Starting a new thread here . A few of us have been iterating on a solution using the bHaptics TactGloves for several months. We were held up by a firmware update from bHaptics, but they've finally updated them. The app is now fully functional, and we have folks using it almost every day for several hours. The average session is 102 minutes!
Please reach out if you're interested in trying out the app for yourself. You will need to purchase a set of the bHaptics gloves yourself, but we can onboard a lot of people onto TestFlight to try the app out once you've got the gloves.
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DanTeoh
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Correct. With the gloves, the app drives their vibrations in the same manner as the Tass ones. The core difference is Tass gloves vibrate at around 240hz, these are around 170hz.
Oh the differences are MUCH more than that. The Bihaptics are not remotely similar to the Tass gloves. They use eccentric rotating mass (ERM) devices**which are completely alien to the Tass concept, which relies on precise timings
**edit - they use sealed lra devices, not erms, which are completely alien to the Tass concept.
To enable precise signaling from Pacinian corpuscles in the finger, to neurons in the brain, to get a post-synaptic stimulus, without noise from other slower responding FA2 mechano-receptors, Dr Tass specifies a vibration at 250Hz in a motion perpendicular to the skin, with an initial point skin compression of 0.5mm, which cannot be achieved by a coin device. He also specifies
"Reasonable technical requirements for the vibrotactile actuator for vCR would therefore be an
operating frequency of approximately 250 Hz, a displacement output that exceeds 40 dB (Re 1μm)
above the threshold for sensitivity for the fingers (to achieve salience), and a rise time of less than 2ms"
BHaptics do not provide specs for their lra's , but the best coin device I could find is vybronics.com/coin-vibratio... with a rise time of 10ms and a fall time of 40ms.
The precise timing , critical to a few milliseconds, which the patterns depend on, are achieved by using the "squashing" response of Pacinian Corpuscles.
Winnie is right, of course. The bhaptics are in many ways quite different from the original Tass gloves, and are not at all a 'commercial duplication' (and not intended to be -- they are made for gaming). Nonetheless, perhaps strangely, some PWP have reported subjective benefits from using them.
I have used them for the last couple of months, now wearing them for 3+ hrs/day. During this period I have experienced substantially improved energy which had a positive impact on many other aspects of my life (feeling able to exercise, improved mental clarity, etc.). Is this due to using the gloves? - I have no idea at all, because during the same period I also had to make substantial dose adjustments to my C/L and started taking additional medication, exenatide among them. So I only have a hunch, but no proof whatsoever, that wearing the gloves had a positive role in the improvements I experienced. More generally, there has been no objective evaluation of the effects of the bhaptics (and actually also little evaluation of the benefits of the original Tass gloves).
So my completely subjective and personal opinion is that, if you have a chance to built DIY gloves that are close to the original, you should definitly go down that route (and the extensive instructions given by Winnie are a great starter for that). But if you are unable to do so, it may be better to use the bhaptics rather than use no gloves at all. Because a 'commercial product' ist still several years down the line. But please remember, it's impossible to make any claims on the efficacy at this point. Nonetheless, it would be interesting to read about the subjective experience of other bhaptics users here.
i have both a vibration plate machine (i don't use that anymore) and two of these vibrators in my bed ... which i used nightly 6 tp 10 hours ... I drape each arm over one of these and they (temporarily) mask my internal tremors ... and definitely help when I'm off of them
Actually just one more verse (to stay in the hymn metaphor): using the bHaptics is indeed quite likely to be less effective than using original Tass gloves, or something close to them - but may still be better than using no gloves at all.
I am reminded of Douglas Adam's Hitchhiker's Guide to the Galaxy, where Arthur Dent comes to deal with the Nutri-Matics drinks dispenser which "produces a liquid which is almost, but not quite, entirely unlike tea." A true Englishman, Arthur is so enraged by the poor offering that he throws his cup back at the machine -- but really, what else can you drink if you urgently need a cuppa, but cannot get the proper stuff (because you are lost in space and the Vogons have destroyed Earth to make room for a hyperspace bypass..)?
So, for many PWP who cannot get into trials of the original Tass gloves or unable to go down the route of producing close-to-the-original DIY gloves, the bhaptics may at least offer them one option for trying out vibrotactile stimulation, and a very practical and affordable one at that, even though the effect may be "almost, but not quite, entirely unlike" the real thing.
I was watching Japan v Samoa last night, wearing the gloves. Probably not the best place to respond with a couple of Douglas Adams wisecracks. But probably our entry in the guide "mostly harmless" is the best you can say for the idea.
The problem is , whilst you and I have covered this in great detail, most people responding do not understand the subject, and do not understand that the bHaptics are equivalent to whole body vibration plates and NOT equivalent to vibrotactile Coordinated reset.
For the record, it's worth a quote from the man that has got us all excited
This is referring to CR - both Deep Brain stimulation delivered and vibrotactile delivered
" Coordinated reset (CR) stimulation aims at long-lasting desynchronization by remodeling synaptic connectivity using specific spatiotemporal stimulus patterns (Tass and Majtanik, 2006). Computationally, it was shown that CR-induced desynchronization may reduce plastic synaptic weights, in this way causing long-lasting desynchronization and ultimately moving neural networks from stable synchronized and strong synaptically coupled states to stable desynchronized and weakly coupled states (Tass and Majtanik, 2006; Kromer and Tass, 2020). To this end, CR employs spike timing-dependent plasticity (STDP), a basic learning mechanism that modifies the strength of synapses according to the relative timing of their corresponding neurons’ presynaptic and postsynaptic spikes or bursts "
It doesn't just make you feel nice for a while - that's vibration plates - but you can do CR with vibrations - he says so
"In this study, we administer a novel noninvasive CR technique called vibrotactile CR (vCR) fingertip stimulation...
Furthermore, neuronal activity is phase locked to skin indentation oscillations (Weiss et al., 2009; Harvey et al., 2013), which allows one to modify collective neuronal discharge patterns by controlling the timing of discharges of stimulated subpopulations"
There are other benefits and uses of vibrations WHICH ARE NOT coordinated reset - he says so
"Other vibratory stimulation techniques include whole-body vibration (WBV). WBV has been found to improve performance during upper body exercise and to reduce motor symptoms in PD patients ..."
It's OK if you understand you are using another vibration therapy which can provide some mild temporary relief. It's not OK if you are deceived into believing that is equivalent to the therapy Kanwar Bhuttani uses.
No, 'just vibration' is clearly not vCR, and vCR is an extensive and consistent computational framework for explaining desynchronization of oscillation patterns associated with pathologies by changing synaptic weights. I just hope the brain knows about this framework - I mean to say, so far we have relatively little proof that vCR works as advertized outside of the computational simulations. Just a before - after EEG of sensory-motor cortex of a few subjects at the group level and the behavioral reports, but not much that would pass as objective validation. So it's clearly important that the parameters of vCR are systematically studied in larger cohorts to see which of them actually work (and how important the exact timing, etc. are ).
(from the pdf Data-sheet 1) My emphasis in bold underlined - my comments in italics
"Mechanical energy can produce shearing forces in the skin that dissipate with a distance from the source according to an inverse square law (Cholewiak and Collins 1991). However, vibration can also generate traveling waves of energy across the surface of the skin (Franke, 1951) and these can also be transmitted over large distances (Cholewiak and Collins 1991). For example, a stimulus on the finger can excite a greater number of distant receptors unless a damper, such as a static ring, is used around the stimulus site to damp surface waves.(like using a BHaptic glove)
Different types of sensory nerve endings are located within the skin; shallow receptors in the dermisinclude Merkel’s disks, Ruffini cylinders, and Meissner’s corpuscles, while deeper receptors include Pacinian corpuscles. The interaction between the mechanical properties of the skin and tactile sensory perception can be modeled (Phillips and Johnson, 1981). The displacement of a surface against the skin can be used to define the stimulus together with the contact characteristics and the dynamics. For vibrotactile excitation, a relatively simple relationship between the volume displacement and sensory stimulus can be used as a measure of sensory stimulus.
The dynamics and mechanics of interaction of a fingertip with a grating contribute to tactile perception. Four separate populations of tactile afferents are known to be located in the fingertip (Vallbo and Johansson, 1989). The fingertips are most sensitive to vibration at frequenciesbetween about 200 to 300 Hz. These frequencies excite primarily the Pacinian corpuscles which are rapidly adapting (RA) receptors.
Reasonable technical requirements for the vibrotactile actuator for vCR would therefore be an operating frequency of approximately 250 Hz, a displacement output that exceeds 40 dB (Re 1μm) above the threshold for sensitivity for the fingers (to achieve salience), and a rise time of less than 2ms.
Agree WTP there are vibrotactile actuators that perform better than others, but then you have to apply them to the fingers, are you sure that secure them velcro tape like you do for example is better than the glove? And are they stable enough to prevent the entire finger from vibrating with the sensor?
Otherwise you can have all the high performance you want but it will remain on paper and the precision of the vibrations that you talk about a lot, cannot be implemented if the actuators are not well fixed to a base.
