdotal and like the coconut oil phenomenon will fade away. But people dont like being told this, they want to believe they can fast walk their PD away. We have to find ways of giving Hope which is realistic.
Hi Hikoi, unfortunately we are still dealing with an incurable disease with devastating consequences as you well know.
The disease runs within us faster than research and even if a cure will eventually come for some of us it will be too late.
That's why I wouldn't judge so harshly PWPs on HU, not their doctors, not their governments, not even their lifestyle.
Instead, I would insist that governments pay more attention to PD in order to speed up research, since I too am in a country where health is public and free.
The "when there will be a cure" for some of us is very relevant.
Discussion on the PD aside, a friendly greeting from Italy.
The sun on HU never sets.
Gio, three years ago, we toured Belgium, France, Netherlands and Germany. We had a whale of a time. We were considering Italy and Switzerland, but ran short of time. I promised my son who was to graduate this year that he and I would "backpack" through Europe as a graduation present.
Unfortunately, Covid-19 nixed our plans and as far as i can see, I don't envision doing very much traveling anymore for a few years at least. We don't know anything about the virus and whether it has been completely understood and explained. Bizzare discoveries are being made as time passes and the latest finding is that it can cause Parkinson's in some people. Imagine what that means for us. A double whammy.
I would love to travel again and definitely visit Italy, although I gather that you guys might no longer open the floodgates, literally so to speak to Venice😅
For the time being, you won't accept our passports either! Neither will most countries. I used to thank my stars everyday that my brother lives in England, about the only country that allowed travel back and forth. Now, even that is gone.
I do see a point in John Pepper's theory about the vaccine. Pfizer's announcement of a 90% effective vaccine that has been developed in a few short months does show that there is potential for a lot more in Parkinson's research. But as he said, perhaps a lot of us would have to die before that happens. Thankfully, we don't die easy. Blessing or curse do you think?
I will stop here. You were so right. This particular post was very clever clickbait with over a 100 responses and growing.
Here in Italy we are looking forward to reopening everything and you will be welcome again. Venice after the lockdowns is more beautiful and clean than ever. I know you are a positive person so sadness does not belong to you ... It will belong to someone else!🤗
His "success" !! I have seen enough of his posts to disbelieve his claims. This is some of the reasons why I don't believe he has PD. They are comments he has written.
At diagnosis his neuro said he has Essential tremor
He does not have a resting tremor
He got no relief from levadopa
His last neuro said he does not have idiopathic PD
If he stops exercising it takes SIX WEEKS for his symptoms to return
He admits that he is the only patient he knows of able reverse symptoms
He claims research proving fast walking was presented at the first WPC but that is inaccurate
He was thrown out of the South African PD Assoc because of his claims
Not one neuro or doctor (except a psychiatrist) has publicly supported him. That psychiatrist told him to stop claiming the medical profession were not interested in a cure and for a short while he retracted this.
I also find it strange that intensive exercise which we are told is the best exercise did not work for him only fast walking did. He was doing 90 mins intensive gym exercise a day. He gave that up and three months later he reports being severely debilitated and trouble walking, that is very quick decline.
I and many others have tried to have a reasoned discussion with JP over about 8 years but it doesn't work. Interestingly he is the only person to have caused such disharmony here and people have left. But someone always feels sorry for him and rises to his defence.
You may experience PD as he describes but I certainly do not. Is it trusting the written word, wanting hope or a lack of knowledge of PD that leads people to believe he has reversed PD.
"Is it trusting the written word, wanting hope or a lack of knowledge of PD that leads people to believe he has reversed PD."
