Cue 1 by Charco

[Reah]

Hi @GROBER,

Apologies for my delayed response - I was liaising with a few of my colleagues to ensure that I was relaying the correct information to you.

We’ve been in touch with Charco Neurotech and they have gone through a licensing process with the Medicines and Healthcare Products Regulatory Authority and are scaling up production. They hope people won’t need to wait too much longer, especially if they are in the UK (approximately 2-3 months).

They also inform us there are about 1,400 people using the device in the UK. They noted that they are also working with the Eastern Academic Health Science Network on further research to demonstrate the health-economic benefits of the CUE1 device and how it can improve treatment pathways and be made available through the NHS.

One of the outputs from the 10 years of Parkinson’s UK funding to the Oxford Parkinson’s Disease Centre was a smart phone app which can measure all aspects of Parkinson’s movement symptoms, including tremor, this is currently being marketed through NeuHealth.

Again, I hope this is helpful to you.

Best wishes,
Reah

[Tot]

Hello all
I’ve read with interest the various posts around the Cue1. I am due to have mine delivered on the 18th of this month and thought I would write up my experience as fully as I can as it may be helpful to some still waiting. Please bear I mind that I can only write from my own experience and perspective and you may not find it as I have.

Part 1 Background.
Like most if not all of us, I was on the waiting list for quite a while and heard nothing from them until early May when I received an email informing me my Cue1 was ready. To be honest I wasn’t bothered that I personally had heard nothing from them since applying. I received their regular news updates, I was on the waiting list, I hadn’t paid out any money to them and most of the time didn’t give it much thought.

Following receipt of the email, I accepted and arranged to pay by 12 instalments. They were offering a free personal delivery service by a member of the team to help set up the Cue1, be shown how to wear it and answer any questions. It seemed sensible to take up this offer but obviously delivery was a bit slower due to the practicalities of organising a visit. I was told about two months and was offered a date in June which was quicker than expected. I received a phone call just after 6.00 pm one evening which did surprise me a little. We put the date back as my personal trainer was interested in this device so we opted for a date when she could be present. This was not a problem and everything was confirmed in a virtually instant email.
I also agreed to participate in their ongoing research and this email contained full details, a consent form and various validated questionnaires to be completed and returned. The validated research questionnaires gave me the same problems they always do. I understand they have to be measurable, repeatable etc but often felt I didn’t quite fit. I answered as best I could and said this where appropriate on the forms.
I was informed that the visit would take about 2 hours including some baseline data for their research.
Two more things to add. I needed to check the Cue1 wasn’t contraindicated by the shunt fitted for my hydrocephalus and they responded promptly to all emails regarding this.
Finally you don’t have to wait for the device to use the
Cue1 app which can be used as a stand alone or connected to the device. I found it very easy to set up and tried it but it doesn’t really suit me as it stands at the moment so don’t use it but it is a work in progress so maybe in the future.
Now I’m just waiting for the 18th and will write up the visit as part 2 as soon as I can.
I hope this will be of interest if not direct help.
Tot.

[saintsmum]

Hubby has been on the waiting list for quite some time. Then we had ‘the’ email to say one had been allocated. We opted for the option for Charco to come to the our home to go through it, which was quite interesting, which I believe was worth it. Honestly, even after a few hours I noticed hubby wasn’t trembling as much. Will update in a week’s time to let you know how it’s going.

[Alisongs]

Heard about this device on the BBC a few months back. Price then quoted around £800, now apparently £300ish. We are 4000+ in queue, husband had to be persuaded to join. Being trialled on in patients at Addenbrookes. We are desperate as husband has had Type 1 diabetes for over 50 years and Parkinsons not diagnosed until 3 years ago though symptoms for over 20 years. NHS was in denial as already had diabetes and only began to recognise other symptoms as PD when he was 63…the two conditions conflict and exacerbate each other, vicious circle. Need tremors taking away ASAP . NHS wont treat both conditions together. We are helpless and badly need relief

[Alisongs]

One more thing. We saw husband’s specialist PD nurse 2 days ago. Supposed to see her every 6 months, last contact was before lockdown started…she had thought she’d seen him a year ago, and said it was nice to see ME again too. Three years ago husband didnt need a chaperone and I was full time working ( Very worrying when PD nurse has poor memory an.d imagines things. LOL.)…Long story short…She’d never heard of the Charco device and even after we explained, said it would be years before a device like that was generally available . Despite ongoing Addenbrookes trials and rollout in Spain. With a PD specialist nurse like that, is it any wonder there’s no consistent PD care and no cure.

