I am wondering what experiences people have with the bHaptics TactGloves in trying out the vibrotactile Coordinated Reset (vCR) paradigm by Peter Tass and colleagues? These gloves (bhaptics.com/shop/tactglove) are an affordable ready-made solution for vibration stimulation so I would expect that they will become more widespread.
How are you using them -- with what stimulation algorithm, intensity and routine? And what are your experiences on potential effects?
On my side, I have been experimenting with them for about two and a half weeks now, using the great scripts by Orbitalcircuits for Win PC and DanTheo for Mac. Daily use is the order of 3 hrs, but I haven't consistently used the same settings. Currently I am settling on stimulating 5 fingers per hand, non-mirrored between hands, with an intensity of 50 in the Win PC script, or 5 fingers with noisy vCR and an intensity of 90 in the Mac app (yes, these intensities feel different🙂). I mostly use the gloves in the evening, more than 4 hrs after the last levodopa medication.
So far it's hard to tell on potential benefits. I do feel more relaxed while using the gloves and recently noticed a slight improvement of smell/taste. But I think it's still early days and I haven't quite found the right stimulation routine yet. And of course it would be a good idea to monitor symptoms more objectively, by UPDRS or other scales and tests.
In any case, many thanks for sharing your experiences.
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Ethin
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You beat me to it, I was just about to start this topic! My gloves will arrive in a few days, I've already uploaded the programs to my laptop and mobile phone, I'm excited.......
Smell/ taste are currently improved, otherwise no reliable changes so far. But I don't think I have found the optimal stimulation routine yet, which should probably involve as much randomization (of the timing and intensity) of the stimuli as possible, to achieve maximum desynchronization. Plus, I am not really managing 4hr's of stimulation / day, more like 2-3 at the moment. It's a challenge to fit such long sessions into a day, but may actually be a crucial part of the treatment.
Hoping you can help me with a question. I just got the bhaptics gloves yesterday. I'm using the script by Orbitalcircuits. Do you use the mirror or randomized setting? And do you know which is more in line with the study? I have no idea what the two different settings are for.
Hi, the more recent paradigms by Tass are using stimulation that is ‘mirrored’ between the fingers of both hands, but if the aim of the treatment is the maximum desynchronization of brain rhythms, I think there are also good reasons for trying different stimulation of the two hands (‘random’). In any case, I hope one of these settings will work for you!
Yes, this is an important next phase of the conversation.
On questions about the BHaptics gloves, they run small when inner & outer gloves are used together. I use only the portion with the electronics and that allows a better fit. If in doubt, size up and go to one layer.
I have been using a home made system before finding the gloves. My build team are experts, so the amplitudes, stim patterns & target frequencies are aligned w the research. Calibrating intensity has been our big question. Now that I also have the gloves, calibration across a group is promising.
Note: My only other medication is carbidopa levodopa. (CL)
I'm finding the following effects:
+ better flexibility in my hands
+better walking (lesser foot drop & shuffle) when ON
+better "connection" in balance (can feel more balance in feet, hips & glutes)
+smoother movement (witnessed by PT) when ON
On the other hand, my OFF periods have become more problematic. Super immobility & dyskinesia have both increased quite a bit.
When it feels like dyskinesia (weaving,involuntary movement) , I've cut my CL back from 2 to 1.5 per dose 3x per day and have also backed off the vibe sessions from 4 hours/day to 1-2. This helped. Dr. Tass mentions dyskinesia as a possible side effect in the Q&A section of his 3/17/23 Twitchy Women presentation (YouTube),
When it feels like I'm cast in cement, it's usually late in my CL dose window or late in the day.
I'm finding that I have a hard time telling if challenges mid day are from too much stimulation or too little medication.
In the same video, Tass recommends no medication w 4 hours/day of vibes. If unable to function w/o medication, then he suggests building more slowly.
The good news is that there is an effect, but there is a lot to learn from each other.
Thanks to everyone for your wisdom! Keep the faith!
Using the OrbitalCircuits at intensity of 80. Use of the glove is inconsistent because I like my earlier prototype (the tactors have a bead to allow for localization). With my DIY prototype, I'm mostly using Noisy VCR 3ON 2OFF 3ON 250Hz w JItter.
I am super interested in getting some of these gloves. I’m a complete novice and know none of the technical details. How does one even start to begin to figure this out? Firstly buy the gloves…then it pairs up with a computer program I’m guessing? Is that separate or comes with the glove? Could my tech savvy son help with this or do I need a computer boffin to install? Any advice appreciated. Thanks
A computer with a Bluetooth connection or a mobile phone is required to operate the gloves. The operating programs can be found on the BHaptics website + Orbitalcircuit's html file.
In particular, I am wondering if anybody is trying to chart their progress more systematically, by clinical scales or some other objective measures? (But of course, any kind of feedback is much appreciated 😀.)
