I want to motivate a study on what type of exercise produces the most GDNF in the brain. It should only take 6 months to do and when we know what produces the most GDNF then millions of Pd sufferers will immediately be able to start using that exercise to help them overcome many of their Pd symptoms, as I have. That would be better than waiting for more than 10 years for a possible cure. It would also possibly cost patients nothing to do.
Is it possible to measure levels of GDNF ... - Cure Parkinson's
Is it possible to measure levels of GDNF in a specific part of the brain of a living Pd patient?
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JohnPepper
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How can we help John? My wife was diagnosed last year. We have read your book and read a lot of other stuff but not making much progress. Judith hasn’t yet taken Sinemet but is on the point of asking for it from GP as she is feeling more rough of late. We live in U.K. in Buckinghamshire.
John
Hi Sandakan. Thanks for the offer of help. The best way you can help me is for Judith to start doing the fast walking and to start getting better. Do the walking before she starts the medication, if possible. I know you don't have to pay for medication in the UK but the cost to her will be the cumulative side effects of the medication.
You are going int winter now and walking outdoors can be difficult. o yo have any indoor facilities for walking, even a shopping mall?
Hi John
Thanks for reply. We’ve both started Nordic Walking, initially weekly, with a local group, which I’m hoping will help Judith. I also have an exercise bike which she is starting to use for 10 minutes at a time and better suited to the cold, wet weather! Do you think this would be a reasonable substitute for Fast Walking? I still wonder what it is about fast walking that makes it more appropriate exercise for PD?
Thanks
John
Hi John
For some reason I did not get your above reply. Walking with Nordic Poles is fine, but you may not be able to walk at your fastest possible rate with them.
The bike is not as good as walking because it is not weight bearing.
You may or may not have heard of 'Fight or Flight' which is the body's response to danger. When we are in trouble our body's try to protect themselves by producing something called 'Growth Factor' (GF). GF is produced by every cell in the body to repair that cell if it gets damaged or replace a killed cell if it gets killed. We would not have survived as a species if we could not repair or replace all our cells. But if the injury is too great we obviously cannot survive.
Fast walking is not natural. If we are in a hurry we would naturally run. By walking fast I think the brain thinks we are in danger and reacts t that danger by producing GDNF (Glial Derived Neurotrophic Factor). Glial cells are the ones killed off by Pd. Neurotrophic means nerve repair. So we have our own repair kit.
I want to motivate a study to prove this. Because walking costs nothing to do, it does not put money into any pockets. Who wants that?
I would love to take part!! Dx April 2018. Please let me know how I can help. I read your book & the fast walking does help calm my tremor!!!
Hi Danasr. That is great news. I cannot even start to get a study going if there is no way of measuring GDNF in the brain of a living person. When somebody tells me there is a way to measure it then I then have to look for someone to sponsor it, which will be difficult. There is no way to make money out of getting Pd patients to do exercise, unless you run a gym. That is if the best exercise needs to be done in a gym.
I would need somebody like Bill Gates to sponsor such a study, but think of the number of people it would help!
John this is what you wrote a while ago
“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!”.
I questioned this but you were adamant you were right. You were looking for where you had read it.
Now there is another of your claims that you heard someone whom you dont know and cant give any info on say It was stated that the GDNF used in the trial was toxic ... then when we question you you expect us to do all the work to find the referencs that support your claims . Not Likely as they never existed in the first place.
Who will be doing the research into GDNF for you? Have you seen this: parkinsons.org.uk/news/gdnf... ?
JohnPepper in reply to
I know about that study, but it was done with artificial GDNF, not natural GDNF.
The cost of having that GDNF inserted into the brain was very expensive.
My point of this whole effort is to get the body to produce more GDNF naturally.
I feel sure that my body produces more GDNF as a result of doing fast walking. Other people are getting improvements in their condition by doing other forms of exercise. The fact is, whatever is causing the improvement has no side effects and costs nothing. That does not make it a good business decision but we are patients with a life-changing health condition that I believe can be reversed, because I have done it, and others are doing it.
We patients have to take ownership of this drive to find the best way of dealing with Pd!
in reply to JohnPepper
I have no argument about ownership of our PD. However, research costs money and even you have no real idea about what is causing a positive change in yourself - it may be GDNF or it may not. The first research milestone would be ascertaining what is causing the difference in you.
JohnPepper in reply to
Agreed. Hence a study to determine whether GDNF production in me is different to other people and with different methods of exercise.
in reply to JohnPepper
The first research question would be around the effect, or not, of GDNF on the brains of those with PD. You may well have a different GDNF production than other people but that is not the first question.
