There's been a lot buzz here and in the general PD community about the vibrating gloves since the Today Show feature came out last December featuring the gloves' developer, Stanford's Dr. Peter Tass. Tass has been on several video webinars talking about the gloves and upcoming trials. Former glove co-developer Synergic Medical Technologies is doing their own trials. Parkinson's patient Pat Riddle has provided us a ring-side seat to his experience with the Synergic's gloves. And, there are several efforts to make DIY version sof the glove while we await the glacial process of FDA approval. I thought it might be helpful to try to capture all that's going on (at least as far as I've been able to figure it all out) and write up a summary. Here's the summary (to date).
Thanks for the updates on the gloves. A friend of mine has helped me make the PD Buzzboard gloves and my wife has been using them for over 2 months. First month was 2 hours twice a day and we have now reduced this to 1 hour twice a day.
Her walking improved within the first week but unfortunately, she has developed cognitive impairment which might be bordering on PD dementia. We keep using the gloves with the hope that if they successfully treat her PD, then her dementia might also improve.
During the interview with No Silver Bullet, Dr Tass was asked whether this may indeed be the case and although he said he could not make a firm statement, he did mention that two of his patience that had cognitive impairment "massively improved". We are hoping that this may be the case with my wife too.
I also asked my friend to make a spare set of gloves which I have given to someone I know with PD and who has a terrible speech problem. After just 4 weeks of using the gloves his voice has greatly improved as has his posture too. He is still making use of a walker frame but has mentioned that his upper body feels better with less pain. Yet more proof that these gloves do work.
Thanks for sharing. It's great to hear results from the DIY gloves as well. I'd love to collect them all somewhere central if somebody hasn't already done that.
I wish the FDA could fast track this non-invasive therapy for those of us that may have to move towards DBS. I WOULD LIKE HIRE SOMEONE TO MAKE ME A PAIR OF THESE GLOVES WHILE I WAIT, COULD YOU PUT ME IN TOUCH WITH SOMEONE?
I live in South Africa and found a friend that is computer literate to help me build the PD Buzzboard from videos posted on YouTube. He had to order some of the components from a company in the USA called Digi Key.
All you need is someone that is fairly good with computers and then follow the instructions on the videos. One of the videos also lists the components that you will need. Just google 'PD Buzzboard' on YouTube.
The total cost, including the courier charges of importing some of the components, was about $150. If you live in the USA it will be even cheaper.
I then glued the small vibrating motors on small plastic clips that are used to cover the finger nails when they are drying after painting them, as shown in the picture. The blue cable in the picture is to connect it to the power supply. Although my gloves are not very user friendly, they do the job. Hopefully, the next generation gloves that Peter Tass's team are developing will be far more practical.
Thanks for sharing! I too am working with a friend on this. We started with the buzzboard, and we are now building a setup very much like you have. I see the electric heat shrink tubing GREAT to keeping things neat. Do you use a 9V battery? Also would love to see a picture on the inside of the finger clip. Our solder connections in there have been difficult to do. We too use the digi motors, though we are considering others. We will get there! What kind of positive effects have you noticed? Is there a document out there that list best practices? OR is it the 2 hours am/pm?
I am 5-7am and 9-11 PM, but in the clinic the 2 2 hour sessions can be as little as 1 hour apart. Also Peter Tass warns that if it is not possible to reduce medication, it is recommended to start with less and build up. However , he is talking about his vibrotactile coordinated reset, which although it was inspired by John Charcots bumpy train carriages, is very different. You would probably get a benefit from just resting your hands on the washing machine during the spin cycle, but it's not going to reset neurons exhibiting excessive synchronisation. As such, it is unlikely it matters what the proper clinical trials are doing - their using entirely different equipment
I had promised myself I was going to steer clear of this, because I start to sound like a stuck record. I remember a friend declining to help me with technical information about balanced power supplies for use in HiFi systems - even though he agreed they were potentially lethal. He felt no need to share - "if they want to kill themselves, that's not my responsibility"
Peter Tass has published openly about his research. I know some of it is stratospherically incomprehensible, but big chunks are pretty readable. His patterns, and frequencies, and timings, and intervals are chosen to try to ring some bells in the brain using just one of the 4 types of tactile sensors in the hand. He wants to do that, because if you set off all the bells in the shop, even though you are playing some of the right ones, the message gets lost in the noise. So, very specifically he uses a stimulation which uses an 8mm diameter rod, perpendicular to the skin, starting 0.5mm into the skin (ie pre-squashing it by that much) with a rapid rise and decay signal at 250Hz at -30db relative to 1mm movement.