I am still trying to find a (subjective) sweet spot of stimulation intensity and routine with the TactGloves, then should become more systematic about testing.
Yes, but that test actually seems hard to quantify (and I don't have substantial problems with balance to start with). -- Something that tracks automatically on your phone or smart watch would be ideal. I've had a look at the PRO-PD app, but that's also just based on subjective ratings.
My tap test on current medication is normal. I have a pull test like a rugby prop forward. So without reducing medication I am going to tell nothingBut my arms ache holding the steering wheel on the drive back from the UK. My shoulder and neck ache. My hands and feet tingle. My left leg can't get comfortable while driving. And my sense of smell is declining. All since I have not had the opportunity to use the gloves
One day. Unpacking, uploading, 10 minute trial. Everything works fine, the gloves only lose the notebook bluetooth signal in another room, but they work again when they return. Mobile installation today. I start "work" at the weekend.
I think this would be a good timeDay 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.
Having tried intensity 80 as well, I actually went back to 65 and then 50, because I had the feeling that the higher intensities were not 'focal' enough and may have been overstimulating the whole fingers.
The challenge may be to balance the intensity between 'focal' and too weak, in which case the sensation of the stimuli might not register at all. This should also take into account the fact that the frequency of the LRAs in the TactGloves (170Hz) is not quite as optimal for stimulating the Pacinian corpuscles as the one in the TassGloves (250Hz), so one could allow for a somewhat higher stimulation intensity using the TactGloves.
It may be that with 4 hours stimulation you need to cut or substantially reduce your medication. That is I believe Dr Tass normal recommendation. If you can't do that start with 2 hours a day
The gloves stimulate touch sensors in the skin of the fingertip, and cause those sensors to signal to neurons in the brain which causes them to change their relationships with each other. In Parkinsons disease (and other neurological condition) neurons form quite strong clusters who all fire in a synchronised fashion. This is a bit like me trying to play piano whilst wearing my Tass gloves. Instead of being able to play patterns of notes with loose fingers all behaving independently, I in fact just have a block which can play4 notes together. It doesn't make great music
By stimulating the skin cells, with an unsynchronised pattern, which the target neurons in the brain respond to, - by making the neurons in the brain "fire" in the exact same pattern as the ones in the fingers, the neurons all fire independently of each other - desynchronised , and learn to fire that way on their own".
Broadly, if you stimulate the right sensors, at the right level, for the right amount of time, in the right sequence, then in addition to acute symptom relief (you feel better immediately), there is also a Chronic or long-term effect. Unlike conventional Deep Brain Stimulation, you don't need the device switched on to get a benefit. You may still be feeling relief after you have finished and turned the machine off. And you may use the machine for less frequent, shorter periods to obtain the benefit it can provide, as a result of extended regular use.
The gloves Methodology relies on mathematical models of neuron behaviour, which have been to some extent supported by clinical study. It depends particularly on STDP (Spike Timing Dependent Plasticity). In several brain regions STDP causes a strengthening of excitatory synaptic connections if the postsynaptic spike follows shortly after the presynaptic one and a weakening in the opposite case. The objective of the glove therapy is to achieve a weakening of the excitary connections.
But, as I said earlier, it's complicated. Effective desynchronization requires stimulation parameters to be adapted to characteristics of the collective synchronized rhythm, especially its dominant frequency - further complicated by the fact that in Parkinsons disease there is just one dominant frequency.
The Stanford team use stimulus-induced reshaping, and sequence induced reshaping - because there are two distinct contributions to time lags between post and presynaptic spikes. Now it starts to get really scary, but the important point to remember, is that rather than use purely random stimulation, vCR uses a pattern. Key elements are the frequency of the "burst" (250Hz), the length of the burst (100ms) the rise time of the burst, the frequency of the CR - and all those other parameters that get discussed on the DIY glove threads. Critically, those famous patterns, times, On-off sequences, frequencies etc are specific to a particular approach to de-synchronising
The PD problem it is narrowly focussing on fixing, is a behaviour of synchronised oscillatory firing in the basal ganglia. To desynchronise the neuronal population CRS optimally employs phase resetting stimuli delivered to 3 or more sub-populations (4 finger tips of one hand, in all the experiments usually refered to in DIY glove discussions, but 5 has also been tested by Peter Tass.)
The finger tips have a very high density of "mechanoreceptive units" (vibration sensing structures)
There are 4 main types of "sensor" in the skin of an adult Human - just under half are slow acting (SA) and just over half are fast acting (FA). FA units respond to moving stimuli as well as the onset and removal of a stimulus. SA units respond with a sustained discharge. Type 1 units (both SA and FA) have small , well defined fields of sensitivity. Type 2 units (both SA and FA) are wider with less defined borders. FA1's are called RA (rapidly adapting) and FA2 are called PC (Pacinian corpuscles) {there - I've arrived at the subject Ethin and I were discussing - Pacinian corpuscles!}
The 4 different types of mechanoreceptors respond best to different types of stimulus. Tass and his team developed different vCRS variants aimed at getting a strong response from just one type of mechanoreceptor and therefore corresponding thalamic neurons.
