Cue1+ wearable tech

[SarahHes]

I signed up ages ago to be notified when this new wearable device came to market, and received an email today saying I can now place an order. It’s not cheap, but if it really delivers the benefits that the manufacturers claim it does, then I’ll get one for my dad.

It’s designed to deliver ‘focused vibrotactile stimulation’, that purportedly helps with gait, freezing and other aspects of movement.

Has anyone got any experience of using one? Or does anybody have any thoughts on whether it could work, or whether it’s likely to be a waste of (quite a lot of) money?

charconeurotech.com/what-is...

[Fed1000]

I requested it four years ago and they still tell me that they must receive undefined authorizations to the marketing of the product in Europe.

[Boscoejean]

We went on the waiting list over 4 years ago when I first found out about it but I doubt it will ever be available in the US

[16Dahlias in reply to Boscoejean]

I’m disappointed to hear that. I’ve been waiting with hope.

[Windermere1]

only available in uk at moment. I have it and it works well 100% refund after 6 months if not satisfied Brilliant customer service

[SarahHes in reply to Windermere1]

Interesting, thank you … can I ask if it is helping with your gait / freezing? Dad has had a couple of freezing incidents over the last few months that have really scared him, and one resulted in a fall that could have been nasty (luckily he was OK). I’d pay £700 for something that could reduce the risk of that happening again ….

[jocelyng in reply to Windermere1]

is it possible for an American to go to the UK and make an appointment with the doctor and buy one?

[SarahHes in reply to jocelyng]

To the best of my knowledge it’s not something that is provided through the health system (private or NHS) - they are manufactured by a commercial company. I don’t think they are able to sell them in the US market yet.

[jocelyng in reply to SarahHes]

I know they aren’t available here. My question is whether an American can buy one in England?

[awfultruth in reply to jocelyng]

Logically the problem might be in needing a UK delivery address. Since they cannot legally sell in the US yet they would probably not ship to a US address even with a UK docs prescription. Actually I don't know if a doctors prescription is required? And of course there is the wait list. I imagine you would need a UK address to get to the top of the wait list. Those of us in the US on the wait list will not rise to the top of the list until they have permission to sell here. Of course all of the above is just conjecture but I suspect the UK address is what is lacking.

[Windermere1 in reply to jocelyng]

No you can’t buy one from a dr in U.K. put your name on the cue1 website wait list and when the FDA give Charconeurotec authorisation to sell in USA your name will be in,I’ve to buy one and get all Charco support that goes with in.

I did however hear that a daughter living in U.K. got one for her father who lives in South Africa and he is doing really well with it.

[jocelyng in reply to Windermere1]

I am on the waitlist. Thanks.

[CuriousMe12]

I bought one.

1) I suspect that the waiting list is kept high to keep the price high. A marketing technique.

Or because they need to increase support, the more they sell.

2) There's nothing special about the technology. It's a circular piece that sticks to your sternum. It vibrates exactly as your mobile phone might vibrate when called.

3) Does it work ?

For me I'm still deciding. If there's any benefit then it's minor, possibly placebo.

4) unfortunately theres no alternative product to make it competitive. I'm surprised someone in China hasnt cloned it and produced them for £40 instead of £700.

[AGH_1966 in reply to CuriousMe12]

I am in much the same midd. I stopped using mine after a few days and it is sat its box. It may help some people, but not me.

[SarahHes]

thank you, that is really helpful. I am highly susceptible to snake oil salesman, especially when I want something to work so very badly. I hope a product cloner in China reads your post!

[Windermere1 in reply to SarahHes]

you obviously haven’t researched the product or charconeurotech the company. Join their fb group. Send them a email with your questions then you will realise what they are trying to do for Parkinson’s sufferers. What more can they offer other than 6 months of total,support to get the settings to suit the individuals needs and if after 6 months you are not happy you get a full refund. Curious me is giving false information in my opinion. Find out for yourself and make a decision based on facts that will help your dad.

[CuriousMe12 in reply to Windermere1]

Be clear where the false information is.

I researched it.

I'm currently trying the settings which isn't hard, it's setting the pulse power, duration and gap between pulses. No joy yet.

