New Horizons but a few obstacles that we ... - Cure Parkinson's

Cure Parkinson's

23,245 members24,710 posts

New Horizons but a few obstacles that we must conquer.

Furch profile image
13 Replies

Considering the success of the Gloves and the CEU1 which is finding great results with theory of Neuro-modulation. Not really a new idea. Basically Dr.Charcot was working on these concepts in 1860. But my concern is if indeed is the golden ticket to non pharmaceutical treatment will the greed of the drug companies lobby against these devices. With all respect to terminal diseases. They how "right to try". Why do victims of PD to not have that "right to try?"There is also theories that show treating PD with changing the gut composition with actual " fecal transplant" which sounds odd but again it's used for C-Diff outbreaks. There are many "outside the box" research that is showing promise. But with trials only able to have 20-30 participants. This will be a very slow process within our country?

(USA) and then it very difficult for other nations to penetrate the Hoops of our FDA and drug companies. As in the journey of the CEU 1. I admire these folks who have enough brilliance to develop their own device. I can't believe that anyone who suffers from this horrible disease or is watching their loved one dealing with devastating condition would never put profit over a cure or golden ticket treatment. So perhaps we need someone in our political arena to get the ball rolling.

Sorry I got very long this post

13 Replies
park_bear profile image

FDA is entitled to get involved if it is labeled as a medical device, but for devices that deliver vibration, consider this which is currently for sale at Amazon without FDA approval:

"viraball Physiotherapy Vibration Therapy Ball - Physical Therapy for Hand Tremor Reduction (Parkinson) with Rechargeable Battery – Hands Tremor Reduce & Stress Relief Vibrating Therapy Ball"

It is helpful for temporarily reducing tremor, but I am skeptical any such device will be disease modifying.

Furch profile image
Furch in reply to park_bear

Yes sir: But have listen all of Dr Peter Tess on you tube and are you following his Twitter? It's some really amazing information.

kaypeeoh profile image
kaypeeoh in reply to park_bear

I went to Amazon and got several pages of vibration devices. Most advertising help for trigger points. I tried acupuncture for my arm tremor but never found it to help.

Hapster16 profile image

I can’t begin to tell you how much I agree with you! People that are terminal never get to try anything. It’s those who are in pain that need to try these new methods, supplements devices etc. we need to find a government official that has Parkinson’s to fight this!

Bolt_Upright profile image

In America you might be able to leverage the Right to Try act:

NuroMod profile image

Did you mean CUE1 not CEU1 ? Or have I got it wrong ?

Furch profile image
Furch in reply to NuroMod

CUE1 by Charco Neurotech

busters_dad profile image

i think unless a drug company can show that a vibro-tactile glove is HARMFUL, they will have a tough time blocking such a device. The FDA can tell you that you can't label it or claim it as a treatment for Parkinson's, but they won't go to the trouble to stop the sale of a harmless device. Look at all the supplements that can make almost any claim as long as the fine print says "this is not meant to treat any disease and these claims have not been verified by the FDA..." I think this community of hardware and software hackers can bring access to the average person. You might see the drug companies make a version that DOES get approval just so insurance will pay for their patented version.

Furch profile image
Furch in reply to busters_dad

Very interesting point.

Furch profile image

Ok: My wwp just concluded her research trial. She had to have a pre MRI prior to receiving her device. It was ablind study. However if she received a placebo device I want one

30mins/ treatment twice s day for 12 weeks. It look like a headphone with intermittent hot and cold proves. Then after a month after she turned in her device she had another MRI

So seemed to a thermal form of Neuro-modulation.

Godiv profile image
Godiv in reply to Furch

Furch, Do you think it was helpful for her? Thanks! Or maybe it’s too soon to tell.

Furch profile image
Furch in reply to Godiv

Absolutely but it seems almost cruel that after she discontinued the treatments we noticed a return to the pre-trial condition. But even the idea of 50 mins a day with the positive results would be well worth it. I hear folks say things on various sites and chats. That some people don't get any relief from the various Neuro-modulation devices. However I hear the same complaints about medication. What I don't hear is anyone having negative side effects from Neuro-modulation devices. We certainly can't say the same about the medications.

Godiv profile image
Godiv in reply to Furch

I’m sorry. I just realized that it’s been two months since you were discussing this. But anyway, I agree with you. We’ve got potential side effects with meds like hallucinations, falling asleep suddenly and so on and so on. Dyskinesia. So devices are very appealing.

I’m sorry they took it away. Especially after she improved . That seems very cruel. I wonder what the device was cold. I haven’t heard of anything like it.

Although perhaps I’m getting devices confused. The Charco Nuro tech device is the external that fits on the chest, correct? It’s out in the UK but not here yet. Anyway thank you so much.

You may also like...