Just resting your hands on the spin dryer, though its even cheaper than the buzzboard, and may well make you feel good, is not following Peter Tass's ideas for a vCR therapy.
Thank you for the summary. I too have been following the Stanford and Synergic developments with great interest over the past seven months. My sense is that Synergic has gotten tired of Stanfords(Dr. Tass) continual delays to bring this device to commercial viability. At the end of the day Dr. Tass is a scientist who has never effectively run a business nor has an inherent need for speed to market. He has admitted on one of his previous videos that he really does not have the staff to respond to inquiries as I am sure that funding is constrained at the University level without any revenue in near term. He and Stanford have received considerable amounts of grants/funding ( I am assuming) which is what they historically rely on. Synergic is essentially a venture capital fund that needs to finally see a way to make money. I am not sure what intellectual property Synergic has as a result of there initial involvement as an original sponsor of the research project.
When we listen to the CUE1 presentation next week you will quickly understand the difficulties of bringing these deceives to market (outside of the regulatory hurdles). They have a supposed waiting list of 60,000 and they are only able to produce about 500 per month which would take 10 years to build out their current backlog which is mostly in the UK and Europe. While the CUE1 device appears to be working for some people it does not appear to deliver long term results like the gloves has purportedly done.
So the bottom line is that while Synergic may get FDA approval next year, scaling up their company both internally and externally with a device manufacturer will likely take much longer. My sense is that the waiting list for the gloves will be much longer than the CUE 1 device as well.
These are just my thoughts as an anxious bystander who also wants these glove asap.
Peter Tass may be a scientist who never effectively ran a business, but Stanford is a substantial US institution with competent lawyers. They are unlikely to casually disregard a potential substantial revenue source to fund their future research and academic ambitions
I agree that Stanford is a very credible research institution. My real point is that Dr. Tass has been working on prototypes since 2018 and is still apparently working on an updated version. The original estimated kick off dates for resuming trials was Spring of 2023 now it is Spring of 2024? I say quit tinkering and get on with it. Hopefully Synergic has covered there bases as they have already commenced trials.
I think we are all frustrated with any delay for any therapy. I first saw the video of Kanwar Bhuttani shortly after being diagnosed in 2018. I was hoping for an immediate therapy then. Stanford have so far registered one trial , of 2 years duration for 10 participants without a placebo control. I'm not holding my breath.
Peter Tass in his various presentations has indicated there would be movement - "soon". It's now mid-July. Whilst I would love to be wrong, my experience of Parkinsons Disease has been exciting prospects taking forever to develop. OK - covid didn't help, but Exanatide and Jeanne Loring stem cell transplants would be 2 others from my time of diagnosis we are still waiting on 6 years later. Jeanne Loring, who in 2018 gave the impression that trials would be "any day" for her group of patients, still hasn't carried out a single human trial.
It's hard to say what Synergic's position is. Presumably they have lawyers too. But that patent covers their intended use... Like I say, I'd love to be wrong, but my 6 year experience of PD is "don't hold your breath".
I'll make a few observations about the therapy in a separate post
Regarding the glove treatment as a viable clinical treatment, I personally think it is likely to be significantly beneficial for a significant number of PWP. From my experience so far, of glove experimentation and a BIOGEN clinical trial - and in particular a 4 day spell on my own, while Sue was at a "not the hen night" weekend for her sons wedding - and I could do 2 hour spells in bed
There is a massive placebo effect in PD which hugely complicates assessment on an n=1 basis, and the gloves will be no exception.
Even without a placebo effect fluctuations in PD symptoms and disease progression, I find bewildering
I haven't yet produced gloves I am completely happy with. We are poised now - the only component I am missing for Mk4 is some resistors, due in a week or so.
1.5 hours is not 2 hours
2x1.5 hours is not 4 hours. There is a big difference in acute symptom relief between 1.5 hours (which I have mostly managed) and 2 hours which I am determined to do better at.
