Experimental Tongue Therapy Helps Restore Brain Function

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NHE
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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A small pilot trial with the PoNS in 10 MS patients found positive results on the Multiple Sclerosis Impact Scale-29 (MSIS-29) survey.


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Re: Experimental Tongue Therapy Helps Restore Brain Function

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Helius Medical Technologies, Inc. Announces Addition of Three New PoNS™ Authorized Clinics in Canada
https://heliusmedical.com/index.php/new ... /2019/280-

NEWTOWN, Pa., June 05, 2019 (GLOBE NEWSWIRE) -- Helius Medical Technologies, Inc. (Nasdaq:HSDT) (TSX:HSM) (“Helius” or the “Company”), a neurotech company focused on neurological wellness, today reported that three new clinics have been authorized to provide PoNS Treatment™ in Canada, giving Canadians broader regional access to the Company’s innovative treatment. The new clinics join the current roster of existing clinics authorized to provide the PoNS Treatment, including Neurotherapy Montreal and Surrey Neuroplasticity Clinic.

Since opening the first authorized clinic, Neurotherapy Montreal in Quebec, in December 2018, and the second authorized clinic, Surrey Neuroplasticity Clinic in British Columbia, in February 2019, the Company has made it a priority to make the PoNS accessible to patients from coast-to-coast. Joining the existing PoNS authorized neurological rehabilitation clinics are Advantage 4 Athletes Training Center and Therapy Clinic in Markham, Ontario; Synaptic Spinal Cord Injury and Neuro Rehabilitation Centre in Calgary, Alberta; and Apollo South Physical Therapy Centre in Ottawa, Ontario.

The clinics were selected by Heuro Canada Inc. (“Heuro”), a company organized pursuant to the strategic alliance agreement between Helius and Health Tech Connex, Inc., to develop a system of clinics authorized to provide PoNS Treatment through the Heuro Program in Canada. Heuro is focused on improving the quality of life of Canadians experiencing chronic balance deficits caused by mild-to-moderate traumatic brain injuries and is proud to now offer the Heuro Program featuring PoNS Treatment in five of Canada’s largest census metropolitan areas.

“We are pleased that the strategy to accelerate expansion plans in Canada has driven the further development of the clinic system authorized to provide PoNS Treatment,” said Philippe Deschamps, Chief Executive Officer of Helius. “Patients who have had mild-to-moderate traumatic brain injuries are often not able to travel long distances and now, with a presence in Montreal, Vancouver, Toronto, Calgary and Ottawa, over 50% of Canadians will have direct local access to PoNS Treatment,” continued Deschamps.

The PoNS Treatment is an innovative, non-invasive treatment which combines the use of the PoNS™ device with targeted physical therapy. The PoNS device is authorized in Canada for the acute treatment of chronic balance deficit due to mild-to-moderate traumatic brain injury, and is to be used in conjunction with physical therapy.
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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I called Apollo in Ottawa and they said they should have the PoNS devices in stock by August. They put me on "the list". I also heard that the cost is around $30,000.00!

This is really insane. I mean is the device made out of Gold or Platinum? Finally there is a treatment that helps and they price it to the MAX!!!! :lol:
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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hargarah wrote: Fri Jun 07, 2019 7:56 am I called Apollo in Ottawa and they said they should have the PoNS devices in stock by August. They put me on "the list". I also heard that the cost is around $30,000.00!

This is really insane. I mean is the device made out of Gold or Platinum? Finally there is a treatment that helps and they price it to the MAX!!!! :lol:
It's 2 weeks of intensive PT at the clinic followed by 12 weeks of at home PT with weekly testing at the clinic. Yes, the price is steep. Did they send you the treatment protocol files?
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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Wouldn't this treatment be covered by OHIP if you are living in Ontario or other medical insurance?
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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NHE wrote: Sat Jun 08, 2019 2:29 am
hargarah wrote: Fri Jun 07, 2019 7:56 am I called Apollo in Ottawa and they said they should have the PoNS devices in stock by August. They put me on "the list". I also heard that the cost is around $30,000.00!

