Some of these have been asked elsewhere, but I wanted to bring them together in one place. These are the issues I now need to address, to try to ensure a therapeutic device with sustained desynchronisation effects
Probably best to break it into separate posts on my own thread
1) How do you measure peak to peak amplitude of 0.03mm? Best I can try to objectively measure is 0.1mm (that's 0.05 travel from rest).
2)What is going on with official trials? There appear to be a couple of folk on this forum who are "on the Peter Tass trial". But the original trial was terminated with no reason given clinicaltrials.gov/ct2/show... , and I cannot find a replacement listed
3) Let me repeat that. I cannot find a record of a current, live, in-progress trial by Peter Tass and his team listed on clinical trials.gov - where it should be listed. Can anyone point me to an official record of this new trial, that people are apparently participating in? If not, what is it that they are doing?
4) What is the placebo going to be? For a valid trial, it would need to be indistinguishable from the real deal. What is that going to be? My brief experiments with "fakes" suggest the real pattern is pretty recognisable. Which element will be false in the placebo group? And most importantly, how does that affect the validity of any innovative deviation from Peter Tass standard by DIY projects being carried out on this forum?
If you change the frequency much, its easily heard. The sound in the lab of the journalist wearing the gloves is pretty easy to recognise. It's a B below middle C. Move the frequency out of the 200-300Hz range and you get a G below and a D# above. Thats a major 3rd. You can hear that. i would argue you can hear a semitone easily enough, with that video as a reference.
A simple 1-2-3-4 pattern repeating is obvious. As are short loops. Amplitude? Contact site? Contact point diameter? Again - assuming a fairly well-informed participant, these are not easy to make a convincing undetectable fake. But without one, you don't have a valid placebo, and you don't have a valid trial
5) What are the consequences of getting it wrong?
Is it just that there will be no benefit?
Or the benefit will be "acute" - ie immediately after treatment but not enduring or building
Or is there the possibility of harm? Aggravating and further reinforcing the synchronisation?
"The burst-like vCRS with 250 Hz vibratory bursts at small peak to peak vibration amplitudes of 0.1 mm or even less, e.g. 0.03 mm (Figure (Figure3),3), aims at predominantly stimulating FA II units and the corresponding thalamic neurons. To stimulate FA II units as selectively as possibly, one should stimulate at particularly low peak to peak amplitudes [13,15]. "
"Stimulating at high amplitudes may activate remote FA II receptors too [17-18]. This might reduce the desynchronizing effect of CRS [7]. Particularly at the large vibration amplitudes, it has undesired, synchronizing effects."
the trial I’m currently participating in is at Synergic lab in Oregon.
Yes
I think we'd worked out that was the current trial. Fantastic that you get to try the gloves, but nothing to do with Stanford or Peter Tass, so not going to help get gloves licenced and available to the public
How are you getting on with them?
Are you managing to use them for 4 hours a day?
yes, I’ve been 💯 twice/day 2 hours each. 20 days in tomorrow with no change. So nearly certain I’m in placebo mode. I look forward to receiving the “Stanford protocol “ as it’s been referred to July 7 for the second half of my participation
I remain intrigued by the placebo. What differs from the "stanford protocol"?Surely neither the burst frequency (250hz) nor the 3-2-3 pattern, since both are clearly audible and distinctive. You can hear it on the gloves worn by the reporter at the start of the news video.
So what have they changed that they're confident provides no benefit?
good question, I think it’s the pattern. I’ve not watched/ heard this video but the pattern I think is placebo is very repetitive, hand to hand and about 90% predictable.
Thank you for the information, but I remain puzzled. It doesn't make much of a placebo if it is an obvious pattern - obviously different to the "real deal". I can't see the FDA or EMA being very impressed with that, so it makes the trial entirely pointless (for those running it)
it seems obvious to me, but I’ll know more after July 7 when I trade out the gloves
Hi Manypony,
I was just wondering how the second half of your trial was going and if you think you are getting the "Stanford protocol" and if you are noticing any benefits?
Thanks.
I’m nearly certain I’m getting the Stanford protocol. I’m definitely noticing brain fog clearing 🙏 I think two 2 hour sessions daily is about twice my tolerance and the second session makes me pretty anxious. After Sep 5 i can choose to wear them once a day and I think that will be ideal. I will also go through a series of motor tests at that time to compare after 2 months 4 hours/ day. I’ll report back 🙏
Thank you for the update! — Which are the side effects of the glove stimulation that you find difficult to tolerate? Have you had any adjustments in your medication since being on the ‚Stanford protocol‘?
It’s really anxiety mostly. It’s more stimulating than I want at night.
I fall asleep using mine in the evenings sometimes. I always subjectively feel "good" after wearing them. They are very restricting however, so 4 hours a day is a major commitment (I still have a full time job). I am really keen to get to the 2 hours once or twice a week phase. But that will be 4 months of glove usage for me, not 2 months. And dependent on observed effect.
