Possible Major Breakthrough in Parkinson's

[Rafiki2]

It looks like 2024 will be a very interesting year for major developments in treating PD.

Here is a very interesting interview with Dr Jonathan Sackner-Bernstein who has been turning the conventional thinking of PD medication on its head.

youtube.com/watch?v=XRxsmqh...(Not working as expected?)

[Fed1000]

Hi Rafiki, thanks for sharing. It seems that in the not so distant future there is something good to hope for. Dr. Bernstein is not exactly the latest arrival even if he was born as a cardiologist.

[EdAllentown in reply to Fed1000]

Dr Bernstein has not posted any progress reports in quite some time. Or, at least I can't find any. His website has been static.

[Neurosmith]

Dr. Sackner-Bernstein was a guest on the No Silver Bullet video podcast with a much longer presentation and deeper dive into the subject.

youtu.be/k703Shlgkhw?si=iEA...(Not working as expected?)

It's an interesting hypothesis that I wish more in the community would investigate as the implications would be profound. But it begs the question, if too much dopamine is the issue, why do so many people benefit from C/L?

[PixelPaul in reply to Neurosmith]

while I don’t think this doctors hypothesis will be proven to be true, I can appreciate his outside the box thinking. I think research needs some creative thinkers and fresh ideas, after all where has the conventional wisdom gotten us in the last 50 years?

[RienPoort]

I haven't read or listened to the reports you list but if it's the idea of an excess of Dopamine being the root cause of PD then I wrote to him about it and the last I heard he was stuck trying to source funding for trials. I liked his lateral thinking and was impressed that he came at the problem from a different POV. An expert in the PD field I also wrote to was not at all convinced. It's not that easy to work out who to believe but I do believe exhaustive testing of the theory is the way ahead. I did try to appeal to the PD community to self fund but got absolutely nowhere. Collectively it would cost pennies!

[pdpatient]

Have you tried to connect with him?

[gomelgo]

Love this man and his spirit and hope he has gotten his funding. Would be amazing to see the results of his outside the box thinking. I hope he inspires others to think that way as well.

[RienPoort in reply to gomelgo]

It's frustrating but not surprising. The current orthodoxy can't deal with somebody coming in from the outside and pointing out that decades worth of current research hasn't really got close to a fix. There is also the thought that vested interests do not want to see a fix! The current UK Post Office scandal is living proof that such a culture exists!!!!!!

[gomelgo in reply to RienPoort]

I'm an ostrich lately. Tell me the headline version of the scandal?

[RienPoort in reply to gomelgo]

900+ British sub post office masters convicted of crimes they did not commit, 4 suicides and hundreds of more lives ruined because the UK Post Office rolled out an IT system that was not fit for purpose and threw up false balance reports making it appear as though fingers had been in the till. None of this is in dispute. A public inquiry is currently underway to ascertain who knew what and when amongst the senior management of the Post Office and it's IT supplier Fujitsu. It's a classic example of corporate malfeasance and ordinary people suffer the consequences!

[gomelgo in reply to RienPoort]

Jeez ... this has me remembering the scene from The Meaning of Life withe she corporate ships ... horrible. Thank you for sharing this.

[RienPoort in reply to gomelgo]

No problem, I see you are US based and so not sure you'll be able to tune into the TV series that bought the whole scandal to a head after 20-30 years. It's called "Mr Bates vs The Post Office". It illuminates quite the most disgusting miscarriage of justice.

Many people in the UK are following the inquiry avidly because we recognise that what happened to the sub-postmasters could happen to anybody!

It's relevant to the Sackner-Bernstein situation IMO because here is a guy who brings a different POV to a long running problem that has and is ruining lives and yet the powers that be are not interested in testing his theories. You have to wonder why?

[gomelgo in reply to RienPoort]

I agree! Not only are they not interested, but I am sure there are actors actively trying to shut him down, and anyone elsle who thinks outside the proscribed boxes. Sort of like how I often get responses here in this forum that seem angry at me for expressing outside the box ideas.

[RienPoort in reply to gomelgo]

People need to open their minds! What did Einstein say about trying the same thing over and over and expecting a different result!!

[gomelgo in reply to RienPoort]

Exactly!

[kaypeeoh]

I remember this video being posted two years ago. The author made the point that it's NOT a dopamine deficiency causing PD. Instead it's an excess. There is a paradigm in the medical world. In the past allergies could be treated using concentrated ragweed extract. By flooding the body with extract there is so much available that it can't attach to docking points and cannot trigger allergy symptoms. If there is too much dopamine it clusters around the sites but can't attach to dopamine transporter sites and no PD results.

[jeffreyn]

There are a number of threads on this topic. Here is one of the more recent ones (5 mths ago), including 83 replies.

healthunlocked.com/cure-par...

[RienPoort in reply to jeffreyn]

Yes, all the debate around the subject could be resolved by simply testing the theory. Sackner-Bernstein saw parallels with his own work within the cardiology discipline so he's not without insight.

The medical profession appears to erect walls around each discipline and thus appears to be unreceptive to outside ideas. I know from my past computer career that problem determination does not work like that.

When last I look SB was stuck trying to source trials funding. How do we, the PD sufferer community, get over that hurdle?

[gomelgo in reply to RienPoort]

Overspecialization creates siloes where creative though and ideas are stifled rather than stimulated. I asked my GP the other day to help me get a HOMA IR test, and she sent me to an endocrinologist. SMH

[JayPwP in reply to RienPoort]

Together.

If all PWPs donate min. 2$ each per year, trial funding would never be an issue. However protection from fraudsters and the responsibility of managing the funds makes it impossible.

[RienPoort in reply to JayPwP]

I think I worked it out as something like that also. Peanuts! But yeah the logistics. It would be beyond me but there are much cleverer and relevantly qualified people out there surely that could find a way?

[JayPwP in reply to RienPoort]

Clever people form non profit organizations which then gets distorted from the initial values.