SA1 have a rather irregular sustained discharge, and respond to edge stimuli (so the bHaptics glove will stimulate these). SA2 discharge in a regular manner, but often make a spontaneous discharge in the absence of tactile stimulation (ie its a gun that goes off in your pocket) and respond to stretch stimuli (so again, fired by the bHaptics glove or buzzboard)
FA1 and FA2 respond to being squashed "vibratory sinusoidal perpendicular skin displacements" (hence the sine wave we are using to create the "burst" and the actuators which move a small diameter rod in and out of the skin) FA1 respond to 30-60Hz oscillations. FA2's respond to 100 to 300 Hz, but really 250 Hz is optimal. The 170Hz of the bHaptics is a bit lost in no-mans land. And anyway - since it doesn't poke in and out of the receptor at right angles, it isn't stimulating FA receptors regardless of frequency
Ignoring the other options conceived by Tass and co for other mechanoreceptor stimulation, but not used in "The Stanford glove" . The FA2 (the PC Pacinian Corpuscle) is the focussed accurate trigger to use. It responds best at very low amplitude (0.03mm - 30 microns). FA2's optimal is 0.25mm - 250 microns
To give an idea of these frequencies - 250Hz is pretty much a B below middle C - so the white key 2 to the left of the pair of black keys next to the lock on a piano, or 2nd fret 5th string on a guitar. 175Hz (bHaptics) is the F to the left of those on a piano (white key immediately left of the 3 black keys) or 1st fret 6th string on a guitar. (40-60 Hz - well 50 hz is a G - go to the next bank of 3 black keys and its the white key between the left and middle black keys. At this point my guitar has given up, and I'd have to get the bass guitar out.
I think this is already too long. Bottom line is there are 4 types of mechanoreceptor you might stimulate with a vibrating glove, but they are all different, and the "Tass / Stanford" glove focussed on the PC FA2 - and that needs a vibration that is in and out , squashing the skin, preferably at 250Hz, and very low amplitude - and the bHaptics just can't offer that. Worse, stimulating other receptors , using the Tass patterns, when they are not as precise and focussed as the PC's , might lead to phase-coupled reinforcement of the synchronised networks, instead of desynchronising them ( so accelerating PD symptoms instead of relieving them)
Thank you for the concise explanation WinnieThePoo, and congratulations on your daughter's wedding! I've been following your posts on the Tass gloves and appreciate your skepticism on some of the DIY approaches and your scientific rigor to try and reproduce the Tass protocol. Also, I am working with Pieter's group to try and reproduce the glove as accurately as possible (we'd love to have you join us as we have a solid group of engineers working on a prototype with the google VHP to allow for stimulating the actuators while simultaneously measuring the force on the actuators). My father has Parkinson's and I started him with the PDBuzzboard, then recently upgraded him to the bHaptics gloves, and plan to "upgrade" again to the voice-coil actuators that give a true perpendicular to the skin actuation. But heuristically I think the gloves are helping him based on his improved walking and swimming, and certainly one can argue that a portion of the vibration is perpendicular to the skin (mathematically, the dot product of the oscillatory motion with the vector perpendicular to the skin has some amplitude). I'm curious about your argument that the non-normal to the skin surface motion may cause phase-coupled reinforcement--has that been published or is it speculation on your part? I certainly don't want to do anything to worsen my father's condition, and I've always approached these DIY gloves as being "non-invasive" and as such harmless with the worst-case scenario being a time waste (although they often do give a positive meditative relaxation response consistent with Tass' so-called "side effects" even if that is the case).
BTW, in the last "No Silver Bullet" talk, Tass mentioned that the frequency is not very important, but the pattern is. He drops little bread crumbs like this that could help us glean some of the more recent research in the "race car gloves" (I've taken extensive notes I'm happy to share with you).
Thanks. The wedding was lovely. And I appreciate the opportunity for a rational discussion with others who are experimenting in this field. It has become confused and unwieldy on HU. I did take a few looks at Pieters site, but nothing much seemed to be happening. I responded to a request for project update information, but the spreadsheet didn't seem to have been updated. I went to post some build information but couldn't work out how to post pictures. I have, to be fair, not looked that hard because I have been busy with the day job.
