Neuromodulation for PD “Glove ++” : Trial... - Cure Parkinson's

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Neuromodulation for PD “Glove ++” : Trials | Observations | Tips | # 1

NuroMod profile image
12 Replies

Where f( trials ) is proportional to f(a) + ……… + f(z) which could include one or more of the following :

1)PD Stage # crucial criteria. Stage 1 ,2 = OK. Stage 3 ,’maybe OK’ BUT Stage 4 and 5 very difficult to near impossible.

2)Variation of PD severity , PD ++ e.g. LB / ET, Idiopathic , Vascular , MSA , PSP etc

3)Prime challenge encountered is duration of session

a)Don’t start with 2 – 4 hrs. Once PWP 'rejects vibro glove ' very hard to reconvince again !!

b)Go slow (30mins ) and gradually increase.

c)This also assist in sudden over stimulation

d)Getting the brain entrained

e) Divide the sessions between morning , mid and afternoon – if need be

4) Side effects

a)Ranges from headache, tremor , accelerated tremor , pain , imbalance, pressure.

b)Hence the reason to Start gradually – err on side of caution and avoid potential undesirable effects

c)Constipation – good side effect

d)Sleepy , tired , lethargic

e)If one experiences any of the above or variation – stop and/or reduce sessions. Then restart.

f)The ‘good news’ is that stopping resets the effects and restarts from ground zero – vector 0 !

g)Effects vary widely across the spectrum for individual physiology

**** No different to takings meds – results : works, does not work, side effects , some effect, allergy ****

Over Stimulation

5) A common denominator is ‘over stimulation ‘ – effectively swamping the brain with too many ‘ messages’

Potential Resolutions :-

a)Reduce session times

b)Divide session times , periodically

c)Control the tactor intensity – this enhancement also enables fine tuning for different PWP sensitivity

6)Tactor Finger Pod design & type option - this had direct impact on stimulation

a)The AudEx ( audio exciter ) is the ‘ best ‘ option , if you can afford, construct, design etc

b)The AudEx exerts minimal direct targetted pressure and smallest contact area

c)The pacinian active field is over stimulated by e.g. using the ERM ( most ) or LRA ( 2nd ‘best’ )

d)Poor vibratory isolation causing propagation across the hand, finger and crosstalk between adjacent fingers - care in design can reduce the ERM/LRA vibro propagation to large extend.

e)Best not to use a full size glove per say. Instead opt for a ‘pseudo’ design.

f)This implies minimum ‘surface’ area consumed by the glove to minimize vibratory pick up

g) Using just finger pods would be the ‘ ideal’ – a balance for User Interface & ergonomics etc

7)General

a)Reluctance to use the glove by PWP– don’t like vibrations. One way is to gradually wean in. Use a pen and tap the fingers gently.

b)Sweating – especially synthetic glove and then attaching and detaching becomes difficult

c)Uncomfortable – some PD folks are more sensitive to sensations in the skin / receptors

d)Lost of ‘flexibility’ due to the wires and often entangled

e)Damage when accidentally pulled off the table – requires ruggerised design/case/cables/connectors - f( PWP Stage # )

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NuroMod profile image
NuroMod
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12 Replies
LittleBigPopit profile image
LittleBigPopit

Do you have model numbers of of the AudEx, ERM, and LRM motors you've used? Any recommendations on driver ICs? I'll have to do my own research on these different actuators and how I can encorporate these into my own PCB designs, so pardon my ignorance right now.

Squarepusher profile image
Squarepusher

One way to know you have over-treated yourself: head buzzing and you are unable to carry on a normal conversation with another person because brain is racing. Remember: replace ambition with curiosity when you first get started.

Squarepusher profile image
Squarepusher

One last suggestion to 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 4 things then just focus on sleep. Fix sleep.

NuroMod profile image
NuroMod

Kanwar Bhutani ( the " poster man " of the PD Glove ) mentioned that even after all the use of the gloves he still does the following :-

- exercise

- eat nutritiousness food

- takes supplements/vitamins

- and uses the glove periodically

Squarepusher profile image
Squarepusher in reply toNuroMod

Right, so let's notice something about a typical Tass presentation: Kanwar has already conceded that exercise and nutrition/supplements continue to be important, and probably were important when he was a candidate for the gloves (I know that second part is shameless speculation but bear with me a moment...here is another speculation...you can't run a marathon unless you are in the 70th percentile of VO2 max)

The next guy wears the gloves and is able to go from an overhead dead-hang to a chest pull-up to swinging momentum that hurdles his body through space where he then catches himself in an over-head hang. Do you have any idea how f**in hard that is. This guy is easily in the 99th percentile of grip-strength of all people (Parkinson's or not) and probably in the 90th percentile of upper body lean muscle mass. But you can't do that unless you know something about the timing of protein intake - which is "nutrition".

Oh, and if you train by overhead lifting or running marathons this alone will help manage your stress levels and you will sleep better

So I don't think these guys appear in the videos as a fluke. I'm not saying they were athletes, but they had a pre-existing orientation towards athletics (Perhaps also the guy whose grip strength is high enough to hold onto a swinging rope after a run an a jump...)

