Parkinson's Movement
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A million dollar question!

Do dopaminogenic (sp?) neurons die or just hibernate in PD people? Do the neurons "wake up" from hibernation or do the ones which are only damaged get repaired and the PD symptoms are reversed such as arm swing, smell, etc. with B1 therapy?

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Good question: it is assumed that the dopamergic cells die after a period of suffering, the reasons are still unknown. This always theoretically assumes that many healthy dopamergic cells die at the onset of the first symptoms about 50/70%. The rest are in minor or greater health and here we see the effectiveness of thiamine that restores these remaining cells by removing them from suffering thus giving improvements. Obviously the stage of the disease determines the size of the lesion and brings differences between case and case. All this is just an unproven theory, like many others in the PD.

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Very logical answer, Gio. However, Dr. John Bergman claims that neurons don't die but hibernate. Tend to believe him. :)

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It's also the theory of Janice Walton-Hadlock...

She's very convincing when it comes to the role of the nervous system (stress etc.) in PD. I don't buy the rest of it, even though I admire her dedication.

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Here is the video by Dr. Bergman talking about "hibernation" of neurons. It's the best PD description and its hibernating neurons I have ever watched/read. It's approx. 36 min video, but worth watching!

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Hi Guys, I’m new in the blog but not in this stuff. I haven’t find yet the way to write my 12 years journey in PD in a couple of lines without leaving something important, so just I have to say is Hi folks nobody quit the fight! I have been following a project that seems to be toward the same line of Dr Bergman video. May be they are pretty close to start trials in the incoming months Your thoughts about it are welcome!

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Very interesting and promising. Neurons, after all don't receive enough blood, are ischemic or hibernate. Hmm. . .but the doctors keep pushing meds to cover symptoms. :(

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I find this video fascinating and will follow up with the company. Do you have their website? I wonder if they're doing the clinical trials now . I think the vasculature issue could be highly relevant. Has anyone had a functional MRI done ? I suffered a severe concussion nine years before the onset of symptoms, and I wondered a lot about the connection. I have low blood pressure and family history of heart issues. I wouldn't be surprised if I have problematic circulation in the substantia nigra.

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Despe,

Based on this video, do you see why I am hopeful that they will soon take the fecal microbiome transplant (FMT) from the PD mouse models to the human PWP level? That is the cheapest, easiest and fastest way to test the theory. The mouse models of PD have responded positively to FMT already and they have conducted FMT in humans for other health issues, but not yet for PWPs.

Art

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Art, I believe that CURE is here, just don't know if big pharma will allow it. . . In the meanwhile, B1 and Dr. C. are providing the relief PWP need, a therapy that's short of a miracle.

Have lost my faith in medical doctors and pharmaceuticals--they are just a band aid. :(

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dr C is medical doctor. 😋

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Oops, he is the EXCEPTION, Gio. There are always exceptions to the rule. :) He is not just a medial doctor, he is a descent human being.

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It is, Art, by Dr Tom Borody in Australia who saw a patient cured from PD while he was under powerful antibiotic treatment. See here :

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

There is also that link, to a clinic :

melbournefmt.com.au/

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Xenos,

I've only read of one, but have not been able to find any information on it. I don't even think it was a study. Do you have a link to what you are describing specifically to PD and FMT?

Art

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Hello Art,

Google :

fecal transplant parkinson

You will find many references.

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Xenos,

Yes, I have done that, but what comes up is mostly references to the potential of FMT for PD, or studies in PD model mice, but I do not find any human studies that use FMT for PWPs. I posted before about one study that I got excited about initially until I read further. Take a look at it here:

clinicaltrials.gov/ct2/show...

I was excited about this until I looked at the date and that they have not recruited yet and now it looks like the study has been watered down and still not recruited any participants. The study was supposed to start in July 2017 and finish July of 2018, yet they have not enrolled any participants yet.

If you have a specific link to a human study, I would sure like to read it.

Art

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You are right, Art.

I guess you also read this :

caltech.edu/news/parkinsons...

A human trial should have been set up. My guess is they are afraid of transmitting diseases while trying to heal PD.

I also remember of a startup company aiming at producing safe pills for FMT. I don't have no link, but let me try to find out.

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This 2017 article about him does not mention PD, but other diseases which I have already seen studies for. He's been doing these FMT's for many years, but I haven't found any for PD. :

en.acnnewswire.com/press-re...

Art

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That is very exciting. I wonder if the cold showers and fasting ideas that are helping some people are somehow stimulating FGF production and consequently healing of the blood vessels.

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Probably so. Anything that can cause blood to flow to the brain repairs damaged/hibernated neurons--MY BELIEF.

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:( maybe so...

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I’m with you on this. Sometimes I seem to have all the dopamine I need as if it’s getting through the trap door.

PD almost 4 years, no meds. Mucuna and B1. Age 56.

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I am proud of you! Watch the video and you will understand. . .