This difficulty of application can be seen in all the tutorials of glove manufacturers and is the reason why there are those increasingly large boxes on the fingers, they try to stabilize the vibrotactile actuators while this glove doesn't have them.
The universe is made of force, energy, space time, it doesn't listen to nice speeches, so what matters are the results. This is what engineers know well.
IMO If you have final good results show them to us, but others have them too.
One of the aspects of Peter tass glove design, which he takes for granted, but most glove commentators fail to understand is that the very specific mechano receptor cells that peter tass is choosing to try to use uniquely for his precision signaling, called pacinian corpuscle, not only respond to a squashing (perpendicular) stimulus, but are buried deep inside the skin. They are the green thing in the diagram. This is why peter tass designed his glove with a pre-load skin compression of 0.5mm. It's why his vibrations are a movement between 0.465mm depth to 0.535mm depth. It's so he can use a very very small vibration deep below the surface to just excite one very fast responding mechano receptor to send very precise signals to neurons in the brain
Scrubbing around on a large area of the skin surface with a blurry rise and fall time, just doesn’t achieve that
Hi Winnie, I think I see from posts that you have made or have attempted to make DIY gloves VERY similar to the Dr. Tass gloves, is this correct? Or, are you using the btactic ones? Thanks very much for your answer, Melodi
Hi Winnie, Do you mind if I ask how your Gloves have been working for you? Have they improved ANY of your PD symptoms? It sounds like you have been using them for months now. Thanks, Melodi
It's been a mixed experience developing the gloves and adapting to them, but I would struggle without them now. The problem is that 4 hours a day is a huge commitment. I hope soon to reduce my usage to 2 hours a day and then maybe 2 hours every other dayI missed too many sessions earlier this week and needed to get a couple of 4 hour days in to get back on track
Hi Winnie, That is quite amazing to hear. Do you mind if I ask how long it took to develop yours? Once developed, we’re they ready to go for you, or was there some tweaking necessary for you specifically? Thanks Again, Melodi
I developed them. I am on the mk4 version currently. I hope to produce a mk5 version over Christmas. I am also hoping to produce some new pattern files (audio tracks). The core concept is unchanged but they have become more comfortable, robust and effective.As for 'ready to go " I have been on my own trying to figure things out. Everyone is an individual and will respond differently but there are probably some things that apply universally. In particular, you are going to need to balance the gloves with existing medication, and" less is more " when it comes to signal amplitude.
My design is not very commercial or slick. It is a bit of an amateur rafia work effort. But it is simple to build, mostly just plugging together existing equipment.
If a neighbour asked me to build a pair from scratch, once the various items had arrived in the post it would probably take me a day to make them. You need to be able to use a soldering iron and sewing machine. Or have a friend who can, and is willing to help. In my case my wife did all the sewing
You then need to actually use them every day. 4 hours. 2x2hours a day probably for at least 3 months, maybe longer. Maybe much longer. That is not easy.
Hi Winnie, Do you mind, when you get a chance, telling me about how your gloves are working for you on your motor symptoms, like in what ways mostly? Thanks, appreciate it very much! Melodi
It's a bit complicated. First, the gloves also help with non-motor symptoms. Last night my wife commented that I was giggling again and had been for some months. She thinks it's the gloves. I'm also much less tired during the day, and generally feel like I don't have Parkinsons. A friend said to me the other day when I was discussing the gloves with him quotes you "should have taken a video". But the likes of tap tests, walking with swinging arms, getting up out of chairs, are fairly normal for me anyway with medication. You can't video pain, fatigue, toe curling sensations, numbness and tingling, or other common symptoms.
So taking tremor for example, it is rarely noticeable at all for me when I'm on my normal medication. Without medication it's quite a pronounced tremor, but normally on my medication tremor isn't an issue for me. With the gloves it's a question of coordinating the gloves with medication. If I under-medicate in combination, I get a classic low frequency smooth tremor usually in the little finger of my left hand. If I over-medicate in combination then I get a jerkier higher frequency tremor, which tends also to be an intention tremor, or even dyskenesia
The most obvious motor symptom that is dramatically helped by the gloves is painful dystonia in my shoulder and neck arm wrist and thumb. Without the gloves my current level of medication is inadequate to treat this problem. With the gloves I can risk over medicating which also causes dystonia. But when I get it right, and it has been right for the last couple of weeks, then I am comfortable, walking with swinging arms, and full freedom of movement in my neck, no pain, and a general feeling of normality.
Another aspect we noticed when I was in the UK and resting the gloves was the extent to which I would feel the cold, shivering and gradually locking up and finding it difficult to walk or move. Again, with the gloves this is resolved.
It's definitely not as simple as using the gloves and all the symptoms vanish. There is something of an art in balancing the gloves with medication, but it is well worth getting right. I'm probably gonna regret saying this, but I seem to have mastered the art of tweaking either of the two parameters. So this week when sometimes due to component failures I have missed glove time, I compensate by adding medication. The goal is to replace medication with the gloves as much as possible, and to reduce glove time to something much more sustainable than 4 hours a day. I think I them on track, probably averaging 3 hours a day this week and looking to track down to 2 hours a day after Christmas. And that is on 4 sinemet a day instead of 8. We'll see how it works out
Thank you Winnie for a very informative and descriptive idea of what you are doing trying to balance the medication and the glove usage. Also, do I understand you correctly when you said that your non-usage of the gloves in the UK caused your PD motor symptoms to decline even with your regular amount of Sinemet? If so, that shows a definite correlation to the glove’s ability for at least some improvement in that area of PD decline. Do you reside in the US? Do you take any other meds besides the Sinemet? They are doing a study in the US and the UK right now, you are probably already aware of, using non-invasive headphones called neuro modulation that stimulates activity in the brain, I am wondering how THAT stimulation would compare to the glove stimulation? My thoughts are that the gloves are much more complex in the ways that you have previously described in many ways. I am not exactly sure about the patterns, degree of hz, ( maybe there’s no hz). or if they are ANYTHING at all comparable to the gloves in stimulation? Do you understand the neuro-modulation process in any way? I am very impressed with your ability to develop your own gloves, are you an engineer? Winnie, I hope I am not bothering you with these questions, I am just amazed at your tenacity, fortitude, and ability to GET to where you are now, and, adding to that, you are still in process of tweaking and improving your gloves! I seriously appreciate any and all information you are so kindly willing to share with me about your opinions and experiences. Thanks SO VERY much, Winnie. Sincerely, Melodi Happy Holidays to you and your wife!
Thank you Melodi - and likewise - happy holidays. Here goes
Yes - in the UK I had problems even on full Sinemet - but it was only a 5 day break and I phased the increase. I was probably only back up to 8 a day for the last couple of days (I take 10/100 not 25/100 because its all that's available in France)
I reside in France
I take 1.05mg Pramipexole extended release once a day as well as the sinemet
There is lots of neuromodulation about - but as far as I am aware , only Stanford and Synergic are trying to use stimulation of peripheral receptors to create long-term enduring effects through coordinated reset. You can stimulate the brain with skin vibrations, visual stimuli, auditory stimuli and others - but this is usually about having a direct immediate therapeutic effect. Coordinated reset is about using those stimuli to disrupt unwanted synchronised patterns of neuronal activity by using patterns of stimulation to achieve this effect. It's origins, and most of the research, does that by sending electrical signals down wires in the brain (DBS equipment is used to deliver the stimulus patterns). Using a vibrotactile non-invasive delivery system of those patterns is the new development. But the key to the therapy is the desynchronisation of unwanted neuronal rythmns - not the direct therapy of other systems.
I'm not an engineer - but I have some good friends who are.
Hz - is the unit of measurements of frequency. It is "cycles per second". So if you watch a record going round on a record player at 33 rpm, it makes a complete revolution (cycle) every 2 seconds, so that is 0.5 cycles every second or 0.5Hz (a low frequency). The vibration used in the Stanford gloves at the finger-tips is at 250Hz - or 250 cycles per second - too fast to count! The pattern used stimulates each finger once per cycle, and that involves 100ms of vibration at 250Hz in each finger, and 67ms of silence - so 4x167ms each cycle is 667ms per cycle or 0.67 seconds per cycle which equals 1.5Hz (Its 3 complete cycles every 2 seconds)
Hi Winnie, Thank you first for your medications info, second, I appreciate the neuromodulation information. On that topic, do you think there is a difference between using pheriperal receptors stimulation on the fingers, (as with the gloves), vs stimulation of the brain with auditory stimuli? The few studies done with the auditory headset stimulation may not have coordinated reset, or enough of it, so, I was wondering your thoughts on that. Besides that, do you think the auditory stimulation would be lacking the amount of total hz and frequently needed, and could that be an issue? Thank you for your thoughts, opinions, and suggestions. I was also pleasantly surprised you reside in the wonderful country of France. I am of French heritage and am planning on visiting in the near future. I know some French, but, have been studying up! So, Merci Beaucoup! Hope to hear back from you and hope your MK-5’s are coming along well. Au Revoir, Seriously, thanks! Melodi
Dealing with the easy ones first, congratulations on learning some French for your trip to France. If you haven't already seen them I would take a look at the cds by Michel Thomas as a good way to get started. Do you still have family here? Where in France are you planning to visit. It may be smaller than the USA but it's still a big country. I made a start on the 3d printing for the mk5 yesterday and it needs refining. I also made progress with the code for the new pattern audio file.
