WHERE the HELL is our GLOVE? part two

[PDWarrior1900]

I watch/listen to about 10 health videos daily.

I got lucky stumbling on this video which is a follow-up to my last post on the Stanford University PD gloves.

HERE is ANOTHER PwP using the gloves with AMAZING results!

He has a YouTube channel and I see half a dozen posts... About 5 minutes long so they are easy to watch and INSPIRING!

And he personally knows the other PwP (the Indian-guy) that was featured in my other post.

You MUST hear what 'Pat Riddle' has to say about him! It's VERY ENCOURAGING for all of us!

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youtu.be/GNTUIq2Qb4k(Not working as expected?)

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youtu.be/r6Dk1D-YZCo(Not working as expected?)

[PDWarrior1900]

Here's another HAPPY video from Pat Riddle after just '5' weeks wearing the glove!

youtu.be/F0mXCxEq0J4(Not working as expected?)

[Hmop in reply to PDWarrior1900]

Sorry I don't understand very well English. Could you tell me something about this Glove. Thanks

[Mimer in reply to PDWarrior1900]

Interesting. I have never heard the sound from the original gloves before. But I have created a device of my own and it produces exactly the same sound.

It is still work in progress, but I have used a one handed solution for about six weeks to test the design of the actuators. I have used a couple of hours before bed time and some days also during morning or day.

I am not ready for a marathon yet. But I can feel some difference after a session. Mostly in terms of less rigity and dystonia. Also noticed better effect of levdopa.

There are many other DIY initiatives out there. Mine is based on hardware that costs more than many other initiatives, (around $250 in it's simplest form).

[PDWarrior1900 in reply to Mimer]

great post! I love your ingenuity! hope it works out GREAT for you and please keep us posted of your progress!

[Erniediaz1018]

thanks

[Rebtar]

just to mention. A physical therapist had several patients in the study. She says one of her patients had an adverse reaction, this has not been publicized. She doesn’t know if there were other adverse events. For the other participants, results variable.

It looks like a great tool, but apparently has some bugs to work out.

ALSO, looks like subcutaneous pump got pushed back a year — now expecting launch in early ‘24

[Boscoejean in reply to Rebtar]

where is the information about the physical therapist who had a patient with a problematic outcome? I would like to read this.

[Rebtar in reply to Boscoejean]

Not in writing. Someone I know who commented this to me in an email when I mentioned the glove. I asked for more detail and she didn’t answer, I would guess because of her patient’s privacy. She is a PT who specializes in PD and who I trust.

[PDWarrior1900 in reply to Rebtar]

me, too.... do you have more specific info on this physical therapist? thanks

[Rebtar in reply to PDWarrior1900]

this seems to be the most significant part of her email.

“Unfortunately, their technology isn’t customized enough to benefit everyone with PD. It helps those with severe tremor. Until they get the algorithm correct for everyone, it still takes fine tuning. “ She also said what has been publicized doesn’t reflect the whole picture. I believe she knows what she’s talking about,

Perhaps it will require individualized algorithm adjustment, like DBS, as each individual’s has their own constellation of symptoms.

I don’t think this should discourage anyone trying to make and test their own gloves. But as with all interventions, with appropriate caution and expectations,

[PDWarrior1900 in reply to Rebtar]

great report and effort by you! thanks!

[Parkpaul]

This is discouraging. I'd love for my Wife With PD to try this. She had such an adverse reaction to c/l. Her neurologist said take more, try Rytary. She would become hysterical and crying. I took those pills away. We tried NAD iv, nothing. Restore Gold seems to keep things from getting worse but her fatigue continues. If I read one more time "further studies are needed "...

Anyway, the science behind this sounds well thought out and logical. So all we have to do is wait a couple of years and we should be able to get the gloves. My wife is 77. Couple of years sucks. This is discouraging.

[PDWarrior1900 in reply to Parkpaul]

watch the first video... he talks about buying the gloves direct from the company that makes them... Stanford University does not make them... they are only the 'test site'.... Pat Riddle says to call him... but neglects to give his phone number... but I believe his twitter handle is posted on his YouTube channel/ videos

[Neurosmith in reply to PDWarrior1900]

Look in the comments below the video, specifically his replies to some comments. In some of those he lists is cell phone as well as his wife's email address.

[PDWarrior1900 in reply to Neurosmith]

FANTASTIC FIND! anyone contacting him please post his replies here, thanks!

