Do we already know about any chemical substance that has been proven to reverse the symptoms of Pd?

GDNF (Glial Derived Neurotrophic Factor) was discovered way back in 1993. In 2005, a study was carried out on human beings in Bristol, England, on 7 patients. One of those patients died from an unrelated heart problem but the condition of all the others managed to improve quite considerably. This story about GDNF has been on and off ever since 2005, with the manufacturers stopping manufacture of the GDNF and the stopping of all trials. Then pressure was brought to bear on the manufacturer to start producing the GDNF again and then new trials continued, but with no promising results so far.

In 2006, at the 1st World Parkinson's Congress, held in Washington DC, it was announced by Doctor Beth Fisher that human beings produce this GDNF, in the brain, when they do certain types of energetic exercise. The studies carried out by Dr Fisher proved that the condition of all those taking part improved considerably, due to the damage to the brain cells being repaired by the GDNF.

Why is it that neurologists are not telling us all about this GDNF. Why are they not telling us all to start doing regular hard walking, to produce this GDNF in our brains, which repairs the damaged brain cells and causes our condition to improve. Why are they carrying on with producing artificial GDNF - which then has to be implanted into the brain - when we could all be producing it naturally, by walking regularly? I think I know the answer to this question, but I will leave that to you to draw your own conclusions.

Have you heard about GDNF? Should it not be common knowledge by now?

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  • It's easy to say get walking to produce GNDF some people like my husband can't walk for any great distance. Pd 28yrs.

  • Hi Macelott2. We are not all alike and we are not all at the same stage of Pd. My questions are meant to raise an awareness of things that can influence the progression of Pd. I'm interested in what you said about your husband. He has had Pd for 28 years? If so, what is his state of health at the moment? Can he still walk? Can he move around alright?

    John

  • Yes it is too easy to say get walking i agree and you may be reassured that people may have slowed symptoms with exercise - not only walking, but no one else has managed to reverse symptoms or appear normal and be drug free.

  • Hi Hickoi. Yes! As usual, you are correct. I know of many who are busy reversing their Pd symptoms. My book has several letters and emails from such people. I can send you and anybody else the many emails I receive but I would have to ask these people first if they want that to happen. I have not yet received any emails from people who have come off their medications yet, but it took me 8 years to do that.

  • As I remember John you were only on Eldypril (selegiline) so only one tablet to come off which is very different from others 8 yrs post diagnosis.

  • Your memory is either faulty or you did not see that I took Sinemet and Symmetrel for the first 2 years before being taken off those and put onto Eldepryl. In my first book I said that I only took Eldepryl but when Dr Doidge came here and went through my medical records he picked up that I took the other meds to begin with. When I wrote the book, over 10 years later, I had forgotten about the first 2. I rectified that in subsequent books.

  • Yes John i do remember that you originally said you took Sinimet for 3 months after having been on Selegiline but now it seems you took it for a year before you took Selegiline. It might be said you too have a faulty memory! ūüėäWhatever the significant point is Sinemet never worked for you which is surprising for someone with pd. . As Doidge said in his book your diagnosis was / is controversial. However i totally agree with promoting execise.

    Interesting to read you took Symmetral,(Amantadine) i hadnt read that in your posts before.

  • Hi Hikoi. You rather surprise me! In my response above, I said that I took Sinemet for 3 years, not 3 months. My medical records showed that I responded well to the Sinemet and Symmetrel! You must have read one of the first three editions.

    I think Dr Doidge was referring to the reaction of the medical profession, which has created this controversy. They are trained to believe that there is NOTHING WE CAN DO TO STOP THE PROGRESSION OF PD! Because I have been able to reverse most of my movement symptoms the doctors, who have not examined me, say that I obviously don't have Pd. That is the controversy!

    I have mentioned this in many posts since Doidge brought it to my attention. I have also spoken about it in my more recent editions of the book.

  • You have mis read my post

    To clarify - in your early posts you said you were started on epidryl and after 2 years your dr put you on sinimet which you took for 3 months but as it didnt work you stopped it.

    Then your story changes and you say you took sinimet for two years though you didnt remember you did until Doidge said you did and now you have just written you took it 3 years! ! What is one to believe!

    If you did in fact start on sinimet at diagnosis how much and how did you find it, did you need to increase the dose. if you responded well why did you stop it? And then there is the amantadine strange you never mentioned before!

    John i question you because you continually write wiith clear emphasis on stopping or not starting meds. You have never felt symptom relief from meds have you.

    Doidge is a psychiatrist not a neurologist. His book uses anecdotes to support what he writes but with no means of verifying them.

    As one reviewer wrote:

    "Doidge reports Pepper's symptoms in perplexing detail before revealing several doctors claimed he had a less severe variant of Parkinson's, not the real deal.

    Diagnostic quibbles aside, I was baffled that Doidge would devote nearly 70 pages to this single controversial case. Pepper's dedication is inspiring but his is an atypical sample that hardly extrapolates to the wider Parkinson's community….."