Now for the trickier one. The only coordinated reset projects that I am aware of, apart from diy projects like mine, is the work at Stanford by Peter Tass, and the testing by Synergic in Oregon. Briefly, Synergic appear to have been in a partnership with Stanford to physically build the glove that is used by Stanford in their tests, and they appear to have fallen out. Stanford now have a new partner for building the gloves and Synergic are attempting clinical trials for FDA approval for the glove they manufactured. However, Stanford have a patent which Synergic's work would appear to infringe. Nobody else is working on coordinated reset.
It may well be possible to use auditory stimuli for Parkinsons coordinated reset. Peter Tass has already used auditory stimuli for coordinated reset for tinnitus. However, for Parkinsons disease, as a non invasive alternative to deep brain stimulation, he has only investigated vibro-tactile stimulation of the skin.
I don't think you have quite got to grips with Hertz and frequency yet. There are two issues. Or rather, two frequencies to consider. The first frequency gets most of the discussion on this forum is what Peter Tass refers to as F burst. The frequency of the vibration used to send a signal to neurons in the brain to make them fire the way he wants them to. Think of it like notes on a piano. Low notes vibrate at a low frequency and high notes vibrate at a high frequency. The frequency used by Peter Tass in his published clinical work, and that I use, is 250 Hz. That frequency is the note B just to the left of the keyhole on a piano. It's the white key just to the right of three black notes and left of the keyhole. Many of the other diy projects use a frequency of 170 Hz. That is an F note, the white note at the left end of the three black notes. There are four sorts of receptor in the skin, and Peter Tass tries to use just one of them (FA2) which responds best to frequencies of 250 Hz, without also stimulating the other sorts, because they might confuse the pattern. But in a paper he published he outlined several different possibilities for using different receptors to achieve the same effect and stimulating FA2 receptors at 250 Hz was just the preferred option he chose of several others.
The other frequency is how often that F burst frequency is fired to disrupt the problem brain patterns. This frequency he calls f stim. The frequency of stimulation, or how often the stimulation occurs. This is to disrupt the unwanted pattern of synchronisation in the brain. Typically in Parkinsons disease this synchronisation as a frequency between 3 Hz and 20 Hz. In addition to firing when they're supposed to the neurons all fire together at the unwanted frequency. Let's take a frequency of 10 Hz. That's 10 times a second. To make it easier we'll slow that 100 times so down to 0.1 Hz or once every 10 seconds. Imagine the neurons in your brain are people at a football stadium. They will all get up and down at different times to go to the toilet fetch a coffee, buy a programme, enter and leave their seats. That's what they're supposed to be doing. But they have learned a bad habit and they all stand up together and sit down again very quickly every 10 seconds. Everyone in the stadium at exactly the same time. And this tends to muddle and confuse the activities that they are supposed to be undertaking. So the intention of Peter Tass treatment is to break up this unwanted learned behaviour by getting groups of people to stand up and sit down at different times. He uses small groups and gets them to stand up and sit down at a different frequency in a random pattern.
F stim is how often his group's stand up. It is 1½ Hz or 1.5 Hz. He has 4 groups - block A , block G, block Q and block Z. slowed down 100 times, each block in turn stands up and down once every 150 seconds. in a changing pattern. so maybe A for 25 seconds, nobody for the next 12.5 then Q for 25 seconds, nobody for 12.5, G for 25, nobody 12.5, Z 25, nobody 12.5. Thats 1 cycle, taking 150s. For the next cycle the pattern might be ZQAG, then ZAGQ etc. But those patterns occur every 150 seconds.
Thats the other frequency
Both are important. But for different reasons. Only Peter Tass, Synergic and assorted DIyers are worrying about Fstim and coordinated reset. And which f burst you use, if it matters at all, only matters for coordinated reset
Thats a gross simplification, but maybe it will help explain.
Hi Winnie, WOW, is about all I can say to ALL that information. Head is spinning, ha! First off, thank you for breaking it all down for me in the way that you did. I appreciate that SO much! Believe it or not, your explanation truly helped me understand it in multiple ways. I certainly believe that was the super simplified version, which I surely needed it to be, so I could understand it. I think it is complex, especially when you put it all together. Second, I am glad to hear your progress on the MK-5, sounds like you’re making good headway. Third, my family is from the northern region of France. Thank you for the learning ideas, I had French in college, but, it’s been a long while, so needed much brushing up! OK, I had heard about the Dr. Tass/Stanford vs Synergic fallout, and Synergic going on to their own trials, but, how that’s going to work out, with the possible infringement, who knows. And I heard that Dr. Tass had changed his mechanical engineering subcontractor, but, now he has a first rate one, engineering/haptics and a superb industrial designer. That’s my understanding. I don’t know if trials have started yet, or not. On coordinated reset, would you say that this is ABSOLUTELY needed to disrupt the problem of the PD brain patterns to work in ANY type of stimulator device? The f stim. Do you have the f stim determined in your gloves? If you don’t get that, (the fstim). that crucial disruption of the unwanted pattern of synchronization, then NO stimulation device would or could possibly work, correct? I have read a bit about GVS and CVS, but, the stimulation there would not be what is needed, because of the coordinated reset, wouldn’t be involved, right? Hence, the need for coordinated reset, I assume. I am fascinated to learn Dr. Tass started CR In tinnitus. I wonder how he did that? I thought I read there are more receptors in the fingertips, not sure? Anyways, so I am assuming you have managed to harness (FA2) with 250hz without stimulation of other sorts and not confusing patterns? How is your MK-5 going to improve your design? It is amazing what you have done, how you have done it, and, your knowledge of all of this. I can tell you are a very determined person by all that you have learned and accomplished. Why did you decide to become a DIYer? Is it a timing factor? There is NOT much out there, DBS, Focused Ultrasound, ohhh, and way down the road, Stem Cells, I think there is much potential there, but, could be a very long wait. What do you think? Honestly, that is all I know of besides medication changes, but, when is enough, enough? Winnie, Again, I can’t tell you how much I appreciate you responding to me, which, is SO kind of you. I truly hope to hear MORE from you as soon as you have some time, I don’t want to take time away from your research. Thanks SO Winnie, All the best, Melodi
Melodi. I try always to reply in open forum where possible, but this is turning into a dialogue, and I fear thread-crapping. DanTeoh started this thread about the Bhaptic Tactglove. We have drifted a long way off topic. I am going to copy our posts to one of my own threads and respond there
Hi Winnie, I don’t know what that means, but, I apologize for going way off topic. I have never been on a forum, so please understand that I didn’t realize that I made this too much of a one on one dialogue, and, I guess I shouldn’t have. I hope there is a way you can get in touch with me. Thanks SO much! I really value your help and knowledge and NEED it! Thanks Winnie, Melodi
Wondering how your smell is holding up? I find mine generally improved by the gloving, but there are certainly many ups and downs (ie, some nights the Talisker tastes much better than others
Smell has been the big tease for me since diagnosis. I frequently notice that I smell something new really well. And I have previously rushed to attribute it to whatever new treatment I am trying. And that has certainly been true of the gloves. But then my wife will observe how the wet dog stinks of dog, and I will be oblivious to it, or realise that the Indian restaurant I have just left smells the same as the florist I am entering...
I guess you haven't had time to build your new gloves with the proper tactors yet, or your comment would reflect that. Be warned - I have had a bit of a rollercoaster adapting to them, and I'm only half way through my initial 4 months. I am pretty sure they fixed the underlying dystonia (muscle cramps) I was getting, but equally I am pretty sure they were part of over-medication causing those same muscle cramps (as park_bear has described). Really they should be used under medical supervision.
I repeated the mistake last week, mistaking dyskenesia for tremor, and increasing my C/L when it needed to be cut. I now use the classic tap test in my left hand (my affected side) as a diagnosis tool when I think I am on the wrong level of medication. If the tap-test is normal or near normal - then cut the meds. If it is slow and intermittent - increase the meds. Hopefully this will keep me out of trouble going forward
Thanks a lot for the guidance! Indeed, I'd still been struggling with getting the controller to work properly, but should be able to start with the C-MF tactors in earnest this weekend.
From your comments finding the right balance of medication may be a bit of a challenge, as in addition to varying stress levels at work and home, I'm also experiencing a strong daily variation of energy and symptoms, feeling much better in the morning and late at night (while actually being OFF medication) than during the day and particularly late afternoon (when being ON). From what you are saying, this could actually be from too much medication -- except that without a substantial amount of C/L in my system I would not be able to even walk 50m due to disabling foot and leg dystonia.
Anyways, I'll feel my way into it, tap my fingers frequently, and report any updates here. 🙂
If I am jerky and struggle with it, then I am short of meds not over-medicated. If I can perform it normally, then either I have a Goldilocks situation, or if I am twitching and shaking, I am over-medicated.