I think it's all of the above (caps below are emphasis, not shouting lol)
People *want* to believe stuff like this. Faced with the anticipatory grief associated with a PD dx, OF COURSE we want to believe that we can have another 30 years of "relatively normal life" (especially med-free) by simply doing fast walking. Again, THIS WOULD BE INCREDIBLE IF TRUE.
most PWP are introduced to PD when they are dx (some of us are familial cases but we are in the minority) Consequently, they learn about PD over the first couple of years. This is when John's ideas seem attractive, because its a period of relatively mild (usually, though clearly not always) symptoms which causes you to think "you know what? Maybe i CAN walk this off". Of course, the disease's relentless march will put these ideas to bed sooner or later. This is also when he gets his testimonials, from people "feeling great". A 12 month PWP hasnt done any exercise in 40 years. Of course a powerwalk makes them feel better.
(As an aside, its also largely new PWP that frequent this site. Go back to threads from 8 years ago. Very few of those people still post. Obviously there would be numerous reasons for that, but it skews the audience towards the relatively recently diagnosed).
As i said above, the disease's relentless march will put these ideas to bed sooner or later. Which is why its very unusual to see PD veterans supporting John and his ideas. Anyone with the disease a decade or more simply knows better (and they mostly leave HU, as addressed above).
3. The written word
Deliberately or otherwise, we grew up thinking that what was written in a book was probably true. We were educated by books. Generally, teachers tought us from books and again, generally, they didnt question what was in the book. If it was in a book, it was fact as far as we were concerned. Obviously throughout life some people develop more finely tuned BS detectors than others, but nevertheless, even as mature adults, we subconsciously think that if someone has bothered to write a book about something, they probably know what they are talking about. Especially when its a topic we dont know about (see point 2 above, knowledge). You would also ordinarily assume that someone would take significant steps to RULE OUT MISDIAGNOSIS BEFORE WRITING A BOOK. Or at least update their book when new diagnostic methods become available. This is another reason our guards are down. We generally trust people to DO THE RIGHT THING. So when they don't, people are somewhat blindsided. But again, usually only temporarily.
Thanks for saying what I always think when folks unnecessarily “pick on” John Pepper. In my opinion, it’s deplorable behavior. PD is tough enough to endure without that, too. Just sayin....
No one picks on JP. He makes his claims. We ask for evidence. He doesnt provide any. He continues to make his claims. We continue to ask for evidence. He continues not to provide any. He continues to make his claims. Around in circles we go. He's had 20 years to gather some evidence, by the way. He either can't be bothered, or knows there isnt any. Either way, it isnt a great look for someone that still has a book available for sale, and continues to relentlessly make his claims.
He chose to be and chooses to continue to be a public figure in the PD community, with his books, speaking tours, donation solicitations. If he doesnt appreciate people asking him questions or analysing his story, he isnt forced to continue promoting it.
Gotta break this to you, not everything you believe is true. It won't stop you whining on your favourite theme. We could all point to ongoing research for a cure, or a part of one, and your ridiculous belief system won't change the fact of that research
You are welcome to your opinions as I am to mine, However! Have you managed to overcome any of your Pd movement symptoms, as I have?
Have you been able to come off all your Pd medication, as I have?
Have you lived with Pd symptoms for over 57 years?
Do you believe that Big Pharma wants a cure for Pd while they are making a fortune out of treating the symptoms?
Hi John Pepper, absolutely agree with you! It's all about the money and only about the money.
As far as Covid-19 goes governments are throwing $$$$$ at any company that hangs up a shingle and says "vaccine manufacturer" 😇 That kind of panic hasn't gotten to Parkinson's yet.
Why would any drug manufacturer spend a cent to find a cure for any chronic illness, which they can treat for years and years, while the sufferer continues to get worse?
Temporarily treating the symptoms, which makes the patient feel that as long as they take the pills they can lead a normal life, little knowing that they will have to continue to take more and more of the pills, while their effect becomes less and less unit they do not work at all and the side effects of those medications will have needed further medication.
I know that exercise is not popular with many people and they would rather take the pills and put up with the consequences. Let them do that! If they don't want to help themselves then that is their choice!
