PD vibrotactile glove for PWP and Lewy Body

[NuroMod]

Hi all,

Does anyone who is using the PD Vibrotactile Gloves have Parkinson's AND Lewy Body ( dementia ) ? Or know of anyone with the two conditions and the PD Glove effects, especially for the Lewy Body aspects.

When I use the PD Gloves for the PWP & LB that I'm trialing - the PD symptoms have improved but there is no effect on the Lewy body aspect. ( I'm aware PD and LB are two different conditions ) But the question is - has the LB been affected by default ( cos of the PD Glove ) and a potential spin off impact resulted ?

FYI - an observation occurred within about 30mins of the PD Glove usage. The carer who has not seen the PWP for weeks - happened to come in for a relief session and was struck by awe and exclaimed ..." The PWP looks totally different and etc etc ". And the carer was not aware of what had transpired in the past 30mins. What caught her eye immediately was that the mask look had literally vanished.

Thanks

[NuroMod]

FYI - had to stop all testing cos the Lewy Body / Dementia effects became too drastic and PWP got aggressive, had hallucinations, damaged the controller and glove etc - difficult to continue and besides have to rebuild the controller and gloves due to severe damage ..😪😪

[DanTeoh in reply to NuroMod]

these are your own gloves you built?

[NuroMod in reply to DanTeoh]

Dan - yes. The PD symptoms have improved and getter better. It is the LB aspect that is causing challenges. And the side effects of the LD meds.

The gloves/algorithm is not the issue. The PWP has Lewy Body for past 5yrs and has deteriorated over past year. Having PD is challenging. Having PD & severe LB is extremely challenging. Last week the PWP with LB - hallucinated in the night and took the walking stick and whacked the hubby !! - till there were bruises all over!

And there are times when one tries to put on the gloves - the PWP rips if off! and then pulled the controller off the table and it all ended a mess ..!!!

[pdbuzzboard in reply to NuroMod]

There is a video on an updated controller housing that is substantially more durable.

[Bramma]

Is the pd vibrotactile glove available in the UK or is it still in the trial stages.

Thanks

[NuroMod in reply to Bramma]

Hi - these are " DIY " versions. I believe the US release will be few 'years' away. Trials are still underway.

[Bramma in reply to NuroMod]

Thanks for your reply. How difficult is the DIY version to make presumably you need some experience with electronics.

[pdbuzzboard in reply to Bramma]

If you are following the Buzz Board instructions on YouTube it requires basic soldering (there is a heat shrink alternative). If you can assemble Ikea furniture, you can get this done.

[Bramma in reply to pdbuzzboard]

Thanks you are being very helpful, do you know the name of the YouTube link.

[pdbuzzboard]

youtube.com/@pdvibrationthe...

[Bramma]

Thank you.

[pdbuzzboard]

I apologize for this being somewhat tangential to the topic of the post, but hope you find it to be helpful. The following is my completely non-medical, unqualified hypothesis.

The gloves desynchronize the brain (see Tass research), allowing the brain to function more normally. In theory, this should enable the brain to "clean itself out" more efficiently than without the gloves.

It is generally agreed that Parkinson's is caused by mis-folding alpha synuclein proteins that build up in the cells of the brain. Normally, the cellular autophagy process clears "cellular debris", but this is not happening in PWP. These misfolded proteins clump together to form the Lewy Bodies.

Pulsed ElectroMagnetic Fields (PEMF) have been demonstrated to improve cellular function and enhance the autophagy process. There are several studies that show efficacy of PEMF on Parkinson's, but none of them include the gloves in the testing.

My WWP is doing very well on the gloves. I have built several home built PEMF devices (I followed a guy on YouTube called Steeve Bradet) and have made some changes for our specific use cases.

My hope is that, by combining the gloves and PEMF, we can slow (stop?) the progression of this disease by allowing the brain to function more normally (gloves) and enhancing its overall cellular function (PEMF). We have been on this path about two months. She has seen substantive improvement in constipation and "overall feels better". Time will tell.

Again, this is what we are doing. No warranty express or implied.

Best of luck.

[NuroMod]

Since the post - the PWP with LB has " resetted " and after another session - her inability to speak surprised us by suddenly asking to watch a particular TV program !!👍😀

[pdbuzzboard]

👍😀 FANTASTIC!!!

[NuroMod in reply to pdbuzzboard]

I'm learning by experimenting - working with first PWP with LB and person can get very agitated , hallucinates and " unpredictable " - Already ripped one control to pieces !!!! Building another but aiming to be ruggerised to take any future beating 😂😂😂

[pdbuzzboard]

There's a video on the channel of a controller in an IP-65 case that might be helpful. Let me know if I can assist.

[NuroMod in reply to pdbuzzboard]

Thanks

[NuroMod in reply to pdbuzzboard]

Hi - FYI - I've given your link to few PWP who need help or are not tech savvy - to build the PD Gloves.