This was posted on Face Book Parkinson's Alternative Healing (with permission of the author.)
"I am a participant in the OHSU study of the tactile vibrational Parkinson's glove. I am pleased to be a part of this promising research. Unfortunately the experience of wearing these gloves 4 hours everyday day seems to be aggravating many of my PD symptoms. My tremors have increased, it's more difficult to walk, I've got a freezing gait, sometimes I'm discombobulated. My nervous system is overwhelmed by the tens of thousands of little pin pricks on my fingertips, plus the accompanying sounds. I have a particularly sensitive nervous system, due to being struck by lightning years ago. But surely some others with PD might also find it overwhelming. Too bad I can't turn down the intensity. It pains me to consider it, but I'm likely to drop out of the study."
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MBAnderson
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interesting to read your above post, and the participant getting worse symptoms when some have seen an improvement. I would think the wearing of gloves for 4 hours very difficult, with limited movement to the person whilst wearing them. It must also be very disappointing to be selected for the trial, then for the gloves to make things worse rather than improve.
Not sure my HWP would be able to cope with that amount of time daily. He wears his Redlight hat in the morning for 22 minutes but fortunately can do the Wordle or watch TV and have a cup of tea at the same time! He also has a Cue1 which has brought many improvements without being restrictive.
He has been using it for just over a year now. Walking is much improved, no shuffling, better paced, more balance it’s been noticed by others as well as my husband. Neuro was impressed too with his walking. It also says it can help with freezing but that’s not something my husband has suffered with. Seems to be doing well at the moment and manages on low meds!
Zella23, did your HWP notice the improvements from the CUE1 straight away, or was it a gradual thing that improved with constant wearing? Also, does he use it on his sternum or elsewhere on his body? How many hours a day, and how many days per week (or is it every day)?
I think it was definitely a gradual thing after a few weeks, wearing every day, we noticed the difference. Gradually after a few months his step and balance and gait were improved. Wears it for a few weeks on one side touching his collar bone, when he changes the adhesive which does last several weeks, puts it on the other side. Wears from about 10 30 in the morning and takes it off about 10 pm at night every day unless he forgets. You can’t swim or shower with it on.
We don’t hear the buzzing now but we’re aware of it at the beginning.
Thank you, that's good news! What about the red light hat? Could that have something to do with the improvement too? Has he been using it for as long as the CUE1? And does he use it every day too? Is it a home made one or did he buy it? If so, what make? I'm looking to get one but am indecisive cause I'm scared of deciding on the wrong one...About the meds, was he on a higher dosage and was able to reduce it because of the CUE and hat, or was he always on low meds?
I looked back on posts and lots of information on here when he initially had a a red light hat from the Mens Shed in Tasmania. It was 3 years ago. It wasn’t too expensive and he was happy using it, but needed charging every couple of days. It’s probably the cheapest one unless you’re able to make one.
He updated it and bought one from Welred a couple of years ago. Altogether he’s been using one for 3 plus years, most days first thing in the morning. He was on a higher dose of Madopar initially when first dx 8 years ago. Now takes 3 x 100 mgs Madopar plus Rasagaline and Amantadine. Dyskinesia from meds still causes problems but not all the time.
We have a Wordle group of 5 on a Whattsapp. Challenges the brain in the morning. My husband and I then do the other free games from the New York Times, all to do with words!
My husband then goes onto his Brain HQ daily. Think it helps the grey matter. He is still very sharp!
Thank you for sharing! Important to remember that glove vCR, as a potent treatment, may also have adverse effects. And no effects without side effects.
I am puzzled however by the high stimulation intensity that this report implies, even though the more recent theoretical theoretical studies by Peter Tass have suggested that stimuli of lower intensity, as long as salient, should be more effective for vCR.
Unless this is some kind of sham protocol, it seems to be a departure from the theoretical studies and previous conclusions by Tass that less should be more.
Wow. struck by lightning! The odds of that are one in 15,300. Now I know two people who've been struck by lightning! And the other person was struck twice! What are the odds of that?
In the cases of the people who are struck, irrelevantly high. That's the problem with odds. What are the odds of getting Parkinson's? 100% in our case.
I get the strong impression that there is not much clinical supervision in this trial, nor maybe understanding of the concept. It's run by the engineers who built the equipment. As Ethin has noted the intensity reported is surprising. Of course it depends on the individuals perception but one would expect low intensity. Otherwise it is no surprise. I have posted at least 3 times that I think fda approval may be on the basis of requiring medical supervision. Peter Tass has said that it is usually necessary to reduce medication and /or reduce glove time. And it has been confusing and challenging for me to strike the right balance. Not helped by trying to find that balance with an evolving glove designYour Facebook post fits my experience
Obviously individual differences matter greatly and thus require supervision, titration, adjustment, readjustment... Well, so does driving. So do many things. So then the capacity for adjustment must be built-in from a number of attributes.
To underline the observation that the intensity setting may be quite important: Confused by the conflicting information on the intensities in the clinical trials, I've tried out a random intensity setting for a few days (as this would also get rid of the need to settle on a particular high or low intensity). But the acute effect didn't feel as relaxing as before, and my dystonia returned with a vengeance. So I am back on a constant low intensity now.
Ever hear of "fried wires"? I mean as in the wires in your wall. They are the medium of your signaling and your energy, so one might well anticipate since those are the same wires used in any case, some sort of involvement, additive effect or just simply two effects at the same time, because your system has had injuries from two different sources, Miight it just be as easy to think of as two separate but concurrent disorders?
Because almost every medical trial I've ever read seems to have some sort of exclusionary criteria that rules out people who fall outside what is considered the norm. Hit by lightning with permanent residual effects? Usually researchers are looking for the most "generic" candidates so they can try and correlate their data to known standards. Anyone have the exclusion criteria from this study?
I don't want to belitle these scientific studies but I question why sciebtists are still involved in looking for some way to reverse PD when we already know How to do that with FAST WALKING.
I have been PD movement symptom-free for over 25 yaers. I am now 89 and sitill living a useful life. I have not taken any PD medication since 1994.
Don't tell yourself thAt you are not able to walk fast! If you can stand on your own two feet then you can start the slow progree of walking further and futher every 2nd day until you are feeling on top of the world. YES! It is out there, waiting for you to make an effort to HELP YOUSELF!
if you or anybody else is wanting to know more, or to speak to me, I am not allowed to give you my websit or my email address, but if you look up my name on You Tube you will see acres and acres of information. Let me help you by you getting hold of me!
I use vibrating "gloves" that were built following PD_BuzzBoards instructions. I have an online work meeting every morning for about an hour. I tried to wear my gloves during this meeting. However, one of the guys on the call said that the sound was giving him a headache, so I can't wear them during the meeting. This guy is very sensitive to a lot of things. Also, he never got married nor had kids. Most people I know with young kids are able to tolerate/tune out a lot of different distracting noises. ☺️ So don't give up hope just because some people are hyper-sensitive.
Yeah, I was addressing the part that said "My nervous system is overwhelmed by the tens of thousands of little pin pricks on my fingertips, plus the accompanying sounds." I was extrapolating that it's not surprising that someone who is this sensitive also responds differently to the therapy. If they are this affected, then it's really just like exposing themselves to stress for 4 hours a day.
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