I'm wearing the gloves now - and thumb typing is hard! I'm not sure about "joining the project". Patent enforcement is one area some of my friends have direct experience. Dr Tass is a nice guy, but I think Stanfords legal department will be in the driving seat. And they have many years of expensive research they will be keen to get a funding contribution for. It is of course a bit of a pigs breakfast, and I suspect Dr Tass has been given some new guidelines about disclosure recently. Of course, EA looks to be the big battleground, but they may pursue other organised breaches too, if to fail to do so would weaken their revenue generating potential. It may also be that the racing glove will be so different as the only approved device that "old glove" stuff will be ignored. I would exercise some caution though.
But I'm happy to have another look at f2heal and talk about what I am doing. Mostly, that's KISS. There is a lot of talk of new patterns, single glove, and of course the racing car. But as a starting point I want to try and use what Kanwar Bhuttani used. Ok - the jitter variant from their massive 6 participant study. And then maybe move on from there .
And tbh , I think I am getting close. It's been interesting experiencing the gloves over the last few weeks, and whilst acknowledging the "n=1", lack of placebo control, fluctuating underlying condition, change in the recent weather etc, I'm learning a few things.
And I'm not sure you need a laser to measure amplitude. if 170Hz is nearly an octave different to 250Hz, 30 microns is similarly a playing field away from 250 to 400 microns.
Regarding "doing harm" - I think it most likely the gloves are safe. It's not so much phase-locking and alternative skin vibrations as "noise". "Noise" can both degrade efficacy and lead to a wrong result. Specifically, I was referencing my earlier comment with respect to "In several brain regions STDP causes a strengthening of excitatory synaptic connections if the postsynaptic spike follows shortly after the presynaptic one and a weakening in the opposite case."
"As discussed in Knoblauch et al. (2012), Kromer and Tass (2020), Lubenov and Siapas (2008), distributions that were broad compared to the axonal delays (3 ms in our model) led to synaptic potentiation, as presynaptic spikes often arrived before postsynaptic ones. This led to the strengthening of intrapopulation synapses in our neuronal network model (Figure 11). For a comparison with previously employed sensory model stimuli, we refer to Supplementary Discussion 3.1."
As I wrote elsewhere on this rather chaotic HU site, I am still using the bHaptics TactGloves (although less extensively lately, due to lots of other things going on right now.) I will have to restart systematic evaluation of their potential effects because of adjusting my medication at the moment, so need to wait until I am on a stable level again (likely in early June).
While using them, I've thought they provide a nice and relaxing effect. In terms of more long-term benefits, I noticed an improved sense of smell, which furtunately is slowly rebuilding at the moment after a Corona infection some weeks ago.
The upshot: I'm still using the TactGloves with the sense that they are doing me some good, although I cannot demonstrate that objectively due to manifold interferences of LIFE. Still, it would be very good to hear about the experiences of other TactGlove users. I am sure there are several more out there.
Thanks! Good luck! I have now started to expel the desulfovibrio bacteria from my intestines, with a 10-day course of antibiotics! I'm not an alcoholic, but if it's not possible, I'd really like to drink a beer!😂😂😂
OFF: I know exactly!!! That's why I wrote that it can't be!!!
ON: I ask that those of you who write about bHaptics experiences also enter the parameters right away, so that you don't have to ask for them separately!
WinnieThePoo was responding to my inquiry: I can tell you my father's experience with the bHaptics has been positive. However, WinnieThePoo brings up some very valid points based on the published literature that the bHaptics frequency and "noisy" vibration amplitude in all directions rather than just perpendicular to the skin's surface may severely be reducing or preventing its efficacy.
My father is using 80% intensity, 5 fingers, non-mirrored (he seems to think higher amplitudes are helping). Orbitalcircuits PC version. Note that Dan's mac version is a factor of 2 lower in intensity.
Thanks. Yes, I've also come to think that higher intensities are more helpful (in line with the fact that stimulation of the Pacinian corpuscles at 170Hz will require about twice the intensity as for 250Hz in order to achieve the same subjective effect). Unfortunately, the PC version does not work for me at the moment due to a recent update of the bHaptics player (anybody experiencing the same problem?)
So I make do with the Mac version, which is indeed a bit low on the subjective intensity, even for 100%. --- Looking forward to when bHaptics will have fixed the bluetooth issue and the app can run on the iphone - will probably take the gloves wherever I go 😀.
Dan Teoh wrote the mac version, and he intentionally lowered the intensity by 50% such that 100% intensity on the mac version if 50% of Orbitalcircuits PC version. He is very kind and responsive and it would be a single line to edit in his code to bring the intensities to the same levels. I'd prefer that as well since we can always dial it down, but hitting a limit at 100% which is much lower than what the gloves allow is not ideal.
Perhaps it will happen when bHaptics have resolved the current bluetooth issue and Dan Teohs version for iphone becomes available. In any case, kudos to Dan and Orbitalcircuits for their efforts and support!