[Tot]

Part 2 - Cue1 Delivery Day

This morning I received my Cue1 by personal delivery. I would highly recommend this option if it is available to you. It was relaxed, informal and you could get all your questions answered.

The Design. The design of both the device and storage of the bits and pieces that go with it is an absolute winner as far as I am concerned.

Very compact design - Top left adhesive disc storage. Each disc lasts 2 weeks. Bottom left charging point.
It is delivered gift wrapped - not essential but a nice touch, Made it feel a bit special and the company wanted its design to be something you would be happy to have at home

The device itself is very lightweight and is easily switched on or off by pressing the button in the centre of the device.

It can be used ‘continually on’ or switched on and off as required.

The device can be placed anywhere on the body but the site that they have found has given best results is on the sternum.

The device is very simple to use and everything clearly explained. I didn’t feel rushed or that I was asking stupid questions and I was given ample time to try it.

I was advised to try it for a sufficiently long period to get really used to it and comfortable with it and to try it with a range of activities and with changed settings to find the optimum setting for me.

My personal trainer was present and said almost as soon as I had put it on that my posture was better, that I was holding my shoulders back a bit more easily and my voice stronger.

I do jogging laps round my flat and found a large stop watch where I can see the time. The problem with this is that when I press start my feet stop. As a quick trial the Cue1 seemed to make a difference and I am interested to find out if this is so over the next few days and weeks.

I quickly got used to it and by this afternoon hardly noticed it.

Initial signs seem promising but I will test it thoroughly over the next few weeks and write an update in due course
Tot

[Tot]

The Cue1 - I intended to write a Part 3 concluding post but have changed my mind and thought it might be better to write it up as I go along to give a better first hand account. So here it is, the first report.

Wednesday 19th July. I have been thinking about how to best write up the final part of my Cue1 experience and thought it probably useful to give you an indicator of how I was managing to make sense of the difference it is making. Today was the first full day of use.

Background. Some of you will know from some of my posts on the forum that I am managing quite well overall at present. Physically I am quite strong as my work with a personal trainer is paying dividends and many of you will know the importance I place on keeping positive. Nevertheless Parkinson’s has been playing some games. I have recently developed some postural instability and although not a major concern at the moment it has made coming to stand a bit harder to get my balance so I have been using the riser part of my recliner chair to bring me to my feet more easily and raising the bed height a little to do the same when getting off the bed. In addition at home especially my feet have been stopping without warning a bit more often so I have been using a trolley I have to move around the flat more easily - the same principle that many of you probably find that you walk better when pushing a supermarket trolley. None of this was a major concern to me that is after all why I bought these things and they mean I can move more safely because the postural instability has of course potentially increased my risk of falls. I wasn’t really sure what difference the Cue1 might make but it has been something of a revelation. If you read my delivery day post you will know my personal trainer noted virtually straightaway that I was standing taller and indeed today I noted that in myself. With the Cue1 on I did not need to use the rise facility on my chair or raise my bed nor have I used the trolley. When the door bell rang, which would normally stop me in my tracks, I switched the Cue1 on and just walked to the door,As part of my exercise routine I do timed laps around my flat and have to slow right down at the turns or my balance goes haywire or my feet freeze. Turns today were much smoother with hardly any loss of speed. It was a very good start.

Wearing the device is interesting. Obviously I could feel it when it was on but there is no obvious link, nothing physical to do or manage, and the fact is when it was on I could just stand up without difficulty and when if was off I couldn’t. It was the same with everything I tried when off and then when on. I felt I almost had to just accept it worked without really knowing how. Things I have tried before generally need you to do something physical, even if simple like counting. This just requires you to push a button. There are no wires or any sort of connection from me to initiate or help start the movement and it was instant.