My guess (and this is a shameless projection, and I admit it) is that the gloves worked on those three men for a reason, and probably works less well on sedentary users for a reason (and here I actually know one 'failed' responder from a trial).

Neurosmith profile image
Neurosmith in reply toSquarepusher

You might want to check out this recent interview with Kanwar from November. Provides some context on his background and condition before he started with the gloves and how he got connected with Stanford/Tass.

youtu.be/tIeLt9nPJrY?si=vfM...

Squarepusher profile image
Squarepusher in reply toNeurosmith

I'm not trying to develop a serious theory about the pre-conditions for glove success based on watching someone else's presentation. Still I would say when he is using these gloves during a morning walk he is getting low angle solar radiation which will support his sleep later at night, he is ramping up cortisol production, clearing out melatonin and adenosine and warming up his body - all of which will support sleep later at night. And he may even be increasing blood flow to the brain while using the glove which I believe will only benefit the therapy and overall brain health. So even if he not a supreme athlete, he is stacking all the right behaviors with glove use.

Now, I would further say, knowing a few Sikh men of that age - and again a sales and marketing executive at a publicly trade company - he is at a high socio-economic bracket such that if he is not eating home-made food he is eating well made food at good restaurants. Put another way: a president or vice president of a publicly traded company does not take a prospective client (or even himself on a business trip) out to McDonalds. And that home-made food will not have the cheapest ingredients.

Now I admit, I don't know shit about this guy, really. Nothing at all. I don't know if any of my speculations are accurate. Maybe none at all. Maybe he shops at the dollar store for food

JayPwP profile image
JayPwP in reply toNuroMod

If I remember correctly, Tass has been using the gloves for almost 5 years, but the testimonies are of a very few individuals.

Makes me wonder...

Neurosmith profile image
Neurosmith in reply toJayPwP

Tass has stated during Q&A portion of webinars that the testimonials from the videos aren't fully representational, that those are the people that agreed/consented to have their videos shared. He has said that others, women too, experienced positive results. They just didn't agree to have their videos shared.

JayPwP profile image
JayPwP in reply toNeurosmith

Not sure why would someone disagree if they had benefitted... So in 5ish years we have Kanwar and the dancing guy and the gymnast guy who agreed to be videographed? Any idea about the number of beneficiaries?

WinnieThePoo profile image
WinnieThePoo

There are some interesting points here. My observations

1) There are 2 therapeutic mechanisms interacting when Tass gloves are used. Vibrotactile acute relief (Var), and coordinated reset chronic therapy (CR).

2) CR can be implemented in other ways - primarily DBS in research so far. It is the unique differentiator of Tass therapy.

3)There are many Var devices, including Charcotts train carriages, my ride-on mower, whole body vibration plates, Cue1, putrino lab wristband, ATD, and other tremor devices. The design points referred to above only apply to CR

4) 4 hours a day for 4 months is a massive commitment. Seriously not easy. Probably mission critical

5) The other design features listed describe the gloves used by Tass / Stanford , contrasted with non-Tass simplified implementations (like bhaptic tactoglove. namely

i) exciter as mechanism - lead / lag performance, perpendicular "pin" stimulation, 250Hz frequency operation . Although Tass uses an LRA instead of an exciter it is a very unusual (unique?) LRA which shares those exciter features. Listen to Kanwar describe the "pinprick" feel of Tass gloves

ii) isolating pods / mounts to localise the stimulus

iii) low amplitude stimulus (3:00 to 3:40 in this video

abcnews.go.com/Health/video...

That fits with my experience. The need for precision in vibrotactile communication with the brain for vCR is discussed extensively by Dr Tass in his papers. The simple version is that wrong timing, whether by using the wrong pattern, or by unintentionally firing a bunch of other neurotransmitters with different response times, or in adjacent brain cells can lead to the CR making things worse. Chronic synchronisation instead of desynchronisation.

These design choices and their explanations are well documented.

"The majority of mechanoreceptors of the glabrous skin

of the human hand are fast adapting (FA), where FA I

mechanoreceptors respond to 30–60-Hz vibrations, and FA II

mechanoreceptors to 100–300 Hz (Johansson and Vallbo, 1983).

Conduction velocities of FA I and FA II mechanoreceptors are

in similar ranges (Knibestöl, 1973) but may still be different

enough to compromise the vCR activation pattern. Smaller

vibration amplitudes might be more beneficial for two reasons:

(1) Smaller-amplitude 250-Hz vibrations might stimulate the FA

II mechanoreceptors more selectively, which might be favorable

in case of larger differences in conduction velocities of FA

I and FA II mechanoreceptors; for details, see Tass (2017).

(2) Smaller-amplitude 250-Hz vibrations of different fingertips

might activate cortical representation areas with smaller spatial

overlap, which is more favorable for CR stimulation; for details,

see Tass (2017)."

Squarepusher profile image
Squarepusher

Last suggestion for newbies: keep some water nearby when you get started and some simple carbohydrate, like a lightly salted rice cake. I wouldn't recommend pushing too hard on session duration if you are dehydrated, for example.

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