Need faster research on Neuro-modulation

[Furch]

I attended 2 various zoom meets of Vibratory Neuro-modulation . In UK they have a CUE1 available at less than 500 dollars that is showing some amazing strides for some people. Then I watched a zoom with Dr Peter Tass who is a researcher involved with the amazing Vibratory Gloves. My wife was a participant of a thermal alternating device that applied hot and cold through a headphone like device. Had close evaluations along with MRIs. Really good results but temporary. After the device was discontinued she resumed her prior state. There is so many avenues that are not pharmaceutical that are showing promise. as well. We see the results of DBS and as any treatment one size is not going to fit everyone. There are supplements, vitamins, ideas related to changing the flora within the gut, several concepts of Neuro-modulation, Focus Ultrasound? Stem Cell, Angio-genesis and even Fecal transplant. Sure there will be "snakeoil salesman " but we must open up and at least research if only to prove a idea us useless. But with big pharm and their lobbyist the other approaches are swimming against the current when it comes to research $$$$. We will get no where until we pressure our lawmakers. I will not hesitate to ask congress for help. PD is growing faster and affecting every generation .Thanks

[Bolt_Upright]

Your wife was in the Caloric Vestibular Stimulation trial? healthunlocked.com/cure-par...

Caloric Vestibular Stimulation looked very promising. Temporary success seems like a good thing as long as you can keep using the device. I am so sorry they discontinued your wife's treatment with it.

Is there anything you can share about the success of the device or why they discontinued it?

Personally I have been experimenting with Binaural Beats, Monaural Beats, Isochronic Tones, and 40 HZ flashing lights. rbd-pd-protocols.blogspot.c...

[Furch in reply to Bolt_Upright]

Yes: The trial was for 12 weeks prior to the trial she was evaluated with specific instructions to have her ears cleansed of wax. The reason I add this is that rather than getting a simple like of drops. I purchased a ear irrigation system and of all things it blew off and broke off in her ear had to go to the ER and have it removed. But she had to wear the device 20.min 2 x daily. She had several evaluation as well as MRIs with and without Co2/ mask. She had less off times and was maintained on less CL. Now which has been about 4.ths later she is now on 25/100 3 pills every 3 hrs now is using her walker about 60% ofvthe time. Her emotional outlook was very much more positive during the trial. It was blind study some received placebo. I am certain that she lucked out and got the real deal. However there was only about 20 participants in that study. I jokingly told my family I was going breach the MRI dept and steal it. Thinking that since she was good and very disciplined participant that when and if it ever makes the FDA award list that she would be a head at the table. But she was paid, which considering the trips to the center and time, and the ER bill did not equal. But I don't know if the trial was worth her 12 weeks of PD honeymoon since now she feels bad about the divorce of her headset and misses it so much...Hope this may have answer so of your questions. Are you familiar with Dr Peter Tass anf the "gloves"?Thank you.

[Bolt_Upright in reply to Furch]

I read somewhere that caloric vestibular stimulation is approved for the treatment of migraines. Maybe there is a way to finagle a migraine specialist into approving one? I will try to find more information.

Yes, I am very familiar with Dr Tass. You should join some of the Zoom calls MBAnderson is so nice to host. More than a few people on those calls are working on homemade gloves.

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[Furch in reply to Bolt_Upright]

Thanks for telling me about the Zoom and MBAnderdson. I just getting the hang of this site.

[Boscoejean]

I found out about Cue1 over 2 years ago and immediately signed up for the wait list but it does not seem like they are trying to get this approved by the FDA. I have written several times asking about this with no solid information given about why they don't seem to be working towards getting approval in the US. I guess that since this does not seem to be happening trying to keep up with the research and availability of the gloves becomes the main resource for this type of help

[Furch in reply to Boscoejean]

Yes: I gave actually had some one on one correspondence with Lucy Yang. They have been trying to get here in the US. Infact they mention any method to get a study here I actually spoke with a few people at the Murdock Center which centers around natural treatment. They are more concerned about beans and seeds. I asked them what could be more natura5 the vibratory intervention. But they showed no interest. UNC Chaple Hill is developing a Neuro-modulation unit but seems to.be the Focus Ultrasound which is bloodless but still as I see it a surgical procedure. I would like to see CUE1 come to the US and bypass the FDA with no specific claims like a kind of naturalistic marketing perhaps get some Chiropractic professionals involved. Once they get here and if they show promise the word of mouth will do the rest. admit that I am long winded. However there is a angio-genesis study that is being applied off the coast in some islands which I can't remember. But some rich guy in Middle East who wanted his family member to gave the study and treatment figured away to have his own ship registered to that island and as long as ge goes 14 miles off the coast it consider international waters and he can get the treatment for his love one. Which is a good resolve. Sorry just thought this was interesting. I stay up all night sometimes researching. There us so many logical approaches to treat this disease. We should demand a "right to try" like some terminal diseases. I for one would even take a moped from Charlotte to California for the Gloves of Dr Tass....

Thanks

[Boscoejean in reply to Furch]

Regarding the angio-genesis study are you talking about FGF-1 being done by Zhittya?

Recent information was posted on here a few days ago.

healthunlocked.com/cure-par...

[Boscoejean in reply to Furch]

Are you aware that right to try is available at Hope Biosciences in Sugarland, Texas for stem cell infusions to help with Parkinson's? The right to try treatment has a cost associated with it but it is the cost of producing the treatment. There would be travel costs of going to Texas as well. A hotel across the street from Hope may offer discounted lodging for those having treatment.

[House2]

Don't forget the PONS device.

heliusmedical.com/about-pons/

[Furch in reply to House2]

Yes I read a little about this device. Also there is a device available here in the US called the Healy. But it seems so controversial when I read the reviews.

[House2 in reply to Furch]

youtu.be/D0Qa_BkQNg0(Not working as expected?)