Where the HELL is our GLOVE?: youtu.be... - Cure Parkinson's
Where the HELL is our GLOVE?
we need them on sale now!!!
amazing video isn't? the guy is now doing so great!
yes, and no side effects, appart "overstimulation".
I get to “ try” a glove for 4 months, 2 months as a placebo 😢 4 hours a day placebo for 2 months!! It’s maddening!
Do you have information for us to find out how we could try the glove? Thanks? 🥊
I emailed every contact I saw for a couple years, finally got a response from Eugene Oregon which is close to where I live
I’m very disappointed to spend 2 months 4 hours a day with a placebo
I’m inquiring about contacts elsewhere
Were you in touch with Synergic Medical Technologies? I thought their clinical trial is supposed to be upcoming at OHSU.
yes, I believe that trial is in progress, getting to Portland is much more challenging for me than Eugene
So I wonder why we were not contacted if it is at OHSU
excellent question! Please email them, I got a response
ok
I think it’s in both Portland and Eugene,it is synergic
yes I got an email from them but have not heard from them again so far
I understand the frustration but you are very lucky to get your hands on (in) these gloves. It could be years for the rest of us, that's if it doesn't disappear with many previous promising treatments . I would swap places with you in an instant. If you carry on with the trial it would be great if you would share your experience on here. I think it's a fascinating prospect but I worry that we only get to see the same three success stories. The placebo element is vital if tiresome. The positive is that you are guaranteed some actual treatment unlike many other trials.
how do you know that 'yours' is a placebo?
if you know that in 'advance' that defeats the purpose of the trial, doesn't it?
I know that I am to wear the glove for 2 two month periods four hours/ day. One of the two month periods will be a placebo. I do my part, get faked out 240 hours of precious time
So are you working directly with the company that makes the gloves?
this is a link to a series of videos on a DIY concept to build your own device that some are having success with.
m.youtube.com/watch?v=1PfsV...
Also, see this thread on HU
healthunlocked.com/cure-par...
cool! I’ve had people say “ make them “ I can barely screw in a garden hose 😂😥
If you can build IKEA furniture, you can definitely do this! However, any high school, community college, etc. that has any type of a robotics program can put one of these together without issue.
You can also call on that friend who is a tinker, wood worker, crafter, etc.
If you do try a build, I am happy to answer any questions. We continue to get great results.
like I said, I honestly struggle to thread a garden hose! IKEA hasn’t been an option in years but I’m duly impressed.
can you show your PD partner using the gloves?
Hi PDBuzzBoard, I was watching this video and he mentions there being placebo algorithms and the real algorithm. I'm guessing the VibroTherapyMotorShield.ino file has the algorithm? Thanks!
The algorithm is in the Sketch. There is an array near the top of the sketch. It has a series of numbers 1-4 as well as some 13s. The numbers represent fingers 1=index, 2=middle, 3=3rd, 4=pinky (little). The 13s only light an LED and provide the pause.
The pattern is taken directly from the clinical study paper. They reference and A, B and C with C being least effective. The pattern in the Sketch is a direct map of the first one.
The timer variable determins the length of the pulse as well as the length of the pause. (pause and pulse are the same length)
Hope this helps.
Thanks! I think I have all the files. I will go ahead and order the parts and get started on this next week. Thank you so much!
Bolt - I've only been skimming this thread because I know I don't properly understand the subject, and I have a friend who does. Pointless me trying to participate in a design collaboration when I have a friend who I trust completely, and who is truly expert in the field, offering to produce something for me. But it seems to me there are some enterprising engineers on here...
And fewer mathematicians ! This is essentially a maths, not an engineering discovery. In particular - the famous pattern everyone seems to be copying may NOT be the pattern used by Peter Tass and his team. It is a snapshot, of a section, of a variation of a pattern which is randomly generated. The best version incorporates jitter.