1.5 hours or 2 hours are a LONG time. Especially if a fly keeps landing on your nose, urinary urgency sets in, or you get hay fever. This may be non-invasive but it's tough to do properly. And I think it makes a big difference
The sessions in bed allowed me to try to get to sleep, instead of "just browsing the web" or full scale attempts to work using my thumbs while wearing the gloves. Being in bed, still, meant the vibration point wasnt slopping about over my finger tip, or lifting altogether, but staying in the same place. This is critical (in my limited experience)
It is accordingly not surprising if different people get different results - ability to clock a proper 2 hours, with immobile vibration points is important
Low intensity works best. Very much so. To the point where I am almost always doing an equipment check after a session, because I'm not sure I can feel anything on some fingers
Keeping the vibration point still is not easy. We are using an elastic 20mm wide strap , adjustable by velcro. Too loose and it slops about. Too tight and your fingers go numb and white. Neither are good. More than anything this aspect of the design is why I am waiting for the mk4 glove before taking anything too seriously.
I think a 2x2hour - full treatment time - stationary vibration point day, is worth more than half a dozen "about an hour and a half , trying to browse the web" sessions. Better glove design will produce better consistent results, whilst hopefully being a bit less restrictive. On the 2 or 3 occasions so far when I have managed back to back proper 2 hour sessions, I've felt like a million dollars. Which contrasts with the "quite nice" experience messing about with 1.5 hours
(Note - these comments are personal. I had been on the point of needing to increase medication, or tolerate periods of bothersome symptoms. I am hoping at the end of several months to cut treatment time. Dr Tass has suggested people may either reduce medication or cut treatment time until they get used to the gloves. Personally, no medication reduction and full 2x2 hour sessions appear to make a big difference. Lesser times still help a bit, but I am now conscious of how much I want to stop quitting early.
It's a learning curve. The whole glove making experiment (now carried way beyond the original low budget tentative dabble) has been a learning curve.
In that regard, I am grateful to Dr Tass for the substantial amounts of information made public about this therapy by him and his team
Someone needs to bring money to the table to finish development and scale.
Have there been any full double blind trials on the gloves? My neuro thought that there had not been any published yet. I would think that this is a prerequisite for FDA approval and attracting real investment. There will also not be much investment in countries with strong IP laws (NorAm, EU etc) if there is substantial patent litigation exposure.
At least looking at the open sourced versions, production volume should not be a real issue. There are many contract electronics engineering and manufacturing operations that can help miniaturize and scale production. Producing thousands of units a month in a contract operation is very achievable with a lead time of a year or less IF the fundamental design is fully finished.
However, no one will underwrite that inventory expense if the device is not proven nor will high quality devices be widely available if there are threats of patent infringement.
In the interim, in other industries, open source DIY has proven to be an important market driver to bring products to market faster, promote widespread innovation, apply pricing pressure, increase the threat of competition and improve transparency! Think drones, 3d printing, wifi routing and mesh, Linux and operating systems etc.
No double blind trial. No placebo control yet, although the Synergic trial, which I haven't found listed, appears to be trying a placebo control. Really there has been one short trial of 6 people and another of 3.Dr tass would appear to have had some limited clinical experience beyond that. But a handful
both say they are recruiting but in Pat Riddle's latest video that dropped this morning he mentions flying up to Eugene to have them fix his gloves and mentions that their trials are full and that they are swamped. I reached out to the Portland trial last week to see about getting in but we're not in the Portland area and we never got a response back.
I reached out also to Synergic in early June and got the reply, "We are starting to enroll patients for a study with the gloves at OHSU in Portland, Oregon. Participants have to live in the local area to join the study. We are also enrolling patients in a study we are doing in Eugene, but the study is full although not everyone has started yet."
Tass has mentioned in recent videos that they (Stanford) have lined up a really good technical partner with experience to get the gloves to market faster once they are approved. An article on Forbes a while back mentioned that Google co-founder Sergey Brin's foundation was key in getting that partnership lined up. So, Sergey Brin with Google, a billionaire who's mother has PD, I think would qualify has someone bringing money to the table to the gloves to market fast once approved.