    Your last neuro reviewed you a year ago and said you do not have idiopathic Parkinsons - 99% of those with PD on this forum will have idiopathic Parkinsons. This would explain why no one else has reversed symptoms with your programme. It would also explain why you dont really understand some of our symptoms. For example having an essential tremor as you do is quite different from a resting tremor which people here have and which you have never experienced.

  • Hi Hikoi. I have never said I was started on epidril or eldepryl. and after 2 years my Dr put me onto sinemet. From where did you get that? When I spoke about being on Sinemet for 3 months, that was in 2002, after I had been on Eldepryl for 8 years. My point was that even though most of my symptoms had disappeared at that point, my doctor said I must go onto sinemet, which was a load of rubbish.

    Where did I say I took sinemet for 3 years?

    Where did I talk about amantadine? I don't remember what the dosage of sinemet was, at the beginning.

    As I di not have a resting tremor I was not aware of any relief from taking the sinemet. However, the doctor's records show that I responded well to the sinemet. As Eldepryl does not relieve symptoms but merely gives the user more dopamine, it is a slow process!

    In my case, Dr Doidge never examined me, he checked the records of the neurologists who did examine me. Are you questioning those doctor's diagnosis?

    Hikoi, you are entitled to be skeptical about my claim to have Pd. That is your choice. There are at least two irrefutable facts about my case that need to be be emphasized. I am probably the only patient who took a monotherapy of Eldepryl and also one of very few who did Fast Walking. I was probably one of very few who gave up their job immediately after diagnosis. Maybe, instead of looking for ways of getting people to doubt everything I say and my whole Pd history, you should start looking for the truth.

    I am not going to discuss this any further with you, it is getting messy.

  • Yes agree, im totally confused by all the conflicting info. This thread is about GDNF which so far hasnt lived up to expectations in clinical trials.

  • I am of the opinion that the establishment do not want GDNF to work, but it does and it will

  • " The Establishment" ? Are they the ones who have just spent 2.5 million on the Bristol GDNF trial ?

    GDNF (or glial cell-derived neurotrophic factor) is a 'growth factor' - a special protein that is naturally produced inside the brain and supports the survival of many types of brain cell, including the cells lost in Parkinson's.

    Research studies have suggested that GDNF has the ability to encourage these cells to grow again and may be able to stop the progression of Parkinson's.

    the trial

    The study has involved 41 people with Parkinson's. These participants have had 4 tubes carefully placed into their brains and connected to a small port behind their ear.

    This device allows GDNF to be pumped directly through the tubes to the affected areas of the brain with pinpoint accuracy..

    Results so far show that the treatment is safe but that there was no significant difference between participants who received GDNF compared to those who received a placebo (dummy) drug.

  • This is my point. Why do we have to physically put GDNF into the brain, at great expense, when the brain produces the GDNF naturally, when we do fast walking. I can understand the establishment not wanting people to do fast walking as it would not put any money into their coffers, but it would not only make our Pd better but would make us a hell of a lot healthier.

    Wake up!

  • The trial was largely funded by 2 Parkinson charities in the UK. We are just beginning to understand growth factors and GDNF. So far most research has been on animals. There is still much to discover and to learn about the production of GDNF in humans.

    With such good results for the 5 original trial particpants why have much larger studies not confirmed those results?? There must be something more we dont yet know about regarding GDNF in Parkinsons. This review below suggests one reason.

    Sweden is to do a study looking at another of the growth factors, maybe it isnt GDNF only that we need but one of the other growth factors too?

    This is an interesting overview of the history of GDNF.

    scienceofparkinsons.com/201...

  • We go round and around with this history of GDNF. The dates quoted and who did the first trial, vary from report to report. Regardless of all this confusion, we, the patients, are being led by the nose by the establishment into believing that we can only get the benefit from GDNF by having expensive operations, which inject GDNF directly into the brain. This is NOT TRUE!

    GDNF is a natural substance, which is produced in the brain! The very name tells you this -Glial Derived Neurotrophic Factor - It is produced by the Glial cells.

    Why then do we need to manufacture it and then go to all that trouble to get it into the brain, when the brain manufactures it itself and in the right area of the brain where it is needed? The only conclusion I can come to is that the establishment don't want us to know this. It would not be good for business!

    Instead of finding better ways of producing GDNF and getting it into the brain, why are we not spending a minimal amount of money on finding ways of getting the brain to produce more GDNF? I believe that I know the answer to that one, because I have been doing it for years.

    What would it cost us to get hundreds of willing people with Pd to start doing fast walking? We know how to measure the amount of GDNF in the correct area of the brain. So they can measure the amount of GDNF in the brains of the people taking part, before they start the fast walking and after every 3 months, they can measure the quantity in that same area of the brain and get the answers we are looking for!

    Would that be too simple? It would cost a fraction of what has already been spent. The natural GDNF has no side effects and we would all have been getting better since 1991 if that was what they had done then!

