Cue 1 by Charco

About Parkinson's and health Treatments and therapies
82

Hi. I know this is not very scientific using a single day’s experience of the Cue1+ but two things
1 I slept better wearing it than I have for years. Eight hours instead of the usual 3 and
2 I have had a long day today and came home exhausted. As I walked across my kitchen I noticed out of the blue that my right are, which has not swung when I walked for the last 14 years was swinging without any effort from me.

I know its early days but I think it looks like it’s doing something at least.

Amazing!

83

Hello Drew1 … Delighted to hear about this excellent experience. What did you think when you woke up after 8 hours sleep?

I have watched a number of Cue1 videos on Youtube & the results are remarkable.
I wonder if there is a placebo effect as well. You think it will work so it does.

Best wishes
Steve2

84

Hello Drew1
That is great news. I know there are a lot of ‘non believers’ around whether or not the Cue 1 actually works but for the short time I was able to use mine before my sensitivity to the adhesive became evident, people did notice a difference in me without knowing anything about the Cue1. The bottom line for me though is I don’t really care if it is a real difference or a placebo effect if it works for you, then it works - whatever the reason. I hope it continues to go well for you - perhaps you could let us know after a few weeks use.
Tot

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Has anybody had success with the new cue1+

86

Hi

To be honest im sure there is a pkacebo effect but i cant deny the fact that an arm which has not swung spontaneously since at least 2012 is now doing so.

I will certainly update in a few weeks.

87

Hi everyone i have had my cue1+ for a week set at factory settings my tremor has improved 80% ime walking better as i write this i have no cue on and no tremor i also have less backache

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Hi all
I have been using my cue1 for a week almost and certainly some things feel different. To be honest I’m not sure what is placebo and what is genuine effects of the Cue1. Anyway here goes.
1 Sleep has been on average better so what ever he’s done that is great. Maybe Cue1 or something else but I will take it whatever.
2 Right arm continues to swing spontaneously and that is after hanging around not swinging for 12 years. That has amazed me.
3 I was suffering a lot of off periods and these seem to be less than before. They have not gone but shorter and less debilitating.
4 Walking seem genuinely better regarding fatigue and speed. I walked 8011 steps today which for me is a lot and it’s now 22:50pm and I feel ok.
5 Now this is something. I was getting very bad backache when doing the least chores in the garden. Not had for the last week.

These benefits only occur when I take my medication. It is NOT a medication substitute. Having said that I have been referred to the local Advanced Therapies Team. I will see how things are in 10 days when I attend the clinic for my first assessment.

So I think there have been some improvements in my symptoms and be it placebo or physiological I will take that. I feel that people with Parkinson’s are vulnerable. I know I clutch at straws. But I said when I was waiting over a year for my device, if I get even a 5% improvement it is many well spent and I think that has been fulfilled.
One thing. The vibrations on my chest were REALLY annoying at first but persevere, they now no longer trouble me.
And finally. I can’t remember now what it is like to feel “normal”. A few years ago I had the most vivid dream ever. I dreamed about my long deceased mother. I awoke suddenly and on getting out of bed I was, I think, normal for two hours. It then subsided and I slipped back into the quagmire of Parkinson’s disease. I said then that I never wanted to feel like that again for 2 hours because the despondency I experienced was dreadful for a few days after. But 5% improvement I will take. If the improvement goes away I won’t despair but be grateful for the slight easing I have had.

89

CUE1+ arrived yesterday, meaning I’ve been on the waiting list about 11 months.

Mine is very unpredictable in terms of connecting to my phone via Bluetooth. Might be my phone as it’s quite a new one that Charco admit they haven’t tested yet. Might be something I’m doing too, need to run more tests, rule some factors out.

Results potentially positive, but not earth shaking. I will persevere for a few days.

It’s very strange how little info is given with the device. The manual says it will come with “default installation settings”; I was hoping there might be three profiles along the lines of “most people use this setting, but some people use this one, and a very few, this one”…but there’s just one profile; 80% strength vibration, 800ms “on” with 800ms “off”.

It says wear it for three weeks on default before considering changes…but theres no info on “if you’re tremor is worse try X”, or “if your rigidity is worse, try Y”. I know from talking to someone who goes to my local Parkinson’s Community group that it IS possible to change the settings in such a way that users feel worse, not better.

The whole thing feels very “work in progress”, but just in case the alleviation of my symptoms is possible, and better yet, improvable with a little tinkering, I’ll keep on with it.

Please don’t ask me for advice on settings, positioning or anything like that yet though - I don’t have any to give!

Edit…should have said, the only negative feedback in terms of effect is that when running the vibration makes me feel like I have a tickle cough, to the extent that it does in fact make me cough every ten minutes or so while wearing it.

90

Just finished 3 weeks with the cue+1 and nothing seems different shall give it abit longer before i apply for a refund

91

Doesnt work for me ether

92

Thats what i spent doesnt work going back

93

Hello All
At last I have news. In June Charco told me a belt would soon be ready for those who had trouble with the adhesive but it may be some would prefer it. I have now received an email saying it is available. To be honest it has all been so long I had all but given up on it, but having come this far thought I might as well give it a go. It’s not cheap at £39.50 excl VAT some £47 with VAT but they are offering for a limited time free delivery and 3 month trial with full refund if not suitable.

This is what they say.

