Pons device rejected by FDA: medicaldevice... - Cure Parkinson's
Pons device rejected by FDA
The FDA strikes again.
I was looking forward to the purchase of the Pons since reading about it four years ago in
Norman Doidge's book. A MAJOR disappointment.
Los Angeles, CA, USA
I agree, weren’t they also using it on military patients? I was hopeful it would eventually be eligible to anyone.
Hi, I replied, but it didn't get sent. The challenges of computers.
Yes, it was used by the military (fairly successfully), and that's why I thought it would have no problem getting past the FDA.
That’s a shame! I was hoping it would be available soon, and after successful use on injured military personnel it seems like it would easily pass through the FDA as you said. Could it still be marketed without FDA approval and bought by the general public?
Of course they rejected it, it involves no meds or big pharma. There is a member here (canpark) who has recently had/having treatment at a Canadian facility with the pons device. I haven't heard how he's going. I too have read both Norman Doidge books and found them fascinating. I wonder if in time we could buy the device from the Canadian suppliers or if they'd take international patients?
Being that I am a retired engineer, I found the PoNS patent available online. I built the Electronics circuits and have used it for several months. Unfortunately, I have not had significant positve results regarding my Parkinson's symptoms. Maybe I haven't used it right: I would love to hear more about your friend who received treatment at a Canadian facility. I don't have a qualified therapist guiding me, so that could be a significant problem with my therapy. I haven't given up, I still use it. Maybe it's just slowing down the progression of my disease. Any suggestions?
I really don't know much about it. I also read about the PONs in Doidge's book and have followed its development.
Hi, the member on this site is called 'canpark', I haven't read any updates from him about how his treatment is going, it was maybe a month or so ago he posted that he was about to start therapy at a Canadian facility. Have you read the Norman Doidge book, I think it stated the regime that the PD patients used with the device. From what I remember even though some positive results where immediate, the most benefit came from long term use. Norman Doidge has a website too, maybe you can contact him about the regime in general that was used, or find the Canadian facility that 'canpark' is going to and enquire about the treatment as if you were interested in attending and what would it entail? I probably wouldn't say you have built your own device as maybe then they'd not divulge the regime info.
I have private messaged ' canpark ' to see how he's doing and if he'd like to share his experience so far.
Yes, I have read his book multiple times. I've read both books . I've listened to and audio reproduction while in the car and have gleaned a few ideas far as how the therapist handled the various patients. But I fear there's something I'm not doing right. I have not gone to
Norman Doidge's website. Thank you that's a great suggestion. I've invested so much time and energy into this project, I'm not going to give up hope.
Hi, up near the top of the page where you click post, search etc there's also a members button, click that and search him in there, I just did it and he's still there.
We are carrying on with it in Canada. Did you see that the Queens University in Canada haas gotten huge success with a stimulator attached to the spine.
one of the fellows at our clinic was from Berkley, Cal.. He had heard about it and quickly got his spot. He says it is 25% cheaoer to do it in Canada because of the exchange rate. I an experiencing changed sinceI started 5 weeks ago, only 9 to go. A lot of hard physio to go along with the pons. Will keep you up to date. FDA - means FOOD AND DRUGS ! Did you see the 40 score to start and the 77 % with Pons and Physio, verses the 85 % for able body people. I 'll take that nyday.
What is the name of the clinic?
What changes have you experienced with the device? That’s great news! Connie
I found the PoNS patent available online. I built the Electronics circuits and have used it for several months. Unfortunately, I have not had significant positve results regarding my Parkinson's symptoms. Maybe I haven't used it right. Can you please describe the " hard Physio" that you mentioned? Maybe I'm not pushing hard enough. Are you doing mostly treadmill?
1=1/2 hours of gait and balance a sessions twice a day as advised by physio, including treadmill, walking ,and other physio designed for each individual. One session at home for first two weeks at clinic, then 12 more weeks at home with 1 weekly clinic session. Not a quick fix but a slow but sure one.
So 3 hours per day of physio?
Daily exercise is: 15 min warm up, 20: min balance physio with Pons, 15 motion control exercise, 20 min gait physio with POns, 20 min Bat (breathing awareness therapy) with pons. Morning.
Afternoon is same except bat session is before bedtime.
So 60 minutes of pons in mornings, and 60 min in .afternoon;/evenings. Physio. Min 60 min each session.
Thanks for the info. I'm not doing as much physio as you described. I may need a trained physical therapist to adapt a program for me? I tried to tell a therapist about what I need and received no help. I've put so much energy into this, I'm going to keep trying. Thank you again, you are an inspiration.
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