See my trampoline analogy on Marc Andersons thread. There is no frequency and no intensity at which Pacinian corpuscles will respond to vibrations which are lateral stretching instead of perpendicular squashing But turning up the wick at 170hz will help the sa1 and sa2 to give you a buzz
“There is no frequency and no intensity at which Pacinian corpuscles will respond to vibrations which are lateral stretching instead of perpendicular squashing“
Dear Winnie, I am not sure if this is so categorically true. The LRAs in the TactGloves are providing vertical as well as lateral vibration, and at least subjectively, it feels as if they are stimulating similar receptive fields at the fingertips as the C-MF tractors. nonetheless, it’s clear that perpendicular tactors are closer to the original Tass design, so it’s safer/ more promising to go with that.
Yes, you may well be right. I am only interpreting a few bits I've read. The problem is "its complicated" . So, if the coin exciters also produce a perpendicular motion capable of firing the PC's it is at the expense of a heck of a lot of noise from other sensors firing.
We may get too focussed on PC's and the other technical aspects. I find them interesting, and somewhat helpful in glove design and use, but mostly I am focussed on copying the solution which caught my attention - namely Kanwar Bhuttani's glove, without theorising about alternatives which might be nearly as good, or better. It may well be this is not the best version of vCR that can be implemented. One day there may be a version which uses just one hand, for an hour a week, is 3 times more effective, and free on the NHS - but in the meantime, given I have organised myself to be able to put in 4 hours a day for 4 months, I'll take the Tass original, as close as I can copy it, and hope to get the benefit now. Because "one day" may be 6 months, or a year, or 2 years, or the Parkinsons favourite - 5 years away.
It was far from the only option Peter Tass contemplated when moving from the computational to the clinical - but it was THE ONE he chose and used, and, to date all his clinical testing has used. He also considered low frequency (50-60Hz) burst stimulation (and a combination of high and low frequency - but that was some 50Hz FA1 bursts and some 250Hz FA2 bursts - not an "averaged" 170Hz). And finally he considered smooth vCR (see illustration below?)
Whole body vibration plates, Charcot train carriages, and other glove variants can all provide some beneficial experiences. But they are unlikely to replicate the more spectacular results shown by Peter Tass and Stanford, and news features, that attracted my interest
It is complicated. And taking one aspect in isolation (like whether PC's are fired or not) probably isn't helpful. Probably the coin exciter high amplitude does more than get a few fires out of PC's - it generates a whole orchestra of noise at the same time, and maybe runs the PC's if it activates them at all too loud.
This was Peter Tass evaluation of this point
"The main advantage of burst-like vCRS at higher intra-burst frequencies, e.g. 250 Hz, and low peak to peak vibration amplitudes may be the selective activation of FA II units [13]. A downside of this approach may be the large receptive field size of FA II units [17-18], which might hinder selective stimulation of separate subpopulations, in particular, in neurological conditions, such as Parkinson’s disease associated with enlarged receptive field size [20]. 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."
(my emphasis)
My point is - "it's complicated" - and trying to take just one aspect in isolation misses the point. In the circumstances, copying what has been shown to work, is the option I prefer for me.
In that regard, it is interesting that the DIY maker in the first video of Marc's post has been using a Buzzbox / bHaptics style glove for a bit over a year, and getting great benefit from it. But that appears to be some agreable acute effects, and not the permanent, progressive reset of the Tass CR model. He is still using it as much as possible as often as possible.
I am looking forward to using my gloves as little as possible, as infrequently as possible - and maintaining the benefit none-the-less.
Actually, I'm particularly looking forward to using the Mk4 glove instead of the Mk3 and should focus on getting it finished, or I'll have done the 4 months before the Mk4 ever gets used!
I am with you on all these point (hence will also give the C-MFs another shot, just need to find the time to learn how to program the controller). But I would still encourage everyone using the TactGloves to continue doing so if they do not have a better alternative available at the moment, and try and chart any potential benefits as objectively as possible. After all, _if_ the TactGloves have some benefit, even at a lower level than proper Tass gloves, they are a readily available, very practical and affordable option.
No HopefulMan,sorry but the published literature says a different thing and I quote:
"Results
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.
Conclusions
In these feasibility studies of eight PD patients, regular vCR and noisy vCR were well tolerated, produced no side effects, and delivered sustained cumulative improvement of motor performance, which is congruent with our computational findings. In study 1, reduction of high beta band power over the sensorimotor cortex may suggest noisy vCR is effectively modulating the beta band at the cortical level, which may play a role in improved motor ability. These encouraging therapeutic results enable us to properly plan a proof-of-concept study.
As you can see, he doesn't talk about side effects like: " ... accelerating PD symptoms instead of relieving them", nor about noise like, "It's not so much phase-locking and alternative skin vibrations as "noise". "Noise" can both degrade efficacy and lead to a wrong result.", but talk about Noisy vCR that is another thing.( Figure 1) and there is no technical definition of “noise”like this that you report. I quote :”the bHaptics frequency and "noisy" vibration amplitude in all directions rather than just perpendicular to the skin's surface may severely be reducing or preventing its efficacy.”
