I thought it best to start a new thread. There have been a few others regarding the idea of building a DIY device to experiment with the possibilities unleashed by the research carried out at Stanford by Dr Peter Tass.
The technique requires a pattern of on and off burst stimulation at the fingertips. Dr Tass has experimented with several variations on the pattern. Variants include CR-FVS CR-RVS and CR-SVS. The best appears to be CR-RVS with about 30% jitter applied.
A friend with appropriate expertise suggested an audio based implementation of this idea. A couple of other friends are helping me implement it.
We are using a 4 channel audio file using a suitable algorithm for the CR-RVS. I hope it works anything like as well as the early video reports from Stanford. I am doing my best to wait patiently. It's not a very good best
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WinnieThePoo
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Well done Winnie. Thank you for describing in detail what you are doing. Unfortunately for me some aspects are incomprehensible. I hope you can do something good. It would be a victory for the artisan over the Big Pharma. I am rooting for you from Italy. When you write: "surprisingly they are proving to be very suitable", what do you mean? Good luck and fingers crossed.
Hmm. Spoke too soon. Whilst the concept of delivering the stimulus from a standard audio transducer seems sound, and makes for a simple DIY build, and the headphone driver being tested works fine on its "sweet spot" it's suspension has too much compliance for a 4 finger glove install and risks bottoming out. So its back to the parts bin, to try to find some devices which are stiff enough, and readily available for amateur constructors.
Thanks Fed. I'm not sure about the victory of the artisan over big pharma. I am aware of, and grateful for the enormous time, effort and investment by Peter Tass and his team. As well as his skill and inspiration. And I appreciate the detailed information they have made public. The artisan would be nowhere without that investment by "big pharma" (and may yet be nowhere) But like other PWP, if you have PD, tomorrow is much too long to wait. Edit (oops - forgot to answer the question)
We want to try audio transducers. But this idea uses quite low frequencies (in audio terms) Headphone drivers "roll off" at low frequencies. But they are working well - producing sufficient amplitude for a "feel" at the right level.
Check this out: youtube.com/watch?v=1PfsVjn... . The latest Arduino based build is very straight forward to rebuild. There is even a github with all necessary resources list. pdbuzzboard reports great results (symptom reductions)
I repeat the comment I made on "Where the hell is our glove?"
The trial published shows
"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 (Fixed 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, who are using a repeating loop of a short duration pattern, are a placebo effect.
Yes. That's possible. They are using brain scans at Stanford with the therapy, but I think only to monitor the results. Not as an individual customisation tool. Whilst the gloves are fairly new, Peter Tass has been working on the core technology long before that with DBS.
And my strong impression is that they are looking to launch on a big scale , with a view to it being available (subject to cost) to all. That is going to be a very different prospect if it requires regular re-calibration by brain scan.
I strongly doubt it. I think the optimum frequency is agreed at 250Hz - ( a B3 - the white key to the left of the C below middle C on a piano). I think the idea is to either have just a single universal pattern, or possibly a range of patterns that can be trialled on a kind of "suck it and see" basis.
Of course the trials Peter Tass was running involved 4 hours use a day. 4 hours! 4 bloody hours! We need to work on a portable version 😂
Have you seen the videos of the gentleman in the latest trial in OR? This trial is being run by the manufacturer after canceling the next Stanford trial. That gentleman states he is in contact with the gentleman wearing the turban in the News articles, and that his effect has been cumulative, so he only wears the gloves occasionally when he feels his foot dragging. So don't get hung up on initial treatment times of 2+hours twice a day.
Thank you. I was aware that the goal was to switch to a maintenance dose. I was working on 4 months of 4 hours daily then 2 hours 3 days a week after that. But that first 4 months is a lot of glove time. It will be easier with better gloves...
Eh, not sure what you mean by the original thread - there have been a few about Peter Tass and the gloves, but the one I referenced where I cut and paste my comment was
Wow. I, too, am working on this, although my brother in law is doing most of the work. We were able to get EAI to sell us the vibrotactor devices that Dr. Tass had originally used (although I read somewhere that he is now experimenting with piezoelectric devices) .
The box and gloves are built. I have parked some recent images of the box here:
The box will have a web interface. After a bit of difficulty defining the algorithms (ordinary vCR vs. vCR with jitter) the software is about to be loaded into the computer. We had to make some assumptions about how the patterns are generated, relating to minor issues Dr. Tass did not fully address, but they are not expected to be of much consequence.
I was not aware that there was a third algorithm, or where it came from. Is it true that ordinary vCR with jitter is generally deemed to be the best?
Any additional information you can furnish would brighten up my day immeasurably.
