I have recently become aware of the fund raising difficulties faced by certain researchers with an alternative angle on PD treatments.
A case in point is Dr Jonathan Sackner-Bernstein, whose proposition that a Dopamine excess within Doperminergic neurons might be toxic and thus responsible for their demise, meets possibly understandable resistance from the long standing neurological orthodoxy.
Consequently I understand he finds it difficult to fund his research and the trials that would provide definitive answers. I find myself wondering if the fund raising focus might be transferred onto PD sufferers themselves (my wife included).
A quick Google search shows The Parkinson's Foundation and others posting the following statistics:
145,000 PD patients in the UK
500,000 in the USA
1.2 million in the EU
1.845 million in the above combined
In order to meet an estimated funding requirement of $5.5 million that would represent $2.98 per patient - not exactly an onerous demand?
I have no idea personally how to setup and administer such a crowd-funding request but I do think it worth raising as an idea as it appears to me that the last thing PD sufferers need is artificial blocks on alternative thinking.
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Interesting. I've watched his videos too! It's an interesting hypothesis. It seems like to do the initial validation he'd really only need a few patients to ramp up with very minimal doses while being monitored... If not for regulations he'd be able to do that right away, with full patient consent etc. But in general it is weird how long he seems to have been campaigning, and all he wants to do is a simple trial which would have immediate results, yet he doesn't seem to have any output yet.
A few years ago I was taking an interest in environmental issues and asking what I felt were challenging question to with Forum for the Future here in the UK. I got a response from a staffer that has always stuck with me. She said "the current orthodoxy is overwhelming"! I gave up at that point but did empathise with her. We all know the "powers that be" provide very high hurdles in their efforts to maintain the status quo. Vested interests?
Animal studies have seemed to already show as much, but I can see where this could be a problem as far as human studies go as far as being ethically acceptable :
Hi Chartist, to answer your question, I have no idea! But presumably you'd need volunteer PD patients that already have excess dopamine within doperminergic neurons.
Dr Sackner-Bernsteins hypothesis is rooted in his observation that this is the case and that levels within neurons had never previously been measured. He also appears to have achieved success within his specialist field, Cardiology, with suppression of neurotransmitters and thus sees a parallel. Again, Dr Google seems to suggest Dopamine levels need to be optimum otherwise the consequences are not good.
I suspect the fact that Dr Sackner-Bernstein comes at the PD problem from a different field works against him. But from the perspective of PD sufferers they just want and need a fix and it is exasperating to see a new angle thwarted by lack of funds to provide definitive answers.
I'm wondering how they test for too much dopamine in DA neurons in humans? Is that even doable?
I would much rather see a high dose melatonin study since it has already shown it can reduce high dopamine levels in animal studies and has shown to be beneficial in human/PD studies. It has also shown to be protective of DA neurons, mitochondria, able to reduce elevated oxidative stress levels in PwP to similar levels seen in healthy controls, reduce neural inflammation, ameliorate heart damage associated with PD and has a very good safety profile even at high dosing. It is inexpensive and since the safety profile is well established already at high dosing, it could reduce testing time very significantly.
It does much more to fight PD, but the above are a few highlights.
Hi Chartist, again you have me there! I just have faith that the experts know what they are doing. I'll take a look at your Melatonin lead.
When I was brainstorming problems during my (computing) career certainly certainly no idea was simply waved away. They'd be prioritised of course and the list acted upon until a solution was found. I get the impression Sackner-Bernstein is not taken seriously by the neurology community. I can find no in depth critiques of his theory online.
Why would anyone devote energy to deconstructing his theory? He did a literature review. It wasn't original research. There are an infinite number of theories one could come up with after reviewing PD literature. He's a good public speaker and the what-if-everyone-was-wrong vibe always plays well to an audience dissatisfied with the status quo but the chances are he is also wrong.
From memory he also has a patent application in for the use of metyrosine in PD so if he is right, any equity backers are likely to do very well out of it. That he hasn't yet got the money after almost two years suggests that they aren't particularly enthused about it either.
Hi Kevowpd, he did a literature review and found a (big) hole in it as far as I can tell!
I happen to agree about the "what if the experts are wrong" vibe, provocative or what but as the partner of a PD sufferer, the point I was trying to make is the funding issue.
If 1.8 million PD sufferers could be persuaded to part with $2.98 then there is at least the possibility that a whole load of benefit could emerge for next to nothing to the individual. So why not give it a try?
I've just donated to a PD sufferer, Neil Russell (#becauseistilcan), running from London to Barcelona who is moving heaven and earth to raise funds for research. I can't do that so am trying a different approach.