Just read the whole text.
Congratulations for the results on your father! What matters is the result!
Ethin we are three or four people who have read and researched Peter Tass beyond the electronic part (maybe two who understood it at 50%), so there is no need to telegraph, and first of all the definitions of what we are talking about and context (Temporal jitter -spatial noise), then the results ( good-bad).
Gio, Even making a pizza 🍕 needs some sort of clarity and competence with correct ingredients, otherwise it turns to paella. I don’t understand how someone is trying to make a sophisticated gadget with hundreds of “I think” or “if” . And the funny part is their confidence!
A gadget in which still Stanford universally isnot sure about it . I hope their gloves will not turn into paella 🥘
Then I'll run again: Does anyone have new experience with bHaptics gloves? (I am not asking for "principle" explanations, I am interested in the experience of using bHaptics gloves!)
I wanted to share my dad's experience with the bhaptics gloves. He started doing the glove therapy the end of May. My dad was recently diagnosed with Parkinson's and essential tremor in the middle of May this year (just a week or two before the glove therapy). Although I did suspect he had Parkinson's since August of last year. He developed a tremor in his right hand. That was around 2 years ago. It was a small, barely noticeable tremor that became more severe as time went on. I also noticed his face was more masked and he wasn't as expressive. Other symptoms include: no arm swinging and slowness. He is also not on any medication, since he's recently diagnosed he wanted to try the glove therapy before starting any medication.
We've had a very positive experience thus far. My dad has been doing the therapy diligently, 2 x a day for 2 hours. He only missed one session due to technical difficulties. He didn't notice any improvements at first. I would ask him every day the first couple of weeks because I was so hopeful, but he said he didn't notice anything. The first thing we noticed was an improvement in his blood pressure. My dad has high blood pressure, he's not on any medication, but he has always monitored his blood pressure (about twice a week). I read that some people were experiencing improvements with blood pressure and told my dad to watch his blood pressure stats because the glove therapy might help. Before starting the glove therapy, his blood pressure was around 145/95 with a heart rate of 90-100. The numbers would also jump around, and weren't stable. (The systolic pressure could be 150 or 130). Well two weeks in and his blood pressure numbers were improving, they would be around 125/85 with a heart rate of 80. We thought this might be a fluke because his blood pressure numbers weren't stable and once or twice a month he'd have a normal reading. But as time went on, the numbers were more consistent and got better and better. Now his blood pressure stats are stable and consistently around 120/80 with a heart rate of 75.
His mood and outlook are improved, his face is more expressive too. He's animated and laughing more, and more positive. He's also more relaxed and calm.
His tremor symptoms have been more stubborn, the first month he didn't notice any difference with the tremor. 5 weeks in, and I noticed when he was relaxed and watching tv his tremor would be barely noticeable. But when he was moving, or a little bit stressed, or thinking about work, his tremor would be the same as before the glove therapy. In the last 2 weeks, his tremor has gotten a lot better, when he's calm and relaxed it is barely noticeable, and before the glove therapy, even when calm he'd have a pretty intense tremor. His tremor when moving or stressed, or doing any kind of critical thinking is still there, but less severe. He told me that his tremor when writing and shaving is improved. He's done the glove therapy for a little over two months, so I'm hopeful the tremor will continue to get better.
Prior to glove therapy, both of his arms didn't swing when walking. Now, his arm with the tremor still doesn't swing, but his other arm is swinging.
The improvements have been substantial, and I'm optimistic that they'll continue to improve over time. Wanted to say thank you to you all for creating a diy glove and sharing your experiences!
Thank you very much for sharing this positive experience, that’s very encouraging! — Are you using the Win script by Orbitalcircuits or the one for Mac by DanTeoh? In any case, good luck that your dad will continue to do well.
Hi Dani, thank you so much for sharing. Any udpates on your dad's results using the bhaptic gloves since 2 months ago? I'm thinking of buying them for my mom.
Sorry it took me so long to respond. He's still doing good, even better than he was doing when I wrote that post. When he was 3 months in with the glove therapy, he hit a peak where he barely had a resting tremor (however, he still had an action tremor). A couple weeks after that, I noticed the tremor was getting worse. I assumed that he was getting reverse symptoms from too much glove therapy. He shortened the amount of time he was doing the therapy. We tested 2x a week, every other day, but for now he is doing best at daily therapy only once a day (2 hrs total). After shortening the amount of time, the tremor got better. His symptoms are improved, not perfect but definitely improved. We've done the tap test (index finger and thumb), foot tap test, and watching him walk (to look at arm swing, gait, etc.). He's improved on all those things. Last year, (before the glove therapy) he couldn't tap his left foot, it would move like a couple millimeters, now he's tapping them and doing the full range of motion. Blood pressure is still stable. The tremor is still his most frustrating symptom. Overall he says that it's 70-80% better, and on a bad day about 50% better. Definitely recommend the gloves. All the best to you and your mom.