At the moment they have a very obvious acute effect. If I stop using them it's like halving my sinemet. It's almost like the direct equivalent of swallowing a tablet. It's less obvious whether any benefit is building with time, although to be fair, I've only been using the new gloves consistently for about 2 weeks
Kanwar, after a brief cameo, appears to have disappeared. I would be interested to know more of his 24 tablets to 7 story. In my case whether thats going to be 1 10/100 sinemet tds for all time, or whether it will need to be more as my use of the glove continues towards the 4 month "plateau".
Hopefully I'll be a bit more on the ball, and recognise over-medicated for what it is right away. I have been caught out twice this year now. I think I'll err on the side of undermedicated next time
Doing my glove sessions mostly in the evening, I can confirm both: they have a relaxing effect while wearing them, a little bit like taking extra medication, but then I also have difficulties falling asleep afterwards, which I didn’t really have a problem with before.
As for the longer-term carry over effects, it’s difficult to tell, because I have been using the gloves every day due to the pleasant immediate experience. But maybe that’s just the relaxation from watching movies or listening to music for a couple of hours every evening, since I cannot do much else with my hands during that time.
Hi Manypony. Have you managed to contact Kanwar and compare notes re your experience with the gloves?
6) What wave form for high frequency burst stimulation? Tass uses a sine wave with a rapid start and decay. Many projects seem to be using square waves
Great questions. I pretty much scan Tass Lab website, social media, comments on videos etc almost every day looking for more clues to some of these. It's frustrating that it's such a mystery.
To pick up the glove story, I have cracked the audio side of the problem last night. I now have a 2 hour ac3 file which plays from a raspberry pi into a dolby 5.1 extractor into a 4 channel power amp. All fit into a small carry bag with 6 hour batteries and room for the gloves {it's a ryanair under seat bag)So I'm portable. If the 3d printing arrives this Friday when it is due, and Mrs WTP has time to do the sewing, I should be ready to start seriously on 4 hours a day
It may be "cheeky", but should you ask Professor Tass about your questions?
"Next NoSilverBullet Zoom webinar on Monday 5th of June: “Vibrotactile fingertip stimulation to ease Parkinson’s symptoms” by Dr. Peter Tass"
I think this would be a good time....
I think the professor is a good man who understands our desperate impatience to be freed from this nightmare as soon as possible.
I thought as much too! I doubt very much he's going to answer the placebo one. And it may be he doesn't know the answer to some of the others. I will register for the event and maybe suggest some questions to Michel.
Of course, fairly key would also be
"How long do you think it will take to get authorisation for official gloves?"
"How much are they likely to cost?"
"Are you also obtaining authorisation for Europe?"
"Can you provide a comprehensive statement of the number of patients who have received the glove therapy, and some sort of table of results grades?"
"Do you apply any customisation of treatment akin to DBS "tuning" when you administer the therapy at Stanford?"
If the answer to the first 3 are "soon" (within 12 months) and "Not too expensive" , (say under £1000), then the motivation to go DIY is significantly reduced. When the first DIY projects listed, I reckoned on "soon" and "inexpensive" and that I would wait, but a friend who I know understands this stuff suggested the audio transducer project. And I've had fun building mine, developing the concept, and I'm pretty confident they are a very close copy of Tass'. The only real issue is bulk. My "control electronics" need a small holdall, and the fingertip boxes on the gloves are a bit big, especially for someone with small hands like me
I'm also hopeful, that once the latest (final?) versions are built, with luck this weekend, I can make a really serious effort to do 4 months at 4 hours a day, and get an important benefit. Dabbling with a few hours here and there so far has been promising.
It's been fun working on it with another friend, who I was at school with , who has been fabulous in his support, not just writing code to produce the WAV files, and helping me with IT issues, particularly Linux, and audio codec's , but generally suggestions and ideas. And Mrs WTP has pitched in with craft assistance.
But yes - Dr Tass may be able to provide valuable information on some of the important points. The most important of which, is "how much scope is there to make things worse, by deviating too far from the "norm"?
In that regard, I continue to focus on "imitation, not innovation". The closer I can copy each detail, the smaller the risk.
"The most important of which, is "how much scope is there to make things worse, by deviating too far from the "norm"?"
healthunlocked.com/cure-par...
"Kwisatz
1 hour ago
Day 6: The trial is temporarily stopped, due to a relatively significant unannounced deterioration!
At the weekend, as planned, I started working with the gloves, and on Sunday I managed to use them for 4 hours. (Incidentally, the gloves last 4 hours on a single charge, and charging is also quick, about an hour.)
By Monday, I had increased tremors and akinesia. Another 4 hours of wearing gloves on Monday, the symptoms got even worse on Tuesday. It's only 2 o'clock on Tuesday, I seem to be better today.
Because in the meantime several "smaller" experiments (Citikolin, B6, B2 ) were started, so it is not certain that the glove is the "culprit", but the suspension of use seemed logical."
Oh Bother! I also have "confusing distractions". I hardly exercised for the week in the UK for the wedding, and missed 4 days of red light hat. I've also added an 8pm sinemet dose for the minute, because things deteriorated (in my case due to stopping the gloves). I am supposed to take the 8PM dose but previously usually forgot.