Different patterns have different outcomes. Peter Tass appears to be experimenting to IMPROVE his therapy, and it may be that "wrong" patterns are suboptimal rather than harmful. But the concept is to "shake up" the patterns, to achieve long-lasting desynchronization by remodeling synaptic connectivity using specific spatiotemporal stimulus patterns.
A 64s burst which just repeats the same 8 block pattern appears to completely miss the point. I am waiting to hear more from my (somewhat reclusive) maths professor and audio engineer friend, but I thought a word of caution was appropriate
good post winnie, thanks
You're welcome. Regarding who owns what, and who will be taking this forward to clinical availability it's worth taking a look at US patent US11253424 - granted 22 Feb 2022. He also has an earlier patent, first granted in Germany US9884164.
It's going to be Stanford developping it
Thanks Winnie! I have not been studying this closely, but something I saw gave me the impression that the researchers were using the gloves and performing some type of scan and then, based on the brain scan they were adjusting the algorithm. I could be way wrong on this, but if I got that right it adds another wrinkle.
As I mentioned before, I'm waiting on some feedback from a friend who understands much better than I do.
But I don't think they were using brain scan results to tune or customise the glove signal. They were using the scans to monitor the effect of the patterns they were trying
I think my bigger worry would be that the wrong patterns , including steady repetition of a snapshot from the right patterns, can actively cause harm. The basic concept is to unprogram existing rigid coordination, with an uncoordinated pattern. There are rumours around of adverse responses as well as absence of positive responses, and not too much hard data I can find on this.
This study - which is the most recent, and the clinical "proof of concept" - found
"Clinically, in both studies, we observed significantly improved motor ability. EEG recordings observed from study 1 indicated a significant decrease in off-medication cortical sensorimotor high beta power (21—30 Hz) at rest after 3 months of daily noisy vCR therapy. Computationally, vCR and noisy vCR cause comparable parameter-robust long-lasting synaptic decoupling and neuronal desynchronization."
However , the (regular) vCR is using the CR RVS algorithm. That is a random reset of the stimulation sequence varied from cycle to cycle. Note this is different to FVS (Fixded Variable Sequences , effectively what this forum is trialling) and SVS (Sequential Variable Sequences).
Note also that the positive results of this tiny proof of concept trial were all measured by brain scans.
"However, blinded video Unified Parkinson’s Disease Rating Scale (UPDRS) III scores (excluding items for rigidity and speech due to video constraints) did not show a significant change." Unlike results on this forum!
So, the overwhelming probability, is that the positive effects so far experienced by experimenters on this forum, are a placebo effect. It is worth being reminded of the power of placebo in PD by Art's recent post .
frontiersin.org/articles/10...
"At 4 months placebo had a median reduction 42% in UPDRS-Motor ". 42%!!! we should all get that drug
Just to emphasise the point about the simple 3-2-3 pattern everyone is copying here NOT being the CR-RVS nor CR-SVS therapies trialled at Stanford, the bottom of the famous graphic says
"A representative regular vibrotactile 3:2 ON-OFF CR RVS pattern, in the following denoted as regular vCR, is shown in Figure 1A" ncbi.nlm.nih.gov/pmc/articl...
That is one example of the patterns used in a series of patterns that are randomly varied. It is NOT the pattern repeated time after time after time forever
My friend has just come back to me. He is working on a desktop test prototype using headphone drivers, a 5.1 AV amp to drive them, and a full RVS FLAC file with 4 channels audio, on a random sequence - which a friend of his at THX (George Lucas's company) created for him. He originally used metal dome tweeters, which he says work well, but are about 4cm diameter, and too big to put in gloves. He has now found, and tested the headphone drivers which are about 3cmx1cm so finger tip shape, and can be held to the finger with a rubber band (and eventually built into a glove). He is a pretty special headphone amp designer, so we are looking to build a portable 4 channel, and we think we can use a Raspberry Pi to play the 4 channel FLAC file.
And "yes" - it's no good just repeating the 4 channel 3 -2-3 pattern in an endless loop. It needs either an SVS or RVS program, which repeats sufficient times for each of the 16 combinations to have an equal probability of occuring over the sequence programmed. Apparantly this audio file that his friend produced does that (he's quite good at maths too!)
