Many of us are very concerned about building these gloves for our loved ones. But how do the folks using them actually feel about them? I think that my wife,who watches how much I study and work on the builds. Sometimes tries to convince me that they are helping just to pacify me? I have a hard time even getting her to wear the gloves for 2 hrs, envethough the first time we seen either a remarkable device or the most amazing performance of placebo affect. She tries to insist that after 1 hr she feels like it's making her worse? I am to the point that I think if she new thst 3hrs treatments would give her the ability to do cartwheels in the yard she would still find a reason not to wear them So do I cash in and Chalfont it up to another?" I tried but ______?. I am in the process of fixing them so she eill.be more independent while wearing the but do I proceed.?orgive up?. I ca t.ake my wife want to get better. So while actually using them yo folks get a wax and weaning feeling while wearing them . Is it normal to " help sometimes" or the fear " It's going to me worsre"?. So I am asking for thr participants to respond to these questions. And I would value their answers and comments. Thanks..
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Furch
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From what I read, you should use it for 2 to 6 months to be effective, some say new trial require using it for 4 hrs/day for 4 months before you can cut down to 2 x per week. I personally using it 3 hrs/day (2× 1.5 hr) and help my symptoms a lot, use it with common sense, if you have side effects, cut down the duration and increase back up slowly just like taking the Levadopa.
Indeed, longer use should be better. The current study protocol for the original Tass gloves calls for 2x2hrs daily use for several months, up to 6 months for long-term effects: pubmed.ncbi.nlm.nih.gov/348...
The point is that paradigm is supposed to induce plastic changes in the brain ('unlearning' some overly strong connections that may have formed during the course of the disease) and these changes require time, as for any other effective exercise.
Your wife’s thoughts/reactions are pretty much what runs through my head. I’ll go through my feelings about using the gloves and you can see if they answer all your questions.
I started using DIY gloves around the June timeframe using the suggested protocol (4 hrs/day 2 hrs in the morning and 2 hrs in the evening. For about a week, I stayed with it. Two hours a day gets pretty boring even though you’re hoping it will be worth it. After the first few days I felt quite a bit more energy, my gait was better, I didn’t feel as foggy and my tremors were less. Then at times my tremors were getting worse when I would use the gloves and I decided to go down to one hour twice daily. It helped a little to back off but I was getting a funny feeling in my chest, it was a little higher than I thought my heart to be but it worried me. Also, I noticed my bowel movements were getting a bit softer (I haven’t had a lot of constipation problems). So it worried me a bit. My dyskinesia was also getting worse. I tried to lower my dose of C/L but that didn’t help much either. This whole timeframe was approximately 3 months. I decided to stop the gloves for awhile to see if anything would get better or worse. Things went back to normal (whatever that is).
If I had some gloves that would allow me to move around more freely would be better to handle the 2 hrs twice a day. It was impossible to answer my phone, the first glove went on fine but I had to sometimes use my teeth to get the 2nd on. I couldn’t take a drink of water….This might sound kind of lame.
Friends of my husband, with his help, followed the DIY as close as possible. I felt bad for backing out, but I was feeling that the bad might be beginning to outweigh the good. But I, or anyone else, knows for sure. My husband had a lot of the same thoughts you have Furch. And I had a lot of the same thoughts as your wife.
Like this:
Sometimes tries to convince me that they are helping just to pacify me? I have a hard time even getting her to wear the gloves for 2 hrs, envethough the first time we seen either a remarkable device or the most amazing performance of placebo affect. She tries to insist that after 1 hr she feels like it's making her worse?
I think it’s a little of the “unknown “. Don’t give up, just be patient. It’s nothing against you. And keep on coming up with a way to make the gloves more user friendly. I honestly gave it as much effort as possible. I’m usually not a quitter. 🥊🥊
I am far from an expert on the gloves, but my understanding is that, done wrong, they could make a person worse. I don't have much more on this. Hopefully more knowledgeable people will weigh in.
I may not be knowledgeable but I’ve worn the Synergic gloves. I’m choosing 3 mornings/ week MWF for 2 hours. Morning is better for me because the afternoon sessions made me anxious. I’ve worn them enough to say my brain feels clearer. It IS subjective and it’s hard to parse symptoms. I’m not worse and i started with 2 months of placebo May 5. I only take 2 small doses of mucuna daily and SUBJECTIVELY I’m slightly better and not worse. Now my most vexing problem is hip pain from limping for 5 years.
Thanks Manypony, So you are on a placebo, not the working gloves? Or am I understanding this wrong? How long are you expected to use them? Do you live in Oregon? Sorry for so many questions, but, I was hoping for the Tass Trial and not getting anywhere with that. So, anything you can tell me about the gloves is appreciated.