    Am I the only one out there who knows this?

    Wake up everybody, we are being hoodwinked!

  • I have been trying to find out how they measure GDNF in the human braiin, how do they do that John, so far i havent found any info.

  • I read something about it very recently. From memory, they use a virus to guide a dye into the substantia nigra and can see how much GDNF is in that area. I will try to see where that is and if I am correct.

  • Thanks,

    So everyone would need surgery to put a virus in their brain?

  • No! The virus, acting as a vector, finds its own way through the bloodstream.

  • Are you sure? !!

    If viruses can get to the brain through the blood stream then we are very vulnerable to infections of the brain!! That is why we have the blood brain barrier.

  • Yes! They take the bad part out of the virus, leaving it with the good part, which enables it to go anywhere in the brain.

    Google Viral Vectors Gene Therapy

    Virus Vectors in Gene Therapy

    Viral Vectors

    Learn more about it.

  • The link would help

  • Google "Viral Vector Gene Therapy"

    Click on "Virus Vectors in Gene Therapy" but look at the others as well

    Click on "Viral Vectors"

  • John i havent found mention of viral vectors use in measuring GDNF but it seems they are not without possible side effects.

    There are a limited number of viral vectors available for therapeutic use. Any of these few viral vectors can cause the body to develop an immune response if the vector is seen as a foreign invader. Once used, the viral vector cannot be effectively used in the patient again because it will be recognized by the body

  • Hi Hikoi. I read an article where they had done a study on Pd patients and measured the increase in what I assume is either Glial cells or dopamine. I can't remember. I am suffering from information overload.

    I would not even think of going that route to prove that fast walking creates more dopamine in the brain because all we have to do is a regular UPDRS test on people doing the fast walking. That would not satisfy the scientists because they would want to know how that dopamine got there.

    As far as I am concerned I don't care how i got better, I am happy to be medication-free and to be able to live a healthy lifestyle. Others can pick the bones as to why this has happened, and why it is still happening.

  • John i am mearly asking you to elaborate on what you wrote 2 days ago

    You said "What would it cost us to get hundreds of willing people with Pd to start doing fast walking? We know how to measure the amount of GDNF in the correct area of the brain. So they can measure the amount of GDNF in the brains of the people taking part, before they start the fast walking and after every 3 months, they can measure the quantity in that same area of the brain and get the answers we are looking for!"

    You stated we know how to measure GDNF and i asked how because i am interested in how it is done but it seems you actually dont really know this for sure.

    I wonder if you answer posts from the email notifications or if you go back to the thread and check first before you reply. It is far less confusing that way.

  • Hi Hikoi. What part do you want me to elaborate on?

    There are two ways to do a study on the effect of fast walking on the progression of Pd. The one I mentioned here is where some form of scan, which I read about, using a virus vector to highlight the glial cells in the part of the brain affected by Pd. The scan should show an increase in the number of glial cells after doing the fast walking.

    I have been looking for that article but have not yet found it. I did find the info for you on Virus Vectors, which I remembered from the article but I have not yet found the article. I certainly did not suck this out of my thumb.

    I might have the wrong thing highlighted, it might be the dopamine in that part of the brain but I don't think so, I think it was the dopamine producing cells.

  • John when or if you eventually find the information on how GDNF is measured in the brain can you please post it.

  • I certainly will

  • Hi Hikoi. I cannot find your question about "Off" being a side effect of medication. If you Google "Parkinson's Disease Medication Side Effects" then click on "Side effects & problems with Levodopa" You will read under "Side Effects "Over time, levodopa can become less effective. You may get 'off' periods where you feel weak and can't move well. The effect of your dose may wear off quickly."

    Is that just a comment or does it mean that it is a side effect?

    I have only read doctors comments that it is a side effect of Pd medication, whether of levodopa or not I don't know.

  • I didnt ask that question John it was Soup i thnk and on another thread, here

    healthunlocked.com/parkinso...

  • Coped well until 2yrs ago,started getting hallucinations which I found hard to cope with, taken off a lot of his meds which has resulted in him losing his mobility. Now has too use 3 wheeled walker to get about. Very frustrating.

  • Hi Macelott. Medications all have side effects. That is why I am very wary of them. Often, we have to take other medications to deal with those side effects. Then these other medications also have side effects and they have to also be dealt with. In the end, we are taking a whole cocktail of medications, while none of them do anything to slow down the progression of the Pd. I would rather only deal with the Pd, it is simpler.

    John

  • I agree 100% with JohnPepper's above statement about meds/side effects. I was handling my PD somewhat, it is the Dystonia or "Dystonic Storms" side effects that have made my life a living hell! If I could go back I would make different choices.

    I haven't heard of the medication induced Dystonia being reversible even if i stopped the PD med that caused it. Have you John? or anyone else know much about this issue? Any info would be greatly appreciated.

    Love, DF

  • If you have dystonia from the medication it will only happen when on the medication.