I'm quite excited 😀
WOW! GOOD POST! GOOD LUCK!
You GO Bolt! We are ALL pulling for you!
Where do you get all the files, components info?
yes please. lets see the gloves
All I have in the phone is one hand in the archery gloves. I'll grab more as she uses them (she just finished a session on the board).
This is so cool! And it sounds like your partner's PD symptoms have dramatically improved. Such great news!
Be inspired .. Enjoy ...
youtube.com/watch?v=DDyOiQk...
Click " Watch on Youtube "
I'm thrilled to see the remarkable progress you've made, and it fills me with pride to know you, sir!
Fantastic video! Well done.
What type of tactors are you using now? I’m also developing a glove system and using LRAs.
Do you have therapeutic benefits to describe at this time ? Thanks again for the inspiration!
These are using ERM motors and we are having good results. I met with a fellow builder that is following the LRA path and wasn't getting enough energy delivered to the finger (thus the vibration sensor video).
Results are numerous. Improvements include gait, tremor, posture and balance. Non motor include blood pressure normalization, substantially reduced constipation issues and an overall improvement in outlook and clarity of thought (could be due to the improvement in other issues).
On the blood pressure, he NOH was rapidly pushing us to DBS. She now has pretty good control over the BP drops. We have been able to substantially reduce the amount of BP meds she is taking (Midodrine from 30mg per day to 5mg, Droxidopa from 1200mg to 1000mg). This is not to say that she doesn't have occasional events, but, previously, an event in the morning meant we had a very long day ahead. Now, an event is an event and, once it clears (few minutes), she moves on with her day.
Best of luck with your build. Let me know if I can help.
thank for your encouraging feedback. Highly appreciated.
NuroMod. Very inspiring video !
What kind of tactors are in your latest design?I’ve noticed various designs using Audio exciters, ERMs, LRAs, so I’m just curious what you settled on. Thank you again!
Currently it uses ERMs but designed to handle LRAs and audio excitors and ....😀
How awesome is that! Would standing on an exercise vibration plate have the same effects? Like 30 mins 3x a day?
i've owned a vibration plate machine for several years... it SAVED ME from EXCRUCIATING leg cramps -- several times.... But I don't use it daily for my un dx'd PD with "internal tremors" ... but I highly recommend you get one
I've been using a vibration plate for about 2 weeks and I seem to be seeing a little bit of benefit. I use it once a day for 10 minutes. I started out at 4 minutes then worked up to 10 minutes. I've been at 10 minutes for 3 days. Trying to decide if I should go for 2 times a day. Just want to take it slow. I don't want something else to show up. It seems to be making my meds work a little faster and longer; therefore, I'm having less tremors. I only have tremors during my off times.
Maybe I just didn't listen to it well enough, or it didn't sink in, but I don't understand how someone would be able to reprogram neuronal states, with fingertips as WinnieThePooh's friend stated.
"Probably limited risk of harm. I high risk of completely wasting your time because the key to this therapy is the way you reprogram those neuronal states. It's not just about getting a few good vibrations".
Thanks! 🥊
i've posted this several times... here it is again... you can buy this on Amazon for $89 or about $30 less on eBay.... This is how it works to minimize my "internal tremors" (I'm not officially dx'd with PD.... but I have several related symptoms and my neurologist/MDS is a 'bozo' ...
--------------------------
When I go to sleep... I rest on my back... I position one of these massager on the left side, hugging my body... and the other one on the right side... i put them both on 'low speed' ... i rest my forearms on them and the my hands loop over for me to grasp other parts of the massager... the 'entire' massager vibrates STRONGLY... not just the padded area... It literally 'rocks me to sleep' ... ! ... My tremors are in 'check' ... I'm doing almost no exercise... I gave up on taking over 40 supplements daily... I am on the O.M.A.D. diet (one meal a day with all calories eaten within 2 hour window, so I'm fasting for at least 22 hours every day ... Today is day #358 of O.M.A.D. without a single time cheating!!!
