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Ataxia Support Network

BrainPort device available now


#1

I just found out that the BrainPort is available in Canada. This is an early version at the PONs device and Wicab, the company that manufactures it, got approval to sell it in Canada, but not In the US. They had not sod it for a number of years, but just started up again. It is designed to treat balance problems due to stroke, ototixicity and TBI. I have no idea if it would help us, but who knows? I am considering trying. It works by basically putting a gyroscope on your head and sending electrical signals to your tongue o show if you are off balance. The therapeutic things are likely the electrical impulses to the tongue which stimulates the brain.


#2

Good news for sure, I’ve been following the PONS device since nearly it’s inception. An intriguing one, hope it helps some, (maybe all).


#3

I can’t seem to find any pricing, do you know how much one would cost?


#4

In 2015 $10,000 was mentioned. This device seems to be aimed at helping blind people ‘see’ by means of their tongue :thinking: Would it be of any benefit to the average Ataxian, am I missing something :thinking: xB


#5

Yes. It is being offered through lifemark. The cost for the device is $6700 CAD or about $5200 USD. The way it works is that you commit to 4 training sessions at about $125 USD. This is before you buy the device. If you do buy the thing it costs about $300 in duties to bring it into the US. There is an application. Look at the FAQ at lifemark to see all the details.


#6

I should have said that each of the training sessions costs $125 and you commit to 4.


#7

Pity it’s a little pricey. Unfortunately it is out of my financial reach by quite a bit (what is the value of a cure/treatment though?).
I’d be curious to see some results for those with ataxia. My neurologist had never heard of it at my last visit in April. I would like some concrete, trustworthy, professional validation also before making any sort of commitment.
I will continue to follow. It is intriguing for sure.
Here in Ontario, Canada we’ve had two well known, reliable, and respected media sources (CTV and CBC) cover this device. Not to mention it comes with some celebrity endorsements (Montel Williams)
In reading some other forums there is a little bit of scepticism with valid points against the device, and equal discussion cautiously in favour of it, again with valid points as well.
So at this moment it is a “wait and see” situation for me.
Thanks for the info.


#8

Speaking of the tongue…here’s a tidbit that helps me relax and not get stressed. One, take a moment to sit quietly. Notice where your tongue is–is it on the floor of your mouth or tucked up to the roof of your mouth? If it is at the roof of your mouth, this activates stress throughout your body. Try bringing it down to the floor of your mouth. This may, as it did for me, take a bit of practice to notice it naturally resting on the floor. But when it does, our stress can be relieved. JD


#9

Hutchy, I’m not sure how it works with a NHS since I’m in the USA and work within our insurance industry. But I do know that in the USA you can appeal to the plan for coverage and you will get a personalized review based on your situation and your needs. The trick is, the piece of equipment has to have some sort of proven ability to help – studies, reviews that are not manufacturer based, peer medical reviews, something to give you leverage to request coverage. General media and star endorsements won’t work. I’m not sure that’s available yet for this, but it’s worth some research time.

azurelle


#10

I think typically any such devises would have to get provincial approval first. Even though Health Canada approves something
initially in the health industry, doesn’t mean a province has to follow. For example therapies such as massage, pt, and chiropractic are generally not covered under the provincial health care plan (Ontario at least), some exceptions apply such as age and special circumstances etc. where approval may be granted for funding coverage.
The legalization of marijuana is another prime example of this. Even though it may be legalized Canada wide, it will be up to individual provinces to decide the particulars like distribution and age of legal consumption etc.
So I think here it will be same as the US, for the PoNs, there would need to be some sort of proven patient benefit/advantage from the medical profession, a bar-age of testing before any type of insurance plan (public or private) would even consider it. And even then provincial restrictions may apply.


#11

That is interesting about the Provincial approval. I didn’t know that. In the US, states don’t get to approve drugs/devices separately from the FDA. Helius, the company behind the PoNS, has completed the testing that they use to show the FDA that the device is effective and safe. They are supposed to be preparing the FDA application now. Their testing was rather odd because what was supposed to be a sham device used as a control turned out to have a therapeutic effect. They intend to submit the application based on a control based on the peer reviewed literature. We’ll see how that goes.

Wicab is already offering the BrainPort device in Windsor, Toronto, and somewhere else that I forgot, so they must have gotten the provincial approval they need.


#12

https://www.lifemark.ca also offer therapies to alleviate vestibular symptoms such as BPPV. Scroll down the Home Page to Speciality Programmes, click on Dizziness+Balance/Vestibular Rehab.

Also see https://www.wicab.com > brainport-balan…

:slightly_smiling_face: xB