My HWP has been using the gloves our daughter made him for a little over an hour twice a day for about 10 days. He seems weaker and almost dazed when he finishes a session but is somewhat clearer later on. Since his PD has been progressing so rapidly lately I don't know if this is PD or the gloves. Or if it is a bad sign. He is also more irritable, which is not helpful....I see no positive effects yet.
Should we continue with the gloves? Is this behavior expected? He's never gotten up to 1 and 1/2 hours consistently.
Thank you for any help.
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tiredpuppy
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If you have watched the TV program "QI" Im holding up my "nobody knows" paddle. Even in Peter tass clinic there is very little clinical certainty. But,
1} Tass mathematical research shows that bad cpr could make things worse
2) my personal experience largely mirrors kanwar bhuttanis. I started with 4 hours a day for 4 months and I'm now down to 2 hours alternate days.
3} I have no idea whether other regimes work. Tass standard regime is the only one I've tried and it's been wonderful for me
4} this forum is full of people half mis-understanding science and trying to find popular folk easy use alternatives drugs, supplements and other remedies. In most cases someone somewhere will claim a success
If you want Tass results, either learn advanced mathematics and do 25 years of your own research, or copy Peter tass as closely as possible
yes Tass has published a lot of info on building the gloves. I built a couple pairs. I’m not patient enough to sit or give up that much of my day but even with 1.5-2 hrs for 2 weeks I see improvement with digestion. I can feel and hav my stomach contract which helps with constpation. I am 10 years with this crap. Honestly it feels somewhat like demonic torment. I encourage prayer for more understanding about deliverance We got nothing to loose I am concerned with the people using the gloves and feeling worse. Consider stopping. No one living with this can afford to feel worse. Also. I believe that just any random vibration is wasted time. Peter Tass has described a certain pattern I just started back on my gloves 3 days ago. I will check back in in a few weeks.
Thank you. You’re so knowledgeable on these matters. Please tell me, do you know what is going on with the Peter Tass gloves? Is there any reliable news on when they might be ready? The presumed launch of the gloves keeps getting delayed, last time I heard it was until 2027. It seems a long time, given that they were presumably given fast-track status. Also, the gloves are a device, not a medication, so they should not require such lengthy evaluations. Or are they simply striving for perfection?
I don't know. We know the design of the glove they are now working on has changed significantly from the ones we have all seen. I havent seen one yet. I suspect Kanwar would have. I think the rules for medical devices are similar to drugs. You have to show they are safe. And you have to show they work. That will take time. But as my former boss once said, "the longest part of painting the house is getting the paint pots out". There is no sign of the start of a trial yet - probably because they are carrying out private tests, and making changes to the design
It's frustrating , but I don't think we will see a Tass / Stanford glove we can buy before 2028.
We might see a Synergic glove early next year. NCT05881460
We were finally able to watch this video together. It is similar to one I watched before. Unfortunately we both have hearing issues and could only understand parts of it. But it was helpful, especially hearing about the relaxed state it causes. His new tremor is still present and maybe worse. We just don't know if it is the disease progression or from the gloves. He wants to go back to the gloves. Thank you for taking the time to share.
Thanks for your response. I believe our daughter followed pdbuzzboard's videos. She is an engineer so I left it all up to her. I have not studied into it very much but plan to watch Tass's videos as pdbuzzboard recommended.
My husband has had a hard time tolerating the gloves. He is trying to lengthen the time he wears them. At least he is now doing them twice a day. He cannot take them off by himself so bathroom breaks shorten the time. I'm trying to find a way to loosen the gloves some.
I had heard that some people are worse after using them, so I was concerned with his reactions. We will keep going with them and just watch. He wants to use them and thinks they will help.
Peter Tass has mentioned a need to cut conventional medication for some patients, and where that is not possible, to reduce glove time. I, and others have noticed that need to cut meds, although it's more like a levadopa overdose in my case (neck and shoulder dystonia and mild dyskenesia)My latest gloves are much easier to put on and take off and wear
Hello Richard, This is Melodi and I hope you had a wonderful time spent over the holidays with your family. I have a question for you, if you don’t mind helping me. My Engineer has made the Glove building similar to the your videos, at least that’s my understanding. Our problem is the ACTUAL design of the Gloves themselves that my Engineer made. He has some questions. Have you posted any videos on the actual Glove design? If not, is there any way I could get some help from you? Thanks SO much!!! All the best! Melodi☺️
The gloves in the picture are new today. They use a very compact housing for the 9mm exciter. The elaborate velcro adjustable holder has been replaced by a loop of elastic strapping sewn to give a tight fit. We have done away with finger material. The tactors are held just by the cables. The gloves are Decathlon cycle gloves with the fingers cut off. The cables pass through slits cut in the finger stubs. The rj45 blocks are also held by slits in the back of the glove and further secured by elastic string loops sewn into the back of the glove. Remember to have the right hand rj45 upside down
uh-oh. Our right hand rj45 is not upside down. Now what? I don't know how to post a picture on here.