[SarahHes in reply to Windermere1]

I’ve spent some time researching but can’t find any independent scientific reviews. Charco’s material looks very compelling, but as far as I can see their research isn’t peer reviewed. There are plenty of anecdotal accounts from users of the device out there, some positive, some negative (although all positive about the company and its commitment to customer service). So maybe I just need to buy one on the basis that if Dad is one of the people for whom it doesn’t work, I’ll get a full refund….

[CuriousMe12 in reply to SarahHes]

It may help your dad's freezing of gait (I don't yet have that problem) as the pulse vibration may act as a trigger.I'm wanting it to improve my gait but not much doing there yet.

[CRMACK1948]

It didn't work for my husband,but know people who it's been amazing for.Its NOT just like a mobile phone buzz,the science is proven,and being used now in at least one UK hospital The support team are topnotch,and 100 percent refund if it doesn't work for you.Go for it!

[CuriousMe12 in reply to CRMACK1948]

It's exactly like a phone buzz.

Addenbrooks hospital took some 1.5 years ago and still haven't reported back.

Rory Cellan-Jones the British journalist with Parkinsons took one a year ago under a lot of publicity. I'd like to hear his feedback.

[SarahHes in reply to CuriousMe12]

rorycellanjones.substack.co...

R C-J seems unconvinced, although he seems to be sticking with it. Reading his piece, I’m also curious about the big price increase - he says his Cue1 cost £295 in 2022, whereas the price tag on the Cue1+ (the one now available) is £795….

[CuriousMe12 in reply to SarahHes]

Yes that's the other thing. 300 is a lot for a vibrating attachment but im not sure of the justification of adding an extra 400 to make it 700.As far as I can see they've only added an app which allows you to set the vibration strength, length of pulse and gap between pulses (nothing revolutionary).

Cue1 app

[Carpediadem]

I wondered if any vibrating ting/toy would do the same So I bought two vibrating balls with tags on the surface and a nice bra and as a man i have never ever got so much attention.

[BootsOn in reply to Carpediadem]

🤣🤣🤣

[gingerj]

Hi Sarah, I bought one last year and tried it once. I don't have difficulty walking so it gave me no benefit.If you want it, You're welcome to it. I can message you my email address so you can send me your delivery address.

I work for royal mail so can send it at no cost. Better it be used than sat in a cupboard.

Let me know

[SarahHes in reply to gingerj]

That’s incredibly generous of you - but are you sure you shouldn’t keep it in your cupboard just in case you do need it some day (although I hope that you don’t)? If you are absolutely certain that you want to pass it on I would happily pay you for it - dad struggles awfully with his mobility so may fall into the category of people that the Cue can help.

[gingerj in reply to SarahHes]

No need. If your dad may benefit from using it I'll send it to you. I'll message you My email address.

[Gonehome]

I was on the waiting list for years and completely forgot about it. I got notified three weeks ago that I could have one and I received it two weeks ago. It is rather be beautifully designed but it seems very expensive and when I first used it I was expecting it to work immediately and was really disappointed because it seemed to have no effect at all but I have kept trying it. After five days it started working. And over the last four days it has been totally amazing. When I’m wearing it, I don’t freeze at all. It’s early days but I’m very hopeful it really does seem to work.

[Farooqji in reply to Gonehome]

which settings are you using

[Gonehome in reply to Farooqji]

I’m just using the settings that it came with. I haven’t played around with it at all.

[Farooqji in reply to Gonehome]

Did you experience visible benefit or just guessing that it may have a positive effect. I am asking because I have no improvement

[Gonehome in reply to Farooqji]

absolutely no improvement for five days wearing it for eight hours a day then started gradually improving and really noticed when I wasn’t wearing it. My battery ran out yesterday and I really noticed and was wearing it today and was better but to start with felt like it was doing nothing at all.

[Gonehome in reply to Farooqji]

sorry I sent that too quickly . Specifically tonight I stood in a pub for three hours having a drink where as normally I wouldn’t be able to stand for more than 10 minutes.

[Farooqji in reply to Gonehome]

Thanks for the reply

[Taranto98 in reply to Gonehome]

now that is a benefit worth standing up and cheering for!