I've been doing trials with a PWP n LB for past few weeks with my DIY version of the Vibrotactile Gloves.
Background :
The PWP has PD for > 10yr and LB ( lewy body ) for ~ 5yrs and takes many meds.
There are many symptoms - I define as Metrics of Assessment ( MOA ) to gauge the effects ( before & after ) - be it , ugly , bad or good . One key MOA is speech - the PWP 'speech' is not understandable and impossible to decipher and often just " phonetic utterances ". Just did a 35 min session and after that - blows my mind - she spoke !! Even more so - she remembered the name of the TV program !! ๐๐ ๐ ๐ ! Pardon the pun - I am lost for words ๐๐!!!
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NuroMod
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Thank you so much for posting this, NuroMod. Anecdotes such as this one truly gives us hope that the gloves really work. It is just a matter of tweaking the glove treatment with the meds in order to come up with the right combination.
Hi Cgreg - absolutely . I might add that that there was another person in the room who witnessed this - a specialist ER doctor !!. Indeed - I am not looking for 100% effectiveness for each PWD ( person with disability ) but a ratiometric delta - depending on the condition & severity. I work on Essential Tremor trial participants and for someone who has head/neck tremors - a mere 20% improvement ,is huge . As I mentioned previously - there was no effect on Lewy Body but .now ....as they say Patience is a Virtue ! For those using the Vibrotactile strategy my suggestions/tips are :
a) Start with 30mins and go increment gradually.
b) It is prudent NOT to over stimulate the fingers - that is ,do not swamp the pacinian receptors in the first 2cm of the active finger tips/ P -field.
c) That is a key reason why the trial vibros/tactors are of a " plunger " design - cos the asserted surface contact area is SMALL. >> no swamping of pacinian active field but targetted.
d) Another " trick " - control the V ( supply ) to the tactors separately.
e) For those using the ERM methods - for whatever reason - buy a stack of them. Then use a 1.5V battery and SORT them and select the best 8 x that will run on 1V5 with max vibration. In conjunction with V ( tactor , coin motor ) you can now have very fine controlled assertions to the finger - i.e. a poor man's compromise to AudEx - audio exciters.
f) Best NOT to use a full size glove or pseudo glove that is dense. Why ? The thicker the mass of the " glove " the more the vibratory signals will propagate to the whole hand - fingers included ! Thus the ' ideal' glove is a " skeleton ' glove + plunger tactor.
g) Depending on the finger pod design - ENSURE either the ERM/LRA/exciter etc is well isolated from the casing - i.e. have shock absorber material surround the device. Dense " foam/sponge " is great or the speaker noise isolation grade is also suitable.
h) For the ERM users - if you have an oscilloscope - even a cheap $50 kit will do - connect the input of the scope to a piezo element. Then apply 3V to an ERM and hold it VERTICALLY against the piezo element. Bingo ! - you'll see the frequency of the ERM . So , as above, buy 50 of them and select the 8 x fastest ERM s for the glove - small price to pay for an optimised set of tactors. - see photo for my version.
Thanks for sharing these insights! Great to hear. Question of clarification on item B. You said, "do not swamp the pacinian receptors in the first 2cm of the active finger tips." Do you mean to make sure to measure > 2 cm from the tip of the finger to where the point of contact with the finger tip is made?
Hi Neurosmith - good question - so here is one of my design notes for you - trust it will clarify and also elaborate on the other issues re: controlling the voltage which is directly related to the stimulation effects and side effects ๐ฑ!!. The most common issue is OVER stimulation. In this strategy , ironically - LESS is better for starters and is a function of an individual's physiology .
I added the circuit brief as this ties in with my suggestion on sorting tactors prior to use.
Thanks, that helps clarify. Love the illustrations you make! I believe Tass' papers talk about a 5mm diameter contact area with the fingertip. Are you suggesting starting with smaller than that?
Hi - the analogy is exactly like meds. Some folks take madopar and no problems. Others take it and the side effects are worse than the symptoms. So what do I do before running trials with PWP ? My experience with Essential Tremor and Hereditary Spastic Paraplegia has taught me lesson 1 = Err on the side of caution - always. I set up a jig in which I can control the voltage to the tactors accurately and mount the finger pods on the PWP. Then I gradually increase the voltage and monitor the reaction and continually ask the PWP how the feel. I did this will 35 PWP. And guess what ? 2 of them reacted severely with only 2V0 - with tremors in the hand and feet !! Others , no issues even at 3V5 - different people , different physiology. But cos I started very low and slow - the side effect was detected early and most important - it did NOT erode the confidence of the PWP ! Else , one bitten they won;t want to try again . That is exactly what happened in my research with Essential Tremor and HSP. Sorry to digress but it has a bearing on your question in that - you loose nothing by going smaller. I use 3mm and all good. Just press ( not rub ) your fingers very , very gently - do you feel it !! ?? Hardly any depression and you felt the pressure.
