Just goes to show nothing is risk free fo... - Cure Parkinson's

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Just goes to show nothing is risk free for everyone

MBAnderson profile image
40 Replies

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 profile image
MBAnderson
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pdpatient profile image
pdpatient

Unfortunately, this is a confirmation of the "snowflake" nature of the disease. No two Parkinson's patients are alike.

MBAnderson profile image
MBAnderson in reply topdpatient

so true

Zella23 profile image
Zella23

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.

MBAnderson profile image
MBAnderson in reply toZella23

Cue 1 works - huh? How long has he been using it?

Zella23 profile image
Zella23 in reply toMBAnderson

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!

Sun_and_flowers profile image
Sun_and_flowers in reply toZella23

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)?

Sorry for bombarding you with questions!

Zella23 profile image
Zella23 in reply toSun_and_flowers

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.

Sun_and_flowers profile image
Sun_and_flowers in reply toZella23

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?

Zella23 profile image
Zella23 in reply toSun_and_flowers

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.

healthunlocked.com/cure-par...

Sun_and_flowers profile image
Sun_and_flowers in reply toZella23

Thank you!

gregorio profile image
gregorio in reply toZella23

Smile in the morning, had to Google The Wordle, never heard of it

Zella23 profile image
Zella23 in reply togregorio

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!

Fed1000 profile image
Fed1000

Thank you Marc, this is very depressing.

Ethin profile image
Ethin

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.

rebtar profile image
rebtar

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?

MarionP profile image
MarionP in reply torebtar

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.

pdpatient profile image
pdpatient in reply toMarionP

I believed that the odds of winning the lottery are better than getting diagnosed with Parkinson's. However, I was surprised to find that it is not.

WinnieThePoo profile image
WinnieThePoo

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

MarionP profile image
MarionP in reply toWinnieThePoo

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.

Ethin profile image
Ethin

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.

lenamm profile image
lenamm

I was also d struck by lightning when I was young. Wonder if it has any bearing on getting PD

MarionP profile image
MarionP in reply tolenamm

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?

crewmanwhite profile image
crewmanwhite

Until studies and research focuses on the causes (trauma, toxins, infections) there will be many mire experiences like this.

mhberman profile image
mhberman in reply tocrewmanwhite

Our research has used eeg brain mapping to identify specific regions that require specific types of photic stimulation to renormalize functioning.

mhberman profile image
mhberman

you are providing valuable feedback to the researchers by telling them what’s happening in great detail including dropping out.

MarionP profile image
MarionP in reply tomhberman

Absolutely correct and very necessary feedback it is. Right now the evolution is "Model T" without widget can never proceed to Ferrari.

mhberman profile image
mhberman

the Ferrari will integrate real time biometric and eeg analysis that then drives the delivery of light and other forms of noninvasive stimulation.

busters_dad profile image
busters_dad

This person seems to be a very unique set of circumstances. I'm surprised they would include them in a study.

MBAnderson profile image
MBAnderson in reply tobusters_dad

why do you say that?

busters_dad profile image
busters_dad in reply toMBAnderson

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?

MBAnderson profile image
MBAnderson in reply tobusters_dad

You're right. Problem is I've read a lot of trials and have never seen it asked or listed as exclusion criteria, "Have you ever been hit by lightning?

WinnieThePoo profile image
WinnieThePoo in reply toMBAnderson

Eligibility CriteriaDescription

Inclusion Criteria:

between the ages 45 and 90

diagnosis of bilateral, moderate stage idiopathic PD

qualify for EEG procedures

Exclusion Criteria:

on dopamine agonist medications and exhibiting compulsive behaviors

That's all folks

Sun_and_flowers profile image
Sun_and_flowers

How unfortunate... :-(

Since you can't turn down the intensity, can't you just wear them for half the time, or even a quarter? Maybe that will make a difference...?

JohnPepper profile image
JohnPepper

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!

MBAnderson profile image
MBAnderson in reply toJohnPepper

"... I am not allowed to give you my website or my email address,..." Why not & who says?

kevowpd profile image
kevowpd in reply toMBAnderson

it is the moderators' tepid response to his relentless spamming.

JohnPepper profile image
JohnPepper in reply toMBAnderson

I have been asked not to put my website onto postings on this site!

NextStage profile image
NextStage

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.

WinnieThePoo profile image
WinnieThePoo in reply toNextStage

I think the tremor, freezing, difficulty walking and mental confusion were probably the OPs primary concern. Not, disturbing the neighbours

NextStage profile image
NextStage in reply toWinnieThePoo

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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