The new boxes have just this minute arrived - 2 days early. But I'm too busy with work to do anything before the weekend
This is how it looks assembled (well, not wired up or the lid screwed down, but you get the idea)
"audio exciters" what they are?
Emh WTP, Tass uses something different and no "Square Waves".
"We developed three different vCRS aiming at eliciting particularly strong responses of only one type of mechanoreceptor units and corresponding thalamic neurons with controlled timing. For this purpose, I employ comparably simple vibratory stimuli which can straightforwardly be generated with standard reliable mechanical stimulation devices such as piezo actuators (PI USA, MA, USA)".
Mechanical stimulation no audio.
ncbi.nlm.nih.gov/pmc/articl...
Hi Gio
Mechanical stimulation not electrical, was the discussion Peter Tass had. (By contrast, his CR for DBS , which uses the same principle of neuronal desynchronisation, uses electrical stimuli, nor mechanical ones)
The audio devices are not strictly audio, but kinetic (mechanical). An exciter is a miniature loudspeaker without the cone. Normally it would be attached to a large flat surface, which it "excites" and which in turn moves the air in waves to create sound.
In my case, it's attached to half a metal button popper, and the sound it makes (identical to the sound made by the gloves Peter Tass uses) is a by product of the mechanical energy we are using - effectively waste acoustic energy. The little metal button moves up and down vertically when stimulated by a sine wave. It is a device designed for audio use, but being used as a vertical mechanical stimulation.
The audio signal I am feeding it is a 250Hz sine wave, sampled at 44.1Khz , 16 bit. It is some of the other DIY glovemakers who are using square waves. I have attached a picture of the waveform I am using. In the next post I'll put the pattern
I really don't think so, what Tass uses (piezo actuators (PI USA, MA, USA) ) is a totally different technology, much more precise and ... more expensive, aimed at precisely stimulating certain skin mechanoreceptors.
Selection of target cutaneous mechanoreceptors
For illustration and brevity, in this paper, we focus on excessive neuronal synchrony in PD which manifests itself as synchronized oscillatory firing in basal ganglia and exaggerated phase-amplitude coupling (PAC) of beta phase to broadband gamma amplitude in the EEG over sensorimotor cortex [1,11]. To desynchronize a neuronal population, CRS optimally employs phase resetting stimuli delivered to typically three or more separate subpopulations [1,6-7]. Accordingly, the stimulated skin area needs to have a high density of the selected type of mechanoreceptors corresponding to a large area representation in primary somatosensory cortex (S1), and the different stimulation sites should ideally have relatively similar vibrotactile sensitivity. As reflected by the sensory homunculus, the cortical representations of the hand and in particular, the fingers are large compared to that of other parts of the body [14].
Approximately 17,000 mechanoreceptive units innervate the glabrous skin of the human hand [12]. Based on the response to a sustained step indentation, two major categories of mechanoreceptive afferent units have been classified [12]. The majority (56 %) of units are fast adapting (FA) and respond to moving stimuli as well as to the onset and removal of a step stimulus [12]. In contrast, 44% of the units are slowly adapting (SA) and respond with a sustained discharge [12]. In addition, based on the properties of their receptive fields, both categories are classified into two different types [12]. The fast-adapting type I (FA I) units and the slow-adapting type I (SA I) units have small and well-defined fields. In contrast, the receptive fields of the fast-adapting type II (FA II) units and the slow-adapting type II (SA II) are wider and have obscure borders. Fast adapting I units have also been denoted as RA (rapidly adapting), whereas FA II units have been denoted as PC (Pacinian corpuscles) units. The four different types of human cutaneous mechanoreceptors respond optimally to qualitatively different stimuli [12-13,15]. Edge stimuli and stretch stimuli are optimal for SA1 and SA2 mechanoreceptors, respectively. Edge stimuli (SA 1) units often have a rather irregular sustained discharge, whereas SA 2 units discharge in a regular manner, but often display spontaneous discharge in the absence of tactile stimulation. In contrast, vibratory perpendicular sinusoidal skin displacements in the 30 to 60 Hz range are optimal stimuli for FA I units, whereas vibratory stimuli in the 100 to 300 Hz range are optimal stimuli for FA II units. Fast-adapting type I (FA I), especially SA I units have a pronounced edge contour sensitivity and hence their response is stronger when a stimulating contactor surface is not completely contained in the receptive field [12]. Accordingly, to enhance the FA I responses, instead of a flat, spatially homogeneous contactor surface, one could use a contactor surface with a spatially inhomogeneous indentation profile.
Controlled timing by phase entrainment
We developed three different vCRS aiming at eliciting particularly strong responses of only one type of mechanoreceptor units and corresponding thalamic neurons with controlled timing. For this purpose, I employ comparably simple vibratory stimuli which can straightforwardly be generated with standard reliable mechanical stimulation devices such as piezo actuators (PI USA, MA, USA)
CRS aims to modulate the timing pattern of neuronal populations and specifically to cause mutual phase shifts between different stimulated subpopulations [4]. Accordingly, phasic mechanoreceptor discharges with controlled timing with technically easy to realize mechanical stimulators; we select the FA I and/or FA II units as primary target units for the following reasons.