Hi Dani, that's wonderful your Dad has seen such an improvement. Thank you both for sharing! I also appreciate the details you provided so my Mom might follow a similar protocol to your Dad's. I ordered the bhaptics gloves two days ago so she will be getting started soon!
My dad isn't on any medication. He was diagnosed with Parkinson's on May 15th this year and started glove therapy May 23rd. I suspected he had Parkinson's in August 2022. We had to wait a long time for the doctor appointments and neurologist referral, so I learned about the finger-thumb tap test, foot tap test, arm swing, etc. I also watched youtube videos to see how doctors clinically diagnose Parkinson's. When he did all those tests, it looked exactly like the videos. I then started to look into treatment options and learned about medication, supplements, etc. I also learned about the glove therapy. Which is how he started the glove therapy so soon after the diagnosis. When he was officially diagnosed in May, the doctor gave him Carbidopa / Levodopa. My dad wanted to try the glove therapy without medication. That way he could see what was working. He's still not on any medication.
I was reading about your new gloves. Do you notice any difference between the new gloves and the bhaptics? Are they similar or do you feel better on one over the other?
Thank you for the clarification; I had missed the point that your dad hadn't been on medication. It's interesting to hear that the gloves also help in such cases of early Parkinson's and without medication. In any case, I am really impressed by how much you are on top of things -- sounds like your dad has his personal MDS there 😀👍.
As for the difference between the bHpatic TactGloves and a set made with C-MF tactors (which is very similar to what the original Tass gloves use). I wish I could offer a clear statement, but at this point I am not yet confident about any differences.
I am wearing the C-MF gloves for about 3.5 hrs/ day at the moment. Clearly, longer is better, but there are also many side constraints of Life (and the CMFs are not as practical as the TactGloves which requires added motivation for the sessions). Also, I am still adjusting the intensity, until the stimulation is barely noticable. So I am not entirely sure if I am doing them properly yet.
I think that both kinds of gloves have a similar immediate effect, relaxing and invigorating at the same time, so I can move better and the dystonia in my arm and shoulder is reduced. But it's the longer-term effects that everyone is interested in and here I am not yet sure -- but I will keep you posted.
A brief update on my glove experience. It's just a snapshot, not an objective evaluation, for a number of reasons: I have been using the gloves with the C-MF tactors for a month now, although with varying settings (particularly wrt intensity, also mirrored vs non-mirrored between hands), and I am not sure that I have found the perfect parameters yet.
I strive to wear the gloves for 4hrs/ day, which I rarely achieve, because of many other things also happening in Life. But I do manage 3 - 3.5hrs quite frequently. About 3hrs appears to be the 'magical' threshold for me, after which the relaxing acute effects kick in fully.
Before that, I had used the bHaptics TactGloves (for about 6 months), also with a variety of different settings. In fact, I still use the TactGloves occassionally, mostly 'on the road', as they are more practical and portable than the C-MF set. So this is to say, my use of vibration gloves hasn't been as consistent as would be necessary for an objective observation. Plus, in addtion to taking regular doses of C/L (3x2x25/100 a day), I also started on other medications in recent months, most notably Bydureon (exenatide).
I had an UPDRS taken at the start of July, and another one this week. Because I felt quite bad recently (due to the polyneuropathy flaring up and the ongoing struggle with dystonia that affects my walking in an unpredictable but very frustrating way), I had low hopes. As it turned out, the OFF-UPDRS was scored about 20% lower than in July. The neurologist also noted a general improvement and particularly a reduction in rigor.
Bearing in mind that UPDRS ratings are not fully objective either, the best I can say is that this reduction may be atttributed to the gloves (TactGloves+TassGloves) + exenatide + X. At least it's encouraging enough for me to continue using both, gloves and exenatide, even though my biggest wish, to have better control over the dystonia, has not been fulfilled so far. And I have not yet been able to reduce C/L either.
Hi Ethin, It remains difficult to determine the exact source of any potential improvement. In your update, you didn't mention your experiment with propionate, which should have shown some results by now. As you know, it's an n = 2 study, as I have been working on it nos for about three months. The reduction in PD symptoms continues, but it's hard to say whether it's due to the extended summer in Spain or if propionate also contributes to it. However, for peripheral neuropathy (PN), propionate seems to be an effective treatment. To date, there is no known medication or supplement that can promote recovery in advanced stages of PN, but it appears to be happening with propionate. There is less pain and increased muscle strength in my feet and legs. Or perhaps it's also due to the infrared radiation from uninterrupted sunlight and barefoot training along the beach? Who can say for sure…
You are right, Esperanto, I did not mention the proprionate. The whole story is a bit more complicated.