Also, anybody on this forum, if you have ANY advice on Gloves or whatever, would sure appreciate your help!
I did 2 months of placebo and 2 months of 2hrs / twice/ day effective protocol. Now I do 1-2 hours every other day. OHSU has a trial starting soon. Yes I live in Oregon
Hi, Thanks for responding back Manypony, do you mean Ohio State University has a trial starting soon or Oregon? I don’t know OHSU? I talked to Barbara at Synergic and she said she had (2), one was in Portland, but, you had to live in Portland to be involved, and the other one was in Eugene, but that one was full. Is OHSU one of these two? Thanks!
Ohhh, How are the gloves going for you? I pray, well!
Well, darn, that one is full. I am hoping some more open up throughout the country? The gloves are the least invasive of everything that I know of. BTW, how do you FEEL subjectively about the gloves? Thanks!
My 2 cents: I was about to have a pair of gloves built but I backed out when I read about the adverse side effects among glove users here in the forum. It may be helpful to have a heart-to-heart talk with her to find out how she really feels about the treatment.
No, I did not. There were two reasons: 1) I was not sure that the person would be able to build the gloves correctly (and I would have no way of verifying it); and, 2) I was concerned with a number of reports of adverse effects.
The only side effect I have is light headache, I remember listen to Peter Tass's podcast, he mentioned that if patient have side effects, then he should decrease the time of usage. I suggest increase or decrease slowly, by half an hr at least 2 to 3 days, you want to take it easy on ur body.
It's not immediately obvious which glove design is being used by people commenting on this post. Different glove designs may produce different outcomes. Once again I am wearing my gloves as I type, so going to break this into less long posts.
And there's the first point. The gloves are very restrictive. I can type with my thumbs - but its clumsy and tiring. I cant really scratch my nose, never mind blow it. A comfort break is out of the question. I forgot to plug in my microphone for voice recognition. The USB plug and socket are 3 feet away - but its too difficult. Committing to 4 hours a day for 4 months is HUGE
Dave mentioned it is possible for the gloves to make things worse. There are at least 2 possibilities here. First , poor implementation can lead to mis-timing, or "unclean"/noisy timing of the glove-generated signals in the brain and this can lead to increases in synchronisation of neuron firing and stronger synaptic connections, which is the opposite of the therapeutic intention. This would probably manifest as gradual faster disease progression rather than anything acute. So not immediately obvious
2nd, as Racerk has mentioned, and I appear to have experienced, there can be a need either to reduce existing medication or reduce treatment times. I have commented a couple of times that I could see the case for the licenced device only being authorised under medical supervision. I am fortunate that both my neuros and my GP are on-side and supportive, but they know nothing about the subject.
We had this discussion when we met friends we havent seen for a few months, yesterday.
This kicked off by my wife saying "since it looks like you are going to need to be using these gloves for the rest of your life, I guess I want to make the next version" (mk5!)
It is so difficult to be sure of anything from a study group of one individual. It's not so much a risk of a placebo effect, although that's huge in PD. It's more a question of confusion and coincidence as possible explanations
Whilst the dystonia could have been caused by the gloves, or accelerated by the gloves, looking back over my neurologist notes I was complaining of un-named pains 6 months before the famous broadcast. So can't blame the gloves for it's existence. Short version is that, when I had intended to cut to 2 hours a day I actually cut to 2 hours twice a week (broken glove, birthday party and other stuff) and I had a return of the dystonia and was generally rough. 2x2hours yesterday and 2 hours the day before that, and normal service has been resumed. Need the mk5 glove. (the mk4. 2 is much tidier now, but we can make it better and more robust
IMO, nothing is worse than suffering from PD symptoms, would take years for all the damn trials, fda and insurance approval. So, I am willing to give it a try.
Here is my glove converted from pdbuzzboard by using 5 ft wires and I put all sensors inside finger tips, and then I stuffed it inside a fanny pack. At least I can walk around the house and drink something with it.
I had many of the same thoughts. I realized there was a natural tendency to believe my gloves were helping my mother-in-law, and I fought hard to compensate. I was expecting that, if they worked, she would be up and walking like normal. That hasn't happened, but my wife pointed out a whole lot of little pieces of evidence that the gloves were working. Also, we had a few episodes where therapy stopped for a week, with a very noticeable decline afterwards. I'm working to make time to add lots of features to my gloves. I finally submitted the PCB to the board house last night and should have the hardware a solved problem soon. I do believe there is a lot of room for making mistakes in the implementation which could cause problems. I remembered implementing a test pattern during development and I wore the gloves out of curiosity. Didn't feel too well, although my wife reported it helped her migraine. I've seen or experienced no such issues with the final implementation. I encourage everyone to share their homemade gloves so we all can benefit and learn from each other. My implementation is here: github.com/rchadwick7/freed...
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