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Interesting video. Thank you. Dr Bergman has many videos that are worth viewing.

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My pleasure. I intend to watch all of his PD videos.

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Hello Cons,

Would you please tell me more about your Mucuna use. What brand, the % of levadopa how many times a day, and your experience with it. I'm having a good experience with Mucuna and B1 and a big mix of herbs. I'm tremor dominant on my right side and the disease seems to disappear with the morning dose, but the afternoon dose doesn't work as well.

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even for me it is so, for many the dose of afternoon ldopa It is less effective.

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Thank you Gio

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Ernie, I’m similar to your symptoms and afternoon slow down. It’s like I slowly run out of dopamine in the brain as the day progresses. Not every day though. It’s not clear to me why.

I use Barlowe’s 40% and take 3 each day.

Constance

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Thank you, I went back and looked at some previous replies from you and you had already answered this same question. Right now I feel normal as if I don’t have Parkinson’s but when this mucuna+B1+herbs wear off I’ll start slowly twitching combined with tremor in right hand. I usually just wait till a bit later to take next dose because it doesn’t make any sense to take it if it’s not going to work anyway I also like to space it as far as possible from food. Yesterday though i dosed at 7:30am which worked great until 11:30am. Right then I took second dose and it worked great but only for like 2 hours.

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Only God knows,the rest think they know?🥀🥀

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Would you ask him for us then, please because you're spot on regarding the rest!

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Everyone believes in a superior power. St. Paul visited Athens and gave a magnificent speech on the Acropolis about the "UNKNOWN GOD" that the ancient Greeks had impersonated in a beautiful statue. I call it GOD and pray to him every single night before I go to bed.

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My comment was not intended to make sport with anyone's beliefs but to agree with the statement that our PD experts don't really know anything for sure.

As I have no wish to upset the harmony of the forum with an inappropriate theological debate I will simply say whether I agree with your beliefs or not I would always defend your right to have them.

Best Wishes

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Back at ya! No offense, smile. :)

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I think there are likely both scenarios, as in at least two subsets, cells dying and cells inhibited/turned off.

I always think of the placebo effect, which has been described by researchers as one of the main hurdles to overcome in the creation of new drugs. It is particularly pronounced in PD. But here's the thing, the placebo effect ain't magic, for it to work you need to have the basic elements ie dopamine. The placebo effect doesn't work with amputees!

Similarly, Paradoxical kinesia may suggest the same. I'm reaching for a bowl in the top cupboard, I'm parky, I knock a glass over, it falls but doesn't smash because I catch it like a ninja. I can barely get out of bed to pee, my wife suddenly had an asthma attack, for 30 min I was perfectly normal, running up and down, fetching stuff until she was ok then back to PD. Converesly my son fell rock climbing, a situation I had no way of assisting. In this case I turned into a statue.

Personally, I feel in my case I have enough dopamine cells but they're inhibited, stuck in the 'off' position by other neurotransmitters related to the flight/fight mechanism and triggered by years of chronic stress.

And the only treatment is dopamine replacement which with its side effects at best is largely ineffective and at worst perpetuates the illness.

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Hi Niggs,

The placebo effect is not considered in research where there is already a drug that works, and the latter is used as a reference for comparison. Thiamine in my case always improves a non-motor symptom such as intestinal disorders. I always worsen this disorder when I remove Thiamine for a awhile and I improve it when I put it back in within a few days. No other PD drug does it for me. Besides the placebo effect there is the nocebo effect (it could not be otherwise) and also from this the PwPs are even more influenced than by the placebo effect but nobody cares. Eh yep.

Gio

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Gio, THIAMINE it is! :)

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I agree, dopamine replacement but go natural L-dopa not the pharmaceutical type. If you watched Dr. Bergman's video he questions: Are PD symptoms due to the progression or due to dopamine replacement meds side effects?

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I am not a doctor or scientist but I feel sure of the following!

1. The cells that produce dopamine are either eliminated or deactivated by Pd.

2. The Glial cells,which play an important part in the process of producing dopamine, produce a natural protein called GDNF (Glial Derived Neurotrophic Factor). That protein either repairs or replaces the damaged cells that produce the dopamine. The name of the protein confirms that statement.

3. WE there for have our own reair kit in the very part of the brain where Pd does its damage.

4. We can all do fast walking, which I think, produces the GDNF and that GDNF repairs more brain cells which in turn produce more dopamine.

5. Nobody has done any studies to find which is the best way to produce more GDNF, preferring to find ways of putting artificial GDNF into the brain, which is expensive and prone to problems.

6. Instead of ploughing truck loads of money into finding the mythical CURE, all we have to do is spend a fraction of that money on finding the best way to produce more GDNF

7 Until that happens we can just get on doing the FAST WALING and getting healthier and fitter.

I have not needed to take any Pd medication since 2002. That's hw good the FAST WALKING is.