    Unfortunately Dystonia happens in pd without medication too. I had a terrible attack before diagnosis. Its very complicated i find to work out what is actual disease symptoms as the condition progresses.

  • My toes curl up still to this day, mainly when I am standing or driving my car. What dystonia do you have?

  • Are you talking about cramps? How do you distinguish dystonia from cramps?

  • Hi Hikoi. No! I am talking about dystonia. My toes don't cramp when they curl up, they just curl up.

  • I am surprsed you can drive a car when you have dystonia in your foot.

  • Perhaps you are surprised that I can walk erect!

  • I have had toes that curl up whenever I stand for any length of time and when I am driving. I am able to straighten the toes and exert downward pressure on them, when I am standing, and keep them straight with the weight of my body. When I am driving it is more difficult. It is NOT PAINFUL and I do NOT GET CRAMPS!

  • Thats not my understanding of what dystonia is like. Everyone talks of pain.

    Dystonia and parkinson tremor treated with DBS.

  • Please tell my neurologist! He obviously does not know this!

  • Oh dear, i wouldn't have any faith in a neuro who did not know about dystonia.

    dystonia is characterized by painful, prolonged muscle contractions that cause involuntary repetitive twisting. These result in abnormal movements and postures.

    Dystonia is the third most common movement disorder, affecting an estimated 500,000 adults and children in North America.

  • So what do you think causes my toes to curl tightly up?

  • Havent a clue, all i know is that the muscle contractions of dystonia are like cramps only often more painful than cramps. when it happens on the foot it would stop the person walking on that foot.

    In the video it shows painful dystonia of the neck and shoulder and resting tremor which would never be able to be controlled by focused attention. The video also shows that unlike essential tremor this resting tremor stops briefly when the hand is used.

  • Hi Hikoi. I am happy to accept my neurologist's diagnosis. It may not suit your description. I am not going to pay my neurologist for a consultation to please you!

  • I never asked you to have another consultation i was only explaining what dystonia is. i could see you did not understand the pain that people experience with dystonia and now it is clear why.

  • Clearly ¬£¬£¬£¬£¬£$$$$$

    I am currently on the trial, double blind, so may be receiving a placebo; no matter it is exciting and does give that all important emotion of HOPE for PwP. I do use many of the other complementary strategies, such as Conductive Education, coconut oil, low protein intake, relaxation etc., etc.. and to date have kept as positive as I can.

    Have read a large number of your posts and totally concur re walking (if possible of course). It is just about the only time that I feel energised, have a strong feeling that your suggestion it triggers the brain into producing GDNF, may be correct. I certainly hope so.

  • Hi Ksc. I don't understand the pounds and dollars start to your post. I assume that you think I am here for the money? I hope not!

    Which trial are you on? I don't believe that a shortage of any chemical causes Pd. I therefore don't believe that taking anything like coconut oil can 'cure' Pd. Pd is a movement disorder that is caused by a lack of a neurotransmitter in a small area of the brain, where the cells have been damaged by the build-up of a protein named alphasinuclein. We do not know why this protein is built up in those cells. It has been thought for a long time that the cause is a combination of the presence of certain genes and the ingestion of certain toxic chemicals. We cannot go backwards and unwind this process, we can only look for a way to reverse it.

    The body has in fact got its own way of REVERSING Pd and that is a substance called GDNF (Glial Derived Neurotrophic Factor). This name means a repair kit, produced by neurons (Nerve Cells) in the affected area of the brain. This has been known for well over 20 years, but has not been properly conveyed to people with Pd.

    Unfortunately for us, it is not easy to get the brain to produce this GDNF. It can only be done by doing certain types of exercise, like 'FAST WALKING'. Somewhere I have read that the body produces this GDNF when it thinks it is under attack or in danger. Certainly, walking fast would send that message to the brain, when we walk fast, because that action is not 'normal'. When we fight or run away from danger, we are bound to pick up injuries. We would never have survived as a species if we were unable to repair damage caused by fighting or running away. So the body produces all sorts of 'repair kits' to repair organs and muscles and even broken bones.

    Why don't we all know about GDNF? I can only think that it is not in the interests of either the pharmaceutical industry or the medical profession for us to be able to overcome such a lucrative health problem by merely walking fast.

    This is not pie in the sky, because Amgen, a large pharmaceutical company in the USA produced artificial GDNF and in 1993 a study was carried out on 6 Pd patients in the final stage of Pd in Frenchay Hospital in Bristol, England. That study was so successful that all 6 patients improved consderably. Now that must have been bad news for lots of companies involved in producing medication to deal with the symptoms of Pd. So much so, that it took another 10 years before anybody did another trial on this GDNF. Guess what? This trial, and a 3rd one both failed. Can you believe that? After 10 years, they were unable to improve the delivery of the artificial GDNF into the brain and they then gave up on the idea. Amgen then ceased manufacture of the artificial GDNF. There was a big hue and cry about this and the US government made Amgen restart the manufacture of the artificial GDNF. More trials have been carried out since then but with no success. They could do it right the first time but have not been able to do it right since then !!!!