Hi Chartist, apologies for the delay in responding to your Melatonin link. Yes the study to date appears to be encouraging. It's interesting that it is based on more or less the same theory of excess Dopamine causing the dyshomeostasis (which Dr Google has helped me with!!).
Do you know what, if anything is holding this study back? I'm sure all PD sufferers would like to know.
There are currently 3 HDM studies in people with PD and all three showed benefit, but the highest dose used was only 50 mg/day and the lowest 10 mg/day.
What is missing is higher dosing studies such as 250 mg/day in order to get a better idea of the maximal effects that melatonin can offer in PD. One of the 50 mg studies above showed that melatonin returned oxidative stress levels very close to healthy control levels. The other 50 mg study showed the beginning of motor symptom improvement during off time. The 10 mg study also showed significant benefit.
I had not seen it, but I will have to read the article link because I don't get what the excitement is that they seem to be trying to generate around this finding. It sounds like they have found a potentially better way of diagnosing PD that is approximately 93% accurate and it shows false positives at a rate of just under 5%, if I understood what they were saying. It appears that this test will require a spinal tap which seems pretty invasive and painful.
I would be much more excited if MJFF would put this much effort into an FMT study.
Presumably if they can focus on what causes the abnormal alpha-synuclein in the first place that will be a real breakthrough?
I'd like to see parallel investigations into all PD theories including Sackner-Bernstein's. The risk associated with going down single tracks (Queuing Theory!) in series would not be very efficient especially if the answer sits at the back of the queue (like when I'm searching for literally anything!!!)
Did you ever read Zen and the Art of Motorcycle Maintenance? In it Robert Pirsig talks about a mushroom cloud of theories developing from one or two. I do realise theories have to be prioritised, I just don't understand why funding is an issue for some especially when the cost per PD patient is tiny.
I have always been sceptical of “ conspiracy “ theories ,but was surprised when watching the video sharing the latest breakthrough and ongoing study of Ambroxal( can’t remember if that’s the correct spelling) one of the professors involved in the research said that unfortunately if there’s no serious money to be made,no pharmaceutical company will get involved.The Ambroxal study is being largely funded by Parkinson’s charities,the people who most need an answer.Maybe that’s why vit B 1 scares the professionals so much.Our PD. nurse warned against it saying there were Loadsof recorded side effects,tho couldn’t quote chapter and verse.The side effects of sinemet of course are quite acceptable.
"unfortunately if there’s no serious money to be made,no pharmaceutical company will get involved"
Isn't that it in a nutshell?
Going back to my environmental/nature days, I well remember a David Attenborough blockbuster series that depicted a scene with two male Thomson Gazelles with locked horns fighting over territory and a harem of females. They failed to notice the family of Cheetah watching on smacking their lips!
Kind of sums it all up for me. We'll all die of ignorance ultimately what with climate change and big Pharma! I doubt the humans species will see out the current century!!
In the meantime on the funding for a piece of lateral thinking that might just offer a different approach , it's not exactly the end of the world.
I think the answer in in moree comprehensive nutrition along with frequencies.
Chek out AscendSciences.com Here is an excerpt from my blog... Stiff?
I have a friend who has been given a diagnosis of Parkinson’s. She asked me a week ago, if I was having any trouble with my legs being stiff? She complained that her legs were getting so stiff, she was really struggling to keep going. I thought about it, and told her, “No, My feet swell a little bit in the Evening, but I am not at all stiff.
then during the week as I was thinking about it, I recognized I had been stiff… previously. They say we should write down how we are feeling when we begin to use the LuminAloe, because we may not recognize as we are improving because the normalizing of health takes place over time. As I was pondering her stiffness during the week, it dawned on me that I had been stiff. I had felt so stiff in 2021, I had resorted to using a toilet seat riser, to make sitting down easier, and stop falling onto the commode. Then In October my daughters gave me a bidet to help me avoid UTI’s and I had to remove the six inch lift. At that point in time, it was difficult to sit gracefully. Due to stiffness, it was more like I would fall on. So, gradually, without noticing, the stiffness has left me. I have even been able to weed the flower bed and plant some pineapple plants.
So, this week I told my friend, when she told me she feels like her legs felt like they are loaded with cement… I told her I believe it is the more comprehensive nutrition that I have been consuming that made the difference for me.
Good nutrition is obviously going to help with any number of health issues. I read many years ago that all food is toxic to some extent, it's just that we are able to cope with the toxicity of most foods most off the time. Not sure how true that is but if it is it might explain why individuals react adversely to certain foods. I tested this theory myself with a Kinesiologist years ago and found tomatoes to be contributing to my condition. The acidity presumably. Leaving them off for a period eased the symptoms!
Not sure how it helps with PD though but recent announcements elsewhere are encouraging. I'd simply like to see all reasonable ideas pursued.
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