But for others who would be prepared to do the exercise and consequently reverse the symptoms, there are people lining up on this HU site to dispute this fact. Whose side are they on? What does it cost to walk every second day? NOTHING!
Why do I bother to continue fighting to get this fact across?
The answer is that I have lived with Pd symptoms for 57 years and have not needed to take any Pd-medication since 2002 and therefore others, who are prepared to walk can follow suit. I get nothing out of telling you this! If you want to read my story you are free to do so, but that is not my reason for being here.
"I have lived with Pd symptoms for 57 years and have not needed to take any Pd-medication since 2002 and therefore others, who are prepared to walk can follow suit."
You are unable to point to a single PWP that has 'followed suit'.
You'll be taken seriously when your success can be replicated.
I have answered this accusation before. I mention the names of 12 people whose letters to me are printed there for everybody to read, I continually get hundreds of messages from people who are delighted with the results of doing fast walking. The only reasons why I haven't printed more than twelve letters is that not many people like me to do so and I can't keep on changing the book.
And we have dealt with your response to the "accusation" before. None of these people have completely come off medication (per your own admission) and you have not done any follow ups with any of these people to see how they are going 10 years after they first wrote to you. It would be very easy to do so, no harder than posting on this forum.
Where did you get all of this nonsense? I can't possibly contact hundreds or even thousands of people., whose names and addresses I do not know. I can only contact those who contact me.
"you have not done any follow ups with any of these people to see how they are going 10 years after they first wrote to you. "
Do you even read posts, John?
What are you talking about? I answer every post I receive. How can I possibly keep a record of every post I receive from others and follow them up ten years later?
Maybe a filing cabinet? Email? Any of a number of other record keeping solutions?
Are you interested in how these fans are doing a decade later? You should be, if you are serious about your claims.
Of course I am vitally interested in how people are doing. I speak to hundreds of people every month. do you realize how many people I would have to record and follow up? It would be over 12 000. That is a lot of work for one person, plus everything I currently do every day. I am just one man, a very old man!
So select a sample. Cmon, John.
You want people (and medical community) to take you seriously but you wont take even basic steps to be serious about it.
A SAMPLE of WHAT? Do you expect me to give you a list of email addresses of a few of my correspondents? I would never reveal anybody's name without first consulting them and knowing what purpose you intend using them.
My goodness. This is impossible. I did not ask for, and do not want, anyone's contact details.
From those that wrote to you prior to, say, November of 2012 (so 8 years ago), select a sample (i.e pick some of them. No, you dont need to write to ALL of them). Then write to them (again, the sample, not all of them) to see how they are doing. Ask them questions like this:
Are they medicated?
Are they still fast walking?
How would they describe their disease progression since they last wrote to you?
Here is one of the shorter emails from a well-known person in Parkinson's circles:
Dear Mr. Pepper,
Don't be discouraged! There are others who have found many of the same truths about the value of exercise in treating PD. I am preparing to run my 17th marathon on March 2nd. I didn't run my first until 13 years after my Pd diagnosis in 1983. I am now 63 and probably in better shape overall than I was at 35. I do admit that I use a very carefully worked-out cocktail of medications to achieve this level of functionality. But like you, I believe the exercise, - diligent, frequent, and intense - is the key. Actually, it's a key ingredient to a carefully crafted strategy that includes knowledge of the disease, the medications, support from family and friends, doctors, therapists, and an outward focus on helping others that keeps me healthy, and my life meaningful. I think Perry Cohen and I agree that the outward focus on helping others helps us both maintain control over this disease.
I too have a book, and I'll happily trade you one of yours for one of mine. Just give me an address to mail to.
I believe that strength and fitness are no less achievable with than without Parkinson's and they are tremendous assets in dealing with this chronic disease.
Here's to John Pepper - live long and prosper!
Co-chair Team Parkinson
Thanks for including me in your critique of your talk to support groups.
Right off the bat, I would say that the talk is excellent. You speak from the heart and the message is clear and motivating.