    This all stinks of skulduggery, but I could be wrong. I want to know why, knowing that the brain produces its own GDNF, don't our doctors tell us to start doing fast walking, and we will then produce the 'repair kit' ourselves and would get better, as I have? I had better be careful and not spread the word about all this, but what the hell, at 80, I can't live that much longer!

    Now, added to this mystery, as a result of taking medication that does nothing to slow down or affect in any way, the progression of Pd, our bodies are suffering from the side effects of all that medication and we have to deal with that as well. We are given even more drugs to deal with those side effects and even more drugs to deal with the side effects of those drugs. What a mess we are in, but hey, one day they will find a cure for Pd and we can take that 'cure' for the rest of our lives. I'll lay a bet that that cure will be very expensive and we will have to continue to take it for ever. That to my mind is not a 'cure' it is more skulduggery.

    We have the ability now t reverse Pd, so why don't we all take heed of it and for those who are still able to start doing fast walking, lets get on with it and reverse our symptoms, as I have, and start leading a normal 'MEDICINE FREE' life?

    Good luck!

    John

  • Hi John, thanks for taking the time to make such a detailed reply. The ¬£&$ was in response to your question "I wonder why they are trying to produce artificial GDNF?" My apologies if that was mis-read.¬†

    You are clearly very passionate about your method of controlling PD and why not? Quite inspirational and I think your arguments make a lot of sense. I DO BELIEVE the walking bit, embrace the concept totally, and that is based on how improved fast walking makes me feel. The rush of GDNF may also explain why PwP when put into a fearful situation are able to do things that they are not normally capable of doing.

    However I feel that care should be taken not to paint all of the medical profession with the same brush. Contrary to your point about failed GDNF trials at Frenchay and no solution being made to the delivery mechanism, work has been quietly progressing. A team of medical people who are equally passionate about finding a better solution.

    I am aware of the smell left by Amagen and again this was my £$ remark. 

    I am on a phase 2 of a GDNF trial, still in Bristol in the UK (now Southmead) and they were at pains to give participants the whole "dirty background".

    As you so rightly point out PD is an individual disease and as such each person determines their own path.

    I would dearly love it to be a "natural way" but also wish to help science move forward in the hope that £ and $ will not prevent a cure.

    Wishing you many more Med-free years!

  • Hi Ksc. I am sorry to not have added the rider about 'Not all doctors are unprofessional', I was in a hurry! I would like to add the rider that 'most doctors are very professional'. I sincerely believe that most doctors are too busy to read all the literature that comes out regularly on all aspects of Pd. The result is that they cannot be held responsible for not being aware of either the news on GDNF emanating from the 2006 1st World Parkinson's Congress held in Washington DC or all the history surrounding the GDNF trials.

    If someone had spent a fraction of the amount spent so far on making artificial GDNF and getting that GDNF into the brains of patients, we would all be doing fast walking

    and many of us would be medication free!

    Can you imagine what the pharmaceutical industry would think of that?

    Kind regards

    John

  • What if you have a back injury that makes it severely painful to fast walk? or if you require the aid of medication to get your legs to work? Any advice John?

    thank you so much for your posts. :-) and sharing what has helped you.

  • Hi Darkflower. I cannot possibly guess what your back problem is. If it is the same as mine was, which was caused by a prolapsed (Burst) disc, the answer is, short of having a laminectomy, is to strengthen your core muscles, which I did fifteen years before my doctor was convinced that back surgery like that was safe. Keeping the core muscles strong and supple, is good advice to everybody for backs. Talk to a physiotherapist about that.

    When you say that your legs don't work, you probably mean that you cannot get them to do what you want them to do. If that is the case, you are speaking to the right man.

    When I had been walking fast for several years, albeit very clumsily and with bad posrure, resulting in falling often, I found that my conscious brain could control my walking without any problem at all. I also realised that all the movements that gave me a problem were things that I did without having to think about what I am doing. I did not think about how I was walking, I just walked. I did not think about how I brought food up to my mouth, I just did it. I did not think about how I wrote I just thought about what I was writing. That means that my subconscious brain was controlling all those movements. It appears therefore that my subconscious controlled movements were using a part of my brain which is affected by Pd. Not so with the consciously controlled movements. So all I had to do was take conscious control of my walking, my writing and bringing food up to my mouth.

    That was easier said than done. I had to first work out what my legs were not doing and then see if I could consciously control that particular part of my walking. In my case, my left calf muscles were not lifting my body-weight up onto the toes of my left foot. I could consciously do this with no problem. All I had to do was learn how to cosnsciously do it while walking. It took a while to get it more or less right, but it still happens that if I am not concentrating on what I am doing I immediately walk flat-footed on the left foot for a few steps until I take conscious control again.