This is really insane. I mean is the device made out of Gold or Platinum? Finally there is a treatment that helps and they price it to the MAX!!!! :lol:
It's 2 weeks of intensive PT at the clinic followed by 12 weeks of at home PT with weekly testing at the clinic. Yes, the price is steep. Did they send you the treatment protocol files?
Regarding the cost, I had a family member who was in PT following both hip and knee replacements. Medicare was billed $380 for a half hour session if I remember correctly. PT isn't inexpensive. Here in the US, a PhD is required to be a physical therapist.
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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NHE wrote: Sat Jun 08, 2019 2:29 amDid they send you the treatment protocol files?
Here's a description of their treatment.
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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This might be bad news for PwMS. Phil Deschamps, CEO of Helius Medical, recently spoke at the JMP Life Sciences Investor Conference in New York. He indicated that if/when they receive FDA approval their next targeted indication following balance disorder following TBI will likely be cerebral palsy.

HeliusJMPSecuritesLifeSciences2019-06-19.mp3
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zen2010
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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Hi,

I will post my feedbacks regarding the PoNS treatment as I started it 4.5 weeks ago in Montreal.
I will be glad to answer your questions if any.

A facebook group was created to discuss this treatment (Montreal PoNS group:
https://www.facebook.com/groups/302880607309645/) => if you're interested, pls ask Kamran to add you to the group.

First of all, Norman Doidge's book & the communication from Helius company have created HUGE hope about this treatment. If you read the book/listen to them, it's a "wake up and walk" thing.

I am sorry to say it's not true at all.

Not only my case (EDSS 3.5) but also the numerous MSers (& others)
I met in the clinic who came cause of Doidge's book.
I even met an old couple from UK who came for their young daugther. She had minor TBI (Traumatic Brain Injury).
The men was furious as his daugther's symptoms haven't improved at all after completing the program (I remember him telling me with anger: Nothing!!! 0!!!).

The small amount of patients with positive improvements I met , had less pain and also better static balance.
However, when you are moving, static balance doesn't matter...

I am not saying the PoNS is total BS, I just want to warn you.
The treatment is very expensive (30 000$ before taxes), so think carefully about it and get as much information as you can before spending this huge amount of money.

Here is my feedback (I posted it on the facebook group) after my first 4 weeks:
Hello,

As promised, here is my feedback after 4 weeks:

The first 2 weeks went well, physiotherapists are really great and I met really nice people at the clinic.

After 2 weeks comes the first assessment.
Results were really good, balance improved and some symptoms (spasms + pain behind my eye) almost disappeared.
As balance and gait are somehow linked, gait also improved.
Quality of sleep also improved significantly.

Needless to say how happy I was!!!

Middle of week3: I don’t know what happened but all improvements disappeared.
I guess it was just a placebo effect.

What a disappointment…

I noticed a small improvement while doing the physical exercises in the clinic.
However, it might just be a consequence from the physical therapy.

So,
I’m a bit disappointed as I had huge hope.
Also, the current weather (very hot) is not helping.

I am sorry, I would love to tell you the PoNS is like magic, but it ain’t true .
I will continue the program and provide new feedbacks after week8 (second assessment) or before if anything special…
Answers to NHE's questions:
The electrical stimulation feels like bubbles cracking on your tongue. It's not painfull.

It's a 14 weeks program. I went to the clinic every day the 2 first weeks then the rest is done at home. I just go to the clinic once a week for a follow up (they adjust the exercices if necessary).

The pysiotherapy is made with exercises related to balance(standing on a foam with eyes shut) and gait (walking exercises). In the evening, I have to meditate with the device during 20 min.

The clinic provides chart of our progress. After my first 2 weeks my charts were really good. However, I guess it was just a placebo effect (see feedback above)
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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Sorry to hear it did not work for you but glad to hear some are being helped.

i have tried numerous treatments and in general I have had the same experience that you had with this one, where I thought the treatment I was doing at the time was working at first and then realized after a reasonable period of time it really wasn't.

BUT we have to keep trying and since different people have different results, it is worth trying any relatively 'safe' treatment like this one for yourself because you never know!

