Where's it at? It was supposed to be available this summer.
Can Parkinson's patients get a glove?
For now, the glove treatment is available only to Parkinson’s patients participating in a clinical trial of the device that started Aug. 1. Tass is also working with an industry partner to gain U.S. Food and Drug Administration clearance for the treatment, which he hopes to have by summer 2023.
I’d like to know too. All seems to have gone quiet on that front
I was the 2nd patient who went thru the trials and still use the first generation glove which has been working for me.
The latest from Dr. Tass as of last week is that the next generation of gloves will be available for trials in November. I’m hoping to go to Stanford in November to try it out. Stay tuned.
Ksbhutani12, did it help reduce or stop the tremors?
Yes it did but my issue was more rigidity
There is another trial (2 trials?) of the 1st generation glove which Synergic have been carrying out. It should have been due to complete by now. I have long had a feeling that Synergic, who fell out with Peter Tass and Stanford, may not have properly understood the device and are getting mixed results (mostly bad). If they complete their trials they face potential patent infringement legal action from Stanford. But, potentially, they would be the earliest to market.
NCT04877015 should have finished in October 2022 - but has no posts since 2022 (and no results posted. So Synergic have a history of trials not delivering as originally promised
NCT05881460 appears to be the current Synergic sponsored trial and is due to complete in January 2025. So, subject to patent issues, early next year is possible for commercial availability of the glove. Probable price $5000-$10000
Stanfords own trials, NCT05545826 is due to start in April next year and finish in October 2027. So the new gloves Kanwar may be fortunate enough to see next month, are unlikely to be available to buy for another 3 years. Of course, if you are lucky enough to live in California and can get on the trial, and don't get the sham treatment, then you might get to use the Stanford gloves next year
"Not long" has never been very convincing - which is why some of us have chosen to build DIY gloves. I have now been using mine for over 2 years. At the time of deciding to build - there was much hope that gloves would be available to buy "soon". I said at the time that I would think in terms of 5 years. This was my post from 2 years ago
healthunlocked.com/cure-par...
Spot on
WinnieThePoo, Thanks for that good info. How are the DIY gloves working for you? Have you noticed any improvements in the tremors?
The gloves have been a life-saver. I use them for 2 hours a day in the morning. If I skip a day, or worse , several- quite apart from any symptom detail - I feel shit. There seem to have been a lot of posts recently about end-of-life and depression, and being severely impacted. When I don't wear the gloves - I find myself endlessly obsessing about how tiresome PD is, and how tired and stiff I feel, and generally being a victim of PD. When I get back on the gloves, then I realise just how huge the difference is - I feel good. (I knew that I would, babe!)
So yes, tremors (which have not so far been too big a problem for me) are reduced. I swing my arms naturally when I walk, don't drag my left foot, feel less stiff, don't get dystonia (at least nowhere near as much). They are not a total solution. I still take Pramipexole and Sinemet, and even then can have moments when I have a resting tremor (for about 5 minutes earlier this morning). It may be that another period of 4 hours a day would help more now - and maybe I'll try. But it's not easy. The gloves are fairly restrictive and 4 hours is a bloody long time.
My wife had previously felt that they were a bulky nuisance for air travel and asked whether I could manage without them for just a few days. We did it 3 times in total, and it was a disaster. All the usual aches, pains and tremors, very poor tolerance of the cold (violent shivering and unable to get warm), and slowing down to the point almost of festination. In the queue to get on the plane, I had to sit down - and if they had wanted to board in the next 10 minutes, simply wouldn't have been able to get on the plane. So now, Sue INSISTS I take them, and an emergency repair kit, with a few spares. (I have still not caught up at work, and so not built a brand new robust pair. Hopefully any day now - I am getting there)
Bravo WTP,
keep telling us your success stories with yours vibranting gloves.🧤 🧤
Thanks!
success stories on Parkinson's disease are the only thing I would like to read on the forum right now.
we need it so much!
Ciao!
Gio
That's great news. Thank you very much for that explanation. I have a DIY pair myself. I do not get much relief from the tremors (predominately on my left hand). Since I work from home, I do not take my PD medication (C/L) - only when I go into the office. The gloves do have some benefits for me: they relieve a lot of stiffness and rigidity. I also sleep better. I'm not sure if my DIY is optimal. I think I need a more appropriate frequency for my body vs what Dr. Tass recommended. Is that something you had to do, or are you using the same vibration frequency stated by Tass (github file from PDBuzzboard)? Also, I gave up 2 hours in the morning ( I still do evenings/nights). Essentially, I sleep with them, and when I wake up, look at the clock to see if I've reached 3 to 4 hours. At one point, I was over-stimulating myself by doing 5 to 7 hours at night.
I use 250hz the idea is to get just one type of mechano-receptor to send a focused signal to a local spot on the brain.The problem with the buzzboard last time I looked was that the erms are not very fast at stopping and starting. And to get a clear rather than blurry signal you need a 100ms pulse. 100ms at 250hz. Not half that time getting up to speed and a over-run when it's supposed to finish
My experience completely aligns with this. As long as I have my 3+ hrs of glove time at night, I feel good. If the session is much shorter than that, or if I miss the session entirely, I am much stiffer the next day.
I wish the effects would be more longer-lasting and not so strongly depend on the daily input of glove time, but if that’s what it take, I am happy to continue with this routine, as I am feeling much better now (less rigor, less dystonia, much more mental energy, at lower doses of L-Dopa) than a year ago before starting vCR.
I am so glad to hear about your positive experience with the gloves, Ethin. May I know which type of gloves you are using?