I one area I would ask you to think about is the long list of activities that you attribute to keeping your Parkinson's under control. You are a disciplined person. I think very few people could match that list and live up.it. It could be overwhelming You might suggest that the Parkinson Person select just four of these skills to start with. I would think EXERCISE would be essential and go from there.
Also, you say be optimistic. As you know, you can't order a person to be optimistic. Just as you can't order a person to go to sleep. You might single out optimism and expand on what you do to stay up beat. I think it's worth at least 5 minutes of your talk. In my book HOPE I made it a central point and devoted a chapter to it.
It's a good talk. Good luck.
Thanks, John. I've read it and found it absolutely gripping. I saw an article in the Saturday edition of the Daily Telegraph colour magazine a few months ago. Was amazed and ordered it via Amazon and couldn't stop reading once I had started. It confirms many things that I already knew but also explained a very great deal more.
Let's hope your message inspires others to read it too.
That's enough to get you off my back.
Do you have a problem reading or comprehending, john?
Im talking about FOLLOW UPS. How are the people that wrote to you 10 years ago doing TODAY???
For the record, none of the people whose emails you copied here even said they were doing fast walking. One of them is a known marathon enthusiast, so he's hardly an advertisement for fast walking.
I believe within my lifetime there will a cure for many of these neurodegenerative diseases. It will come as we advance ourselves in stem cell research. My Neurologist who is heading a clinical trial, says a cure is on the horizon. He wouldn’t tell how long, but he he said soon. Check out Dr. Kim’s research.
If you're saying a cure as in reversal of the disease process back to normal, I would say no, given the length of time it takes to bring a new drug to market, but if you are saying a treatment as in a molecule that can stop disease progression, I would say that is more of a relatively near term possibility compared to a cure if such a molecule or molecules are already in existence.
Yes, sooner or later, there will be a cure for PD. But, in the meantime, almost all of us can do something to improve our condition, be it through exercise or diet or medication or whatever.
The only possibility which seems to me are stem cells. But the art of implantation has not reached to perfection especially with respect to brain
There was a rather remarkable achievement announced earlier this year - a successful neuronal replacement therapy that transformed astrocytes into neurons. The ability to transform astrocytes in the brain (as opposed to in a culture dish) into neurons is in itself quite something, but that the transformed cells behaved appropriately and restored function - it's mind blowing, really:
This is a long way off from being a therapy in humans, but it shows that it could be done.
ive been doing this long enough i never consider a cure.
Although everyone has a right to their opinion I can’t help but feel that the power of positive thought is being overlooked. I realise that this can be tough when you are struck with a disease so debilitating but with someone like John Pepper who is clearly positive, whether that has an effect on symptoms or not, is there not some quality of life to be gained from trying to turn your thought process around?
I have read with interest the arguments debated here and obviously the accountant is well placed to put his business knowledge forward relating to the economics of it but I shudder at the thought of losing any hope. Whether or not PwP can be cured or simply helped what is wrong with someone advocating fast walking or literally helping yourself? Surely trying to maintain a positive outlook is beneficial for the sufferer and those around them and if John inspires people to try, well I for one think that’s fantastic and I don’t understand why you would want to stop that?
You can call yourself a realist. You can be confident in your argument. You can be sure that you’re right. You cannot justify an attitude that takes people’s right to the comfort gained from someone else’s positivity.
Life’s a piece of shit when you look at it
But always look on the bright side of life 😊
Are you saying that the man that says this:
"I don't believe that anybody is looking for a cure for Pd"
Is a source of positivity?
And those of us that say there is major commercial interest in a cure....are not sources of positivity?
You'll have to explain that.
You'll find that those of us that have an issue with John are advocates of undertaking exercise in accordance with the accumulated scientific knowledge of the day. Very high level, this means you need to spend at least half an hour, three times a week, at >80% of your max heart rate.
