A bit of ADLL for RBD - a recent SoPD b... - Cure Parkinson's

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A bit of ADLL for RBD - a recent SoPD blog post by Simon Stott (Director of research at Cure Parkinson's)

jeffreyn profile image
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"People diagnosed with REM sleep behavior disorder (or RBD) have a higher risk of developing Parkinson’s. RBD is a sleep condition in which the affected individual physically acts out their dreams as they sleep."

"Usually when we are dreaming, our bodies become momentarily paralysed. But sufferers of RBD loss this ability and begin moving about in bed, reacting to their dreams."

"Recently, researchers have been testing a treatment for vertigo (called Tanganil) in people with RBD, and the results of a small pilot study are rather remarkable."

"In today’s post, we will look at what RBD is, what the new pilot study found, and what this could mean for Parkinson’s."

scienceofparkinsons.com/202...

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MarionP profile image
MarionP

So Tanganil reduces the RBD symptoms but makes you stupider. (Kind of like marijuana. I thought about putting a smiley right there but that's only half in jest, Delta 9 thc does in fact do that...a lot.) That is, if we can believe the pictures (remember that article earlier this week?) going to take a lot of research, especially since it was 2 patients in Minnesota, where there's lots and lots of PD causing farm chemicals around.

Reasons for some hope but not overjoy rejoicing. At least not yet. And somebody is going to have to okay a whole boatload of money to properly study it, and since it is already OTC in Europe...

All very interesting and it should be researched. Like I said, even if we could trust the pictures, it was really gratifying to see that whole area heat up on the DAT and PET scans. Tempted to try to get some of that myself for my own RSBD but of course in the USA that is complicated, plus I can't afford to be more stupid than I already am, I guess the deal for now is to wait with bated breath. Pretty intriguing. Certainly don't like the trade off, it's premature, but boy it was fun to see those areas light up. Many thanks for posting, definitely give me a bit of a left and that's going to be nice to have another hopeful possibility.

MBAnderson profile image
MBAnderson in reply toMarionP

well put

AkunaMatata profile image
AkunaMatata in reply toMBAnderson

1. The two patients were in Germany, not Minnesota...

2. Regarding cognitive impairment, please read the article's comment section. Simon (the author) wrote yesterday: "Well spotted ZZ! Bravo indeed. I missed that completely. That is reassuring to know. Thank you so much for sharing your observation. I will make a note of that later tonight on the post." "Yeah, I was wondering if the D enantiomer was not an “inactive” as the preclinical data suggests. But reader ZZ has just pointed out that the peer reviewer notes for this report are available in the supplementary notes and they address the cognitive issue, noting that patient #2’s MoCA score improved more recently (see elsewhere in the comments here)." As Simon noted in the article, acetyl-DL-leucine has previously been found to IMPROVE cognition in the elderly. And there's no report in France after decades of use that it lowers cognition.

3. The FDA has just approved N-Acetyl-L-leucine for Niemann–Pick disease type C and there was no concern of cognitive issues. So you could still try that form.

MBAnderson profile image
MBAnderson in reply toAkunaMatata

thanks

jeffreyn profile image
jeffreyn in reply toAkunaMatata

"So you could still try that form."

How difficult would it likely be for someone in the US to obtain an off-label prescription for Aqneursa (N-Acetyl-L-leucine)?

AkunaMatata profile image
AkunaMatata in reply tojeffreyn

Some doctors prescribe anything you want. Others prescribe nothing no matter how much you need it. So it only depends on your doctor. Out-of-pocket the average wholesale price (AWP) is $16,140 per 28 packets. There might be foreign suppliers as well I don't know.

Steegen profile image
Steegen

Very interesting, thanks for posting. I very much appreciate how simply and clearly that blog spells out the findings.

Personally, I think this research is in the right area, even if this particular treatment doesn't end up being the perfect answer.

Leucine is an essential amino acid found in dietary protein, that more than all the others stimulates the MTOR/IGF-1 pathway in the body. This pathway is a central to controlling aging in general, and particularly brain disease that involve proteins building up in the brain such as PD, AD, etc.

The drug Rapamycin and many plant botanicals such as Turmeric, berberine, resveratrol etc all inhibit the MTOR pathway, for example. Whereas high levels of animal protein increase it.

So I find it unsurprising that a modified form of Leucine could have such a central and disease modifying effect on RBD and PD. There are some researchers that believe in many neurological diseases, over time the brain is over exposed to IGF-1 and develops a sort of IGF-1 / MTOR resistance, almost like insulin resistance in diabetes.

Furthermore I believe this bodes well for therapeutic, periodic fasting as an intervention to prevent and possibly treat PD. See Valter Longo's work on this (I'm always harping on about him but I believe in his work). NOT daily "intermittent fasting", but short periods of a fasting mimicking diet a few times a year perhaps.

These fasting mimicking diet cycles lower IGF-1 and perhaps re-sensitise the brain to it's effects. It even appears to be beneficial in animals exposed to pesticides such as paraquat, which are heavily implicated in PD, and causes a degree of repair of the damage. But I'll leave that for another thread before I derail this one too much.

Rufous2 profile image
Rufous2 in reply toSteegen

β-hydroxy β-methylbutyrate (HMB) is another interesting leucine metabolite.

journeywithparkinsons.com/2...

cell.com/cell-reports/fullt...

MarionP profile image
MarionP in reply toSteegen

"The drug Rapamycin and many plant botanicals such as Turmeric, berberine, resveratrol etc all inhibit the MTOR pathway, for example. Whereas high levels of animal protein increase it."

.

.Like it, means there are some generally good things we can do right now. TY, good contribution!

Gcf51 profile image
Gcf51

Check previous Posts

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park_bear profile image
park_bear in reply toGcf51

and more here:

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