I will do a few more posts over the next few weeks as things go along and if there is something more I can add.

I hope you find this of interest and if your experience is different to mine perhaps you could post how you find it to give others the broadest picture of this device.
Tot

[Lindsay]

Just to add to the conversation. I gave up on the Cue1, I really wanted to see a benefit, but nothing for me. So pleased that after a bit of effort to contact them, I have returned device for a full refund. I am pleased and surprised that I was able to do this.

[Tot]

I’m sorry it didn’t work for you Lindsay but you are quite right. I was told when it was delivered on Tuesday to take time fo give it a thorough test and if I didn’t get any benefit I could return it for a full refund.

[Tot]

My Cue1 was delivered on Tuesday. Today is Friday. I did wonder about posting this, was it too soon, was I tempting fate, what if a few weeks down the line everything was different? The whole reason for posting my Cue1 experience on the forum was to give a first hand, personal account hence the post today. I could have kept it for the original idea of a Part 3 concluding post, which would have been fine but not told you much about my own personal experience. Time will give the answer to my questions in due course.

This may only be my third full day but the Cue1 has made a huge difference to me. I wanted to know if anybody had noticed a difference in my movement, good or bad, rather than just how it seemed to me so asked my neighbours. This is what one of them wrote.

It’s so interesting you say that … but I was genuinely amazed by how you walked to get my parcel the other day when I knocked. Didn’t say anything as thought maybe your walking changes depending on time of day/energy levels but it was noticeable and remarkably different. Sounds like a good bit of tech. I’ll be looking out for you dancing next

My personal trainer too was impressed yesterday and we did really quite a tough session which had none of the issues we quite often get where my feet stop, or I have to stop to stabilise my balance and I was definitely completing some of the moves more efficiently than usual. Although, of course, it is not on a par with her clients who do ten mile runs and so on, it did feel to me that I had had a session on a par with them and I had never really felt that before. It was a good feeling.

Today I had one of my most frequent problems when the door bell goes my feet freeze as I know I need to get to the door quickly. If I am in the living room the front door is quite a long way away as I have a long hall. I have therefore got into the habit, it I know a parcel is due, of tracking it so that I can be close to the door to receive it. My feet still stop, but because the distance is so much shorter I can usually make it to the door but it is not just walking I use any kind of movement that gets me closer to the door - sideways, big steps, little ones, using my arms to get some momentum going - it must look quite odd. Today I was expecting a parcel and was tracking it but deliberately stayed in the living room. The door bell rang, I switched on the Cue1, got up and walked to the door with no problem at all. Incredible. I am now wondering if I can try to use escalators which I have avoided for a long time for obvious reasons - but I don’t think I have the courage to do that yet.

My delight at how the Cue1 seems to be working for me is tinged with some
sadness for those for whom it didn’t work. Although I do have a just get on with it approach, the Cue1 made me realise just how much effort was needed to just get on with it and that I had virtually forgotten what it was like to move without really thinking about it.

I will need to see how the next few weeks go, but whatever happens I will be grateful to have had an opportunity to use the Cue1 with to me, quite stunning results

[Jean1]

Hello Tot, great to read your review of the device thus far! I’ve just put my husband’s name down on the waiting list. He’s 7 years down the line from diagnosis and is 72 this year. I had heard of it a while ago, but must admit I was a bit sceptical, as it sounded ‘too good to be true’ and wondered why our PD nurse or consultant hadn’t mentioned it. Nothing comes with a guarantee of course, so I really hope it helps my husband. His walking is quite good while on meds. His main problem, amongst many other non-motor symptoms, is his poor mobility getting up from sitting and out of bed when his meds are almost ‘off’. He has started to freeze occasionally too, so I’m hoping this device will work for him. Fingers crossed and thanks for posting your experience. Will keep a look out for your updates. Good luck! Best wishes Jean

[Tot]

I’ve been truly amazed Jean1. I didn’t really have any expectations but nobody has really said what their experience was hence my posts. I have even found myself wondering if I should try an escalator - avoided because of the anxiety of what if my feer stick getting on/off etc - not brave enough just now but I’m amazed to find myself even thinking it.
Tot

[Jean1]