I started out on bHaptics TactGloves, which I am still using occasionally when traveling, but now I am mostly on DIY gloves with the same kind of tactors as in the original Tass gloves (which are more precise spatially and temporally than the ones in the TactGloves). I experienced benefits from both systems, but perhaps it’s important not to expect the drastic and near-instantaneous improvements that were reported for some of Tass’ patients. In my experience, improvements have been slow but steady, and are still ongoing. Key is regular use: every day, for as many hours as you can manage (but ideally more than two hours).
Hi Winnie. I was wondering what the approximate cost was to build your gloves?
It depends what the 3d printing costs and if you have to pay for soldering and sewing. I'll look at a proper costing this weekend but off the top of my head 600-800 dollars
What do you think it is that Synergic may have gotten wrong? After all, they have used the proper tactors and I’m certain they also used the proper stimulation sequences that Tass established. Maybe they got the intensity wrong — too loud?
Yup too loud
For the record, I am a current participant in the Synergic trial. I learned about the trial from this forum last winter and contacted the researchers (since I live in the area), was admitted into the trial this summer, and just got the gloves a few days ago. It’s my understanding that I represent approximately the halfway point among the 30 ultimate participants. I won’t be done with my part until the end of February, so it looks like they still have a ways to go, unfortunately. I’ve been spending the last few days getting used to the gloves and to the significant time investment of four hours a day in two hour blocks.
Thank you for the update on Synergic. Thats interesting. Based on what Dr Tass says in the video below they may have, a more expensive , glove commercially available a couple of years before Stanford do.
I hope they work for you
Thanks. And for the record, we really appreciate your posts about building the gloves. My husband is working on producing a set of DIY gloves for me no matter what happens with the Synergic trial—if the gloves work, I will still have to return them; and if they don’t work, perhaps a variation on the vibration pattern or intensity will work for me.
recently I watched an interview/Q&A of Dr.Tass by a group called"Training Wheels Off Parkinson's Support Group". Search YouTube for Dr.Tass and watch it or just skip to the Q/A at the end which should answer some of your questions.
Cheers, Craig
youtu.be/_gmdfrkW2oA?si=bm9...
is this one?
Because the link doesn't work
yes
yup - Dr Tass reply about interaction between dopamine and vCR fits my experience. I have posted elsewhere that my dosage level is a function of a blend. Put simply, i could reduce (and did reduce) my levadopa by using the gloves 4 hours a day. But it takes 30 seconds to take a tablet - and 2 hours to do another 2 hours. And at the moment, i prefer to save 2 hours
But, I am going to try going back to 4 hours... when I catch up work - soon
For me, vCR and dopamine have somewhat different effects. vCR relaxes me and reduces stiffness, but it does not provide physical strength the way dopamine does. If I try to go swimming without dopamine in the morning, I sink and nearly drown. But 100mg C/L make all the difference and remind me of how pleasant physical exercise can be.
Tass has stated in discussions that vCR can substitute for dopamine. But in terms of the supposed mechanisms (vCR reducing pathological synchronization particularly in the beta range), one would not expect this to be a perfect substitution. Pathological beta may well be one reason for stiffness/ rigor and maybe tremor, but it is by far not the only consequence of a lack of dopamine (not to mention all the other facets of neurodegeneration that come with PD).
This may sound arrogant (ok, it is arrogant) but I understand and endorse Dr Tass answer about DIY gloves. If you read all of his published research, there is a lot of (maybe boring) detail about how this is delivered. And a lot of discussion I have read on various forums, is, to be kind, dangerously innovative. A lot is full of crap - for which the kindest interpretation is that they want to pioneer a new (simpler) way and bypass thousands of research hours. And at best, thats useless. And often, it may be doing long term harm.
So, I have to understand this is all unproven and risky, and may be harmful, or at least a waste of time and money. Like taking Exanatide for the last 3 years (not me. but others have, and I understand why)
But I also understand the doctor / patient difference. As I say to my neurologist. "You see a lot of people with PD for 30 minutes twice a year. I live with it 60 minutes an hour, 24 hours a day, 365 days a year. And nothing you are doing for me is slowing its progression"
So Dr Tass advice of "don't do DIY because it may be flawed and even dangerous" has to be right. But his tested and approved glove wont be available for at LEAST another 3 years. Could easily slip a year or two from that. So if I had waited for Stanfords glove I might have waited 5 or 6 years. As a 365/365 type 5 years is a lot of progression which might have been prevented. And a lot of shit to live through.
So I opted to innovate as little as possible, and to understand as much detail as possible, and copy as closely as possible, every aspect of that detail. To minimise risk
If anyone is thinking of building gloves, I had an idea yesterday, partly inspired by @Neurosmith for a simpler version with much less soldering. I am ordering the parts now, and realistically it could be in use by Christmas. If it works!
Morning Richard, really happy to hear it’s working out with the gloves. What’s the new idea?
4 of these - 1 on each glove and 2 at the new amplifier amazon.fr/gp/product/B07YY6...
So the only soldering is the exciters themselves. And most people can probably find a friend, local phone shop, school or college, who would solder 16 joints for beer money.
Then , replace the amp and resistor box, which was always intended to be a temporary prototyping solution, and is fairly absurd , with an amplifier made from a 3d printed case and
4 of these fr.aliexpress.com/item/1005...
And some plug in connectors
amazon.fr/gp/product/B01M59...
amazon.fr/gp/product/B004HT...
And my 12v battery as the power supply (although I'll probably use a 12v in socket so it can be powered by the battery or a suitable integrated 12v supply.
Should be really easy to just plug together - if it works!
Please keep us posted on how you get on
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The way things are