CRS modulates the collective neuronal discharge pattern by delivering phase resetting stimuli to different subpopulations of a synchronized neuronal population at different times to mutually shift the phases of the different stimulated subpopulations [4]. A phase reset can be achieved by means of a periodic pulse train or smooth (e.g. sinusoidal) stimulus train of several periods length by inducing a phase entrainment. Within a few periods of the phase entrainment, the neurons’ phase dynamics (i.e. discharge timing) gets phase locked to the periodic stimulus and hence is reset (restarted) independently of its initial dynamic state as shown computationally in the context of desynchronizing stimulation [16].
If you say so mate 😂
It is written like this mate.
😂😂😂
“For this purpose, I employ comparably simple vibratory stimuli which can straightforwardly be generated with standard reliable mechanical stimulation devices such as piezo actuators (PI USA, MA, USA)”
Yes - and an audio exciter is a comparable device. I have had help and advice and opinions from 4 friends, all with over 40 years experience in their, field, and all at the top of their profession. On balance I'll take their advice over an Italian florist.
Any time I want to know about flowers, it'll be an entirely different choice
maybe, but when you try to connect electronics to a living body you are in the field of biology, are they biologists?
I have been involved in several studies as a floriculturist in this regard, and I can tell you that the biggest problem is connecting the two different systems, i.e., electronics and cellular life, so that they communicate with each other, as you have also discovered. You can't solve it by putting sound vibrations on your fingers, that's fundamental ,authority doesn't matter ,read Tass.
I'm not technically qualified, but I know that it's equivalent to a "movement" being made by an electromagnetic or piezo moving mechanism! The movement caused by a steam locomotive, an electric locomotive, and a diesel locomotive is no different. It's just physics, let's not mystify it...
Kwisatz, it's not physics but we are in the field of electronics applied to the human brain, therefore biology. With this trial , scientists try to duplicate the results of a computational study (simulated study done with a very powerful computer) on the abnormal synchronization of the electrical oscillations of neurons in PD with all the resulting complexity. I have mentioned the references, just read, no mystification. Unfortunately they are very specialized studies with many technical terms to understand, it is not easy but not impossible. It must be studied, but this study could be rewarding. For example, my first symptom of PD was tinnitus, a persistent ringing in the ear. So I went to an octor who told me to listen to the irregular noise of a fountain (they sell it) for some time a day and that this was the only remedy. I was very perplexed as I expected a pill cure and did nothing. Only currently studying the history of P. Tass's research did I understand the possible foundation of that remedy: abnormally synchronized brain waves. Here the story begins to be interesting for me, but what matters is the result, only if it works is it true. We farmers think like this, it's a shame that my colleague WTP doesn't accept the technical discussion on his authoritative work, he would have only gained. This is because he would have helped to make the topic better understood and popularized according to the principle that people don't support what they don't understand. This is why scientific dissemination based on the truth of the results exists.
Regarding your point, In the link below you find the vibration pattern by Tass ,figure 3, where the movement is expressed in precise millimeters which only a reliable device such as a piezoelectric instrument can physically do, while the WTP one does not by its own admission and I quote:
”1) How do you measure peak to peak amplitude of 0.03mm? Best I can try to objectively measure is 0.1mm (that's 0.05 travel from rest).”
Taken from the original post . Up here.
ncbi.nlm.nih.gov/pmc/articl... 20indentation%20of%200.5%20mm.,-The%20burst%2Dlike
" Figure 3 Vibratory burst at 250Hz.”
But in the end what do I know, I'm just an Italian florist.
Greetings from Italy.😁
Here is a link about Tinnitus pubmed.ncbi.nlm.nih.gov/224...
frontiersin.org/articles/10... the supplementary material which is what most of us developing gloves refer to.
Peter tass uses c-mf tactors which are custom made by EAI based on their c2 and c3 tactors which are moving magnet devices. Not piezo devices.
For the simple purpose in the text you quoted cheap piezo devices were adequate.
"For this purpose, I employ comparably simple vibratory stimuli which can straightforwardly be generated with standard reliable mechanical stimulation devices such as piezo actuators (PI USA, MA, USA)"
Adequate for that simple purpose. But for the gloves he is developing he uses a moving magnet device. Bit like a loudspeaker ( only most loudspeakers are moving coil). But definitely not piezo
I don't want a discussion with you Gio because you don't understand the subject and so it serves no useful purpose. I just wanted to set the record straight so your ignorance doesn't mislead others.
Please stay off this thread where you have nothing to contribute. If you want to talk about vCR please do so on a thread of your own
Bah!... and what are you afraid of ?
But do you really think to duplicate with your " comparable tool" the work of P.Tass ?