Results have varied quite a bit. Some have been using it daily like Ethin and PWPInnovate898 . My relative has been doing it several times a week and has seen improvements, although she’s apprehensive about modifying her medication regime.
Others have tried and not seen as much improvement, so it’s hard to know at this point how broadly effective it is.
The general purpose was, as Ethin mentioned, to give those without technical backgrounds, something to try. Yes, they operate at a different frequency, but to correct WinnieThePoo they are actually LRA’s, not ERMs. Says so right in their website.
Thanks so much DanTeoh for exploring this option for us non-techies. Would you be willing to share a bit more about the protocol you are suggesting with the TestFlight app? Are there pre-programmed settings in the app that will control the bHaptics gloves ? Do you suggest 4hrs/day? I am considering buying the bHaptics gloves for my Mom, and she and I would be happy to participate in providing feedback, but am hoping to learn a bit more before spending the money. We are eager for the Tass gloves but it sounds like we may be waiting a long time for those!
I've done my best to implement the same protocols by default as the Tass study - 100ms vibration, 66ms break. When using 5 fingers, that time gets compressed.
There's normal and noisy mode (it adds more or less time for vibration, but each "finger vibration including break" is still 166ms total.
There's Mirror or Random Finger mode (instead of vibrating both index fingers, then both pinky fingers, etc, it'll vibrate different fingers per hand).
There's an intensity slider to change how aggressive the LRAs are on your fingertips.
Folks who have been using it are generally using it for 1-2 hour sessions.
A screenshot of the pd app that integrates with bHaptics TactGloves.
You don't need the inner gloves (they already come with them, but nobody uses them). Correct, DM me which email is used for the app store, which also has to be used in TestFlight
Hi DanTeoh, I am completely new to the WHOLE idea of using some gloves, except for Dr. Tass and I was wondering if you could explain for a SIMPLE non-tech person, what I can do? Would appreciate any and all help. Thanks, all!
That's wonderful Squarepusher! What settings and time are you using? My Mom has been using the bHaptics gloves+the iphone app for 1 week. She started at 30 mins/night and did up to 1 hr 45 mins last night. She skipped one day because she was busy.
She is doing 4 fingers, normal vcr, mirror at 50% intensity, but not sure if that's optimal. We were also wondering if she could break it up into 30 min sessions or if that reduces the effectiveness.
I think her speech has gotten stronger but that may be too early hopefulness on my part.
If I consume any media at all during treatment it is Glenn Gould playing Bach or Brahms or Vladimir Horowitz Live in Moscow. Exposure to genius seems to be helping me.
I am not a doctor nor do I pretend to play one on the internet. You should definitely confer with a neurologist about any of this. It is dangerous to listen to an anonymous, random person on the internet. I may be a complete idiot, and having said that....
Like many newbies, I started out ambitious. 45min, 1 hr, 1hr + in the first few days at 28% intensity. It felt like this was frying my brain. I stopped using the glove for five days and read and read.
Now I am completely replacing ambition with curiosity. I do 7 min sessions at the lowest intensity level (1%) with minimum 2 hour breaks between sessions. I wear the exterior glove to provide pre-compression, but not the interior glove, I chase each session with lots of water and electrolytes and some simple carbohydrates like a rice cake and I rest and do nothing for at least 15 minutes afterwards
Don't starting adding a lot of electrolytes to your water if you have salt sensitive hypertension or are disregulated in any way around electrolyte balance...talk to your doctor
I used to combine glove time on with other activities like working out. Now I worry about interference effects from too much finger activation. The most I will do are some Chaya Yoga standing poses or cloud hands tai chi, otherwise I use the glove during rest times of the day and do nothing.
I have some initial measurements and hesitate to share them here without double and triple checking my work...with that caveat in mind, here is what I'm willing to share subject to revision
1) Internally at bH they believe (and here I'm not sure if they are relying on OEM vendor specs, certificates of conformance, or whether they have done their own test measurements) that they have rise time down to 5ms and fall time down to 5ms. Empirically I have measured rise and can confirm the average of many measurements is 5ms (range 3.6ms to 12 ms). I have not repeated the work but so far I'm inclined to believe the 5ms nominal for rise. On the fall time my range is 12ms to 38ms. I may be doing something wrong and am going to repeat the work, but call it 20ms for fall time, subject to me finding some resonance in my test system.
2) based on these measurements I foresee no cross channel overlap @ 67. So I'm sticking to 67ms silence to keep aligned with 3*(100ms+67ms)= 2 s
3) I measure many bursts at 100ms, but some go out to 120ms. again there may be some resonance in my test set up that I need to eliminate. Provisionally I'm inclined to believe we are actually operating at 100 + 67 when that's what we dial in.
4) I think we lose 2 wavelengths during rise, and we need a minimum of 10. So we need a min burst of roughly 72ms for a 170hz coin. Because I'm not sure where (100 - negative jitter) clocks in I'm not using jitter. For now, sticking with original recipe of 100 + 67
5) I did a power spectrum analysis on the coins and we are getting (or at least I am getting) 170Hz with a steep dB drop off going to 150 or 200. Those of you hoping for some right tail 250Hz - none there. However - bonus, there is a harmonic at 340Hz that we pick up for free, and is a very good frequency for stimulating the PC.
Hope this helps.
**Some test equipment for measuring skin compression is coming in the mail
***New measurements on 12-Nov-2023**** see below
Did some new measurements today. If you program (say) 67ms for the silent period that shows up in waveform analysis as the absolute dead zone between pulses. That is, 67ms is not measured from the end of steady state amplitude of one pulse to the onset of energy for the next pulse, rather it represents the very end of the tail of one pulse to the very beginning of the next pulse. If you count from the end of steady state of pulse 1 to the onset of energy of pulse 2 the length is more like 93ms
Similarly for a pulse, if you start measuring from the onset of energy to the complete disappearance of energy of that same pulse you get 106ms+. From the first half max amplitude to the end of steady state amplitude is more like 80ms
Today under different (but unmeasured load) I got a peak resonance of 162Hz.
All of this makes me think we are getting less pulse time than we might imagine and a longer "inactive+silent" period than we might have imagined.
I wonder if a near-term solution might be to reduce silent time to 60ms and use positive jitter only? Ideas?
That’s really greatly helpful, thank you so much for the effort!
So it seems that for the temporal precision, the beHaptics are indeed not quite as good as the original Tass gloves with C tactors, but maybe not completely terrible either.
ad (5) I suspect this not under load? Under load I saw the peak closer to150-160hz
I'm hoping my force transduction gear arrives soon. Then I can report my findings as a function of compression in psi (for example power spectrum), and help myself convert pre-compression in mm to pre-compression in psi. I did have some load on the LRA for my initial tests but would totally be making up the number if I had to guess what it was in psi
I am still puzzled by the very low intensity you are using. I can feel 1%, but in order to get a distinct ‘buzz’ on each finger I need quite a bit more, perhaps 50%. Wondering what other people are using on average?
If you scroll up the thread you will see a figure estimating the spatial density of Pacinian Cs on the hand (and foot). Let's say I have 25 under the pad of my middle finger tip. I'm trying to stimulate 1 or 2 on each burst, and possibly a different 1 or 2 the next round. I'm a minimalist for now. Maybe one day I will change my strategy
I am pleased to see that you have raised the technical level of the discussion. My compliments for your practical technical approach with the correct importance. 👍
Ty, If it helps you in my opinion you should take a look at the concepts of threshold for sensitivity and salience and how they are established in this research.
For example in definitions like this:
“Reasonable technical requirements for the vibrotactile actuator for vCR would therefore be an operating frequency of approximately 250 Hz, a displacement output that exceeds 40 dB (Re 1μm) above the threshold for sensitivity for the fingers (to achieve salience), and a rise time of less than 2ms.”
In my opinion it would simplify things but perhaps you have already seen and solved it
Very good point. I'm reading through 14 papers published between 1951 and 1964 where physiologists were first trying to characterize how the pc responds to the environment. I only have a limited number of useful hours each day so my rate of progress is slow. Disease has taken its toll.
Reading references in the research text was enough for me, sometimes the precision can be excessive and the importance between the various items involuntarily altered compared to the original application context. These two things make everything more difficult. I don't know if you've already read this, it's the first reference you find in the text of the materials.
Being a complete duh with electronics, I have been looking for someone to help me build the Tass version for my PWP, but no luck so far. Are you saying the bHaptics version requires no building effort? We just purchase the glove and then download the app?
That’s right— with the caveat that the point of all the discussions here is that the bhaptics TactGloves gloves are somewhat similar to the original Tass gloves, but also differ in a number of features (with consequences for spatial and temporal precision) and that these features could actually be crucial for achieving the intended effect.
At this point, we don’t really know yet what works for achieving the best results with the gloves. Peter Tass has published a number of very encouraging and promising results, so to follow his path it makes sense to stay as close to the original gloves as possible. Nonetheless, quite a number of people here have also reported their positive experiences with some alternative gloves, including the bHaptics. But there is no systematic evaluation or comparison of the many different alternatives, so everybody is feeling their way forward. At least the consensus seems to be that the bHaptics are ‘mostly harmless’.