Also, in the illustration on the shock absorbers, I assume the purple cross section is some kind of foam padding etc to dampen vibration and discs on top of it are the LRA and contactor and the surrounding is the housing structure. Do I have that right?
This is all very encouraging, it motivates me to build my own set of DIY Vibrio Gloves. However I'm a complete novice when it comes to electronics. Therefore, where should I start please ? Is there a DIY Vibrio Gloves support forum ? Is there an instruction guide for Dummies as what to purchase, how to assemble it all, how to adjust the settings ?
Looked at through one lens, what's happening here is increasing 'orientation' through the tactile / sensation channel- the fingers and hands being a key way we orient to our surroundings, which is essential for safety and calmness in the brain. Orientation, aka the social engagement & ventral vagal pathway of the autonomic nervous system, is what brings the nervous system out of 'freeze'. And yes, easy does it - too much stimulation takes the ns back into overwhelm and freeze :). I'm guessing it's important to have periods of default mode network brain activity, the neutral mode where the brain is able to integrate. If you're interested in all this I wonder whether Steve Hoskinson of Organic Intelligence would get with you (or you could offer to buy an hour of his time) and he could share his perspective - he is so very deeply knowledgeable.
Thanks, everyone, for your discussion of glove design.
Somewhat related: I don't think anyone has yet mentioned this news from Synergic, the company in Oregon that is trialing the gloves.
"The clinical trial is going well, and we anticipate good news mid-year regarding the approval timeline and product release. The folks in our longitudinal trial are showing promising results including improvements in quality of life and independence. We hope to learn if these results are typical or outliers based on the pivotal clinical trial. "
They are both labeled "recruiting" but I suspect that someone just didn't update the page. The first one is supposed to have started in 2019 and the second in 2023. I suspect it's too late for the first trial. The second trial is supposed to have started 2023-07-12. It's for 30 people and in Portland.
I would say "Good luck" to you, but I'm hoping the trial is proceeding on scheduleโwhich might be good luck for all of us.
An interesting feature of the trial design: "This vCR study will include a crossover design, where participants are their own control and receive both active stimulation and sham, aiding in understanding true treatment effects from vCR."
That is wonderful! Iโm happy for you all! Do the gloves help calm the nervous system? If there are no hand tremors what else would they help? Internal tremors?
Hi Good question. Generally speaking , when one under goes neuromodulation ( which the glove vibro strategy is ) - a common (good !) side effect is the calming of the nervous system and puts one in a relaxed state . I found this - back 5 yrs ago when I started work on Essential Tremor. It gives a similar effect to meditation / yoga etc - with one key feature - you don't have to do actual physical exercise ๐๐ ! And good for those who have lost mobility ( in any of the limbs ) for different conditions / reasons.
FYI , if calming and relaxation is your interest, then the PD Gloves is an overkill and probably very expensive for that purpose. Instead a wearable - in this case a DIY version - is just as good - if not better. The photo shows what I developed for Tremor conditions.
Sorry I can't help you cos I have >30+ Parkinsons and + PD/LB and + LB and + ET and + OT folks waiting in line !! And there is only one of me ๐๐. I am designing, building , running the trials, documenting, testing , debugging, updating etc.
You have someone with ET waiting for a vibro glove? Could you please pass on my name to them. I need to discuss the use of the glove with someone who has Essential Tremor. thx
Hi NuroMod. You've treated over 30 people with PD with DIY gloves? Can you share a high level summary of the benefits and results? i.e. what % have seen improvement, etc. I appreciate the top tips that you shared recently. But over 30 patients is likely more than Tass et al have treated so you're insights carry some weight in my opinion. Thanks!
Hi Neurosmith - you have mis read what I wrote ๐. I said " 30+ folks waiting in line " - consisting of the various Movement Disorders I listed - Trial Participants . I am currently working with 5 x TP ( Trial Participants ) - a) 1 x PD & LB ( Stage 4.5 ) b) 2 x PD ( Stage 4 and 4.5 ) and mild LB only c) 1 x PD + ( Stage 4) d) 1 x MSA ( Stage 3.5 ) and severe FOG ( freezing of gait ) .
* The Stage # is an important criteria in terms of what you can and cannot do practically, duration, side effects - yes side effects ! etc - some customisation & tweaking is required to address these aspects
* I am concentrating my trials on Stage 3.5 ,4 and 5 as they need help most.
* Severity of LB is a real challenge and cos of that I am re-designing the controller to be more robust , longer tough cables , 'modular' pseudo gloves for easy repair . Ability to swap tactor types - this is more so due to the various Movement Disorders symptoms with respective manifestation and require different strategy.
* At this stage ( strictly anecdotally and sample size 3 ) - and as reactions vary across a wide spectrum - there appears to be marginal impact on severe FOG . So ? I am using a custom DEFOG device in conjunction with the Glove on the most severe PWP. The design is a spin off from my work in treating Essential Tremors.
* An interesting common effect, amongst the TP is ........................ helping with constipation.
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