    In order to acheve this I had to not think about walking I had to tell myself to walk but thinking about two movements only. as I put the weight of my body on my left leg and lifted the right foot off the ground and immediately lifted my left heel up up off the ground so that my weight was on the toes of that left foot, as the bent right leg was approaching the point where the heel was about to touch the ground. Then I had to concentrate on straightening the knee of the right leg just before the right heel landed on the ground. My subconscious was doing most of the work but my conscious brain was not willing me to walk, it was concentrating on one leg movement at a time and seeing that the leg was straight as the heel touched the ground and the heel of the left foot was up in the air and the left toes were carrying my full weight. The toes of the right foot were up in the air at about 30 degreees to the ground, when the heel landed. Then I knew that I was walking properly on my right leg and the left heel was hitting the ground perfectly while the right toes were holding my bodyweight.

    While my right leg was doing the walking my brain was consciously seeing that my shoulders were held back and my chest was sticking out and my head was upright.

    That is what I did, but you may not have the same problem as I did, in fact it would be surprising if you did.

    I still walk in the above way 18 years after I first made that discovery. I stil stumble when I am not concentrating on what I am doing.

    When I demonstrate to other people how to walk consciously I first ask them to show me how srong they still are, more for their benefit than mine. I hold their left arm interlocked with my right arm, so that they can't fall. Then I ask them to put their weight onto the left leg. Then I ask them to show me how far they are able to stick their right leg out in front of them, having shown them how to do it first. Then they put their weight onto the right leg and stick the left leg out in front of them. Then I ask them to stand up on their toes. Then I stand behind them and I ask them to swing their arms as high as they can, backwards and forwards. They all have been able to do all these things, better than I can. I have very limited forward and backward movement of my legs.

    Then I ask them why they don't move their legs out as far as that when they walk and they don't swing their arms. They don't know the answer. So then I say, let's just think about placing our weight on our left foot and then we'll stick one leg out at a time and off we go, concentrating on what we are doing and not WILLING OURSELVES TO WALK! They all have been able to do this, even people who had been confined to a wheelchair.

    Why not try doing what I have described here? Get someone to hold your left arm and then go through all those motions. Never stop thinking about what your legs are doing. I would love to be able to walk without having to think about it but I can't. I will never be able to. But so what? I can walk as fast as anybody else and I don't have too many falls anymore.

    Then I concentrated on the posture and that was easy to do. The problem is that if I stop checking it out all the time it reverts back to slouching and bending forwards at the hips.

    I hope this all helps!

    John

  • I had back surgery in 97' for a herniated disc in my lower back and also have 2 discs that are bulging but not herniated so i was told they couldn't operate to correct those. My PD and dystonia aggravate my back. :-(

  • John,

    A few short questions, all relating to GDNF.

    1. Apart from yourself, are there others who are almost med free like yourself? If yes, who are they and why don't they backup your case?

    2. I assume there are plenty of keen or professional sports people who have become PD patients, people who exercise hard and are very focussed. Why do they end up like the rest of us, forced into taking symptomatic medication, rather than being rigid?

    3. Can you supply information on Dr Beth Fisher's research? Links to research papers, data, her presentation to WPC 1, anything you think would be useful.

    4. Does Dr Fisher claim that increased levels of GDNF produced as result of exercise can result in PD patients being able to go almost med free. If this particular point is covered in point 3 above, please ignore this question.

    Thanks in advance, it would help me on a personal project and, I'm sure, help others reading this thread.

  • I fear you are whistling in the wind grey. I have asked John such questions so often i give up. I have also corrected his misinformation on the AMGEN saga but nothing changes. Good luck.

    Check out the thread 2 yrs old called

    "Why is nobody wondering why GDNF has disappeared off the face of the eath. The first trial in 1993 proved highly effective on all 7 people?"

  • Hi Hikoi. I know you think I am being evasive but I am not. I am, as you know, 80 years of age. I am not a good researcher, but I don't suck information out of mid air. I wrote my book in 2002 and the second edition was written in 2006, after the 1st World Parkinson's Congress. I quoted information on Dr Fisher's trials which I mention above in my response to Grey. I did not imagine it and SPRING Times would not have published a load of rubbish. It is unfortunate that SPRING no longer exists and I don't know if Mr John Telford is still with us.

    I am not being evasive or withholding information, I just don't know where to find it, if it still exists.

    John

  • John I quote you

    "have spent the day looking for the original website that I got up having entered "GDNF, Dr Beth Fisher". That website does not exist anymore. That website gave all the tests and test scores....The fact that I can no longer access that information is a sign that somebody does not want people having access to that information. You can look at all the websites that come up when you enter, "GDNF, Dr Beth Fisher", which are rather vague about the tests. There are no longer any facts and figures available, for which I am not responsible."

    BUT

    Beth Fishers results are all contained in an article YOU have given a link to John. These are the results. You refer to

    ORIGINAL ARTICLE

    The Effect of Exercise Training in Improving Motor Performance and Corticomotor Excitability in People With Early Parkinson’s Disease

    bu.edu/neurorehab/files/201...

