Cue 1 by Charco

Hi Tot ime hoping to have my cue1 in the next couple months waiting list is coming down fast i will let everyone know

Screenshot 2023-09-12 20.09.02

Hello Calv1960
I thought you might like to have some idea of size. It is 4 cms diameter and 1 cm deep. The centre is pressed to switch it on and off. If they are still doing it I would recommend you take up their offer of free delivery by a member of their team. It does delay delivery slight.ly because of the logistics involved - I was told it may delay delivery by up to two months but in the event it was only a few weeks and well worth it.
I look forward to hearing how you are getting on
Tot

Have had the Cue1 for a week now. First time I used it, it seemed to improve stiffness and my walking. Since then no improvement at all. Something psychological going on there? Will keep trying and see if things improve, but I’m not confident.

My husband received his Cue1 just 2 days ago and instantly felt marked improvement . He was able to stride confidentally around the room and turn corners without freezing ir stumbling. He then went out to the car on the driveway and was able to enter and exit without all the usual palaver of tiny steps and faltering and freezing.
To say he was elated is an understatement. He is ecstatic and feels like he has won the lottery. I know its early days but what he has achieved with the device so far is immeasurable in terms of his mental and physical health. So impressed.

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That is good news. I recently saw my Parkinson’s Nurse who was quite scathing of the Cue1 saying they were doing a hard marketing campaign to health professionals and though she didn’t say so in so many words strongly implied it was a worthless device. She does tend to take a strong medical model approach to her work and although I like her and we do get on we quite often disagree because of her approach - as I did in this case. I don’t believe you have to understand how something works to know that it works and even if it is found to have a placebo effect (ie you believe something will work therefore it does) does it really matter if it makes a difference. The company have never claimed it works for everyone or that it works for everyone to the same extent. I haven’t really been able to test mine yet as I had a reaction to the adhesive - which they are currently working on - and I am looking to see if there is something I can use in the meantime that will allow me to try it a bit more - so far everything has proved to be too fiddly. I look forward to testing mine fully but for the little time I did try it, results were promising. I hope your husband continues to have success with this device because where it works it can potentially have a huge impact on quality of life as you have found. It was a delight to read your post.
Tot

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Thats interesting. I should also mention that when my husband showered he had to remove the device and as he had problems moving in a more confined space causing’ freezing’ i hit on the idea of using my daughters metronome ( relic from piano practices!). I set this to similar rate as Cue1 and it was a great help !

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you may therefore be interested to know Candice that metronomes and musical cues are commonly used in rehabilitation with people with Parkinson’s to help improve gait speed and stride length - or in my case the metronome was a key part of my learning to type in the days of the old manual typewriters, phyiscally much harder work than today’s keyboards. I never did learn to play the piano but I made my living typing for years so the metronome must have worked :rofl:

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Update. Husband has now had anti tremor device for 5 months. Seems to keep him calmer when his tremors are bad and it definitely reduces involuntary movements of his legs and feet. No benefits from changing the settings any which way. He does turn it off if the vibration annoys him and forgets to turn it on again. When he’s got bad tremors he wants to manage without. I charge it overnight and put it on him every morning and take it off at night. He is still in denial about how bad his Parkinsons is, but does derive some comfort when he remembers to use the device

Love the idea. Might have to set them up around the house, as my husband has a habit of switching the device off!

I had a Cue1 but unfortunately had to return it as I developed quite a strong reaction to the adhesive patches used to secure the device. Charco were very good and maintained good communication but was ultimately advised by them to stop using it.
In the few days I wore it, I believe I did experience some benefit, but not enough for me to endorse it at the moment as I’m not sure if I believed it was doing good because I wanted it to do so very much.
I would consider buying again if problems with attachment are resolved and after further trials.

Hi Tot any news on your cue1 i still haven’t received mine hoping season 2 starts soon

Hello calv1960
Funnily enough I was only thinking yesterday i must email them and see how development of the adhesive patch for sensitive skin is coming along. At the moment I have a Cue1 I can’t use which I must admit is becoming a bit frustrating. I will post an update as soon as I have any news. Maybe you should contact them and see if you can find out when you might get yours - you’ve got nothing to lose and at least you would know.
Tot

Hello Lindsay
All I can say is SNAP!!
Charco dont seem to be interested in those of us who get nothing from their
CUE 1! I’ve tried and tried to get them to help me with it - they never say NO but nothing ever happens! It used to make me mad but now it just makes me sad. I read about the people who get results and I’m glad for them but I feel that they don’t want to know about us who have paid the same as those who are happy with their CUE 1! You’d think they would research the profiles of people for whom it doesn’t work. Anyway Lindsay It’s good to know that we’re both in the situation - there must be more!
I dont feel so isolated now! Good luck with it - Clare

Hi Aimee
I hope you get one for your Dad - but a word of warning - CUE1 doesnt work for everyone. I am someone it hasn’t helped and if you believe in it while you wait - as I did -you might be disappointed. I hope all goes well for him but I’m still falling - got stitched up again in hospital on Good Friday. If it doesn’t work for him don’t expect much interest from Charco. It’s probably worth trying it and I hope its great - this is just a friendly warning!!
Good luck, from Birdie

If it truely was effective for the majority of PD sufferers, surely the company would have been bought up/developed by some multinational by now for several million dollars.
My neurologist said the best you can hope for is some sort of placebo effect? :thinking:

I received an email from Charco today about the launch of the new version and its price: £795.

Hi Clare,

Cue was worth trying, and I did get my money back. It certainly appears to work for some, but what percentage only Charco know.

I am due DBS surgery this summer (just waiting on exact date) so I am really hoping that will be more successful for me.

I will feedback.

Lindsay

Husband got his device last September. It does seem to help calm tremors but irritates him if he is very shakey. Altering settings didn’t help. Unfortunately his Parkinsons dementia means he is now a medical safeguarding risk to us both and is in hospital waiting a nursing home placement. He’s 67

An update on the Cue 1. I recently contacted the company for an update. They are still working on the development of an adhesive that doesn’t cause a reaction to sensitive skin, so I am still waiting on that. However they also said that they would shortly be in a position to try a belt. I don’t have any details but have said I am interested in hearing more about this when it is available. I will keep you updated as I get information on developments.
Tot

Hi Tot at last i will have my cue1+ in the next 4 to 7 days hopefully i get improvement