I do continue to take proprionate, 2 x 500mg/ day, with the hope that it may countertact the PN as suggested by the animal studies in Bochum (I think the potential for PD is more tentative). However, about 4 weeks ago I experienced a marked worsening of the PNP in both legs, on the sensory as well as motor side. My feet felt like being cast in concrete. In desperation, I underwent a cortisone pulse therapy, in case the worsening had something to do with lingering inflammation. The effects of the therapy remain to be seen, but the cortisone had a terrible impact on my sleep during that last weeks and, directly or indirectly, also made the PD symptoms worse. It's been an exhausting time. Even more surprising that the UPDRS assessment went so well last week.
In any case, I am really happy to hear that the proprionate seems be working for your, by itself or in combination with the other good things you do. I have a feeling that, if I had been under Spain's sun and not in dark northern Europe, the flare up may not have happened. So I am looking into taking a southern vacation after Christmas, to take your prescription of sunlight & barefoot walking. 🙂
It's incredible that I'm now sitting in the snow at -6°C. I'm sure the Wim Hof Method doesn't work for me... So, I'll try to find the sun as much as possible!
The propionate effect story remains unclear. The improvement of peripheral neuropathy had already started during my "summertime" period and was evident after an EMG test. The neurologist was surprised but wanted to see me again in a year, so I can't objectively confirm if the improvement in PN has continued.
But still, is it the supplementation with P5P that had almost immediate effects on PD symptoms but takes longer for nerve regeneration in PN? Is it the lifestyle change with the MIND diet and lots of exercise, which naturally takes some time to show effects? Or is it the outdoor activities with the influence of infrared? In any case, propionate seems to be harmless.
It's good news that you've had success with the PD approach overall, but it seems that's not the case for PN. Have you considered getting an objective EMG done? PN also seems to be a priority for you, as its problems have a negative impact on the PD situation. It's challenging... But for now, find the ☀️ first!!!
Thank you. In fact, I had an EMG done this morning (not sure it was objective:), which indeed showed a slight worsening compared to the last one in August, confirming my subjective impression. As a consequence, I am considering going back on IVIG, which I had been on for suspected CIDP until May. It is not quite sure how the immunoglobulins work, but progression of the PN had been relatively slow while I got them. So, in the absence of any real alternatives, I may just go back to that (while also sticking to the propionate, just in case).
Ultimately, I am not convinced that I really have CIDP. The fact that the PN and PD developed simultaneously lets me suspect that there is a common reason for both, maybe due to cellular metabolism damaged by combination of genetic and environmental causes. But even if I can figure out what this common cause is, it's unlikely that this will result in viable treatment options. So I think in the end it just boils down to common sense and precisely your treatment program of exercise, a healthy diet, not too much stress, and definitely plenty of sunshine*.
Regarding your PN symptoms, this seems like quite a disappointment. I wouldn't give up on the "feeling" that there must be a connection between your PD and PN just yet. It took more than a year for my neurologist to finally admit that the cause was a PD-related vitamin B6 deficiency.
Although you didn't have a deficiency at the time, your B6 level was indeed quite low. Have you further investigated that result?
Thanks to your suggestions I’d been following up on the B6, and the latest value in August actually was in the normal range. I will learn what the current values are in a couple of days, but as I have been supplementing B vitamins, I don’t really expect to see a deficiency. In any case, I will post any new insights.
Do you have continuing feedback.? Ia m about to build gloves (attempt to). But if your solution works it would be wonderful. Do you or anyone else have info.?
I have been regularly using bHaptics TactGloves since early summer 2023, and Tass-like gloves (with 250 Hz LRAs) since early November, averaging 3+ hours a day. (I still use the TactGloves occassionally, eg, when I am travelling, because they are more mobile/practical.)
The positive effects started with the TactGloves and continue with the TassGloves: overall improved mobility, greater ease of movements, reduced dystonia in the foot and leg. Better concentration and overall frame of mind. For what it's worth, my UPDRS-III was scored 20% lower in late November than at the start of July. At the same time, a moderate reduction in medication (6-7 C/L 25/100 --> 5 C/L). I have the feeling that the improvements are still ongoing, so I'll continue with the current regime of 3- 4 hrs of glove time /day.
My (subjective) advice: if you have a chance to build proper DIY gloves ('proper' means with tactors that run at 250 Hz and are spatially and temporally precise) , I would go with that, because that is more similar to the original Tass design that has proven successful in several documented cases. If that is not a practical option, you could give the TactGloves a try and see if they're doing something for you. Good luck!
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My gloves will arrive in a few days, I've already uploaded the programs to my laptop and mobile phone, I'm excited.......
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