I don't know much about the PoNS device, but as I believe I mentioned previously, I had tried a device that seems, very, very similar in design/functionality to it with the main difference being that the sensors (2 of them) went on the temples rather than the tongue. But in the end, the basic concept is the same - a small electrical signal goes to the brain and is supposed to 'help'. And while many of the users of the device I tried reported then and still do report favorable results (the company has a lot of excellent positive feedback on their website), I did not experience any improvements.

IMHO the treatment period is much too short and usage over a longer period of time may be needed to find out if ANY new treatment is of benefit. I used the device I had purchased for well over a year before I stopped using it.


Did a reasonable number of the people you met have favorable results?
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zen2010
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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ElliotB wrote: Did a reasonable number of the people you met have favorable results?
No
Not only my case but also the numerous MSers (& others) I met in the clinic who came cause of Doidge's book.
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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zen2010 wrote: Wed Aug 07, 2019 5:41 pm
ElliotB wrote: Did a reasonable number of the people you met have favorable results?
No
Not only my case but also the numerous MSers (& others) I met in the clinic who came cause of Doidge's book.
Sorry Elliot for my very short answer.
It's just that me + many others patients, are quite angry with Norman Doidge and Helius for giving false hope to patients around the world (I met people from UK, Romania, Holland, Australia, New Zeland etc...)
So, I was not in good mood when I replied.
Sorry again.

I agree with you when you say 14 weeks maybe too short to get any benefit.
In fact, most of patients in Montreal agree with you.
There is an option to prolong the treatment but it's an additional cost of 5000$ for 14 weeks.

And then after, you can prolong again...for 5K

For MSers, Parkinson, and other autoimune diseases, that means 5K for life...
This is not an option (we are not celebrities like Montel Williams!)

As most patients in Montreal are MSers, we are currently discussing with the clinic and Helius to find a solution there...

We are also trying to find a place/website to provide feedbacks.
The goal is not to fight Helius.
We just want patients to know more about the PoNS. (If some patients have improved, they will for sure report there).
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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zen2010 wrote:For MSers, Parkinson, and other autoimune diseases, that means 5K for life...
This is not an option (we are not celebrities like Montel Williams!)
Montel is likely biased. He was a cofounder of MPJ Healthcare, the company that became Helius Medical. The Montel Williams Foundation owns 1.4 million shares of Helius Medical. Moreover, Montel Media was paid $245,000 during 2017 & 2018 by Helius Medical to promote the PoNS.

https://www.sec.gov/Archives/edgar/data ... 181231.htm
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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"For MSers, Parkinson, and other autoimune diseases, that means 5K for life...
This is not an option (we are not celebrities like Montel Williams!)"


There are other more affordable options for devices that basically do the same thing as he PoNS as I have mentioned before. I have personal experience with the Fisher Wallace Stimulator (there are many other similar devices available):

https://www.fisherwallace.com/?utm_sour ... BWEALw_wcB

And although I did not have much benefit from it for for the primary purpose I got it for (I was hoping it would help with my nerve pain which it did not but I always felt great after using it), I still recommend it, especially at least to try it out because you never know. It is only $700 and comes with a 30 day trial period. You own it outright and use it as much as you want from the comfort of your home. It is FDA approved and after being available for many years, has very high customer feedback. You can read reviews here, many by doctors who have their patients using the device:

https://www.fisherwallace.com/pages/pat ... stimonials

AND it is very, very similar to the PoNS device in the way it works.

Here is a link to another similar device I found that is $250. I found this by doing a simple web search - I have not used it and know nothing about it:

https://www.cesultra.com/index.php

There are numerous others - you can find some of them by Googling "brain stimulation therapy".
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zen2010
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Re: Experimental Tongue Therapy Helps Restore Brain Function

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Hi,

FYI : starting next week, the pons device cost will be cut in half as the cost was too high to recuit patients.
New cost will be around 15K

Helius needs data to get FDA's approval.
As they plan to collect data from participants, cost must be affordable.

The clinic in Montreal is almost empty....
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