  • Hikoi, thanks for the reply, I've taken a quick look at the two year old thread, one or two errors stand out, I'll read through whole thing later.

  • Hi Grey. Yes I have had two women this past month and have asked both of them to give me the full details of what, how and when it all happened. Neither of them have come back to me. The one lady is 88 years old and has difficulty emailing. The other is much younger and a personal friend of mine. I will write to her again or better still to her husband.

    I have had several patients who have cut back successfully on their meds but have not yet cut them out altogether.

    To question number two. The answer is that I don't know! I don't have anybody that I know personally, who is or was an athlete and who has Pd. I do know and have worked with people who were good tennis players and who were able to walk properly after I had shown them how. They were all on fairly heavy medication and whether they have tried to reduce it I do not know. I am not in the position to be able to question them on what they do or don't do. I am merely trying to persuade people to follow my lead. There are many who now walk properly, having practiced using their conscious brain to control their walking. Short of getting them to write to you, if I knew your email address, and getting you to believe their stories is another thing.

    At my last support group meeting held in Johannesburg last month, a patient, whom I barely remembered from a year ago, came up to me and thanked me for giving him his life back. He had been walking badly and after I had shown him how to walk he has in that time, returned to being someone who does no longer look like a PwP. I never think of finding out if these people still take medication or what their symptoms still are. You can imagine the situation after these talks that I give. I am surrounded by people wanting to ask questions and others wanting to be shown again how to walk. I never get time to do any information gathering. Whether you believe this or not is your decision.

    A book containing my story is in print and is due to be launched next month. The author is very well known and he has examined my history, first-hand, and has satisfied himself that everything is as I have said it in my book. I will release his name and the title of the book next month.

    I have spent the day looking for the original website that I got up having entered "GDNF, Dr Beth Fisher". That website does not exist anymore. That website gave all the tests and test scores. From those tests Dr Mike Kelly wrote his report in SPRING TIMES and I quoted that report in my book, exactly as it was written, with the written approval of the editor John Telford. The fact that I can no longer access that information is a sign that somebody does not want people having access to that information. You can look at all the websites that come up when you enter, "GDNF, Dr Beth Fisher", which are rather vague about the tests. There are no longer any facts and figures available, for which I am not responsible. Again, it is your choice as to whether you believe me or not.

    I don't think that Dr Fisher's tests made any mention of medications, or whether the people taking part in the study were on medication. One lady, who lived in Cape Town and moved to Norway, had very good results with both the walking and the medication. She had had DBS and when I last saw her, she was not in a good way because she needed a new battery for her implant but could not afford to pay for it. She left SA after that and we only heard from her recently. I have not yet had the opportunity to question her. I will get that information as I am sure she would want to give it to me.

    Various support group leaders will also testify to what I have been doing, but they are not medical people and might be very wary of laying themselves open to controversy. I will see what I can do in that direction.

    You can look at the following websites for information on GDNF:

    news.bbc.co.uk/2/hi/health/...

    parkinson.org/Parkinson-s-D...

    bu.edu/neurorehab/files/201...

    jneurosci.org/content/27/20...

    I feel quite sure that this information is very critical to the GDNF trials and it would not do Amgen or the people who have backed this way of insinuating artificial GDNF into the brain. The natural way of getting GDNF into the brain by encouraging people to do energetic exercise , thereby producing natural GDNF in the area of the brain that needs it, will never generate money for big pharma. Money talks!

    Have you followed the GDNF story, the record of tests or trials and the stopping of manufacture of artificial GDNF and the government intervention making Amgen start the manufacture again?

    It is intriguing.

    Thanks for your patience.

    John

  • John, thanks for reply, it's 1:30am here so off for beauty sleep

  • Hi Grey. These are the sites that I originally accessed and which contained all the results of the trials. I am unable to access them now.

    ncbi.nlm.nih.gov/pmc/articl...

    ncbi.nlm.nih.gov/pmc/articl...

    ncbi.nlm.nih.gov/pmc/articl...

    You can try them.

    John

  • Walk-training Increases Expression of GDNF in Pectoralis Muscle

    This may interest you john, but it is a mouse model

    scholarworks.wmich.edu/cgi/...

  • Hi Balderdash. I could not see any information after the title pages!

    John

  • Ive just opened the link,its a 21page honors thesis,not suggesting you read it all but you may find the conclusion interesting

  • Hi John you keep on inspiring me. Although I cannot do the fast walking I do believe in exercise. All the exercise I can do. It is a pity you have to argue about futilities. Love Josie

  • Hi Josie. How are you doing? Is it impossible for you to walk now? Do you still get around on that vehicle of your? I don't know what to call it?

