Any updates from vibrating gloves users?

[saraoutwest]

There were quite a few DIY glove pioneers out there that must have them up and running by now! Any feedback? There was such excitement and action few months ago….and now you don’t hear much at all. Do we assume this is not a good sign?

[WinnieThePoo]

Far from it. I'm waiting for some cables due today and then I will update. Provisionally. I would note that the vast majority of the DIY appears to be the simpler erm tactors which are fundamentally NOT what peter tass has used, although several of those also report some benefit. Now that I have a "proper" pair, I am struck by how different they are from the earliest efforts.I too have been a bit surprised and disappointed not to read much from the other serious DIY makers.

It is, or at least for me has been, a learning curve. So maybe others are still refining their designs. 4 hours a day is a big commitment. Even more so if the gloves are uncomfortable and or having only modest effects.

And it's confusing working with this bloody disease. I have been "no glove" for a bit over 3 weeks prior to Sunday, and absolutely rigidly stable with my medication, and my symptoms still varied considerably from day to day.

I also hope to lend my proper gloves to my irish friend Jim when he's over here for the Quillan criterion in a week's time. Jim is a lot further progressed than me.

But far from dead in the water

[saraoutwest in reply to WinnieThePoo]

Great to hear. I guess it’s a waiting game now. Fingers crossed

[johntPM in reply to WinnieThePoo]

WinnieThePoo can you please explain the difference beween "erm tactors" and "a 'proper' pair". Thanks John.

[WinnieThePoo in reply to johntPM]

I should add that proper gloves for me also means a set that have carefully made custom narrower tactor housings, and are accordingly more comfortable and more precise. Much more precise

[WinnieThePoo]

ERM refers to the type of "tactor" or vibratory device used in the gloves. "ERM" is "eccentric rotating mass" , a weight spinning round in a tin can, which produces a horizontal shaking vibration (like a mobile phone silent alarm). Peter Tass uses a custom built "LRA" - linear resonant actuator - which is a design similar to a loudspeaker - using a coil of wire and a magnet to produce an "in and out" motion like a pneumatic drill. (A loudspeaker has a fixed magnet and a moving coil. LRA's have a fixed coil and a moving magnet). The key is to produce a "squashing" vibration, compressing and decompressing the skin, perpendicular to the skin. The ERM devices tend to have a nominal resonance of 170Hz whereas the Tass gloves are at 250Hz.

So my gloves copy Peter Tass design principles and produce a controlled 250 Hz perpendicular vibration which is a 0.025 to 0.05 mm movement around a 0.5mm resting skin compression.

Other forms of less targetted vibration probably produce some effects, like charcotts train carriage and the cue-1 device. But all of the stanford clinical experience and all the mathematical modelling was based on targetted FA2 stimulation

Peter Tass decided to focus on the FA2 "pacinian corpuscle" cells to signal his coordinated reset patterns because of their precision. To do this he specified a tactors which compresses and decompresses the skin, at low amplitude at a frequency of 250hz.

The data sheet attached to this paper discusses some specifics of the device they made for that purpose.

ncbi.nlm.nih.gov/pmc/articl...

[WinnieThePoo]

Ok. An interim report - heavily prefaced by my previous comments that this is a deceptive and variable neurological condition, and I might well find it all reverses tomorrow.

The cables arrived. And work. Anathema to my HiFi experiences, but they do the job here. Mrs WTP is doing a bit of final sewing, and I am 3d printing a housing for the resistor block. I didn't use the gloves last night or this morning because I couldn't finish wiring them up ( several problems, including 1 strand on the 8 way cable being dud). And, I am aching and stiff, and very keen to use them tonight.

No Kanwar Bhuttani - he appears to be the only person to arrive in a wheelchair, and saunter up the office swinging his arms the same day. For him, and for everyone else, the benefits build over time. Peter Tass is clear on that point. And as my wife pointed out, I couldn't get a benefit like that, because I'm not that far progressed in the first place. Which is why it will be interesting if I manage to lend them to Jim for a couple of days next week. He is more than 12 years since diagnosis, and struggling with festination, dyskenesias, sleep disruption and other issues.