You don't seem very convinced either, we can tell by your questions in the post.
Is the vibration of your tool reliable and does it maintain the required accuracy of 0.03 mm ?
What happens when it inevitably gets hot ?
You don't know do you ?
But do we want to talk about the question you ask about the placebo effect or " my instrument makes the same sound"
so what ?
All of Tass's work , where the parameters you are trying to duplicate come from, are derived from his decades of research on CRS including computational studies, do you want him to have difficulty producing a placebo as he has already done with the tinnitus research I posted to you, but which you haven't even read, otherwise you would have understood.
The accuracy of the instrument, the context and especially the definitions of the topic are important.
P Tass wrote almost everything and I quote the first ten lines from your own link:
"Coordinated reset stimulation (CRS) consists of spatiotemporal sequences of stimuli delivered to different sites in the brain. Computationally, it was shown that by achieving an unlearning of abnormal synaptic connectivity, CRS can cause a long-lasting reduction of pathological synchronization, a hallmark feature of Parkinson's disease and other brain disorders. Pre-clinical and proof of concept clinical studies in Parkinsonian monkeys and patients showed that CRS applied through deep brain stimulation electrodes implanted in the subthalamic nucleus resulted in cumulative and long-lasting therapeutic effects along with a reduction of beta band oscillations."
It is not my ignorance on the subject that you need to prevent, but yours.
Link on tinnitus again where a placebo was used, for the record.
pubmed.ncbi.nlm.nih.gov/224...
P.S. your link doesn't work, it's probably this: frontiersin.org/articles/10...
Ignored
The file has 6 channels - an empty Centre and LFE channel in the middle, because I need it to be recognised by a Dolby 5.1 hdmi extractor (as the way I get a 4 channel audio file to the power amplifier I am using). Ch1 = finger 1, CH2=2,Ch5=3,Ch6=4
I am moving a discussion on Jeeves19's thread over here, because we are in danger of thread-crapping his
Well. I feel really good. No tremor - none in bed last night (which had been very apparent before). No aches, pains, numb feeling parts. In particular, no shoulder pain. My biggest point of caution would be , thinking back, I'm not sure I wasn't starting to feel better BEFORE I did the gloves. In particular, I remember smelling dinner cooking, and improved sense of smell was something I had associated with using the gloves. So maybe spending the day at my desk caused the problem, and getting up and walking around fixed it?
But, no avoiding the issue - last night I was seriously uncomfortable and this morning I'm not
And I only did barely 1 and a half hours. It was my first run with the Raspberry Pi based portable system, and that was a big success. The gloves are the issue stopping me using it more. I was advised not to fiddle about trying to do my own 3D printing, but send it to a proper professional manufacturer. They had a minimum 50 euro order, so there was no point in prototyping (a production order costs 70 euros). The first set weren't right. I modified them to be useable with a dremmel, but immediately placed an order for, what I very much hope are the final version. They look good on the desk in front of me. Short version is that the new fixing method with elastic, was way too tight, made worse by the lack of finger channel, and they sent my finger tips numb in 15 minutes. With the wedding coming up Mrs WTP was getting stressed, and I decided not to ask her to do anything else with Mk2 since Mk3 was just around the corner. I bodged a solution with cut-up jumbo rawplugs - which makes the gloves wearable for about an hour and a half.
So, hopefully, new gloves this weekend, and I'll start a serious test next week. Fortunately I have a neurologist appointment on 8th June - because I think I am going to need to cut my meds. Not too difficult to cut the Sinemet. But I need a prescribers help to cut the Pramipexole (if it comes to that)
What bothers me most, is that I am not aware of any other DIY project producing really worthwhile results. Some of these have been at it for months and must have some extended usage to report results on. I scan for reports, but mostly my impression is there are posts about the physical project status, and deafening silence regarding results. Or very underwhelming results. Which is a bit puzzling, and causes me to be cautious about jumping to conclusions about sessions like last night
Still - it's been useful to have a solid break, experience some progressive deterioration, and a substantial bounceback on re-trying the idea
I remain cautiously optimistic - and very hopeful!
Also moved from the other thread, and deleted over there:
Interestingly, improved sense of smell/taste is also something I associate with using the gloves (bHaptics TactGloves) over the last 4 weeks, and this was also reported by Pat Riddle using the TassGloves. Maybe also a slight reduction in action/resting tremor. On the downside, I seem to experience more twitching / myoclonus in recent days. Of course, no idea if this is related to glove use or any other factor of the disease or medication.
Generally, I think there needs to be more objective testing, combined with systematic logging of all the treatments we try. PDTom's approach (healthunlocked.com/cure-par... is a great example for this, but probably a bit too heavy for most of us. Does anyone have recommendations for an iOS or Apple Watch app that facilitates tracking symptoms and treatments? So far I've tried PRO-PD, but find it too subjective (e.g., when it comes to aspects such as motivation or drive which can change the overall score in a big way).