It depends on what you mean by 'work'. They did not take my dystonia away (or the severe neuropathy for that matter -- these are the two things bothering me most at the moment), but they do provide a nice relaxing acute effect for me. And maybe they are even creating some positive persisting effects.
I have been using the bHaptics quite regularly since early summer, and over that period I've had much more energy than before, felt more relaxed, mentally as well as physically, in terms of reduced rigor and improved flexibility. The latter effect is also reflected in a noticable reduction of my UPDRS-III between July and now.
Caveats: over the same period I also started on exenatide and proprionate, and in recent weeks I've largely replaced the bHaptics with more Tass-like gloves. So the positive effects could be due to any, or a combination, of these factors.
Based on my highly subjective N=1 experience, I'd say if you have a chance to obtain gloves that are close to the original Tass gloves, you should try these first. If such gloves are not at all available, you could still give the bHaptics a shot. They are likely to provide you with a relaxing feeling while wearing them, and maybe, perhaps even with some longer-lasting positive effects.
Ethin, Hi again, How would anyone be able to get gloves close to the original Tass gloves? I am willing to try the bHaptics with Dan, but, I am just curious HOW anyone on this forum has been able to make or get gloves close to the Tass gloves. I looked at the Buzzboard, OMGOSH, it seems like it’s over my head. I could try to find someone, but, not sure where to even begin with that course of action. I have been reading a LOT of past threads and Winnie the Poo seemed to be making his own? I have personally talked to Kanwar from the original study many times. I don’t know if anyone else here has. Dr. Tass is making a lot of headway. He is in good shape. However, who knows how long this will take to get actually to everyone. So, getting ANYTHING at this point is critical if we are getting worse even on CL with gait and balance. I know the gloves helped Kanwar in that area, not much else does, as far as I know, except PT. Do you know HOW to make the Kanwar original gloves. BTW, his broke down.
Hi, yes I think you have the correct impression: (1) original Tass gloves are currently only available in clinical trials, and these are very hard if not impossible to get into. (2) the various DIY gloves are somewhat (more or less) similar to the original Tass gloves, but they require technical skills (at different levels) for assembly and configuration. (3) Finally, models like the bHaptics TactGloves are ready-made and commercially available, but they differ in some technical aspects from the Tass gloves which could be crucial for the intended effect. In particular, they do not stimulate at the optimal frequency of 250 Hz and are less temporarily and spatially focal than the original gloves. Nonetheless, some people in this forum have reported benefits from using them regularly (while others warned of adverse effects). So, ideally, someone could help you with making a pair of DIY gloves, but failing that, you could give the TactGloves gloves a try. It would be a good idea, however, to also discuss this with your neurologist, as any therapy that has effects also has side-effects.
Hi Ethin, Thanks for responding, how do you feel about using the TactGloves? I hope you are having some success. I wonder why they cannot get to the 250hz and WHY they are less temporarily and less spatially focal (not quite sure what that means, tho)? Have you ever participated in a clinical trial or study? Have you ever considered DBS? There is Focused Ultrasound, but, it’s rather new and not quite there yet, and a bit scary IMO at least at this point for PD. Is there things you have tried? Thanks, Just Curious and Always Hopeful. Thanks for talking!
The tact gloves cannot operate at 250 hz because they were not designed to do do. They were designed for use with computer video games to give tactile feedback. They do this very well by all accounts. They use a linear resonant actuator (lra) to do this and the one they chose operates at 170hz. LRAs are very efficient at their resonant frequency and very difficult to drive at other frequencies.Peter tass tries to stimulate several small focussed parts of the brain using vibration of just one sort of skin sensor which responds best to vibrations at 90 degrees to it by squashing and unsquashing it in a very small piece of skin. Peter Tass gloves are purpose built to do this. The tact gloves were built for a different purpose and so can't do the same thing.
As Ethin has pointed out, they can vibrate to the patterns Peter tass uses and this seems helpful to some users of the tact glove
Hi everyone. I was talking to a friend who is a professor of psychiatry at Harvard and is quite knowledgeable about neurology. Apparently this field we are dabbling in is called neurophysics. Just knowing that has opened up a boatload of resources when I do google searches.
And for background, she recommended we read "Rhythms of the Brain" by Buzaki. I'm only 30 pages into it but enjoy it so far. If you - like me - are a blank slate around neural ocsillations you can at least bootstrap some basic frameworks around this field we are all exploring together by reading the book.
Experiment today. (be super-careful if you want to try this, esp if you struggle with blood pressure regulation and/or balance). Normally during glove use I am sitting up: i.e. my head is higher than my heart. If you take yoga seriously, you might believe that blood flow to the brain will be higher when the brain is lower than the heart - hence all the emphasis in yoga on inversions. Since I only wear the glove for 7 minutes I've been playing with being inverted some to all of the time. Don't go crazy out there - a downward dog is an inversion!
hi there! Send me a private message with the email you use for the apple app Store, and I’ll get you added to TestFlight. In the mean time, go to the App Store and install TestFlight.
Hi, Dan Teoh, I hope I can reach out to you with help in making the gloves. I am really a dunce when it comes to anything over the very basics of technology, but, I was told you might be willing to help me. I am very determined, but, I am a girl and NOT a tech savvy one, I am afraid. Would you be willing to help me? I certainly would owe you a debt of gratitude! Thank you SO much, if you are willing.
Dan, how do you purchase bHaptik gloves? I just read you saying that. I left you an earlier message to try to get HELP! I am totally at a loss here, thanks!
Hi Dan, I have been trying to procure the bhaptics gloves, but, their website won’t let me access anything??? I am seeing bhaptic gloves made by other companies, but it’s not the actual bhaptics website? I don’t know why the actual site won’t come up? Sorry to bother you. Really trying here, thanks for your help w/ us /me and PD.
Hi Dan, I found by KnoxLabs a bHaptics TactGlove DK1 Wireless Haptic Gloves VR accessory and they say “by bHaptics” @ $299.00 , is this the right one? Thank You So Much.
Hi Dan, the BHaptics site let me on finally, I found the gloves, thank you. I have a question, do these gloves work by the app you mentioned in previous posts? Would you need my email to help on this? Are others having positive results from these, do you know? Sorry to be a bother, but, just want to make sure this is the easiest, best, way to go. Thanks A lot.
There's been a wide range of positive results, I think there's around 8-9 people using them daily.
I wrote the app to work with the bHaptics gloves only. You only need to provide your email to me as it's the only way to get the app installed on your phone (using a system called Apple TestFlight).
Ok. After 2 months: sense of smell has come back. Sense of taste has greatly expanded. Myalgia or muscle tightness in the morning is greatly reduced. Have abandoned the 7 minutes sessions and am now fully embracing 45 minute sessions at least twice a day, but still using intensity level 1,2 or 3%. Turns out stimulation of the pacinian corp. may be optimal at 250Hz for fingers at 28-32C, but at 24C the optima is 170Hz, So I'm experimenting with cooling my fingertips with frozen gel packs before use. Not only will this 'deaden' stimulation of unwanted vibroreceptors closer to the statum corneam, but it will more optimally stimulate the PC. BE CAREFUL: don't get frostbite by going overboard with this. DON't do this if you struggle with temperature regulation. TALK to your doctor
Also, C/L use is down 15% overall. Vision is getting worse and tinnitus not getting any better. Still - a worthwhile journey
I'm not sure. Could just be age related. I never used reading glasses (or any glasses) until my 50s and now in mid 50s it seems like I need reading glasses for every situation. But should this worsening be compared to my baseline level in my 40s, my 50s or is the correct baseline average use by most people in their mid 50s?
Many thanks for the update!, and very good to hear about your improvements.
Interesting approach re the pre-cooling. If I use the gloves with chilly hands (I'm sometimes using them outdoors, instead of normal gloves), my feeling of the stimulation tends to be generally diminished. I'll check, though, if this sensation may be due to the apparent selective removal of tactile interference.
1-3% intensity seems quite low, though. I am currently using 55% on the bHaptics, which provides a somewhat similar sensation as for the C-MFs on a low intensity setting, albeit with considerably more stimulation across the whole fingertip. (And of course they may also differ in terms of temporal precision, beyond of what I can subjectively feel).
If I use 50% or less, the stimulation becomes much less distinct, ie, I have difficulty assessing which finger is being stimulated when. It just becomes a bit of a tactile 'mush'. Not sure that this is helpful, so I normally stay above the threshold.
When I read through the early foundational physiology papers on the Pacinian corp. (call it 1948 to 1964) it is clear that the PC is optimally stimulated at 170Hz at room temp. Blood coming out of the heart is obviously 37C but once it makes it down the radial artery and to the palm it has cooled to 34C. And what it cools down to in the finger tips is a function of peripheral vascular disease, history of smoking. diabetes or pre-diabetes state, level of exercise, age etc. It might be 26C in a sedentary person and closer to 31C in a triathlete. all of this depending on the status of their micro-circulation.
I realized - swimming in the ocean a few weeks ago - that it wouldn't take much to cool the fingertips to 24-25C. This takes away the whole argument that 250hz is somehow sacred and your glove is a POS if its actuators don't vibrate at that freq. The other argument is that these gloves over-stimulate or non-specifically stimulate Meissner, Merkel, etc and so why not deaden them with pre-cooling the fingertips.