[PDWarrior1900 in reply to Neurosmith]

courtesy of bosojean:

Patrick Riddle

Book Writer

[phone]

[e-mail]

[WinnieThePoo in reply to PDWarrior1900]

That is almost certainly wrong. He is confused. Stanford developed the glove and are responsible for trials with a view to FDA approval. They are looking for a manufacturer to turn a concept into a reality. But Stanford are driving this

And Stanford hold all the patents

[jkm-healthunlocked in reply to WinnieThePoo]

It looks to me like Stanford is doing the research and developing the algorithm. I think the gloves themselves are coming from a separate company eaiinfo.com/neuromod/ That page states "Treatment of Neurological Diseases: Dr. Tass reports of use of vibrotactile stimulation to apply Coordinated Reset Stimulation (CRS), which has been shown to cause long-lasting reduction of pathological synchronization in parkinsonian monkeys."

[Neurosmith in reply to WinnieThePoo]

I also see some inconsistencies in what he's saying about who owns what regarding the gloves. I think who owns what is somewhat murky and I'm not sure he has all his facts straight. The Oregon startup, Synergic Medical Technologies, synergicmed.com/, is involved somehow. If you look on the most recent clinical trial of the gloves (clinicaltrials.gov/ct2/show..., they are listed as the sponsor. In Tass's presentations he mentions that they're working to line up a tech company to support the mfg of the gloves. Perhaps that's Engineering Acoustics. There was an article on Forbes that says Google co-founder Sergey Brin, who has donated over $1 Billion to PD research, has a team who is working with a potential partner to help Tass get his device to market faster once it is approved.

[PDWarrior1900 in reply to Neurosmith]

i had read Brin donated 100 million because he has the lark 2 gene ... but a BILLION? WOWWWWWW! now we're talkin'!

[WinnieThePoo in reply to Neurosmith]

It looks like synergic med were the original commercial partner, who sponsored the original trial - which has been cancelled by Stanford with no explanation. It would seem likely that the cancellation was due to the 2 of them falling out of love. From Peter Tass recent comments on videos, it would appear that Stanford has a new commercial partner to help them take this to market. I'm not sure it is Engineering Acoustics. I think they make the actuators that Peter Tass used in his research, but I think that involvement pre-dates synergic.

Maybe they've now decided to work with them on the whole project? Whatever, I would think we will hear something concrete fairly soon, because Tass wants to get the trials and authorisation under way.

[PDWarrior1900 in reply to WinnieThePoo]

another post here says in the 'COMMENTS' in his youtube video he lists his phone and his wife's email... !!! why don't you contact him? i doubt if he's making this stuff off... he's very sincere and an actual 'participant WITH the gloves' has gotta KNOW what's going on... doesn't that make sense to you?

[WinnieThePoo in reply to PDWarrior1900]

Why would I want to contact him? What would that achieve?

[Boscoejean in reply to PDWarrior1900]

Pat Riddle has his own web site and his email is on there. He wrote a book and I think he is writing a second book. patriddlebooks.com/contact

[PDWarrior1900 in reply to Boscoejean]

that's a GENIUS GET boscoejean! for everyone here... tip your hat to boscojean!

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Patrick Riddle

Book Writer

[phone]

[e-mail]

[Parkpaul]

thanks for the response. The first video you reference is from Pat Riddle? Where do I find that?

[PDWarrior1900 in reply to Parkpaul]

scroll to the top

[Missgirly117]

I have watched them too! He is very encouraging. We need these gloves now. Get them out to PwP and then continue studying and make them better. This slow drip is hell.! Also just got on a wait list for Cue 1.

Dr. Tass is starting a new trial at Stanford. They are waiting on funding.

[Neurosmith]

I contacted the Oregon startup that he mentions a couple of weeks ago. They replied right away, but they want people who live in the Portland area of the trial. I mentioned that we'd be happy to fly there since it would be less than an hour flight, and they said "I'm very sorry but the clinic staff has requested we limit the study to local participants."

[Boscoejean in reply to Neurosmith]

I emailed them as well and we do live in the Portland area and it sounded to me like they planned to do the clinical trial at OHSU but I have not heard from them. Since my husband is in a clinical trial right now he cannot participate in the glove study until this clinical trial treatment is complete. I am always happy to find good possibilities but it seems like sometimes things do not exactly mesh when it comes to timing.

[Boscoejean]

I wonder if there will be a possibility of right to try with the gloves and if they will be able to keep up with demand if the clinical trials show mostly positive results- I have to think that even though the vibration and the sequence of vibration is the main therapeutic advantage could there also be a reason why specific points on the fingers make this treatment more effective.

[bullet65]

I have done a search at clinical trials.trials.gov which shows that the trial has been terminated and doesn't provide a reason.

[PDWarrior1900 in reply to bullet65]

verrrrrrrrrrrry ... suspicious

[Boscoejean]

I wonder if a person emailed Synergic and asked directly what is going on if they would get a response.