The strap wraps around the wearer’s chest, and is worn under the clothes to hold the CUE device securely against the sternum. The CUE device is placed in a small casing, which attaches securely to the strap

The adhesive for sensitive skin is still under development.
I will let you know how I get on.
Tot
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1 Like
94

This Manufactor iuse s also doing a device that helps you walk and not slowness. I did apply for one, at the time cost was £300 but I had to go on the waiting list, Now after quite a while they have contacted me and say that they have this device, cost now £800+ Question 1 if these gadgets are so good as they say, why have not the main group of Parkinson’s got involved eg M- Fox And the other groups, A/ At the moment my jury is still out .

96

Hello All

The Cue1 band arrived promptly but unfortunately didn’t get off to a flying start as there were no instructions. I could see how it worked in principle but couldn’t quite get it to fit so clearly was doing something not quite right. I did a quick search online but couldn’t find anything so ended up emailing Charco. To be fair to them, they did respond to my email very quickly with an apology and attaching the instructions so no harm done, but it was a little frustrating when I had been waiting a long time to be able to try the Cue1 properly.

The band itself is interesting. In the photo it looks like leather but it is soft and flexible. The device fits into the cup for a perfect fit. I have to say at this point that the design of all the Cue 1 ‘accessories’ is in my opinion, excellent. Well thought out and made of good quality materials it is very impressive.

It arrived on Saturday and I have only tried it for a short while on each day since. The first time I put it on it did feel a bit awkward and not that easy to get the strap straight across my back. However that was not a big problem and each time I’ve put it on it has been easier.

The instructions say the device can either be switched on before putting it in the cup or afterwards by pushing through on the rough side of the casing. I think that is personal preference. What I don’t particularly like is the device vibrating if, for eg, I am just sitting reading or something and it is a bit awkward to switch it off without removing the strap; I did find I could do it by pressing through the velcro but not while wearing it but it’s early days and maybe there are ways round that.

At the moment I don’t want to make any judgement on if it works, I’m too concious of the strap and there are a few other things at the moment that are having a bit of an impact so I will say more about that another time. What I can say is that it is comfortable, stays in place - no slipping down - and the Cue1 is held securely against the sternum. I will update when I have a clearer picture of what effect if any it has for me.
Tot

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Didn’t give any major results for me either and the advice they give on changing the settings is not well developed. They don’t offer any indication sad to which of the three parameters (strength, pulse and pause as I call them) it is best to start with.

You’d think with over 3000 devices out there, all connected to an app that I am sure they could harvest for the setting data (anonymously of course) they would have more info than they appear to possess.

I may blow another £50 on the strap (it was skin irritation that finally stopped me using it too) or I may just send it back for a refund.

I agree it is a beautifully made product in terms of design, and the little note they attached wishing me better times ahead was particularly touching.

By the way the device does have a noticeable effect, just not always a helpful one. Sometimes it would actively irritate/annoy me. At others I barely knew it was there. This is why I was hoping there’d be more info on how to adjust it …sort of “if stiff reduce this, if shaky increase this”…etc, etc

98

Hello All
I promised to tell you of my experiences of using the Cue1 which have not been as regular as I hoped. After what appeared to be a promising start I quickly developed a reaction to the adhesive used to keep the device in place. I was told they were developing an adhesive for sensitive skin and last I heard was that this was still in development - I do understand that this is not necessarily something that can be fixed quickly so is not a criticism of the company per se.

I tried to find alternative ways to hold the device in place, and tried it on other places than the sternum but did not find anything I could use easily so resigned myself to not being able to try it any further at that time.

I was later told they were developing a belt to hold the device which was duly brought into play last September. It was a bit galling to be expected to buy this when I had paid for patches that I could not use (I was eventually reimbursed this cost) but having come so far thought I may as well see it through. I wrote about this above.

Three months on and I have decided to call time on the Cue1 for the foreseeable. I will keep it and maybe try it again at some point. Hand on heart I didn’t reach any conclusions about whether it worked for me or not. Initially it seemed promising but although there was nothing wrong with the band per se, it did what it was meant to which was hold the device in place and it was not uncomfortable, I simply did not get on with it. I have a short torso and found it did not easily fit my shape, it felt restrictive and it wasn’t easy to place the device in the right place on my sternum, unlike the patches which I found easy to place. Although the belt isn’t hard to put on I did find it a bit of a nuisance and did not find it easy to switch off the device when wearing it - I didn’t like the vibration continuing when I was just sitting watching tv or reading etc - which I could do easily with the original pad fixing.

In the end I decided it was worth a try, not cheap but i thought worth a go but unless and until they develop an adhesive I can use so that the Cue1 can be fitted in the way it was intended originally, it’s not for me. Whether I would actually try again if a suitable adhesive became available is a question I would probably say no to at the moment anyway.

I don’t want to put anyone off who wants to try this. The company have never claimed it works for everyone and that holds true if you read the mixed reviews. I feel my own trial ends up being inconclusive rather than completely unsuccessful due to not being able to use it with the simple pad to fix the device in place as originally designed.

Sorry I’m not able to say a clear yes or no but I said I would give an account of my experience and as things stands that’s the best I can do. I hope some of my posts have been of interest iif nothing else and if you try it I hope it works for you - even if only a placebo after all if it works, it works. I shall send some feedback to the company as I have all along.
Tot

99

Forget it they dont work tryed 1 for a month non stop NOTHING

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Doubt it

101

Exactly they are out for their own financial gains ive thougharly reserched this and non of these overpriced gadgets work