I agree with pre-cooling the overall feeling is diminished so I will bump up the intensity to 6% for the first 20 minutes, before dropping it to 1-2%. I'm just looking for slight salience, not a loud buzz
I'm not sure what you mean by C-MFs
Have you played around with nicotine gum? If I have to be sharp socially I will use the glove for at least 60 minutes before going out and suck on a nicotine lozenge (1mg), 20 min before arriving. I limit this hack to 2x per month as I don't want to get addicted to nicotine, and don't want its negative effects on the peripheral vasculature. It provides a boost to focus which pairs well with the glove which provides an anti-fatiguing boost.
Not sure what temperature they used, although I think it's unlikely that they manipulated the finger temperature of the subjects. My (very subjective) experimentation with different stimulation frequencies (and warm fingers) seemed to agree with this curve: at 170 Hz you need roughly twice the stimulation intensity as for 250Hz for producing the same vibrational sensation -- but I am happy to experiment a bit further at different temperatures.
C-MFs are tactors as in the original Tass gloves, with an optimal resonance frequency at 250Hz.
There is a paper from (going from memory) 1958 that would suggest optimal at 24C is 170Hz and at 37C is 340Hz.
What I like about your use of 55% intensity is that the LRA produces a strong harmonic at 340Hz so you are getting both 170 and 340 stimulation. Down at 1% intensity the harmonic at 340Hz is not detectable
IMO potentially all vibrations that stimulate tactile perceptions randomly have a desynchronizing effect; from Charcot’s carriage to the vibrating ball, to Tass’s glove, to the imperceptible smartwatch of this recent research.
In my opinion all of them provide a slight improvement until, tactil perception, after prolonged use, loses randomness and becomes routine. So in the end, rather than stimulating perception and attention, they tire and the gains are cancelled.
I think the random factor and variation in perception are the most important factors, so I would try different vibrating tools rather than focusing on uncomfortable gloves for hours a day for months.
Some updates: one of the actuators on my left glove went down, so I switched to right glove only tx. Immediately I lost that sense of freshness and vibrancy to smells, taste became unremarkable but available, and myalgia on the RS of the body went back to the bad old days. C/L use went up by two pills a day
By day 9 I converted to treatments with a fully functioning R glove and partially functioning L glove. Very little improvement. I bought a new pair of gloves post-haste
After 2 hrs of treatment in the evening with the new gloves there was substantial but not full relief of right sided myalgia and taste became deeper and wider in available flavors, combination of flavors and resolution.
Some lessons: if you are getting as much out of these gloves as I am get a backup pair. Your first pair could die, or bHaptics could go bankrupt, or bHaptics could change their design. No one is making any promises to you so do something about redundancy as a risk management strategy.
Lesson 2 (at least for me): bilateral stimulation is an important feature of treatment, at least with these gloves in their current form. For now left sided stimulation is essential
Lesson 3: don't count on consolidated, perpetual gains after only a few weeks of treatment. I've never dosed more than 1.5 hrs on one day and clearly I have a long way to go
Lesson 4: I tried doing novel activities with my left hand when the left glove went down. for example I would throw a vibrating ball into the air and catch it repeatedly for the duration of the right hand tx. This may be a useful ancillary activity but was no replacement for using the left glove per protocol
I'll update the group if symptoms continue to abate with these new fully functioning gloves
I also lost one actuator in one glove and two actuators in the other glove recently. The problem was due to the stiff connecting wire of the LRAs which broke off after long-term daily use. Fortunately, the LRAs are easily acessible if you turn the gloves inside out (the compartment which holds them is just glued shut, not stitched together), so they can be soldered back on in a relatively straightforward way. (Maybe an opportunity for replacing the original LRAs with LRAs that have a resonant frequency closer to 250 Hz and better temporal precison, if such elements come to the market.)
I've noticed over the past week that the bilateral glove treatment has not been having the effect on expanded sensory perception and pain reduction that I had seen before. Recently I watched an interview with Kanwar Bhutani ("the marathon guy") where he mentioned that the treatment does not work so well for him when lying down compared to sitting up.
This comment of his stimulated the realization that for the past week I've been laying down and watching tv during glove use. This passive approach is new for me. Normally I'm doing household chores or some sort of standing Chaya yoga movements.
I reverted back to energized treatment and am seeing benefits quickly. Tastes linger into after-tastes, lingering into after-after tastes sometimes enduring 30-45 seconds. Myalgia is reduced. And I'm less desperate for the next C/L dose
I'm going to write again comparing post-treatment symptoms as a function of heart-rate. First I have to buy or borrow a heart-rate monitor. I encourage others to do the same. I'm curious to know what your experience is.
Question for Glove users on this thread. I've noticed over the past 5 days that the effect of the gloves on symptom relief has been waning. The bad old days are starting to creep back slowly.
What do you guys think of the following: there are only 24 permutations of sequencing 4 fingers without repeating one finger. I think the brain gets used to these 24 patterns even if they are presented in random order. What if we added the thumb in a round-robin of 4. in other words we keep they Tass structure of 4 x 166, but by picking 4 from 5 we increase the number of permutations of length 4 to 120?
Thoughts? Have I done the math correctly? I'm quite excited about this and think it will help all of us
**Edit**
In order for a number sequence to be random, no amount of analysis of that sequence can predict what the next number will be. Doesn't matter if you run AI on a supercomputer, a random sequence will have no underlying pattern that will be detectable. That's the definition of random
In the case of these gloves there are only 24 patterns one can generate of length 4 for 4 separate fingers. And the fourth finger of that 4-length sequence is completely predictable as it is whichever of the 4 fingers that has not been actuated yet. I suspect that the brain begins to develop some pattern recognition to the protocols we have fed it, and believe we should migrate to the 4 of 5 finger "round-robin" paradigm - or at least have it as an option
Well, if you are on the bhaptics/ TactGloves, you can easily switch to stimulating five fingers and a large number of random patterns. But even with ‘just’ four fingers, I don’t find the random patterns predictable at all, so I am not sure if the brain really gets used to them.
What is your current intensity setting? If it is as low as before, it should be even harder to predict the stimulation pattern, no?
I like the 5 finger mode too, but still the 5th element in that sequence is completely determined: namely it is whatever finger has not been actuated yet. But in 4 chosen from 5 that 4th element of a sequence only has a 50% chance of being one of two fingers. 5 choose 5 can never be random, but 5 choose 4 can be.
Since I've lost all the gains associated with meds reduction I have been experimenting with intensity levels up to 7%, mostly when I'm outside on a cold day. I've been shifting the silence times up past 90ms to move one sequence to <1.3Hz and the shifting below 67ms to try to hit 1.6Hz. Always using noisy mode.
I've come to believe my 90 billion neurons with 100 trillion interconnections figured out the original 24 patterns and I'm pushing the limits of the software to keep it guessing what stimulus it will process next
I also reversed engineering the tinnitus product from reading papers and patents and I run it while running the gloves, just to keep the brain challenged (and because I have tinnitus)
no sorry - in 4 finger mode, it does 3 sets of 4 fingers, then a break. 3 sets of 4 fingers, then a break. 3x4 =12. Right now, the vibrations are distinct sets of 4 fingers with no repetition.
1,3,2,4
3,4,1,2
1,4,2,3
break.
What I'm proposing is an even more random but allowing for repetition:
I am all for that 'true random mode' (in fact, I had assumed that the randomness was actually determined at the level of each indivdual sequence of 4 or 5 finger stimulations 😀).
In addition, even more randomness could be provided by an option that allows the intensity / stimulation amplitude of each individual stimulus to vary in a random range, in line with this paper by Tass and colleagues that argued benefits of the approach based on computational simulations:
I briefly experimented with this option, but in the end returned to a fixed, low amplitude, because (very subjectively) I did not experience substantial benefits from the random amplitude setting. Naturally, that does not mean that this option should not be explored more systematically -- experience shows that any of these settings needs to be employed for several (3 or more) hours a day for several weeks or months to show its true worth.
No. I find the benefits are progressive and with increased duration of usage I can reduce glove time {and if I don't reduce glove time then I need to reduce medication.
I don't think pattern recognition is a factor for vCR. It may be for some other vibrotactile therapy benefits.
I do think that using an un-mirrored 8 channel delivery with a pattern incorporating jitter is contrary to Dr Tass advice
I guess it depends whether you are trying to get a Tass glove before they are officially released or start your own research programme from scratch
Thank you. If you are willing to share, did you find ongoing benefits after 100, 500, 1000 hrs, etc? Do you recall certain milestones that were important to you and make a note of hours treated? Did your improvements every have a "rising sawtooth" like trajectory where you regressed before jumping up to the next level of benefit, or was each day better than the preceding day?
To deal with the easy one first, it certainly wasn't as simple as each day better than the preceding day. I have posted a fair bit about my experiences. it was complicated by an evolving glove design and patchy use (not a regular consistent 4 hours a day before September). Learning that, the acute effect of the gloves interacts with the medication, and that too much of that blend caused adverse effects was important. And that some of the side effects of "over done" were easily confused with symptoms of "under done" was important.