JohnPepper in reply to
The problem is getting the GDNF into the brain because it does not cross the blood brain barrier.
At very little expense, everybody is able to do some form of exercise and if we are able to measure the improvement in the brain, resulting from that exercise, it would be a starting point.
Once we know what produces the greatest improvement we can then possibly establish what causes that improvement.
It is no use using artificial GDNF, because it is not the same as natural GDNF. I say that because it was stated that the GDNF used in the trial proved toxic in the brain. That means it must be different. How can a natural chemical, produced in the brain, be toxic?
Were dOes it say it proved TOXIC john?
The study failed to get a positive response, other than to establish that an innovative delivery mechanism worked brilliantly. They had guys diving of cliffs into the sea fitted with tubes and pumps in their brains. But the gdnf applied direct to the correct neurons in the brain did not produce the therapeutic effects hoped for. It was not toxic and was well tolerated.
I have heard said, by a scientist, at the WPC held in Portland that the GDNF was found to be toxic, which I queried at that talk. How can a naturally produced substance be toxic? It makes me feel that somebody does not want GDNF to be found to be therapeutic.
The very name, Neurotrophic tells us that it is therapeutic in that it either repairs or replaces Glial cells.
I met one of the original recipients of the GDNF in that first trial in Bristol and he had continued to receive the GDNF. That was over two years ago.
I think that the production of 'growth factors' has something to do with 'Fight or Flight'. When the brain thinks we are in danger it naturally produces growth factor throughout the body, because if we get injured we will need those growth factors to repair damaged cells, otherwise we would never have survived as a species.
Fast walking is not natural! If we are in a hurry we would run away from the danger. Fast walking is difficult to do and has to be consciously controlled. That is why I think the brain thinks we are in danger when we do fast walking.
Hence my desire to find out if other forms of exercise make the brain produce GDNF and if so, is it more than when doing fast walking?
Statement. No published reference available? No link to a scientific report? How do you reconcile that reported toxicity with meeting someone still receiving an allegedly toxic substance?
I did not make that statement, it was made by a scientist at a conference.
I didnt say you made the statement. However, if it were substantiated there would usually be some reference research paper.
Where would I, as a paying patron, get that information from?
It would need to exist. All the information I have on the subject of GDNP suggests it doesn't exist. GDNP is probably a tad more complicated than you would prefer, but research into attempts at artificially increasing its expression in the brain report no toxicity. I think you are mistaken
You might find this video informative. parkinsons.org.uk/news/gdnf...
I assume you are talking about GDNF (Glial Derived Neurotrophic Factor).
The very name tells us that it is a growth factor, produced by the Glial cells. How would it have got that name without even existing?
I think you are deliberately obtuse
I was referring to you being mistaken about the GDNF protein used in medical trials being toxic
The only GDNF trials have been carried out using artificial GDNF. That was the one they said was toxic.
FFS John you are hard work. Did you watch the link to the recent major serious trial? The people who did the trial make no reference to toxicity
parkinsons.org.uk/research/...
The only known reference to toxicity in the entire universe is your very questionable claim of a spoken reference by a scientist. Saying "I think you are mistaken" was being kind. I really think you are deluded or making it up. There is no toxicity
So are you saying that I did not hear this news about toxicity, or the person who said it didn't know what he was talking about?
Yes. And you are saying that the trial organisers are suppressing and concealing it. As your explanation why they make no reference to it in the presentations about those trials which I showed you, and your inability to offer any evidence for your claim . It explains why you are incapable of backing up your claims. Just your unsubstantiated and utterly incredible word.
The news of the trials in Bristol came out many years ago. The WPC talk happened two years ago. Because the trial details did not mention anything about toxicity does not mean that the person giving the talk in Portland did not say it.
Jp, the statement that “The news of trials in Bristol came out many years ago” is misleading and false. There have been 2 GDNF trials run out of Bristol. To which trial are you referring ?
It was stated in a talk at the WPC held in Portland.
Oh, I have never heard that before. The results were not out-at Portland were they?
Neither had I. Perhaps you can ask World Parkinson' Congress people.
Who was the presenter?
That conference was over two years ago. Can you not get the information form the organisers?