It is possible that the delay is caused by Stanford's attempt to secure it's intellectual property ownership by means of a patent which is currently pending (possibly based on the technology for the next generation of gloves) . The fact that Synergic is currently conducting clinical trials with the gloves would have alarmed Stanford's lawyers about their vulnerability in case of a patent war with Synergic; this would explain why Dr. Tass has been on a publicity campaign because it would establish him as the "creator/originator of an invention". Let us hope that a patent war will never materialize or else it will mean years of delay before we get our hands on the gloves.
I agree. I think the new IP is the current delay. I have to think that Synergic has some kind of license to use the original algorithm, otherwise it seems a cease and desist order would be in play to prevent their trial. It seems obvious from Tass' comments that they have somehow modified their algorithm (and perhaps hardware as well), post-Synergic era, and that they're waiting for that IP to clear before proceeding. Damn shame that thousands of people have to wait for a potential game-changing treatment just because of IP legal issues (if we're correct in our hypothesis).
I think Synergic may not be continuing to give out their gloves because I have been emailing them for months and they certainly have not contacted us to offer us the opportunity
Any one who has worked in the management of a company that is doing research and development of new equipment or process will tell you that very few projects result in production of successful equipment and those that do continue to cost large sums of money to refine and patten and all the insight and knowledge of a great idea will not bring it to market without money. Pattens are often easily broken and the competitor does not spend large sums of money on blue sky but instead waits for others to develop a new concept then relatively easily improves the design slightly and makes a much cheaper version that may not be as good but is successful in becoming the key supplier .
I have a fair bit of experience of working with innovators , who hold patents, and have seen the project taken to market. For sure it takes money to bring something to market. But Stanford have enough for this. The technology of the current glove, the one that featured in the tv news that got everyone so excited is pretty straightforward, and developed. The patent concerns the concept (it can't be otherwise, of course). It needs FDA approval to be sold as a medical device. That needs trials.
If it works. If this were a drug we'd all be rolling round on the floor - a study of 3 and a study of 6 people. Not blinded. I could find you 6 people who's PD dramatically improved by changing the brand of beer they drink. Personally, having used it properly for a month, and on and off for 3 or 4 months, I'm convinced by the acute effects. And hopeful of the cumulative effects. Moreover, I think Peter Tass and Kanwar Bhuttani are genuine people who I trust.
But - "if it works". "it" is a huge subject with potential for better and better. Peter Tass has slightly explored a couple of his ideas and had good enough (very small number) results. He is clearly keen to explore many further ideas and refinements.
All of us with PD want anything that works 3 weeks ago at the latest. Tomorrow is much much too late. We're also a bit inclined to assume it works and not wait for the testing. We both know most exciting hopes in PD bomb. But there were a queue of people waiting to queue-jump the outcome (look at Ambroxyl, Exanatide, Buntanetap for recent examples of trials people wanted to get on, to queue-jump a sure-fire thing - which the form-book says won't work ). I'm not being sanctimonious - I got on the SPARK trial, got a urology referal to take Doxazosine, and have made my own DIY gloves to queue jump "remedies" - which may not work. If you've got PD you want any worthwhile help now.
What's needed is the current version soon, so we can all get some benefit asap, and ongoing development of the really super-top version, which will do so much more, for those people using it 5 to 10 years from now.
Synergic look like the fastest option in town for the "quick and dirty". Maybe Stanford will licence the concept to them for a royalty. They have 2 trials registered, both stating their expected completion December 2024 / January 2025. But both only with 30 participants and some pretty whiffy blinding and placebo control. If the trials are sufficient for authorisation, if they find a benefit from using the gloves with acceptable safety and tolerability, then maybe they can have the product on the market for the summer of 2025.
"that long"? 2025 looks like being interesting. Maybe gloves. Exanatide phase 3 will be finished and the one I'm most interested in, risvo, should finish phase 2. Probably at least 3 years after that before market. It's a good job I've only got a multi meter and soldering iron in the cupboard. I'd be dangerous with a chemistry set. Although not as dangerous as some here
I have built a couple sets of gloves. They do help. This nis my first time on this sight. Its been a long day so I'm calling it quits for the day. If you want to hear more about the gloves another day let me know another day at this point i am looking for people who have worked with MMS I am excited to hear from othrs who have this crap
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