--------------------------------------------------
Do you have the link to the specific product in Amazon that you can share? Thx
amazon.com/gp/product/B081G...
$89
------------------------
i've seen this for $30 cheaper on eBay
Thank you!
This is really cool. I can’t seem to train myself to sleep on my back. However, I do not have tremors.. Everything else..I’ve got. I wake up once or twice a night due to needing some C/L. I can’t seem to overcome it. I am trying RYTARY, but I suspect it has some long term side effects.
i was a life long right side fetal position sleeper... hated the thought of sleeping on my back... but it didn't take long to get used to the new position with the gengle massaging on both sides of my body... because my internal tremors are very mild anyway... the electric massaging masks those "internal tremors" so I don't have to "think/worry" about them... and I usually listen to a YouTube health video as I fall to sleep on my back... When I wake up in a couple-three hours to use the bathroom ... and then go back to bed... I fall back to sleep in my normal 'right side fetal position'..... this works for ME! ...
Trials always take time, usually a very necessary process where novel drugs are concerned. In this case, the risks are limited and perhaps there is an argument to produce and offer a beta version for in community testing and development. Users would have to accept the limitations as early adopters but the feedback from widespread use could accelerate the design. I fear though the developers want to get it “just right” before a formal commercial release
as far as i can tell there are 'zero' risks to the glove... i've devised my own 'vibration therapy' -- see my other post
There is very rarely zero risk with anything. I showed the videos to a friend, who is an electronics designer and engineer, and among his comments was
"I watched the video you linked to regarding the Parkinsons research - very intriguing. I do wonder what side effects it might have, given that the treatment alters neuronal states and therefore how isolated are the changes - there was little discussion of that. "
He went on to say
"The question is: is there enough info out there to experiment with the treatment - the physical/electronic implementation is relatively straightforward - miniature haptic vibrators hooked up to multichannel music software."
Probably limited risk of harm. I high risk of completely wasting your time because the key to this therapy is the way you reprogram those neuronal states
It's not just about get a few good vibrations.
winnie you're too damn negative about 'everything' pal...
but i wish you the very best
Not negative. Experienced and selective. I had to wade through an unbelievable number of your posts to get back to this one, and this wasn't the original I was looking for
healthunlocked.com/cure-par...
Now, I've been enjoying the benefits of the well red coronet all this time because I red the research.
parkinsonsnewstoday.com/new...
We share a belief in thinking positively and expecting a cure. Soon
it's good to hear you are getting benefits from the helmet ...
i listen/watch half a dozen or more health videos/ reports ... daily
some of it is contradictory ... but i guess that's "science" because PD is such a weird disease...
By a spooky coincidence my friend just phoned to say he is working on a "proof of concept" desktop version. If we can suss the programming and the appropriate tactile intensity (very light) and make it work, then he will look into doing something more glove like. But the prototype should be relatively inexpensive. I'm quite excited
”the key to this therapy is the way you reprogram those neuronal states”
I didn't know that neurons had a programmable state. how does it work?
Vibrotactile Coordinated Reset delivers vibratory stimulation to the fingertips of each hand. A specific pattern of vibration to each fingertip is delivered which theoretically disrupts abnormal synchrony in the brain.CR stimulation was initially developed computationally in the context of DBS, to specifically counteract abnormally persistent neuronal synchrony observed in PD
By employing dynamic self-organization and synaptic plasticity principles, CR stimulation patterns aim at an “unlearning” of abnormal synaptic connectivity and pathologically persistent synchrony
"is delivered which theoretically disrupts abnormal synchrony in the brain."
delivery what in the brain?
is something measurable?
abnormal synchrony in the brain of what?
I assume there is also normal synchronicity and what is it like?
What is its function? On what basic structure does it operate?
You need to know the structure in depth to understand the function if we want to operate with cause, all engineers know this.