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Do you do your fast walking medicated? If it didn't i wouldn't do very well, might get stuck somewhere haha.

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I do my fast walking medicated and still see benefits. I believe that it's the movement and exercise - blood flow and nutrients through the brain - that matters.

I walk 3 sets of 20 minutes each, for a total of 60 minutes. I've increased my avg walking speed to 3.2 miles/hour (a little over 5km/hour).

I have 2 routs. One is up and down fairly steep slopes (10-12% grades). My other route is flat. I usually do a combination of them.

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Hi fossygma. I have not needed to take any Pd medication since 2002. As long as I do the Fast Walking I will not ever need to take Pd medication.

To answer your question, NO! I am never on medication.

HOWEVER! There are a lot of Pd patients who are on medication and do the walking, mainly when on the med. But I do have one person who walks better off the medication than on it.

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Wow, no meds while walking. I could seriously look like a spaz but damn it ill give it ago, in short close walk.

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I'm not up to speed on your terminology. What is spaz? and what do you mean by "in short close walk"?

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If anyone is interested in seeing what GDNF can do for PwP, here is a video from a study I believe was from many years ago (15+ maybe?):

Other studies since then have had mixed results.

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Amazing! As John Pepper has written several times "Why they stopped the trials, why don't they proceed with the procedure?? Thanks for sharing this video with us.

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Well, they did stop for many years after a study that was perceived to have had negative results. But in 2013, they started up a larger study in England. Here are two videos on the results after 9 months (longer if you count the few who were in the initial safety trial). At the end of the 2nd video, he says the results were "statistically insignificant" but that the trial would go on for another 9 months. I'm still trying to find those results.

Part 1:

Part 2 (first several minutes are a repeat of part 1):

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OK, here's their website: parkinsons.org.uk/news/gdnf...

Last comment dated May 5, 2017:

"We are now focused upon analysing and understanding the results, and our aim is to communicate these to people affected by Parkinson's as soon as we can."

Dr Alan Whone, Principal Investigator on the GDNF trial

Taking a long time! But I just found this:

"We expect the full results of the study will be published in 2018 and will be sharing them with you as soon as we can."

Let's cross our fingers.

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Hi JAS9. Why are we talking about artificial GDNF? Our bodies naturally produce GDNF in the very part of the brain that needs it. WHY ARE WE NOT LOOKING FOR WAYS TO PRODUCE MORE GDNF? WHY WASTE ALL THAT MONEY ON ARTIFICIAL GDNF?

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I agree. However, I can see two benefits to doing studies on injecting GDNF into the brains of PWP. First, it would give those who can no longer exercise a chance at healing. Second, if they are successful at this, it will give those of us who are working to discover how to do it through exercise some data that GDNF does work. Then, if we discover the very best way to produce it naturally, we'll have 2 legs to stand on (so to speak).

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All comes down to money!!! :( :(

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John, I remember that during my working years, I would become overwhelmed with workload and responsibilities. I would drop everything I was doing, and rush to the gym during my lunch hour. I would either job or do aerobics and by the time I had my shower, I felt reborn with a clear mind. I was then able to continue working until late in the evening. I had no idea what GDNF was at that time, all I remember was that I felt fresh and ready to go to battle again. What an irony. . .

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Spread the word!

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job :) meant "jog."

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Hi Despe, Just to say thank you for bringing this to our attention. The talk by Dr Bergman is a timely reminder for some of us that there is, arguably, more that we could do to help ourselves in terms of dealing with the challenges of PD. Notwithstanding some of the "humour" in the video, there is plenty of thought-provoking content to make us sit up & listen. I have heard much of the argument and the main strands of his message from other sources. There is a lot of good sense in much of what Dr Bergman says even though his style needlessly invites ill-advised derision. Surely, big pharma companies cannot seriously be resting on their laurels? There is a dire need for a global re-think in how we approach the treatment of PD. It will probably not happen too soon! I risk going off on one of my campaigning calls here. I will simply end by saying that your post can hopefully inspire some on this group to investigate the alternatives further and then report back to the members of this group and others affected by PD. Of course, this is what some of our group have been doing for quite a while now. Sincere thanks are due to those who have already delved into possible therapies and treatments which might benefit those affected by PD. Equal accolades are due to some in our community who have already helped others by their efforts or by the skilful use of their knowledge to reduce pain and suffering. Thanks again for your post. Keep up the good work.

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Anything to help fight PD! I never really believed that neurons simply "die" and what Dr. Bergman says makes sense to me.

Thank you for the kind words. I pray and hope that CURE is not around the corner but here and now!!

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I’ve been using the Vielight to wake up my brains mitochondria for close to 6 months. Added 2g of Thiamine to my daily regimen of Hinz protocol amino acids. Skipped 1/3 of my doses while on vacation with no noticeable affect so I’ve continued on this lower doses of Mucuna n tyrosine. Not sure which of the two made the change possible but I’m loving it!

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