I will keep a keen eye out for your posts re this topic Tot. So glad you’re finding it is working well for you so far. Long may it continue. Good luck with the escalator if you get to the point where you feel confident enough. I think we’ll continue with the lift for the time being! Take care. Jean

[Tilly22]

Hi Reah, interesting to read all the comments. I have been on the waiting list and eventually received my device on the 19th July 23. I had a brilliant home delivery but unfortunately after a few hours the device stopped working. It is very difficult to communicate with Charco but i did get an email to say it was the device’s firmware that was causing the issue and they are working on it. Just wondering if anyone else was having/has had any issues? I am still looking forward to seeing if it will help with my movement.

[Steph22]

Hi Tot,

So pleased to hear the Cue1 is making a difference. I have had mine a couple of months now and don’t feel it has helped. Maybe the difference is very subtle? I continue to wear it, just in case!
I am having a zoom call with Charco soon to discuss settings.
Are you using yours on the original settings?

Best wishes
Steph

[Tot]

Actually I just changed mine this morning to see what difference if any it makes and I was told to try different settings to see what worked best for me. For now I’ve only increased the strength. It does feel like I need to try it a little lower down on my sternum I can’t really explain why. Have you tried that? I might be talking nonsense but it may be worth a try.

Did you see any difference when you first used it? Almost as soon as I had switched it on my personal trainer said I was standing more upright and although it has only been a few days there is a definite difference that other people have noticed. You say perhaps it’s subtle, has anybody else noticed any change. Please let me know
Tot

[Steph22]

I have it as low on my sternum as I feel it can lie flat, if that makes sense.
I did try changing all settings at once as suggested by Charco a few weeks ago but have now gone back to the original settings.
No one has mentioned seeing a difference!
Will adjust settings one at a time and see if there is any change. It will be interesting when I have my call with Charco, which is in a couple of weeks hopefully

[Tot]

I thought about changing other settings but in the end decided to just change the strength for now but I haven’t noticed any difference from the default settings. I would be interested to hear what they say in your call. Tilly22 has posted that the Cue1 stopped after a few hours and there have been a few others that said the same. Fingers crossed mine will be ok as it does seem to be making a substantial difference to me. I’ve just had a thought, she did mention in passing that it does not seem to be so effective with tremor in some people but I don’t have that. Do you have that? If so it may be worth mentioning in your call to see what they say.

I started to write my personal experience because the Cue1 is something that seems to be coming in somewhat under the radar and gaining some interest but on the other hand no-one seemed to be saying much. Obviously I can only write from my perspective but comments like yours and Tilly’s are invaluable because they give a much more rounded view. It maybe that rather than the device not making a difference to some of us it is more that, like all ‘equipment’ not everybody is a suitable candidate. Hopefully the company are considering who seems to benefit most so the device can be targetted correctly. At the moment on first reading it does seem incredible and to me, of course it is. When I first heard about it though I was sceptical you know the saying ‘if it’s too good to be true it probably is.’ But it seems to me they need to be clearer about who and why some may find it more effective. It may help the awful disappointment when it doesn’t work for you but actually it may be not so much it didn’t work for you but rather the device wasn’t ‘compatible’ with your symptoms which is a different thing entirely. I don’t know if that makes sense to you (in my head it is obvious but that doesn’t mean it is to anyone else) but it is why it is important for people to post about their own experiences. Once I finish my own feedback I thought I would let the company know my own experience and include comments from others whose experiences may differ from mine. Even if it doesn’t seem to be effective for you (and I hope you do get some benefit) your feedback will maybe help contribute to development of the Cue1 so keep posting Steph22.

[Steph22]

No, I don’t have tremor. As you mentioned, hopefully as they gather more information from people using it, it will help to determine who is most likely to benefit. I’m sure that is quite difficult in reality as we are all so different in the symptoms we have and also the degree to which they are troublesome.
I have increased my strength today, but have not felt any change.
I will post when I have spoken to Charco.

[Tilly22]

Morning, I have received an email explaining the best solution would be to replace the device, hopefully sent out next week. I am excited about trying it - I will update my post when I receive it. Really hope yours continues to help. Regards