It is John that claims that fast walking is superior to *all* other forms of exercise. He has no evidence for this beyond his personal experience. He claims that FW puts the body into "Fight or flight" mode because FW is "not natural" is a fiction. He made it up.
It's not 'positive' to mislead people.
There's plenty to be positive about. Get out and get your heart rate up above 80% for 90mins a week and things will start looking up! But there's no need to attach fake science and conspiracy theories about PD cure research to it to make it attractive.
Is it misleading? Fast walking is exercise. Exercise can only be a good thing. Whilst he advocates this i feel it leads others onwards and hopefully upwards. I doubt there are many if any that believe this is their own path. I just don’t think that the encouragement of reading about his whole outlook is to be underestimated.
You’ll hate me for saying it but he is inspiring. He can make some PwP look at themselves and make the effort to feel better. Maybe not by implementing everything he advocates but his story simply promotes hope. You can’t disagree with that? Surely?
I realise that was the initial question and did previously say that I had read all arguments with interest. Actually I felt your case was well put and if it were purely on the points raised then I would have been in your corner. However, it was a question and nobody really knows. These are just opinions. Debate is obviously healthy and I don’t have a problem with accepting others points of view. Well except when it’s my kids.
I am also an advocate of science. I agree with getting your heart rate up although I have to say that most science I have ready stipulates 70% max heart rate. You may feel I’m splitting hairs. Not my intention. Just that 80% I’m assuming 3 times a week 30 mins I interpret as slightly high for longevity. I also am an advocate of strength training in PwP. The repetitive movement etc, etc maintain neuro pathways but I digress. John, however does push forward the idea of exercise. Whether it be fast walking or table tennis any exercise is valuable as you mention.
I am assuming the fight or flight response is from his book? You’ve read it? I am afraid I have to say I haven’t. I privately messaged John after reading his profile and gained his take on a few things. He was enlightening, interesting and helpful. For me it was more as motivational thing and I very pleased that I did. I would say that I am also very pleased to have joined this forum and posted here as your view is also enlightening and interesting. It has so far been a good educational experience. And isn’t that what we are doing here? As I have not read his ‘fake science’ rightly or wrongly it has had no bearing on my initial point that his positivity is inspiring.
There are a number of trials that have concluded that the best heart range for slowing the progress of PD is 80 to 85% of max. Obviously the science is always evolving, so that may change in time.
"John, however does push forward the idea of exercise. Whether it be fast walking or table tennis any exercise is valuable as you mention."
How do I reconcile that with his claim that 2 years of 90 minutes intensive exercise six days week at the gym did nothing for him. ONLY fast walking reversed his PD. At times he changes this stance but he still claims fast walking is 'the' way even though he has no one able to replicate his results. I have seen letters from those who write to him. They are in the early years of PD when walking is usually not affected.
I have tried to answer your last ridiculous post but cannot bring it up. Let me do it here.
You say my posts have no content. You must be blind or just obdurate. Bluster? Because what I am saying in this matter does not go down well with you, it is regarded by you as a load of nonsense. You are entitled to your opinion, I hope it helps you to deal with your symptoms. Good luck to you!
You don’t have to reconcile it Hikoi. John advocates his therapy. We are all different. What works/doesn’t work for him may not work for everyone and only you know what helps you. I read further down this thread that Raphaekg advocates training hard as does the research that ChrisWF mentioned. Maybe it’s endurance that helps some and maybe a combination? My point that positivity helps others to actually get out there and try to exercise apart from relying on medication alone cannot surely be underestimated? I can’t believe that anyone disputes that or that it stirred up this much reaction.
"I can’t believe that anyone disputes that or that it stirred up this much reaction."
Hopefully this prompts you to ask yourself if there are aspects of this that you dont yet understand.
I ask myself that constantly ChrisWF. There are an awful lots of things I don’t understand, evidently.
