Thank you Tilly22 thar would be great. Fingers crossed for you,
Tot
This is quite a quick post today but I want to be honest about my experience with the Cue1 so it’s important I post it.
I of course do know all about being sensible and balancing activity with rest etc but sometimes being sensible can be a real bore and I don’t want to give up on some nice things that are happening just to be sensible, life’s too short. So now and again I do too much and accept there will be a poor movement day, and that was what happened today. Evenso I was moving better with the Cue1 than I would have done without it, I stuttered a bit rather than stopped and it wasn’t all the time. I was probably a bit anxious too if the truth be known because it is all very new and that probably played it’s part too. Tomorrow I have a session with my personal trainer and if it’s not tipping down we are nordic walking which is hard work and a full body workout which will be an interesting test after today.
Not such a good day but better with the Cue1 than I would have expected without.
Tot
Well I did the Nordic Walk 4.16 km in an hour on an unexpectedly hot morning, It wasn’t a good night, awake for most of it so I did wonder if being a bit tired might make it difficult to comment on the Cue1. However, what I noticed this morning is that when I put it on, on getting up, moving pre meds and before any drink, wasn’t too bad and the quality of my walking was better than I normally experienced on getting up without the Cue1. With the Cue1 I may stop but it feels more like a stutter if that makes sense because I move again after a second or two. Much faster, so much so that most people don’t even notice ‘my pause.’
I have now completed one full week and I think it a good time to bring this series of posts to a close. I may add another now and again if something significant occurs, but this feel like a natural place to close. In summary my experience has been positive, the key points being:
- From when I first switched the Cue1 on I was standing and moving better - and this was at the personal delivery visit. I didn’t expect that.
- The difference was noticed by others who did not know about the Cue1
- Even on less good days or when I am pre-meds etc the Cue1 is beneficial although some symptoms do occur. However these have much less impact and are almost incidental than I was experiencing before I started using the Cue1.
4 I need to do some more testing with changed settings. I have only done one so far and that was to increase the strength, but I didn’t notice any difference but that is something that can be tried over time as things occur. It works for me on the default setting - the setting that suits the majority of users, so perhaps this is right for me too. - It is easy to charge, connect with the app and change settings etc. I think the design of the charging/storage box is excellent…
- I am delighted with this positive start although it is somehow hard to believe. I do feel for those for whom it doesn’t work it must be so disappointing. I feel very fortunate that I am one who is seeing some benefit from the Cue1.
I do hope this series of posts has been of interest and told you a little bit more about what actually happens but please bear in mind that it is my experience, yours may be entirely different; in which case I hope you will post so that those still waiting get an accurate picture of this device.
Tot
Thank you for your update, I am so pleased it is helping you. I can fully relate to your account of your symptoms/movements etc as mine are very much the same. I am waiting for my cue1 with nervous excitement! I would love to read further updates from yourself. Best wishes
I will of course Tilly22 post again when there is ‘something to say’ the purpose of this series was really to explain what happened and early experience because I really had no idea what to expect. I think now I need to carry on for a bit and see how it goes when I am more used to it. At the moment I’m still a bit shocked to stand and move more or less as I did before Parkinson’s lol. I’ll be keeping my fingers crossed for you.
Hi both
so looking forward to Friday this week, I’m having mine and like you Tot have opted for the personal delivery option. Thank you for sharing, watch this space! 
I will be keeping everything crossed for you and anyone else who is about to take delivery of their Cue1
Tot
Hello All
I wasn’t expecting to post again so soon but I wanted to give an honest account. Having used the Cue1 for a week with no problem today I developed a very slight redness at the site of the patch. I was trying it a little lower down on my sternum than I had been doing but decided I would seek some advice. I emailed Charco this afternoon and shortly after received this reply which I am copying in full as it gives some information on what they are doing.
Thank you for reaching out, and for bringing this to our attention. I am so sorry that you have experienced irritation while using the adhesive. We recommend that if you are experiencing any kind of adverse reaction to the adhesive, that you stop using them immediately.
We are working with the medical adhesive company to look into alternative adhesives for people with extra sensitive skin. Another alternative that we are working on is to develop a strap which would hold the device in place. These developments can take a bit of time as we want to ensure that all developments are safe and have your feedback incorporated into them. We will be sure to keep you regularly updated about the progress of these developments.
We understand that adhesive irritation may mean you can no longer use the device. If you would rather get a refund while we look into alternative ways to wear the device, please do let us know as a full refund will be available for you immediately. We will collect the device and update you once there is a solution to give you an option to repurchase the device.
