Hello, I just wondered if anyone has any experience with the Cue 1 vibrating disc created by Charco? I’ve been on the waiting list for my dad for over a year and desperate to get hold of one for him. It’s meant to improve freezing which is the symptom he struggles with the most leading to falls. If anyone has one they didn’t get on with that I can purchase please let me know? Or if anyone has any reviews on them they wish to share I’d love to hear.
Thank you x
I am also on the waiting list. If this device is working for anyone, no one is talking about it. Nothing in the MSM or indeed on this site. I was so hopeful when I read about it, but am now feeling if it was helpful with symptoms someone out there would be telling us?
I am very surprised that there is no conversation regarding the Cue1 made by Charco. I have had mine for about six weeks now. I read a lot of positive comments on the closed Facebook group, but nothing outside this medium.
Personally, it has not improved my symptoms, which are mainly stiffness and slowness. My condition is reasonably controlled by Sinemet but I am now suffering from side effects of the Sinemet (dyskinesia). I still trying to give it a fair go, but am not convinced.
It would be useful to start a conversation on this forum, to report honestly on peoples experience.
Hi Lindsay, thank you for your post. I’d be interested in how anyone who has this is getting along, I registered an interest after reading some of the postive comments and have been added to a waiting list.
Hello AnaElsa,
The Cue1 is still new to market and I think it is still evolving. The company is keen for feedback and ideas for improvement. As I said most reports on the Facebook site are positive, without anyone claiming that the improvements in their condition is amazing. I think it is all about small percentages. Whilst I was hopeful, I didn’t have great expectations, so any placebo effect was probably lost. It is still a mystery to me that there is little information to read on this product.
After having been on the waiting list for around a year and a half, I received my Cue1 in October. At the moment, I am experiencing no difference when using the device, however, I am having discussions with charco to try and find a formula that works for me. I think that the price is set at a level that makes it well worth giving a try, but also may cause people to question whether the price is reflected in the quality. I will report back
Well, that’s it going back now, unfortunately did not work for me. However, the company were very easy to deal with, very helpful and there was no obstacle in gaining a full refund. I would suggest that anyone on the waiting list give it a try, if may work for you
Sorry to hear it didn’t work for you Gordon. I received my Cue1 last week and the difference it has made is amazing (and noticed by friends and family). Length of stride, arm swing, stiffness and freezing all improved. I feel very lucky and hope in time more members of the PD community will find it effective.
I’m interested in other patient experiences with the Cue1 device.
Thanks,
A.
Have you received yours, yet? How much was the device, please?
Thanks,
A.
Hi, I’m the 1st person in New Zealand to have a CUE1. I was on the wait list for nearly a year. The day I received it and started wearing it is the day my Dystonia problem went from 2 to 3 times per days to zero. I could not be without it now. Take care Lynda
It’s been amazing for me, would not be without it
My husband has been using his since August last year. His stride when walking is improved, often swings his arms without realising, other people have commented on his walking. He doesn’t have freezing so can’t comment on that. Charco tech have been a very helpful and approachable company to deal with. It’s definitely worth giving it a go.
It’s be great if moderator Janice can give comment on the CUE1 please - is it Parkinsons UK approved? Does it help with slow gait? Have put name on waiting list but would be great to keep hearing from folks who are using it.
FIRST limited hospital trial -10 devices only at Addenbrookes
https://www.cuh.nhs.uk/news/high-tech-device-to-ease-parkinsons-is-trialled/
my guess is like all things PARKINSONS It will work better for some sufferers than others?
My other question concerns the waiting list phenomenon for the product. If modern production techniques can churn out laptop computers in their hundreds of thousands why the restriction in supply of what must be a relatively simple electronic device to upscale production on?
Really pleased to see that the CUE1 is been trialled and hope the outcome is positive.
I tried it for a couple of months. Sadly it didn’t work for me and I
returned it to Charco and got a full refund. I would definitely encourage you to try it as many people have found it very helpful and it may work well for you. Just as everyone has different responses to medications, the same is true for the CUE1. Charco Support is good so give it a try.
I believe that the BBC’s Rory Cellan-Jones is in the process of trying out the Cue1, but he hasn’t mentioned it on the movers and shakers podcast as yet. While the manufacturer publicises its product widely it seems strange that a burgeoning demand from sufferers of Parkinson’s has not yet encouraged them to increase production. Has Parkinson’s UK approached them about the current supply problem? An appeal for increased production/supply from a national organisation might carry more weight than from mere individuals???
Hi @GROBER, 
Rory’s initial blog post about the device was inconclusive and we’re waiting for more compelling evidence that the device benefits people with Parkinson’s. Throughout the development of the device we’ve had contact with Charco Neurotech and we’ll get in touch with them to explore the supply problems and share any outcomes. However it’s worth noting that the device hasn’t been approved by NICE for use in the NHS yet.
As an organisation we’re looking to develop our work in this space to ensure we can test devices and gadgets that may help, so we can provide people with Parkinson’s with clear guidance before they purchase anything.
I hope you find this information helpful.
Best wishes,
Reah
Thank you REAH
The "clue " to the CUE 1 I believe is to increase the number of devices in use in the general populace. Like any drug approved by NICE it would be subject to large-scale trials as to its therapeutic effects using carefully controlled large-scale placebo v real trials. Without production of large numbers of the device is going to be very difficult to mount such trials. As I said before I suspect it’s effectiveness will vary from individual to individual but even if it only helps 50% or more it would be worth it. So the key to its development and approval is to increase production numbers to trial it on an adequate percentage of the Parkinson community to get meaningful results.
Accompanying this should be contemporaneous development of a tremor monitoring application for android phones which can use their built-in accelerometers to get an accurate measure of tremor. This would permit accurate measurement of the device effectiveness as opposed to mere anecdotal evidence. Reiterating-the key to assessing this device adequately is reliant on how many are being used by Parkinson’s sufferers– without this there can be no means to clinically assess its effectiveness and get NICE approval.
Coincidentally there was such a tremor monitoring programme developed to run on Apple devices several years ago it was called tremor 12.
The development of a universal tremor monitoring application to run on android mobile phones would be of great clinical assistance also to the medical community in monitoring the effectiveness of the many drugs that are used to treat Parkinson’s symptoms it would not be confined to merely monitor this device. It might be an avenue Parkinson’s UK might want to explore since most sufferers have a mobile phone all they need would be the application software?