I don't usually hang out here....but have more time available than usual. I am a woman (also known as a professor and PhD clinical research scientist) who has been running 90+ minutes every day for 11 years and saw major remission of PD symptoms. I worked to get my heart rate into peak HR zone (>85% max for at least an hour of that run). Reduced meds (but still got benefit from a low dose). But then: Injury. Meniscus tear in the same area that I had ripped a decade+ earlier during heavy weight training . I put off surgery for almost a year, running wearing tight compression pants, but I couldn't even walk without severe pain.
So: Surgery. 3 weeks now since running. PD symptoms have returned with a vengeance. It will be a while before I can run again.
Still: I am a HUGE advocate of prolonged endurance exercise for PD symptom remission. Perhaps it is the short-term effect of BDNF. Perhaps it is the fact that prolonged endurance exercise promotes release of dopamine. Endurance exercise causes literally thousands of molecular changes. I cannot tell you whether it changes underlying symptom trajectory because I don't know what my symptoms would be like if I hadn't run hard and long for over a decade. But I do know FROM RESEARCH (not just personal experience) that it controls PD symptoms while you do it, probably in a dose-response manner. Have PD? Exercise HARD. You are very likely to feel better. Give it some time. If you haven't been a lifelong exerciser, it will take time before you can maintain your HR in that training zone for long periods. Even then, symptom changes are not likely to happen overnight. PATIENCE. You can do much to help your own symptoms.
Good luck hope you get back to fitness soon. Any alternatives to running? I tend to run one day (though generally 50 minutes max), bike the next.
It would serve me well to find alternate activities. But I have trouble biking, since it causes/aggravates severe ulnar nerve pain. To date, I can find nothing for myself that produces the high heart rate of running, an intensity required for symptom reduction. Lower intensity exercise has certain benefits, but symptom reduction is not on the list of benefits.
I hope you get better soon, but still find a bit of time to spend on here in future.
I do plan to check in here more often! But, since I know the scientific literature, and am strongly informed by them I am prone to get into arguments. That is not healthy for my stress levels or the stress of those with whom I disagree.
Please do, you are an inspiration - I believe I had read your story previously and it helped motivate me to exercise more.
I like scientific debates and discussion; sometimes I have what I think are interesting ideas and it turns out there is disconfirming evidence - I admit it is disappointing, but it is better to learn. I don't really understand why sometimes discussions get so heated. It's discouraging when people say things deliberately to upset others - and that does seem to happen from time to time.
Please feel free to name me directly (which I assume would trigger a notice to my email) , if there is a statement that someone makes which would be amenable to scientific verification or refutation. I am a tenured professor at a major university and have been funded for several decades by the NIH as Principal Investigator of multiple clinical research projects. My area of research was not PD, but I now keep up with PD research and am well informed of current developments. I can also critique existing published studies and help to explain discrepancies among studies. I am retiring as of next September and hope to be able to spend even more time "debunking" (or confirming, when justified) belief systems among both patients and clinicians, based on well designed and peer reviewed research.
I think arguments sometimes get so heated because people have personal experiences that seem so self-evident that they can't imagine their experience to be "wrong." The problem is that it's dangerous to use one's individual personal experience (or even a clinician's observation) to infer a cause/effect relationship. The placebo effect in PD is extremely powerful -- a 'sugar pill' or belief in the efficacy of a treatment can actually produce dopamine ! So, the 'placebo effect' is not a fake effect or a psychological effect but one that actually produces a very relevant chemical change. That's why we CANNOT rely on our own personal experience to know whether a treatment works, but have to look to controlled clinical trials. And many published clinical trials have flaws, often because the principal investigators of these studies don't understand appropriate statistical applications (I do, though) or subtle flaws in their design that produce not-so-subtle false findings.
Thank you for your kind offer. I will have to take you up on it right away, as I have a burning question about DHA/fish oil, which I posted on this thread:
All I can figure is there is some major problem with the mouse models or we would be seeing negative effects in people taking fish oil supplements, rather than an association with less progression.
