Keep Trying

Most of us at some point have tried or will try that wonder drug or supplement that will cure or stop progression of your said condition.
Who knows what will work or not, and for which conditions. As scientists, usually the focus is on one disease at a time. As patients our focus is on our disease and maybe how it relates to another.
Often we try new things thinking (hoping) they will work for us. Even if the treatment has no medical merit, if you believe it works and it seems to help, why not stick with it. What is there to loose?
And believe me I have done my share of “self trials” (what is deemed as safe of course) and you should always consult your physician before trying a new treatment.
The important thing to remember is: “you just never know what may be an amazing discovery”.
There is always hope around every corner, keep trying new things, share ideas and potential treatments, and never give up!

:slightly_smiling_face: When I was a ‘newbie’ I once asked a Neurologist (at a Conference) whether Chia seeds were helpful to Ataxia :grimacing:I’d been trawling the internet, and hadn’t any idea at that point what was what. But, I was vulnerable and open to suggestions :smirk:

Although we’re awareness that research is constantly in progress, clinical trials are recruiting and various drug companies are speculating about their latest wonder drug, it’s the here and now that really concerns me. Managing from day to day :slightly_smiling_face:xB

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I have been thinking about the issue of hope a lot lately. I am hopeful that using thePoNS device will take away lots of my symptoms. I have been following it for over two years now,and FDA approval has always been six months out. It may really be true this time, since one trial has ended. I have done everything I could think of to use it pre-approval, but had no luck. They didn’t want me for a trial, Compassionate Use didn’t work, etc. I am wondering now if the hope is more important than the treatment. I also wonder how hope fits in with acceptance. After seven years I should have accepted my problems now. I thought I had. If I am holding out hope that my situation may change, does that mean I haven’t gotten there? This may not seem to matter much, but it is something I struggle a lot with.

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:smirk: My first ‘step on the ladder’ with what turned out to be Cerebellar Ataxia, was in 1991. I suppose you could say I’ve accepted the situation by now, or have I just gotten used to it and forgotten what ‘normal’ was like :thinking:
Logic tells me there will be something found to stop the progress of this challenging condition :slightly_smiling_face: xB

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Dear Linda4, I have also been following the PoNS device also in hopes that it will eventually (?) be approved by the FDA and I can get a perscription (if need be, as I have no idea how the device will be marketed (?) from my neurologist to get one to try. I’d even be willing to buy my own device (when/if approved by the FDA), as that’s how desperate I am to be able to try something that MAY actually help! I would imagine there are many ataxians that feel the same way! I’ve had an unknown cause of ataxia for 20 years now (diagnosed 13 years ago, but had extremely minor symptoms starting about 8 years before formal diagnosis). As ataxia progresses, mine has also over the years. In my very humble opinion, it’s difficult to accept something that keeps changing/progressing. I am eternally hopeful though, because that’s my postive nature! My best to you…,;o)

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The PoNS device is supposed to be approved around the world in the first half of 2018. They may really do it this time, but we shall see. I think the model is that we buy the device–available only by prescription, cost unknown by me
And then we get physical therapy that is by prescription and that insurance will pay for with whatever deductible expenses we have. Insurance will not buy the device, though. One person said he thought it would cost $5,000, but it is not clear what that is based on. I think it will be necessary to go back to the physical therapist every three months to get the device reset. My ataxia is fortunately not progressive, so I should have accepted it many years ago when it became clear there was nothing I could do about it. I keep hoping though…

I’ve done a bit of research on this device, even thought research and testing is being conducted in Canada (Montreal) Does anyone know what the release parameters will be in Ontario Canada? How soon will it be available here? How much will it cost the patient?

I don’t know how much it will cost in Canada but I do know that they say it should be available next year. Of course they said it would be available twoo years ago,too, so I’ll believe it when I see it. The schedule they give now may be right because the clinical trial ended a couple of months ago. The research is actually being done in the Us and Canada and it sounds like Health Canada and the comparable organizations in the U.K. and Australia are looking to rely on theFDA’s conclusion. Helius is the company that will be selling the PoNS device. They have made arrangements with other companies dor selling the device in Asia and the countries in the former Soviet Union. The clinical trial was for people with TBIs, but since my problem is kind of like that, I am hopeful.

Good to know. I will keep my eyes open, stick out my tongue to the right and keep my fingers crossed lol. I suppose as long as Montel Williams endorses it, it will fly. It appears by the media attention that it has received (here in Canada at least) that it shows a lot of potential in the M.S. society as well as for TBI’s. Let us hope that it will work for all.

I never knew that sticking one’s tongue out to he right helped. I’ll have to try that in the future!

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I am hoping for the miracle!

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Lol, well it can’t hurt!