John i was expecting that reply. When you make unsubstantiated claims it is you who should be providing the reference.
in reply to JohnPepper
Indeed you are now getting to where you need to be in terms of research journey. What is the symptomatic effect of exercise, of varying degrees/types, on the symptoms of PD? Are there any cerebral changes as a result of exercise and what is exercise doing that is causing those changes? Are both of the above applicable to all people with PD? Can any benefits of exercise be mimicked to produce those benefits in people for whom exercise is not possible? What part does genetics play in the effects of exercise on PD? Are the benefits of exercise time-limited? What is the optimal amount/frequency of exercise?
Just some of the questions that need to be answered.
Perhaps some of these issues could be looked at by doctoral students - a cheaper route.
JohnPepper in reply to
How do you think that could be done?
in reply to JohnPepper
You might try an approach to the Association of British Neurologists. A lot of research is done from the National Hospital for Neurology and Neurosurgery, part of UCLH, and they are involved with PD research. A detailed account of your journey might spark some interest. Parkinson’s UK might also be able to help.
JohnPepper in reply to
I live in South Africa and at 84 find it very difficult to find who to speak to and where to look for information I need to know in order to write or speak to somebody about my story.
Are you aware that GDNF expression is significantly increased by vitamin D, and that low vitamin D levels are associated with PD? In a blood test in May this year my levels were below minimum recommended levels and my French GP suggested supplementation. Bear in mind that I live in the south of France and sunbathe regularly
ncbi.nlm.nih.gov/m/pubmed/2...
Is GDNF produced on a regular basis, 24/7? Or is production of GDNF the response to certain stimulation?
Hello, Mr' Pepper The reason I a contacting you is to try and find out more about your program for reversing Parkinsons disease hoping that I would be able to do it and thereby lessen my dependence on the medications, I am now taking. My Neurologist has indicated that I don't have very many options except DBS surgery and the duo pump. I have had Parkinsons since 2003 and it has progressed as such. The symptoms have bee becoming more intense and are very hard to cope with. I have the rigidity type of Parkinsons, which manifests itself mostly in my legs, toes and feet. It is further complicated by involuntary muscle jerking, spasms etc. I habve been taking Stalevo 50 -250 and sinemet 100 -25. I take the Stalevo about 6 times a day and the sinemet in between the stavelo doses. Themost frustrating is that when the off periods hit it takes me right off of my feet and I can barely move one foot in front of the other , sort of llke freezing.. So getting around from room to room is really difficult and I have to resort to crawling along the floor in some cases. I have read a lot of posts from others and everyone seems to be afflcted in different ways. What is your position on the B1 Thiamine treatmemts that some have been following. Lastly I have ordered your book so am waiting to see what i can implement from this resource. I appreciated your taking your time to read this and hope that you would have a few words of guidance for me
Neil Peterson
Hi Neil. It is difficult to answer all your questions in this forum.
Let me begin by making certain statements:
1. No medication does anything to affect the progression of Pd. Therefore you will never get any long-term benefit from taking medication.
2. There is certainly another option available to you and that s EXERCISE! But which exercise is best for Pd? I think FAST WALKING is the best, but others think cycling and dancing are good!
3. No two people have the same Pd symptoms. We are all different. So stop comparing yourself to anybody else.
4. Muscle jerking sounds like DYSKINESIA, which is caused by taking too much levodopa. Your information above tells me that you may well be taking too much. I am not a doctor and cannot advise you on that. I would personally reduce the levodopa if it was me in that situation.
5. All movement is controlled by some area of the brain. When we learned to walk we started controlling our movements using the frontal lobe (Conscious). Then we slowly committed those movements to another area of the brain, which I will call the 'subconscious'. Since then your subconscious brain has controlled your walking. Pd affects the subconscious area of the brain and makes you think you can't walk properly anymore. In fact, your subconscious is unable to connect properly with your limbs, but there is nothing wrong with your limbs. I have been CONSCIOUSLY controlling my walking since 1994, with no problems at all.
6. If you were to contact me via me website - reverseparkinsons.net I will send you articles on how to go about doing this, at no cost to yourself.
7. I have had no need to take any supplement to help me with my Pd, so cannot advise you on anything relating to supplements.
8. Did you order your book via Amazon?
Hi John. I really do not know who you could contact in SA
To everybody who has taken the trouble to help me on this matter I say thank you!
To those who find me difficult to understand or believe say forgive me! I do not have the education to help me achieve my goal to beat Pd. I have made the statement that I was at a WPC in Portland Oregon, where a statement was made at a panel discussion that GDNF was toxic. I did not keep the conference literature to be able to follow it up, but that does not mean that it was not said. I questioned that panel member, when given the chance, after the discussion, but he did not respond to my question.
At my age I am finding it very difficult to take this any further.
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