It would certainly be a fine thing if between us we could organise some sort of internally consistent summary and analysis of results. And as Jeeves pointed out, ideally that would include those who got little or no benefit - or even adverse effects
Regarding your twitching - have you reduced medication at all? Dr Tass clearly anticipate this on his trials.
I might try and dig out my trial surveys from SPARK - and use those as some sort of template. I am frantically busy at work - probably until the 31st. I havent really tested anything yet - it has been more a development evaluation. But once I have a working device to test properly, I'll try to log something regularly (Mrs WTP has her sewing machine out as we speak...)
"It would certainly be a fine thing if between us we could organise some sort of internally consistent summary and analysis of results. And as Jeeves pointed out, ideally that would include those who got little or no benefit - or even adverse effects"
I am definitely up for this. In fact at one point I started a spread sheet that could be used over at bb.f2heal.com/index.php (which however has suspiciously little activity lately). Not sure, though, if people are motivated enough to provide all the info, or if they are just happy to dabble with the gloves for subjective gains.
In any case, your SPARK tests would certainly be interesting. In the long run, the best approach would probably be the automatic data collection through wearable devices -- I find that the Health app on my iPhone is already providing some useful information on activity patterns, step length, asymmetry, etc. (there may be further info from the Watch which I do not have) that could be linked to treatment info, which should also be logged systematically.
Yes. F2heal was a good idea but has too little going on. 8 responded to a request to update the project details spreadsheet over a month ago, but the board hasn't been updated. I didn't notice the spreadsheet you mentioned
"Regarding your twitching - have you reduced medication at all? Dr Tass clearly anticipate this on his trials."
I have at some point, but currently have to _increase_ medication in order to reign in dystonia, so cannot easily disentangle the factors of vCR vs medication.
As for the potential effect of vCR. Peter Tass talked about it as being equivalent to providing additional dopamine - but as much as I find the idea of decorrelating pathological synchrony in PD plausible, I don't really see how vCR should have a direct dopaminergic effect. So things may be more. complicated.
Also, the more I think about it, the less medication reduction appears to me as the objective measure that it seems to be. I.e., it is quite easy to convince yourself that there should be a benefit of a particular treatment, and that motivates you to make an effort and go with reduced medication. So the more objective approach seems to be to test symptoms in the OFF before and after treatment.
Gosh. That's a bit scary. My SPARK trial was before I started medication, so there was no need to come off it. My neurologist is forever putting me on the naughty stool for not being absolutely certain I didn't miss a dose with dire warnings of the consequences of suddenly stopping. In particular you are supposed to titrate on and off pramipexole.I'm not sure I'm all that fussed about meeting FDA criteria. Whilst I am happy to help others, with information or advice or reports of my experiences, I am unashamedly in this for me. If I feel better I don't care if I can prove it or not. I'd take a good placebo effect any day of the week.
Sure. I didn't actually mean completely off, as in going without it for weeks, but in the sense that I think was applied in the studies by Tass, where they required subjects to be off (standard-release) medication for >12 hrs.
That I think I can manage, as I typically take my last levodopa between 3-5pm and then not again before 7am (like several others here, I don't seem to need as much exogenous dopamine at night). So this interval could be used for testing in the morning, ideally at the same time, before the first dose of LDOPA.
(If I was a bit better organized, I would even try to do a regular 2 hr glove session, with pre-post testing, first thing in the morning.)
OK. I could probably leave out my 7 am C/L and put back my daily pramipexole to 11am from 7am. My last C/L the day before would be 3pm. Then it's a question of finding some objective tests. And resting the gloves for a few days. I find not all symptoms respond linearly or consistently. Tremor is back in less than a day, whereas bradkynesia, rigidity and shoulder pains hold off for 2 or 3 days. (still based on very limited patchy testing.) Waiting on some velcro to be delivered to finish the gloves. Then probably going to build a tidier resistor box with 47ohm metal film resistors and longer ribbon cable. And a friend with more sophisticated software, and skill is going to do me drawings for a final pro version of the boxes.
Ah. The best laid plans...
I tried for "Off meds" this morning (it's 11am and I have just taken my Pramipexole, normally taken at 7am, and my first Sinemet since 3PM yesterday)
So no Pramipexole (slow release) since 7am tuesday and no sinemet since 3PM yesterday. And I would hardly know it. Bit slow and a bit "tight" walking up the steps to the house, but not bad. Problem is, I did a couple of hours of gloves last night (8pm-10PM)
I probably need to lay off the gloves for 3 days, and then try an 11am with no meds assessment. I did notice it a bit on foot tapping, and I think my touch typing is "sticky" - not really slow but not full flow. So - tests
UPDRS and all the other questionnaires are subjective, and "on meds" but probably worth doing anyway. UPDRS can be downloaded (strictly I think its copyright, but it's there). I think its worth doing it before starting the glove trial, after a month and then after 4 months
I can't find the others - but one was a "falls" questionnaire , an the other was a 1-10 rating of confidence doing a series of tasks
Walking on an icy pavement (yes I know its June!)