I'm probably going to regret saying this, but at the moment I think I've got really good at managing that balance.
Whilst I don't completely dismiss the possibility of coincidence, control of my new symptom, exceptionally painful dystonia, is the main benefit. That, and generally feeling well.
I'm curious: in your journey with various gloves and treatment times. Do you now dose in large time blocks (ie 2 continuous hrs, or 1.5 +.5); or do you find that getting to 4 hrs by whatever means possible (20min sessions scattered throughout the day) brings about the same benefit as longer, continuous treatment times?
Yesterday I bought "glovetacts" off of amazon. If you glue them to the fingertips of your gloves then your iPhone responds as though you are touching with your finger. My evaluation is that they are better than nothing, but not high or even good fidelity. Nonetheless, is is a hassle to take your gloves off to accept a call or do anything on the screen so gluing this product to the glove fingertips helps with basic interaction with the phone. Write to this blog if you find something great.
**Edit: after 1 day of use they stopped working. They suck, don't buy them
Loving ver 14. a million thanks to danteoh. for those of you wondering what's up: the original recipe of 100ms pulse + 67ms silence gives an operating frequency for one loop of 1.5Hz. Since the delta band is defined in various papers as 0.5-4hz, 1-3hz and/or 2-4Hz you now have the flexibility to contend with more than synchronous neurons at 1.5hz. for example 43ms silence is 1.75hz and 99ms silence is 1.25hz, assuming burst remains 100ms
of course I'm not a neuroscientist or clinician, just a cowboy that knows shit so talk this over with your doctor
I promised you guys a few weeks ago that I would convert a 0.5mm pre-compression of the LRA onto/into the skin from mm to psi so you might have a sense of how much pre-compression to apply to your bH gloves. Unfortunately my initial measurements today (in the range of 0.7 psi to 5 psi) were very noisy and I would say unreliable. My set up needs more constraints. Nevertheless, any of you owning calipers should experience what 0.5mm precompression of the LRA against your skin feels like. It is DEFINITELY more pinching than the gloves by themselves. Wearing the outer gloves on top gets very close to that pinching feeling, but (for me) not enough on the index finger. To be continued....
Some brief observations today: recently I had a chance to compare some new bH gloves to an older pair. The new pair were purchased as a backup. What I noticed immediately was how stiff the new pair were, providing significant circumferential pressure along the long axis of the fingers. This pressure is akin to the feeling I have described before of having one's finger in a caliper under 0.5mm of compression. Just as a new pair of shoes becomes compliant with the feet over weeks, so too do these gloves and that strong pre-compression is diminished. It could not be more clear that my old gloves are providing minimal pre-compression. That's the first observation. The second: with this new, adequate pre-compression the very low intensity setting of 1% produced a salient buzz at the fingertips, salient in a way I have not experienced in weeks. Stay tuned my new force transduction gear is arriving soon...
Big surprise: 3 years ago I started wearing reading glasses for the first time. Since then vision has become progressively worse - Dec 4 I went out for dinner with friends and when someone asked me to organize an Uber for the trip home I couldn't make any sense of what the text was saying on my phone. Couldn't type in my address - it was all a blur.
Two days ago I was in a library cursing the fact that I forgot to bring reading glasses. 45 minutes later I realize I have been reading perfectly well without glasses. Looked at my phone and the result was the same. Since then I stopped leaving home with reading glasses
Unexpected benefit. Wish I had more careful about writing out my experiments with the gloves these past few weeks. What caused this?
Maybe you have found the silver bullet (at least for Presbyopia). I hope that the beneficial effect on your eyesight is permanent. With regards to the PD symptoms, is there a database of symptom outcomes compiled for the iPhone bhaptics gloves by the users aside from the scattered feedback written on this post?
I would be happy to contribute to a Google form, although in the long run, it would indeed be best (and perhaps most objective) to do the symptom tracking by an app on the phone or on a wearable device.
After all, with the glove control already on the phone, the logged stimulation parameters and use times could be nicely analyzed together with the tracked symptom data. (given some interoperability between the different apps)
I'm curious: in your journey with various gloves and treatment times. Do you now dose in large time blocks (ie 2 continuous hrs, or 1.5 +.5); or do you find that getting to 4 hrs by whatever means possible (20min sessions scattered throughout the day) brings about the same benefit as longer, continuous treatment times?
Well, I mostly sit with the gloves for the full four target hours at night — mainly because of time constraints (due to work and family) during the day. Sometimes I get started earlier in the late afternoon or early evening and get one hour to 90 minutes done before breaking and resuming later on.
In any case, I feel best during the next day if I get as much evening glove time done as possible, and as the benefits still appear to grow, I have not yet cut down on the glove time.
By now, I feel so good during most mornings that I don’t feel the need to take C/L before lunchtime, and then I get by with about 4 C/L 25/100 during the rest of the day. (To be honest, am still quite amazed that this therapy appears to be working so well. )
Thank you for this very generous answer. Is there any time so short that you won't bother - say 20min between activities? And do C/L and 4 hrs tx run concurrent or do you start one out-of-phase with the other - say C/L then wait an hour to start gloves? Sorry to bother you with so many questions
Not at all. Indeed, I normally only sit down with the gloves when I have at least an hour to spare. if I do a session that’s just half an hour or shorter, it is because I got interrupted by something.
C/L and glove time don’t overlap too much; by the time I sit down with the gloves in the evening, the C/L is already wearing off. So in a way, C/L and the gloves are compensating for each other- and if I had more time during the day, I would try to soften my mid-afternoon low by some extra glove time, rather than taking C/L.
In any case, good luck with your own glove experience!
Sorry to trouble you again. For any symptom that has improved (you pick) has the improvement emerged as a (a) a step function (b) slowly improved over time (c) or improved like a saw-tooth function where the symptom mysteriously jumps up a level of improvement then can go for a stretch of time where it seems to get worse, or at the very least, not improve, before it improves again. Or has your experience been completely different than any of these scenarios?
Symptom improvement or worsening as a function of weeks of glove use
While I feel substantially better now than a couple of months ago, it's certainly be an up and down, from day to day as well as during days (feeling best in the morning and worst in late afternoon) -- so I go with (c).
Generally, the changes have been quite gradual. I did not have the experience of the subjects that Peter Tass showcases in his presentations, who seemed to feel much better already after the very first 4hr glove session. For me, it typically takes several weeks before I am certain that a certain feature has improved (that I can reduce medication, experience less dystonia, etc.). More continuous tracking with a wearable might help to be more objective here, but I have not yet made that step so far.
I completely hear you on (c). An epic battle between aging and disease progression vs the glove.
If you would like some breathing techniques for late afternoons I will send you a private message. They won't fix the problem completely but they are cost-free.
I have taken up too much of your time, but am compelled to say concerning the showcase patients: Kanwar completed first a marathon, then a triathalon. (1.5km swimming, 40 km biking and 10 km running in one day). ONE DAY. I can't help but feel he has a version of pD that impairs motor coordination, but has no disease in his mitochondria. Full ability to produce maximal ATP from glucose, lactic acid or butyrate. I think he has a high lactic acid threshold and an ability to recycle at the muscular level. How many 59 year old pD patients can sustain an (est.) 45-80 W output for 2+ hours?
The next showcase patient lifts himself from a dead-hang to his waist then generates enough momentum to swing 4 feet horizontally then catches himself in a dead-hang. My guess is he is in the 99th percentile of grip strength for all men, pd or not. And also imagine nor impairment in his ability to generate ATP in the mitochondria and locally recycle lactic acid.
I'm not accusing Tass of cherry picking. I just think there was something unique about those two patients in terms of ATP production. Of course I'm not a scientist, just an armchair speculator who might be completely wrong about everything. Still: if we had a boat of pd patients and the captain started tossing them overboard, how many could swim 1.5 km to shore, then bike 40km and run 10km back to their home?
Well, I cannot really judge the physical form of Kanwar Bhutani or Jimmy Choi (michaeljfox.org/bio/jimmy-c... before and after vCR therapy, although I agree that they are highly inspirational people but do not look like very representative PWP.
But I do know that, for whatever reason, I have much more energy now than a couple of months ago, before starting with the gloves. Last year around this time, amidst severe bouts of fatigue, I was considering retirement options. Now I am planning new projects at work. Back then I was about to cancel my subscription at the local swimming pool, because I had't used it for half a year. Now I am going quite regularly again, about once a week.
I don't think I will start training for a marathon or ninja warriors anytime soon, but that's what more ambitious and sporty people may do when they feel this surge of energy induced by the vCR therapy.
(Or maybe I have it all wrong, and the energy is actually due to the exenatide that I started taking around the same time. But intuitively, my bet would be on the gloves.)
So glad to hear about the benefits that you have derived from the gloves, Ethin. It is very encouraging news for all of us with PD. Just to be clear, which particular pair of gloves were you using?
Thanks. I'm was a bit embarrassed to mention it because I was told there is no way for this condition to improve once the lens looses its ability to be flexible and change shape for close objects.