  • I am doing quite well John. Indeed I do quite a lot with my trike. In January only more than 650 km. Walking has to be practised more but is not so easy after all operations. But I donot give up. I holy believe in your GDNF and exercise story .i am nearly rid of my sinemet now. I admire the patience you have to explain and explain and explain. Remember :if it were possible to create a pill with the effects of exercise it would be the most succesful pill ever. It is easier to take pills but better for mankind to exercise a lot.

  • Bless you Josie. If people knew how badly you are affected by Pd and how well you do, they might just be tempted to try and do some exercise nstead of putting their faith in medication. I know of nobody who has got better as a result of taking medication. They might temporarily 'feel' better, but it does not last very long!

  • Hi John

    It is not that my park is gone. Far from it. It is only that the sinemet does not do much I was on 3x4 50/12,5. They want me to take higher doses but I refuse. Better do a lot of exercise. 1000 km of cycling since december 20th. And it is winter here. That made me bring back my medicine to 3x2 and 3x1 . I tried to leave behind medicine completely yesterday but now the tremor starts to be too strong so I go back to some sinemet. I want to improve my walking too. Have to find ways to do that. With the cycling there is an app called ring ring and I am competing with others

  • Hi Josie. Are you talking about cycling on your natty machine? From memory you are unable to walk, am I correct?

    Because cycling is not weight-bearing it is not as good exercise as walking. But if you can't walk, what choices do you have?

  • I have got to improve my walking too. It is not easy. As you know I broke my hip 2013 leg 4 cm shorter, got An artificial knee and Parkinson 2014, new hip and longer leg 2015, other artificial knee 2016. Now everything is muddled up.

  • Hi Josie. When you say everything is muddled up, do you mean they put the new hip into the knee or vice verca? That must be very uncomfortable!

  • You are so funny. No I mean: some musceles are too weak and some too strong I think and I have a false coordination due to all operations. It is difficult to go back to normal walking. But it is a challenge too. If I walk longer distances I have to use a walker. If not my whole body starts to hurt

  • Hi Josie. However you walk, whether it is with a walker or without, you will strengthen your muscles and your will build up your stamina. Not walking will only make you weaker! So you will just have to start walking again and keep at it until you are strong enough to walk normally again

  • Hi Hikoi. This blog is getting cumbersome. I cannot get to your questions to answer them. They don't come up. Your last question about which doctor diagnosed Essential tremor, that was the first one. Which one said it was not idiopathic Pd, it was the one I went to in 2015. I asked him what is idiopathic Pd and he said it is where the cause is unknown. I asked him what caused my Pd and he said he dd=id not know. I don't know that anybody knows what caused my Pd, therefore it is idiopathic.

    This all comes from neurologists who have not examined me and people who don'r appear to want others t think that I have genuine Pd. I wonder why?

    Dr Doidge mentioned this in his book.

  • Stop arguing start walking or any other exercise I want to say to everybody.

    Even if my form of Parkinson or any other form of illness is different from yours: exercise helps against many forms of illesses. Move your lazy bum sitting behind your computer arguing about 1001 things that you donot agree with: go outside and just do it, walk enjoy the sunshine the birds the wind etc. Go girl or boy go

  • That's the way! Give it to them straight!

  • John, those were not posted so are not there to answer.

  • Hi Hikoi. To what are you referring?

  • John i refer to comments you made above about the first neuro who diagnosed you with essential tremor and the last one who said you did not have idiopathic parkinsons

  • Hi Hikoi. My first neurologist said that my tremor is an essential tremor. The neurologist I consulted in 2015, when asked what Idiopathic Pd is, told me that idiopathic means "Unknown cause" and I asked him what caused my Pd and he said he didn't know, but I do not have idiopathic Pd. Now how do you understand that? It is meant to confuse us all.

  • Well most here have idiopathic pd which you dont have.

  • Hi Hikoi. One neurologist says I don't have idiopathic Pd but has no way of explaining what the difference is between what HE THINKS I have got and anybody else with idiopathic Pd.

    Is is because I don't have a resting tremor?

  • How can i know on what basis he made his diagnosis? All i know is idiopathic pd is the most common pd and essential tremor is NOT a symptom of idiopathic PD. If I recall rightly you have or had another family member with Essential tremor. Essential tremor can run in families.

  • Hi Hikoi. Perhaps the name essential tremor is wrong, but I did not name it, he did. I asked him what my tremor was called, long after he diagnosed the Pd. I did this because it is not a resting tremor.

    You, and many other people seem hell bent on making others believe that I do not have Pd. I don't know why you do this but I find it most annoying. All my symptoms are Pd symptoms! Many other Pd patients have the same tremor as I do. I am not a doctor, and I don't think you are!

  • If it is an action tremor then it is essential tremor.

    Do others in your family have a tremor?

  • Hi Hikoi. Nobody in my family or my parent's families has ever had Pd or any for of tremor.

    Do you think that a person with Pd cannot also have an action tremor or essential tremor? If so how can I have all the Pd symptoms I have? How can 4 neurologists be wrong in their diagnosis?

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