Reaching for something on the top shelf,
Standing on a chair to change a light bulb
Getting in and out of a car
Being jostled by crowds in a shopping centre
Using an escalator, with hand free to hold the rail, and with both hands carrying something
and a few others.
The observed off-meds tests were mainly wearing wrist , ankle and waist sensors, and so not really relevant for us (for example, staring at a spot on a wall standing still for 60 seconds with hands loose at your side)
Useful for us were
1 getting up from a kitchen chair with arms crossed, hands on opposite shoulders
2 sitting down with arms crossed to shoulders
3 pull test
4 "Marionette" (puppets) left and right. hold hand as if holding the "T" for a string puppet, and move side to side as if making the puppet dance
5 "indicator" open and shut fist in a "blinking" action
6 "bird talk" tap first finger against thumb - try for biggest movement and highest speed
7 tap the beat with foot. a) heel on floor - tap ball of feet. b) ball of foot on floor, tap heel
8 Walk fairly briskly for 20 metres. Turn and walk back.
4-7 can be a count - how many reps in 20 seconds. You need to be strict with yourself and make big clean actions - not weak small movements
The pull test obviously requires an assistant.
How does that sound for a program?
Sounds like your gloves already had an effect - which may be bad for objective testing, but good for you! 😀
Yes, UPDRS (movementdisorders.org/MDS/M... should provide a useful baseline, before regularly starting with the gloves and then maybe once a month. It may also be useful to include the non-motor parts, in case the gloves have an effect there. Naturally, not all the UPDRS items can be tested by ourselves (e.g., pull test), but then we just have to go without these points, and comparing the ones that remain would still be helpful.
There is some overlap between the UPDRS-III items and some of the tests you list, which I think is fine if these tests can be quantified over a specific (e.g., 20s) interval, similar to this one: parkinsonsmeasurement.org/t...
In that case they should provide more information than the categorical rankings in the UPDRS. Personally, I would focus on items 5-7, which I find hardest to do, and item 8 (over a well defined distance, does not necessarily have to be 20 metres) would also be useful). Probably best to focus on a reasonable set of tests for the moment, rather than try and include too many, which can be demotivating.
I think exercise (which features strongly in the 'success videos') may also play a big role here. The guys probably got an initial boost from the glove use, which they used to increase their activity, which further improved their symptoms (although not necessarily enough to provide an objective change in UPDRS: "No significant effect was found on the blinded UPDRS III scores across the group." ncbi.nlm.nih.gov/pmc/articl... )
Thanks. Your link isn't working. Can you check it please. I think this referred to the study which used higher amplitude stimulation.
Edited the link, should be working now.
You are probably right about the amplitude - but as far as I know this is also the only study to date where they have used a blind rating of symptoms pre-post vCR.
Thanks. Link is good.
This was Peter Tass comment on that study
"In a first-in-human study, five idiopathic PD patients received vCR fingertip stimulation for 4 h per day on 3 consecutive days (Syrkin−Nikolau et al., 2018). Kinematic assessments revealed improved gait and bradykinesia during stimulation and after 1 month poststimulation. 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. As known from CR-DBS, a third of the pulse amplitude used for conventional high-frequency DBS caused significantly greater therapeutic effects (Tass et al., 2012), as CR requires separate stimulation of neuronal subpopulations (Tass, 2003; Tass and Majtanik, 2006). Accordingly, in the present studies, we used smaller vibration peak amplitudes (Adamchic et al., 2014) (0.06–0.10 mm) rather than the higher vibrational amplitude used in the first-in-human vCR study (0.35 mm; Syrkin−Nikolau et al., 2018)."
It's one of the reasons I think it important to try to copy as closely as possible as many as possible of the parameters used by Stanford. It is noteworthy that Pat Riddle, although not blinded (although at times he seems sufficiently muddled to be effectively blind on the trial), had results consistent with Kanwar Bhutani's (although not quite so spectacular)
I think your point about exercise is an interesting one. Maybe vCR "unlocks" the potential of exercise, the benefits of which for PD are universally acknowledged. And so only those who take up appropriate exercise get the full benefit (although, again, Pat Riddle would be the case for the defence on this one)
"It is noteworthy that Pat Riddle, although not blinded (although at times he seems sufficiently muddled to be effectively blind on the trial), had results consistent with Kanwar Bhutani's (although not quite so spectacular)"
Has anyone heard of or reported a person achieving symptom improvement to the level of Kanwar Bhutani (using DIY built or Tass gloves) or at this point would his result be considered an outlier?
It depends a bit what you mean by "similar to kanwar bhutani". According to kanwar he didn't receive quite the benefit legend has made it. He didn't go from wheelchair to walking the corridor in 4 hours.I'm certainly having an interesting time with the gloves and am disappointed nobody else has responded to my question about adjusting medication.
For the 2nd time this year I have been surprised how bad I feel when over medicated. I'm a bit surprised how hair trigger I seem to be in that respect today. I used to be more robust
Many thanks for the follow-up on the stimulation amplitudes. So that preserves hope that lower amplitudes may be working better - although we don't know yet from a proper double-blinded study.
