Use of PoNS & rTMS for Parksinsons

[evelyn05]

Just came back from a visit to the NeuoTherapy clinic in Montreal. They use both the PoNS device and rTMS for Parkinsons (off-label). Has anyone tried either of these and, if so, what type of improvements have you had to your symptoms? We were told that Montel Williams (with MS) continues to use the PoNS on a regular basis with success.

[Parkie-]

Hello Evelyn05

Did the NeuroTherapy clinic in Montreal propose a treatment? What was your impression of what they do?

I had a phone appointement with them about a year ago after reading some promessing studies on rTMS on the Web. Unfortunately, they admitted having treated just two or three pd patients so far. And only one patient had a slight improvement while the other one or two had none. And it was quite expensive.

[evelyn05 in reply to Parkie-]

Apologies for the delayed response. At the Montreal clinic we went specially for the PoNS, so they focused on that. They wanted to do an assessment to 'qualify' my husband (Shazam) for the PoNS. Basically was told the same thing as you mentioned. Important that the PoNS has been approved for TBI in Canada and under review with the FDA in the USA - again for TBI. We just don't think it's ready for prime time yet with PD. We also went to a Neuro clinic in Surrey for the PoNS earlier this year and found the price dropped for the 14-werk treatment from $30,000CD to $23,000CD. We did connect with one PD patient who did the program with some improvements in gait and fatique. Something to keep our eye on, but do plan to pursue the Neurofeedback as you suggest. Thanks for the response.

[ktbate]

Hello, I was a research participant at the U of Wisconsin for the PoNS device for 6 months. There were maybe 4-5 people w/ PD. As far as I know they abandoned their pursuit for PD because there wasn't much improvement. It was quite laborious as we had to put the device on top of our tongue with the battery hanging outside the mouth while walking on a treadmill for 20 min several times per day. Also had to balance on a rubber mat. I heard they switched their target toward military injuries. I wouldn't spend any money on it.

[vwolff in reply to ktbate]

You're experience is very interesting and potentially valuable to me. I have used the PoNS Technology, but I used my own version it. The Patent Is available online, I use that as a guide for engineering and assembly of a Neuro modulation stimulator. I have had marginal success in treating my PD using my Device. I use it mostly for meditation, stationary cycling and treadmill walking. As you can imagine this was no small task. I have invested much time and money out of my own pocket to develop a suitable device. I would greatly appreciate knowing more about your experience. Do you still use the device? If not, how long did you have use of it? Did you have balance problems when you began using it? What improvements did you notice? Thank you very much.

[ktbate in reply to vwolff]

You sound like a pretty interesting person. Are you a scientist? As I said I didn't see much improvement with the PoNS. I had very good balance prior to the study and still did up until about 6 mos. ago. I have never fallen. We were not allowed to keep the device after the study. I thought the PoNS sounded promising. The testing showed mild improvements. During the time that I was in the study I had not started taking any meds. I had a left side tremor and and a slight foot drag. Happy to answer any other questions.

[vwolff in reply to ktbate]

Thank you but I'm not a scientist. I am a retired s engineer. How many sessions did you exercise at the lab per day? Were they all on the treadmill?

[ktbate in reply to vwolff]

About 4 X per day for 20 min. on treadmill w/ PoNS, we were told to meditate w/ PoNS once per day, also had to balance on a 3 in. foam pad w/ eyes shut raising our arms out in front of us for around 10 min 2X per day. We did it at home, I even bought a treadmill for the study. We kept written records and went in to be tested every 6 wks. They tested our eye movements and tested for cognitive improvements

Tell me about your red light hat.

[vwolff in reply to ktbate]

Red and infrared light treatments have allowed me to regain some of my sense of smell. I built my own Red Hat device. There are many devices on the market but I chose to follow instructions from a doctor out of Australia. Would you like a link to the doctor's Web page?

[vwolff in reply to ktbate]

I found link to The Australian doctor who provides information on building red hats for parkinson's therapy.

redlightsonthebrain.blog/

She runs a nonprofit organization to help PD

[evelyn05 in reply to ktbate]

Thanks for the info - very interesting what you wrote. The person we met in Montreal who runs that clinic was also involved with trials. He knows the inventors and people who run the company (Helius Technologies). The device is approved for TBI only in Canada and under review in the USA for TBI as well. We believe it has its place, but not for PD yet.

[ktbate in reply to evelyn05]

I wish there was a better delivery system for the PoNS. Placing the device on your tongue and and having the battery hang out of your mouth was not very pleasant. I am guessing they have been able to reduce the battery size, The hard thing was putting in all the effort and not getting much improvement. I have tried so many new things over the last 9 yrs. --- none of which have made a difference. I just had DBS surgery 3 wks ago. I'm in the 6-12 mo. programming phase. Very slow progress so far.

[evelyn05 in reply to ktbate]

The PoNS unit we saw and my husband put on did not have a battery hanging out of the mouthpiece - just a headpiece which now houses the battery. Design has improved significantly. We know someone who had the DBS and they hit the part of his brain responsible for speech. Sad, but he can no longer talk. My house and will not do anything invasive. Good luck to you.

[Parkie-]

Hello Mhberman

Thank you for your reply.

Would you have any links to studies showing positive changes in pd?

[Parkie-]

I did send.

[Parkie-]

Why are you asking email addresses?

[evelyn05]

Send to [e-mail]. thanks

[Parkie-]

It has been a week, still didn't receive.