Later: Actually, daughter said our gloves are wired so each finger on corresponding hand gets the same buzz at the same time, so it's not necessary to turn the rj45 upside down. I hope she's right. It's hard being in the middle and not really understanding what is happening.
she clearly understands! my rj45's are all standard and i use fairly short connector cables. if i wired mine like your daughter wired hers i would have a collosal birds nest, and it would difficult to put on and take off the outer fingers.
to explain - there are 8 wires, but they are 4 pairs. so lets use 4 instead of 8
the basic problem is that, if we wire them the same, on the left hand 1 is pinkie, but on the right hand 4 is pinkie. your daughter solved it with the coloured wiring. i solved it by turning the rj45 upside down, so i get 4321 instead of 1234 on the right hand.
My husband is not on any PD medication. C/L did not help but caused dizziness and loss of appetite. He took an extra half pill and overdosed so he finally quit them a few weeks ago. He has a prescription to try of a dopamine agonist but wants to try the gloves first. He has avoided the agonists but is failing rapidly.
I'm sorry to hear of your husband's problems. Be careful when starting dopamine agonists to closely monitor for compulsive behaviours. I have been taking pramipexol for 5 years without problems, but many have been less fortunate.Unfortunately I think you have unreasonable expectations. The gloves have transformed my life with parkinsons. Likewise Kanwars. But we both still take conventional medication. And we both used the gloves for 4 hours a day for an extended period to start with.
I have taken a fair bit of interest in glove projects and I am not aware of anyone successfully using them as a monotherapy. And especially not as a monotherapy from the outset.
So you have stopped conventional meds, are using a glove which doesn't match Peter Tass specifications (although might well work nonetheless) for less time than the normal 4hours, and are hoping for the PD to go away.
I understand the motivation but I think you have unreasonable expectations. You join a large group who hoped to avoid conventional meds, which included me. And most of us come to realise how much better quality of life we get on the meds.
Nobody that I am aware of is using just the gloves to successfully manage their PD. And it takes time
Unfortunately, Sinemet did not improve his quality of life. It improved no symptoms at all, only caused dizziness which made his balance worse and took away his appetite. He is 5'11" and got down to 125 lbs. He has gained several pounds since stopping C/L. I see no reason to continue a med which only causes problems with no benefits. If it doesn't work they say to increase the dose. Only one half more caused an overdose and put him in a wheelchair for 3 days. Since he already tends to be obsessive, we have avoided agonists. He got an Rx for one while our daughter was here making his gloves, so decided to wait to see how they did. We are told to only try one new thing at a time! But I think he will start the new med this week.
He will continue trying to lengthen his time with the gloves. I wish he could just wear them like everyone else does, but he has already doubled his time, so I think he will get there. We aren't expecting miracles--just hoping for some relief. He is 81 today and has much apathy, making the struggle harder.
I appreciate it will be tricky with an 81 year old, i had the same challenges with my 83 year old Dad , who had serious balance issues and festination. But exercise is the best non-med therapy, particularly combined with the gloves
and get your daughter to check her tactor design against the 3rd supplementary material item (the pdf) on this pmc.ncbi.nlm.nih.gov/articl...
1.1 is why it matters
"Reasonable technical requirements for the vibrotactile actuator for vCR would therefore be an
operating frequency of approximately 250 Hz, a displacement output that exceeds 40 dB (Re 1μm)
above the threshold for sensitivity for the fingers (to achieve salience), and a rise time of less than 2
ms."
How similar is your tactor to s3? what is the (in circuit) rise-time?
I am wearing my brand new lightweight and compact mk6 gloves for their first 2 hour session as i write this. They have had a few minor teething troubles. including, this morning, as i put them on, the contact plastic screw fell out of my right pinkie. I can feel it vibrating without the screw - but its a very different feel
Since i can feel it vibrating i am going to try a further modification. a deeper box with 3mm mouse mat damping, or 3mm mouse mat exterior to base, or fill the recessed part with foam. after 31 january. the current design relies on honeycomb pla walls, and wrap round elastic strap for damping
I started reading this to my husband and asked if this made any sense to him. He nodded his head and smiled (weakly). He taught electronics years ago. I will let him discuss it with her when she is here again! And thanks for the link.