Has your distance vision changed? The lens inside your eye that you are referring to is the adjustable focus, and it hardens and loses its range of adjustment over time. So you lose the ability to switch naturally between distance and close vision with age. That's known as presbyopia.But the big focusing is done by the cornea. The bowl shaped transparent skin on the front of the eye is the big fixed focus light bender. Moisture levels will affect that focus by the cornea enough to make me move my phone or a book 10cm or so nearer or further away for close focus
If, like me, you have had a cataract operation that variable focus inner lens is replaced by a fixed focus plastic one. You then need varifocal lenses to adjust between distance and reading vision. And in my case a couple of extra pairs for very close focus work like soldering
I have mixed feeling about how to respond. Currently my eyeballs are 20 inches from the monitor and I'm reading and typing without glasses. (this isn't true every day). If I move to 16-17-18 inches proximity I feel the need for reading glasses...therefore, I'm pulled towards saying the profound effect I wrote about before was not durable (using 16" as the gold standard). But there is some general improvement >20". I never use reading glasses when looking at a phone anymore - but I do hold it further away...I can read most labels at the grocery store without glasses
Scoreboard summary
Smell - durable
Taste-durable
85% less myalgia and stiffness upon waking and leaving the bed - durable
Arms swinging - been 11 days now, so I'm inclined to say that is durable and getting better
Lowered daytime fatigue (lowered but not resolved) - durable
Ability to follow nested complex arguments real-time - durably improved but not resolved
Near vision (16" or closer) - not durable
Dose sparing/dose reduction - a mess - good days and some really bad days
What helps - getting between 2 and 4 hours a day of glove treatment instead of 0.5 to 2 hrs. And 7 or more hours of sleep at night. Doing gentle dynamic standing poses from Chaya Yoga with rhythmic breath while wearing gloves in the morning. Doing restorative (esp stillness poses) yoga with gloves in the evening
Thanks for the reply and the updates. Your results provide more evidence that the gloves really work; it is just a matter of adjusting the settings together with the meds. Good luck to you as you continue down this path.
Hello everyone. After much trial-and-error, I am reporting here that using a thin film pressure transducer I have determined that the pressure required to get the bH LRA to pre-compress 0.5mm into the fingertips before actuation is 0.5 to 0.75 psi
My experience is this: when you first get start using the bH gloves out-of-the-box they are stiff and this stiffness comes very close to providing 0.5psi of pre-compression on each fingertip. As the fabric of the glove becomes more compliant to one's hand with many hours of use the glove looses its stiffness and fits loosely around each fingertip - esp the 3rd and 4th fingertips ("wedding ring" finger and "pinky" finger), but retains some snugness around the index and middle finger.
You may wish to compensate for the loss of pre-compression on the fingertips by (if you are really nerdy) using some sort of torque wrench and hose clamp to assure that the same amount of compression for every treatment (as opposed to just letting pre-compression drift to 0 psi as the gloves age). And yes you will look a cross between Edward Scissorhands and Wolverine if you go outside for a walk
Or just find a wide rubber band that causes each LRA to compress against the fingertip with moderate snugness.
If none of what has been written here makes any sense to you, then do this: find your own way to keep that snug, new glove feeling in the fingertips. Share your creative idea on this thread
Edit: Feb 11, 2024. If you put the gloves on and "isometrically" push your finger webbings together as far as possible - i.e.: send all your fingertips as far/distal into the glove as possible then you will get all the radial "pre-compression" that you need, esp when the outer gloves are on
New here, looking at these for my dad. Also trying a DIY route with ERMs connected to a teensy dev board. Haven't started building that yet, but a friend of mine is designing and getting custom pcbs for it. Any updates on durability of the bhaptics gloves or functionality of the app? Did it get updated with more random patterns and a jitter option? Thanks so much to everyone who has contributed to this community. I have been so impressed at everything I have read so far.
I propose a set of categories that we begin using to describe our experiences, not only with the bHaptics gloves but all 3rd party or DIY gloves.
Here are the catagories:
1. Strong responder
2. Partial responder
3. Non-responder - stable disease
4. Non-responder - disease progressing
Why I am doing this? I want PD to grow up a little, the way the field of cancer has. In cancer they know disease can manifest for a variety of complex reasons. They know - before a drug is trialed - that many will not respond - but that a drug can still be a very good treatment for the responders.
Let me give you an example. If some scientist came up with a drug for pancreatic cancer for which 60% of patients did not respond, 10% progressed to worse disease, 10% had a partial response and 20% were strong responders, strong to the point of cure or near cure - that person would probably win a Nobel Prize in medicine. Why? Because now nearly 100% of those diagnosed progress to death. Because in cancer they don't throw out the baby with the bathwater when many are non-responders: they look to see how many people have a strong response, even an exceptionally strong response even in some cases when 90% are non-responders. They investigate what are the hallmarks of a strong responder.
Let's contrast with the dumpster fire that is Parkinson's research. They don't screen very well in trials for those likely to be non-responders. When they analyze the trial they report on how the average person did. They problem is when you average all the non-responders with the responders the signal to noise goes down, the standard deviation and confidence intervals around the main effects go up, the hazard ratio includes 1, and we say the trial failed. I believe most if not all of the ~20 P3 trials in the last 30 years "have failed". Did they fail or did we fail to segregate the non-responders from the responders?
Let's not get sucked into this game of "do the gloves work or not"; "did the glove trial fail or not?", because we all will lose in that framework. Instead let's self-segregate ourselves into Strong Responders, Partial Responders, Stable Non-Responders and Disease Progressing Non-Responders.
I am a strong responder to the bHaptics glove in terms its ability to restore my sense of smell. If you ask about durability I'll tell you 12 weeks and counting. Now I am fully prepared to accept (as we should all be) that a restored sense of smell may not happen for 20, 50, 70% of people who try using these gloves. Let's just accept that and continue to work beside each other in peace. If we start playing the game of who has the loudest voice on this blog - the non-responders or the responders - and using that to decide "does the glove work" - then I guarantee you we all will lose, as PD treatments have lost in every trial that I know of - at least the way we currently talk about those trials.
I am a Partial Responder in terms of daytime fatigue reduction. I am a Non Responder in terms of constipation reduction and these gloves but that symptom is not getting worse, or put another way there is no Disease Progression on that dimension.
I'm not saying that people are at war on this blog - nothing like that is remotely true. It is a very friendly and intelligent group. But there may be a time when a crush of people start using this, or talking about it, or asking about gloves. And at that time I hope we are mature enough to guide people into the possibility that one or another glove may or may not help them - perhaps durably perhaps not - and that we don't engage in a binary "glove works/does not work" debate. Because I see that crude version of the debate coming. I shudder to think of what the press will do if the next Tass trial "fails" to exceed a hard endpoint. I doubt they will say we should do a post-hoc analysis of responders and non-responders.
Please write back if you can think of some amendments to this manifesto that would improve it. Post it wherever you read about new treatments - gloves or anything else. Let's move the whole field out of binary pass/fail mentality - the binary paradigm has consigned our best hopes to oblivion over the past 200 years.
I have Essential Tremors but I whole heartily concur with the need to introduce a scale/classification of response to treatment. In ET, electrical neurostimulation is a promising field but research has shown that not everyone with ET will benefit from this technology and even those who do have a spectrum of responses.
You should also consider the "minimum detectable change"
I can't recommend this book enough. My improvements with the glove are being amplified by the lessons in this book. +the usual disclaimers, I'm not a doctor, etc
Book on understanding and reducing lower back pain
Previously I recommended restorative yoga with glove use. I now say don't this after 3 pm. Restorative yoga, yoga Nidra or non-sleep-deep-rest functions like a nap. And if you 'nap' before bed you may have trouble sleeping. Be careful of doing any exercise with the gloves before bed - you will raise your body temperature and may have trouble sleeping.
One suggestion for newbies: fix sleep, fix nutrition, fix stress management and fix exercise. Improvements from glove use ride on the "rails" of these foundational domains of your life.
I know things suck - I KNOW. I have it. But if you are not sleeping these gloves are unlikely to rise above the noise in your life. If you can get sleep, nutrition, exercise and distress management going in the right direction, you are more likely to experience the benefits of these gloves
These gloves are not your fairy godmother: they will not sprinkle fairy dust and magically transform everything that is not working in your life. If you can't focus on all 4 domains at once then just focus on sleep. Fix sleep. If you don't know how, listen to Andrew Huberman's podcasts on fixing sleep.
Has anyone else had success with strong vibrations on hands or feet but not in "glove" form? My husband and I have been using a massage gun on each other's feet daily for a little over a week. (Not for any intended PD purpose. It just feels good). I have had a significant reduction in my tremors. I am holding the massage gun for 20 min a day and getting the vibration on my feet for another 20 min a day. Not sure it is related but certainly interesting.
Hi PDFighter. Your reply re massage guns is very interesting for me because I have just started using one a few days ago. I suggest that you start a new post on that topic so that we can all share our observations and suggestions.
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How often and duration of the Tass gloves? 
Dr Peter Tass's Vibrating glove for PD
