i just finished creating my own DIY Tass gloves , i am using the cheap vibrators sold on amazon , today i did the first session for one hour , not sure how to track if there is any improvement.
in my version 2 planned to start in few days , i will use better vibrators , just wondering if anyone can share their experience with the gloves and exchange ideas.
HopeForce1, we commend your ability to create the glove. Furthermore, we are hopeful for positive results from its use.
Given the mix of hope, expectation, and skepticism that many people hold regarding Dr. Peter's work, your efforts are of significant interest
thank you , appreciate yr kind words
Hello,
The gloves are helping a lot my friend who is 84 and has had the disease for 12/13 years.
Less paralysis, less cognitive impairment…
He has trouble though maintaining the discipline of two hours per session.
I also have difficulties finding people to launch and supervise the treatment. As a matter of fact, he is not able to put on the gloves by himself. PD is affecting his sense of representation in the space. ( upside and downside, inside outside….)
Hopefully, the gloves will help fix this… 🙏🏻
We started about two months ago but we might have only proceeded to a third of the sessions so there’s still a lot of improvements to come, I hope.
Things are not so easy but we already managed to decrease the dose by a good 15 %. I find it very encouraging.
I noticed that other builders had opened a page for exchange. Are you aware of it ?
Sorry I cannot help more. I am not a computer person🤓
Best regards,
Nathalie
Hi Nathalie - Did you make the gloves or were you able to buy them somewhere? Thanks!
that is encouraging , any idea where i can find this page?
hello I’m really pleased to read that you are making progress in your project with the gloves 🧤 and it might be worth going on the website of Peter tess cause there’s a lot of information about the process of the gloves and as I’ve said in the past I’m interested in buying a pair of gloves off you when you when you finish your project good luck with everything and god be with you kind regards stag
Does the individual who made and sold you the gloves make them for sale to others. I'm extremely interested in getting a pair. I also fully realize there no are guarantees. I fear Dr. Tass is going to take a long time (years) before they are developed, manufactured and commercially brought to public market.
i got info from multiple sources , basically i asked chatGPT to summarize the resources and it did a good job, i will post my expeirence with time
Hi my friend so please to read this message what you said about feedback on the gloves look forward to hearing from you again kind regards stag
Hi there! I’m currently using the vibrotactile gloves as well. My primary symptom is tremor and I’m looking into using an app like PDStrive with Apple Watch to help me track and correlate tremor with glove use and other interventions as well as medication times. So far I’ve been trying to keep track by written record and it’s both frustrating and hard to see the big picture. If anyone has some helpful thoughts on potentially useful apps, I’d be interested in hearing them.
I was also looking into to those apps for the same reasons. My only reservation is that each of the apps shares/sells your "contact information" - which I take as name, phone number and email - along with your data. I dont mind my data being shared but I dont want to be getting calls and emails from who knows who. I wish there was an app that didnt sell our info - it would be very helpful. My understanding is that all the deep tremor analysis is actually done by a built in function of the Apple watch - so it would be a fairly easy app for a novice programmer to make (I think)
Interesting and helpful, thanks. Is it your understanding then that the Apple Watch can accurately track tremor along with its other biometric information, and that the proper app could record and report on it? If so, since I’m not even a novice programmer I may just bite the bullet and try one, despite the very real downside of contact information sharing. Thanks again!
I asked ChatGPT and it confirmed that the Apple Watch possesses a special movement disorder framework to assist PD app developers - the response is pasted below. Note that Parky and KinesiaU both apparently require a prescription from a healthcare provider. Strive for PD may also require this. I looked at the privacy agreements to all 3 of these apps and they all unfortunately sell user's contact information and data... I then did a search for Parkinson's on Apples App Store and it looks like there may be some apps down the list that use tremor data from the CMMovementDisorderManager without selling it along with user's identities.
ChatGPT response:
Yes, Apple Watches, in conjunction with certain apps, can track tremors, particularly those associated with Parkinson's disease. Here's a breakdown:
CMMovementDisorderManager:
Apple has developed the CMMovementDisorderManager framework, which allows apps to measure and record tremors and dyskinetic symptoms.
This framework utilizes the Apple Watch's sensors to gather data on movement.
It is important to note that apple does not market this as a regulated medical device.
Apps and Functionality:
Several apps, such as "Parky" and "KinesiaU," leverage this framework to track tremors. These apps can provide valuable data for individuals with Parkinson's disease and their healthcare providers.
These apps can help monitor symptom progression and the effectiveness of treatments.
These apps can also help with the tracking of other movement disorders.
Limitations:
It's important to understand that the Apple Watch primarily tracks resting tremors, and may not accurately capture other types of tremors, such as action or postural tremors.
The accuracy of the data can be affected by factors such as the fit of the watch and the user's activities.