The fingertips give the tactile perceptions of hot, cold, humid, etc. I'm sorry but in my opinion touch is just a sense like any other and its function is to give us awareness of the external environment and it doesn't interrupt anything in the brain for me.
However the result is what really matters, I hope to be proven wrong by these.
GioHave you been away somewhere? A parallel universe maybe?
I was about to write you the same thing.
okay that electronics are fascinating, but the forum is Cure Parkinson’s, that's how I remember it.
here the study :
clinicaltrials.gov/ct2/show...
says the study is canceled!?
Yes, or so it would seem. Surely WTP will be able to explain why, given its extensive citations.
They had problems with the commercial partner they were using. They now have a new commercial partner to build the gloves, and are due to recruit for fresh trials "any day". I think they hope the commercial approved glove may be available mid to late 2025
can you post a link to this info? I’d like to see if I live anywhere near the trial. Thxs
The trial is at Stanford. med.stanford.edu/tass-lab/c...
This appears to be the canceled one.............
ClinicalTrials.gov Identifier: NCT04877015
Recruitment Status : Terminated (Stanford terminated the study with no reason given.)
First Posted : May 7, 2021
Last Update Posted : December 27, 2022
yes Gaga1958 ,
WTP who is the new commercial partner? Thanks .
that was WinnieThePoo that made that comment.
try contacting pat to find out:
Patrick Riddle
Book Writer
(209) 981-6992
riddlelaw@patriddlelaw.com
Are you kidding me? We are talking about the Stanford study ( clinicaltrials.gov/ct2/show... ) which according to WTP is based on a 15-year-old patent (US9884164).
Don't you read the replies?
I have nothing against the guys down in the garage who build these devices, but in my opinion it is not possible to reset the networks of the human brain like a computer. Cellular Life built our brain in a couple of billion years and we don't know its functions to be able to modify it without breaking anything by the way.
I think this guys with PD may have a big disappointment and it won't be pleasant.
Don't kidding me please.
I have PD but I'm not that stupid.
hey pal, did you watch the multiple testimonial videos? from multiple subjects? the glove ... WORKS
But did you buy it? If you are so convinced why not contact him and buy a glowe like his. Then give us a couple of videos and a report of how it works with your PD after a month.
i would if i was in as bad as shape as so many on this forum.... i don't take 'any' meds ... i'm self-treating my symptoms at this point
And how long have you been diagnosed? If you've never taken ldopa how do you know if a person is "on med" or "off med" in a video? So how can you evaluate from a video whether something works or not?
see my new post: WHERE the HELL is our GLOVE? part two
This is not new technologyNeuromodulation was researched by the great Neurologist during the late 1850s. By Dr Jean Martin Charcot.
Follow Peter Tass on Twitter. He is doing the Gloves in Standford University of California. Also follow Charco-Tech who developed the CUE1 that's available in the UK but not in US at this time. Again I fear that big pharmaceutical companies will fight against these devices, because their days if PD drugs may be in less demand. However here in the US we know how much big pharm is in bed with the political communities. So the development of these devices will be an uphill battle.
yes, big pharm often tries to block competing products, regardless of harm to potential users. However, in this case the technology is within the reach of individuals. A number of people have reported success in assembeling devices based on published data and and are proceding to testing efficacy. I think information on the validity of this therapeutic approach will emerge relatively quickly and --providing the results are good--small scale production and distributiion will follow. I say small scale b/c patents will block large scale for profit entities, but individuals making devices for relatives or friends on a not for profit basis will proceed.
@NuroMod and others, is there a more usable gathering place for all the makers working on gloves? I saw the one phpbb link and that had some useful info but didn't seem like a complete discussion going on. Would love to organize ourselves... Now that I have version 1.0 as a glove I really want to improve the design but I fear we're not learning from each other as fast as we could be.
I can't keep up, did you already see this product?
thanks -- I've had a vibration plate machine for over 10 years... it SAVED me from EXCRUCIATING foot and leg cramps many times... now i've found a trick in how to use it to GREATLY HELP my constipation!
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