Hi Richard. When the screw fell out, you mentioned you could feel it vibrating without the screw. Was it the exciter box housing you were referring to that was vibrating? If so how strong was it?
Yes it was the box housing. It was faint. just a general tingle to the finger, not the point source I'm used to. The elastic wraps provide a fair bit of damping for the box, but I might experiment (not in January!) with a bit of damping behind the exciter back. I have a set of hole punches, which will enable me to cut discs of 3mm mouse mat to drop into the hole in the base, behind the exciter, which means I won't have to make the box too much deeper
I have been using the mk6 all week, and they are a complete joy. Robust, light comfortable, easy (enough) to put on and take off. A couple of issues - we are going to experiment with a wide elastic loop around the hand (like wearing a tennis sweat band on your palm, instead of the glove. And the holes Mrs WTP cut in the glove fingers to tidy up the cables restrict the ability to stretch the exciter over the finger when putting on, because the cable joint gets stuck on the hole. So I may run the cables "untidied".
It's really easy to build a glove this way too. I'll try to sort some videos out in February.
Random, 32.5% jitter, mirrored 1.5Hz fCR 3 on 2 off
I plan to look at sequential and amplitude jitter and alternative fCR's next year. i planned to last year too. They say the road to hell is paved with good intentions. But also, "if it ain't broke, dont fix it"
You might try some other kinds of vibration products and see if they help more. We tried some cheap vibrating gloves from Amazon (not really meant for PD), a pulsating music beat watch meant for musicians but seems to help some with PD, a vibration platform, a vibrating massage mat for chairs, a vibration mat he can lay on, a vibrating massage ball, a vibrating peanut roller and held held massage tools that vibrate where I put them on vagus nerve and acupressure points, like his inner wrist. For my HWP, the ones that help, it is usually pretty readily apparent, like sometimes right away and usually within 20 minutes at most. Though sometimes they don't reduce his tremors at all, but usually they do.
The hand held massagers worked the best, both the little massager and the vibrating acupressure tool. They aren't cures but they usually calm his tremors pretty well for an hour or more. Next the lay on vibrating mat, which is good because he can do that by himself. Then vibrating peanut roller, especially on his back along his spin. And last the vibrating massage ball. I have to hold and use everything but the mat as they don't seem to work if he does it himself. But the other things we tried did not work for him. So he is helped by some vibrations, but half of the stuff we tried worked and half didn't.
I have a Hyper Volt but never thought of using it for this. I use it periodically along my spine to relieve muscle spasm always under 2-3 minutes.
My husband made a buzz board for me last summer with the “Tass” program found on GitHub.
I used it 4 hrs per day for 2 months and found that my gait was improved. I reduced time to 2 hrs per day, then seemed to experience more symptoms. It seems like take too much levodopa.
Interesting ideas! He did try the vibrating ball last year with no response. I'm glad you found some things that help. I'm hoping the Beech Band from the UK will make its way over here before too long. (Google it.) If he could have relief from his tremors to eat, that would be great.
After seeing a ton of videos of Dr. Tass, I became a believer in the gloves. I subquently met Kanwar Bhutani in person and heard his story. To my knowledge he is the longest user of gloves in the world.
I was also stunned to hear Jimmy Choi say that he participated in the same small study conducted by Dr. Tass. In not so many words Jimmy Choi said he decided not to pursue DBS because of the good results he had during the Tass trial
I also saw a video interview of a third person who demonstrated dramatic results.
But all but Kanwar had to return the gloves.
So yes I believe these gloves work.
Dr. Tass appears to be a brilliaint scientest and his work in direct brain stimulation paved the way for his understanding of this non- invasive stimulation. Obviously Stanford University thought so too since they recruited him to set up shop in their facility.
The Cue1 in the UK also utilizes vibration to mitigate some of the PD symptoms. They have a policy that if the device doesn't work for you you can return it for up to 6 months.
I believe they now have about 3,000 - 4,000 users and a return rate of 25%.
So in a nutshell here is my 2 cents:
With proper stimulation design (aka the Stanford protocol) the gloves work for most (75%)people. But everyone is different.
The gloves are only part of the solution. Excercise , nutrition, mental attitude and other factors are necessary to get meaningful results
It does appear that the "devil is in the details" and the developement is taking too long
Most of the medical community is on the fence about this technology and more effort is needed to bring this to market.
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