Also, false positives and negatives can occur.
Also, in many cases, apps that provide this service require a prescription from a doctor.
In summary, while the Apple Watch isn't a medical-grade device, it can be a valuable tool for tracking certain types of tremors, especially when used with specialized apps.
Thank you!
I find my symptoms are milder especially in rigidity. Synergic sent me a News Letter email stating they are making much progress on the gloves. Something interesting in the News Letter was the hint of exercising. If clinical trial patients are wearing their gloves and exercising, the exercise will skew the results especially if you were not practicing regular exercising. With the help of a couple electrical engineers, we created our 2nd prototype which is much more mobile and usable for speed walking or jogging. Apparently, when you exercise with the gloves, the results are better. The issue I'm facing is keeping the gloves synchronized. I'm studying a blue tooth protype that someone placed a link to Rice University's blue-tooth glove. The problem, it has no reference to the blue tooth code needed to keep the gloves in sync. I have also emailed them, but I have not received a reply. If anyone has that algorithm, please share to us here. Once I can get the blue tooth algorithm, I will work with my friends on a protype 3 which will use a Z-axis motor. I'm hoping much better results than I'm getting now.
i was thinking the same way ,if there is a way to connect the vibrators to the Arduino over wifi or bluethooth , then that will be best and no worries about cabling .
i started with battery , but then it drains quickly , i had to switch to DC adaptor which keeps me tied to be near the power source, but for me this is OK for starter.
i received the Z-axis motors from Digikey 2 days ago , will soon start working on V2 , let me know if you want to join forces .
Hi HopeForce1, What design are you using? What battery? You should not need a power adapter. I wonder if you might have a short somewhere.... The Blue Buzzah described below has wireless Bluetooth - and even with very tiny batteries in each glove - the batteries hold enough energy to power two full sessions with lots of reserve before recharging overnight.... The Buzzah Neck Build that I use lasts 6 days on one charge, but the battery pack is the size of a cell phone.
Tactledesign is correct. I have tiny key chain size battery that can easily last 6 hours.
Hi Stlewy... The problem with the Rice gloves is that they apparently stopped development of their great design before their bluetooth sync team was finished. So the gloves work, but without the Blluetooth working, each glove buzzes independently, with no right-left synchronization - which is a major departure from the specifications called for by Dr. Tass.
You can see our review of the Rice glove and others at github.com/TactileDesign/Re....
I will note that the wireless Blue Buzzah 2 design that is reviewed in the above pdf is ALMOST finished. It would have already been posted but there were a number of complications getting the Bluetooth to work that were not anticipated. I have been testing a prototype for the designer (who is also co author of the above pdf) and the wireless system is working really well except for a few little bugs still left to iron out - the system is pretty amazing. I expect the design to be posted online in the next couple of weeks.
I encountered the same broken link on the Rice University website and e-mailed both the specific address listed as the contact for this project and the department's generic contact address. I received no response to either.
Thanks Hopeforce1 for the info. Looks like I will have to do my own blue tooth coding.
How to track the progression of symptoms, and potential improvements due to interventions such as vCR ( pubmed.ncbi.nlm.nih.gov/349... ), is a question that has come up repeatedly in this forum. An intuitive answer, that has also been reviewed by Peter Tass: pubmed.ncbi.nlm.nih.gov/384... , is to use wearable devices such as mobile phones, fitness trackers, or smart watches to continuously monitor symptoms, particularly motor symptoms.
I only have experience with the Apple Watch, which has decent privacy protection and provides the Health Kit interface for programmers (developer.apple.com/documen... ) that several companies have used to develop PD apps for the watch. Unfortunately, many of these apps are only available upon prescription in the US. One PD app that is freely available worldwide is Strive PD (strive.group ) which, among many other things, integrates movement information from the Apple Watch to monitor PD symptoms of tremor and dyskinesia.
Some people here wonder about privacy issues with this app - I have not yet encountered any. However, as I don't have strong symptoms of resting tremor or dyskinesia, I have not found the app particularly helpful for monitoring my symptoms. Moreover, I find that the app is not always correctly interpreting the movement information, e.g., it tends to report that I am dyskinetic when I'm just riding a bicycle.
The only prescription-free app that I could find for tracking bradykinesia, the cardinal symptom of PD, is outSMARTPD (outsmartpd.com ). It allows for extensive self monitoring of motor symptoms, including using speed tests, as well as for reporting of non-motor symptoms. As I've just started with the app I cannot yet say how well it works, but it would be great to hear from others about their experiences with this app -- and of course also with other apps that allow self-reporting and automated tracking of motor symptoms.
Vibrotactile gloves
Parkinson gloves
Tass Glove updates
does anyone know what stage Dr Tass vibration's gloves is now?