For me, in no particular order, I smell more things, my constipation is greatly improved, my arms swing normally when I walk, I don't drag either foot, I can bend down to do up my sandals normally, I sleep better, right through the night, I have more energy and focus during the day, my tremor is diminished to nothing, I don't shake when I turn over in bed at night, I am much less slow in my movements, my frisbee throwing for the dog is improved out of all recognition, I don't fall asleep watching the telly in the evening, and giggle at comedies (Mrs WTP observation). Mostly - I don't feel like I have Parkinsons Disease. At all , really. And immediately prior to starting the gloves I was struggling badly with that odd sensation in my leg, where I could never get it comfortable, or it just moved and fidgetted. I couldn't find a comfortable position to sit for any length of time, and particularly couldnt get comfortable in the car.

This week? - I haven't even thought about it. I realised that yesterday. Whereas previously I was often thinking about what was getting worse, and how I might fix it - this week, I just haven't had Parkinsons.

Hopefully, now the gloves are comfortable and practical, and we have worked out a routine, I can get stuck into a 3 or 4 month session, before dropping down to a maintenance regime, and continue to just feel normal

[JacksMomTX in reply to WinnieThePoo]

WTP! What a great interim report! This is so wonderful to read about. Keep us updated as you work with your more precise tactor set!

[Ethin in reply to WinnieThePoo]

Sounds wonderful. Many thanks for sharing and fingers crossed that these benefits will keep accumulating!

[WinnieThePoo in reply to Ethin]

Thanks. Might be placebo. Might be coincidence. But it is what it is. Hopefully we'll hear from a few more glove users

[Ethin in reply to WinnieThePoo]

Funny though: just last night when watching television while wearing the bHaptics, I also noticed myself giggling, which I hadn’t done in quite a while. For whatever it’s worth.

[WinnieThePoo in reply to Ethin]

Another oddball, unexpected possible effect. Sue came with me to walk the dog this morning, and because "The chasse" were shooting wild boar, we avoided the easy stroll around the village, and because it had rained we avoided the intermediate vineyard walk, so we did the tough "proper" walk - aka Anthony's walk. This ends with a 300-400m really steep climb, which gets near vertical for the last 50m. I haven't done the walk recently because I've been busy (it's 15 minutes longer) and because tbh I've struggled at the end, and started to wonder if I can make it.

Today I glided up effortlessly - hardly out of breath, and MUCH quicker than any other time I can remember. It's not because I'm fitter - quite the contrary. I think it was because I wasn't dragging PD up the hill with me.

[saraoutwest in reply to WinnieThePoo]

sounds very positive! Fantastic news. Thanks for the update. Can’t wait to try the gloves but I have no idea how to go about it. I’ll have to wait until they become commercially available I guess

[Ethin in reply to saraoutwest]

One should perhaps mention that there are _some_ vibration gloves that are commercially available: bhaptics.com/shop/tactglove , and members of this forum have kindly provided coordinated reset paradigms for them (e.g., github.com/orbitalcircuits/... ).

HOWEVER, these gloves are quite different from the original Tass gloves, as well as many of the DIY vibration gloves, in terms of the kind and frequency of vibration they provide. (Their vibration frequency is well below the 250Hz of the Tass gloves and their tactors are less focal than those of the original gloves, so they are not as optimally exciting the Pacinian corpuscles.) Nonetheless, some of us using these gloves still feel that they may provide some benefit -- but any more confident statement about this would require a more systematic and objective evaluation.

[WinnieThePoo in reply to saraoutwest]

I think it may be a while yet before they are commercially available. Peter Tass and Stanford are working on a much more sophisticated glove which is likely to incorporate a feedback mechanism. They have registered a trial which is for two years only 10 people. It is hard to see this glove being available in less than two years and the favourite Parkinsons five years seems perhaps the most likely.

the glove actually used by kanwar Bhuttani, Pat Riddle and others is being tested by Synergic Medical Technologies, who have FDA fast track for approval, and are clearly very keen to launch the glove as quickly as possible. Possibly as early as the beginning of next year. Except that the glove would be a clear breach of patent rights held by Peter Tass and Stanford. Probably not going to be straightforward.