So very sorry to hear of your injury. Your PD symptoms returned with a vengeance. Was that a week, two weeks? Before all this started I was comfortably swimming 2000 yrs (40 laps) in 32 minutes. The exhilaration was the greatest force multiplier ever. I've always been a strong swimmer. I can barely swim 25 yards. Parkinson's punishes the inactive person and the one who wants to work out. We adhered to no pain no gain back in the day.
You will go back to running. Will you motor through the pain? Will you be able to get back to your preinjury level?
Good luck hang in there. Take care and stay safe.
I PLAN to get back to running, perhaps trying to reduce the overall daily time to an hour. But, a month after surgery, I am still having pain with simple weight bearing. So, I think it will take longer than I anticipated. Very, very frustrating. But I can only wait to heal and try to remember to have GRATITUDE. Gratitude is a powerful antidote for depression.
As for your question about symptom return: I would say that I started noticing changes after about 5 days. Two weeks post-running, my PD symptoms have stabilized at a moderate level. With regular running for 11 years, my symptoms were only apparent about 5% of the time, usually at night when I was very fatigued. People who saw me would never have thought I had PD.
Now: Pretty regular tremors, more dystonia, general sense of instability and slowness. I don't really know about walking stability, since my knee injury precludes walking without significant support of a walker or crutches. This shall pass.
I'm assuming then that you were able to suppress your intake of Sinemet?
You won't be down for long, you have a great attitude!
I wish you all the best!!
Yes, I was able to reduce my sinemet with my MDS's "consent," since I was doing so well. I reduced it twice from its highest level. Now that I am not able to exercise at all, I have been pondering whether to discuss an increase in meds, since --in addition to tremors and bradykinesia -- I experience full body pain which wakes me up too early in the morning! But there is another part of me that wants to use this experience as an "n of 1" study...when I get back to running, at what exercise volume per day will I start to see symptom remission again? Hopefully, I will find that I don't need to continue peak heart rate exercise for 90 minutes per day, every single day. As I age, my injury risk increases markedly. No more knee surgery, please!
Depends on my mood. On the one hand, there are respected scientists now saying that a treatment for aging itself is only a few years away, and since PD is usually age-related, that would mean a disease modifying treatment for PD (and AD and CVD and all other age-related diseases) is coming soon, too.
There are some specific drugs I have hopes for like inzomelid and Anle138b, and perhaps the anti-alpha synuclein vaccines or stem cell exosome based therapies could come through. There's even some supplements that might not be cures but could perhaps really slow progression (though I caution that I don't think people should try these yet) like alpha ketoglutarate or maybe sodium or potassium benzoate.
Then there's some really out of the box type stuff like this research that crossed my radar thanks to another HU member just yesterday : med.stanford.edu/tass-lab/r...
When I'm in a bad mood I remember that when I was a kid they said we were just about to find a cure for cancer, etc. And that inzomelid is a derivative of MCC950 and MCC950 never made it to human trials because it is off-patent and therefore not profitable. That mouse models have terrible flaws - and what if there is already a drug out there that could cure PD in humans but it wound up on the trash heap because it didn't work in a mouse model?
Definitely a cure is very close IMO. I'm thinking there might be a silver lining in COVID 19. Like a lot of discoveries maybe the cure will be found by accident! !! Stay thirsty my friends.
I think neuro science has advanced amazingly in recent years but there is still a long way to a cure. People have different ideas of what a cure means. If it is getting a person with PD back to their pre PD state then I don't see that happening. After all Parkinsons is a condition not a disease (despite the name). There will be different treatments for differing types of PD.
I think it is comparing apples with oranges when people suggest that infectious diseases such as Covid 19 are being cured when long term complex conditions such as Parkinsons are not. Targeting a "germ" is vastly different from treating a multifaceted chromosomal and environmental condition.