I think the most recent information from Stanford is that RVS with jitter performs best. But thats a huge oversimplification of a study which really concluded "interesting. Shows promise. More work needed"
I was keen to have it as an option for my trial of the therapy. But it is evolving research, and our implementation is significantly different from Tass tiny surface area stimuli. Amplitude equivalence is one issue we are working on.
When you are referring to 3 algorithms, do you mean the test procedures in that paper, where they used a "control" of purely periodic multichannel stimulation?
I just ordered all the components to build the pd buzzbox. As far as I can tell I have everything I'll need ordered and the total was not too much over $300. I'm pretty excited about it- I guess I'll see how my PD soldering skills are, but fortunately there's not much soldering required. This includes a sixty dollar fancy soldering station and a multi armed soldering jig that I treated myself to. I'm hoping to be buzzing next week!
I haven't watched the buzzbox video end to end. I am unclear what stimulus pattern is being used. I have tried to find information in the very long thread started by snowski but nobody I found appeared to understand the trialled patterns. I looked on f2heal but found nothing.I did find a post somewhere of an 8 channel implementation using a flac file but can't find it now (maddeningly)
However, there appear to be plenty of happy kit builders experiencing great results.
These were interrupted by covid 19. But not spectacular. Only UPDRS 3 seems to have benefited. The 3 month results showed a statistically significant improvement of at least 3 points for all 6 participants. But that was only just, in one case. In the 2nd trial, the 2nd participant showed no improvement. And these trials involved 4 hours use a day. My impression is that the happy kit makers are not using their pride and joy for anything like that amount of time
We have probably all watched kanwar butani and I'm probably not the only one to cry. There have been other Tass patients doing very well. But the trial results were more modest.
Using proper Tass vCR patterns
The results of the DIY trials suggest Peter Tass has been wasting his time, and any old stimulation pattern is all that's needed.
I've just been asked by another member about the pattern for vCR. I was going to post on snowski original thread, but it's so long it's unworkable. This thread is starting to get that way. This buzzbox constructor confirmed to me the pattern he is using, and I am pretty sure that's not going to achieve anything positive. It is just too hard to figure out what anyone else may be doing, because the thread is SOOOO long.
Peter Tass and his team have experimented with several patterns , and appear to be continuing to do so. The "normal" pattern is vCR-RVS and a good option would appear to be that pattern with jitter applied. It is still a good pattern without jitter. Better than the short loop which others appear to be using
The pattern is pretty simple. Each TCR with stimulus picks at random from the 24 possible combinations. Superimposed on that structure is a 3 on 2 off pattern. It is not 3-2-3 small gap then repeat the same 3-2-3
It is 3-2-3-2-3-2-3-2-3-2-3-2-3-2-3 etc
If we take the famous figure 1, we maybe have 1:7:15:R:R:23:4:11. And then that is being looped back to the beginning by buzzbox followers, apparently, so you get 1:7:15:R:R:23:4:11:1:7:15:R:R:23:4:11 or possibly 1:7:15:R:R:23:4:11:R:R:1:7:15:R:R:23:4:11
It's not absolutely clear. Either way its wrong. It should be
Just adding a possible option. I ordered these finger cots from Amazon. they hold the wires and vibrators pretty secure. amazon.com/dp/B0BPRYCDNX?re...
Thanks. I had found something similar. They look a good solution. And should prevent "cross talk" between the fingers. It depends on which driver is suitable for the task and whether it will fit.
Getting there. This is a section from an RVS with jitter wav file. Have decided on the equipment for the mark 1 implementation. If the UPS driver can resist the temptation to deliver to the wrong village 10km away, might be up and running this weekend. Which would give me 3 weeks use before my daughters wedding
Screen shot of 4 channel waveform at 250Hz burst for glove project
Going to go with the 13mm coin exciter. And my custom vibration focus adapter, and antivibration pad. I am hopeful that it will run acceptably quietly, and achieve a similar sensation to those used at Stanford
Want to update the group on our efforts to develop a DYI version of the Tass Gloves. AT last report my brother-in-law had uses our vibration pad (See Above) for a month and had shown a 9% improvement in his PT tasks.
Here are the gloves we are working on powered by two 9 volt rechargeable batteries. They can power the vibrators for more than 5 hours. Just 3D printing out the two cases for the electronics.
Good to see progress. I am finding that my flaky prototype is providing apparant benefit, but it is much to fragile to be viable, so I am moving to a more robust and compact version. 4 hours a day is a huge time commitment, especially for someone in full time employment. I've managed one day with 2x2 hours so far, and I've managed on 2 hour session so far today
At least clicking on your notification took me to your post. I try to follow new comments on Snowski's original post and it takes me to the middle of nowhere. It's just impossible to navigate that post, which is a pity
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