And bolted together. 3 to go, then a performance check before handing over to Mrs WTP
The 6mm thick foam insert is cut from a mouse mat with a craft knife and then a hole punched for the back of the exciter. The foam holds the exciter in position securely and grips the cables. But more importantly it damps noise from the exciter body, and reduces the noise fed to the chassis which would cause vibration to be felt where the housing body touches the skin, when the idea is to confine the nerve stimulation to a small focused site.
The 2 100ohm resistors in parallel are because I had them available. Clearly a single 50 ohm resistor would be neater. The purpose is to protect the 5w exciters from excess current from a 50 w amplifier, and to give a better control of excitation amplitude from the volume pots on the amp
It's been a project. I've been missing using the gloves while we get Mk3 right. Mrs WTP has changed the stitch work yet again and they should be finished before we go on holiday next week so I can start trials in ernest. The compact electronics work and I've done my off medication "before" video
And then Dayton go and introduce 2 new exciters. The smaller one is so tempting because it's tiny. But it's too weedy and too compliant. The larger 3w big brother is very tempting though. I feel a mk 4 glove coming on. When we get back from holiday...
Mk 3 will be fine till then. Good enough to start serious testing
Has anyone experimented with vibrators such as LRA or ERM? About 8 months ago I started making my own. It would have only been a solid month to finish, but stops and limited spare dragged it out until last night. Perhaps it was a bad design choice but I decided to use ERM/LRA motors. The haptic driver IC I'm using won't be able to drive a piezo actuator. My gloves have LRA disks in them. Trying them last night, I realized they weren't very strong. I suspect it's a power supply issue, but it still concerns me. I was thinking a small disc of rough sandpaper in the LRA might improve tactile function. Any thoughts?
Lots. 2 main groups. Followers of PD buzzboard and bhaptics glove users. The trouble is, although everyone got very excited by a couple of stanford videos and treated this as an oven ready done deal, it is nothing like that. There has been a lot of theory and a lot of mathematical models, but very little clinical experience.Sandpaper won't do any harm but won't fix the basic issue with the coin exciters. Which is that they fail the criteria chosen for the clinical experiment so far. That doesn't mean that they don't have an effect. There are reports from both camps of probable benefits although it's all a bit wishy washy.
Personally I have found that acute benefits are clearly better when closer to Tass choices. In particular low amplitude is best.
So far all stanford clinical experiments have used very low amplitude 250hz vibration using a stimulus perpendicular to the skin, with the objective of stimulating as small and focussed a group of fa2 receptors {pacinian corpuscle} as possible. Tass sets out his reasons why.
Lower frequency, higher amplitude, Horizontal {xy} vibration all muddle that by making it probable that other receptors will be fired as well or instead.
Thanks for the help!
While I certainly can be wrong, I was assuming the 250Hz was decided less by what was required and more by what was available. I haven't measured mine, but assume that after autocalibration they are close to the LRA motors datasheet, which is 235Hz. I believe I can adjust the frequency to exactly 250Hz (Will have to check the datasheet for the DRV2605 IC's I used) with lower output . Unlike ERM, LRA will create vibration in the Z axis perpendicular to the skin. Everything else I created exactly as Tass outlined, including jitter, with the exception I can vary just about every parameter. I'm assuming he has ballpark figures and experimentation might lead to better results with at least some people. If things have changed in the past 7 months, I might be out of date as at some point I stopped doing research completely and started my glove design. Do you know the document where he outlines exactly where in the fingertip the tactor is supposed to be attached?
I've not seen an exact location for the fingertip - middle should be fine. He aims to keep it "local" - so wherever it is shouldn't move. He specifies the resting indentation as 0.5mm and the peak to peak amplitude as 0.03mm (see graph posted by me elsewhere on this thread.) His range for "low amplitude" was 30-100 microns. That depends a bit . The mechanics here are a coupled oscillator . The skin has a compliance and mass. The tactor has a compliance and mass. The skin one will vary in all of us - I think this is one area the racing car glove will make configurable. The mass of our tactors, and especially the compliance will be different. Mine is more springy than yours - although fairly stiff. A bit of "personalisation" here seems reasonable. I can measure +-5 microns. Top of his range - is 100 microns peak to peak. So 50 microns rest to peak. That is about 10 o'clock on the volume controls on my amplifier. 8 o'clock - I can't detect they are on. So 8 - 10 o'clock is the range I'm working in. Even ten o'clock is pretty "quiet".
I think "ball park" is reasonable - and it makes sense to configure personally. Try 100 micron peak to peak and compare it with the 250 microns suggested for FA1's at 30-60Hz. 250 micron peak to peak at 250 Hz is VERY LOUD. The 350 microns used in the short study (first human clinical trial of 5 people (Syrkin−Nikolau et al., 2018)) is VERY VERY LOUD! About 9 o'clock on my volume controls is faintly detectable and probably about 50-70 microns peak to peak. I'm assuming that's close enough for jazz
Parkinson's Recovery Project
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