The Bhaptics design referred to by Ethin is inexpensive and available now. However, it is not just a question of stimulating Pacinian corpuscles less well. It's complicated, but it's more a question of stimulating too many other nerve cells and causing confusion. It may be that this provides acute relief for some symptoms in a similar way to whole body vibration or the charcot train. But it is unlikely to result in the progressive de-synchronisation of neuronal networks, and may lead to increased synchronisation.

In the discussion section of this paper

ncbi.nlm.nih.gov/pmc/articl...

the paragraph headed vibratory displacement effects, it explains one aspect of this risk

"Therefore, strong stimulation reduces phase shifts between the rhythms of individual subpopulations and reduces acute desynchronization effects."

This is my limbo effect. The precision of the new tactors allows you to ask "how low can you go?"

[Stillstandingstill in reply to WinnieThePoo]

Not another 5 years! ☹

[WinnieThePoo in reply to Stillstandingstill]

When you've been around a while...

[bbc680]

I finished my gloves based on the youtube how to (they use the phone tactors) and was seeing some results (mainly my RBD calmed down a lot as reported by my wife. Then I went to the local clinic for a Covid test as I felt horrible, they sent me to local ER and ER put me on a patient transport plane from Grand Junction, CO to Salt Lake City within an hour with a leukemia diagnosis -WTF?! After three months they sent me home because I got covid and they didn't want me in an immuno compromised hospital. Have to get back to wearing them now...

[WinnieThePoo]

So, they are portable a bit

New gloves and a glamorous model

[WinnieThePoo]

The kit

VCR gloves and electronics

[WinnieThePoo]

The whole glove

The whole vCR glove

[Ethin in reply to WinnieThePoo]

Looks like they’ve come a long way - very impressive!

[WinnieThePoo in reply to Ethin]

Thank you. It's been an adventure. I think it's just tinkering now...

Until I decide to look at SVS...

[WinnieThePoo]

The connection end

Glove connector

[WinnieThePoo]

The tactors

Glove tactors

[WinnieThePoo]

Unpoppered!

Glove tactor holder open

[WinnieThePoo]

Unvelcroed!

Tactor revealed

[WinnieThePoo]

They are probably not as difficult to build as you imagine. Mine are a slightly odd way to skin the cat. I am reminded of the story of the tourist lost in the middle of the Irish countryside asking a local for directions to Dublin. (in a thick Irish accident) "Well now, to be sure, if I was wanting to get to Dublin, I wouldn't start from here"

The connectors on the wrist, were with a view to going solderless - and although it would be klutsy, you probably could do the resistor board solderless. But there's no getting away from soldering wires to the exciters that I can see. And they are delicate and fiddly. That said, I have PD and no vision in my right eye, and I only broke 1 out of 8 (or 9). The trickiest bit is the glove making itself - and I delegated that to my beautiful assistant.

There are a few people I think producing more efficient "signal boxes". Mine is really a bit quirky, although quite flexible, and a simple "buy the bits and wire them together" build. The resistor block wouldn't be required if a simple 4 - channel amplifier were built from 3w modules, preferably with individual gain controls on each channel. But my 4 channel 50w amp is easy to use and "off the shelf"

It's fairly expensive - especially compared with the Bhaptic option. Probably around 800 euros for a pair. It would be a bit cheaper if you don't want portability (the batteries were about 100 euros). Particularly if you already have a 4 channel sound card with a computer. That said, I expect the Synergic glove would retail at around $5000 even if there is no significant "patent premium". The C2 tactors are about $300 each, so 8 would be $2400, putting the bare parts cost at about $2500+. So less expensive than an official glove. Of course, it might be possible to get FDA approved gloves covered by insurance which would mean they cost less. When they are eventually available

It takes a fair bit of time - but there is no particular skill or expertise required (if you can use a sewing machine!)