We are always looking for ways to improve the support we offer to our community members. If you have any further questions or concerns on this matter, please do let us know by replying to this email.
I thought this was an excellent reply with a good offer. I have decided to keep my Cue1. I plan to try it again in a few days as I can’t be sure it was a reaction to the adhesive, it was minor and I had had no problems for the preceding week so I feel I need to test it again and I have said I will let them know. If I am sensitive to the adhesive I would like to try the alternatives when available. I will update you when I’ve had another go but I was impressed by Charco prompt and full reply to my email.
Tot
Further to yesterday’s post it has become clear that the adhesive used in the Cue1 is causing me some skin irritation so I have decided to return mine and will buy it again once a modified one is available. It is a bit disappointing as the device itself was making a difference and it is only the adhesive that caused the problem but hopefully I won’t have to wait too long. In the meantime I hope my series of posts has been helpful and of interest and I will post again as and when.
Tot
Hello again,
Things are moving fast. I have just received an email from Charco and this is part of it
we are about 4 weeks away from receiving the first test patches for the adhesives for sensitive skin. I mentioned your case to the team, and asked if you could be a potential tester.
w
Of course I said yes I would be happy to trial test the new patches. Watch this space
Tot
Hello again
The whole point of my posting my experience of the Cue1 started very simply ie to let you know what happened and how I found it. However in light of my adverse reaction to the adhesive I have become a bit more involved after being offered the opportunity to be a tester for their patches for sensitive skin. I wrote to them asking for their view on my own experience and today received a most interesting reply. The main part of both my email and their reply is given below and it is for you to decide how you view it. I will of course let you know about anything I try.
Tot
I have been thinking about my own experience and that my reaction was quite mild taking the best part of a week to develop into a definite area of irritation which was largely resolved within 24 hours of removing the patch. It crossed my mind that I might be able to use the original patches if I changed the patch every 3-4 days, leaving the patch off altogether overnight allowing air to my skin and in the morning the area could be properly washed and dried before applying a new patch.
Obviously, this would add to the ongoing costs but I wondered if it was worth trying to see if I am able to continue to use the Cue1 pending the new patches being ready for testing. I would very much welcome your view but personally I would be interested to find out a little more about how the irritation developed in me. I will of course let you know how I get on if you think there is some mileage in trying this.
We have found that throughout the research placing the CUE1 on the sternum showed the most benefit, however, everyone is different so some have seen more benefit placing the CUE1 on other locations of the body. You may wish to try using your adhesive on another location of your body. Although I would proceed with caution, as of course you don’t want to end up with another adverse reaction.
It might also be worth noting - some users found that using their CUE1 tucked in their sports bra worked for them (instead of a strap). A few users have MacGyvered their own straps, and one mentioned at the open day that she would create a how-to guide and share it on the Facebook group. Another user used a kind of medical sleeve to keep her CUE1 against her arm or leg - this can be purchased at a pharmacy of course. While Charco doesn’t officially endorse any of these options, and we are working hard on sustainable options, I think the Parkinson’s Community is so incredible in that people will try everything and anything to make a plan, and they are always eager to share any solutions that they have found.
Well, I had my call with Nicole from Charco yesterday. I explained about the Cue1 not helping with my symptoms. One of them being dystonia in my foot where my toes curl, they move constantly when I’m sitting down, like a cat curling and uncurling their paws, it is very painful and distressing. She suggested putting the Cue1 at the site of the problem. I was a bit dubious to be honest. However, when I sat down this afternoon, I put it just above my toes, I couldn’t believe it! They stopped moving! I am delighted.
I hope anyone else who has similar problems can try this and get good results. I’m going away tomorrow and wasn’t going to take the Cue1 with me, I am now!
All the best Steph
How brilliant is that. Their research shows most people get most effect when it is placed on the sternum but I also think like most 'things Parkinson’s ’ there’s often an element of try it and see as you have found Steph22. Do let us know how you got on with the Cue1 while you were away
I also tried CUE1, but wasn’t lucky with it working. I guess with all things Parkinson’s eveyone’s experience is different. They were corteous and gave me a full refund, so can’t say anything negative about the people behind it.
A quick update. This is part of email just received. I have confirmed I wish to take part in the testing and will update my post as appropriate
Tot
It’s my understanding that you previously expressed interest in collaborating with Charco Neurotech to evaluate our innovative medical-grade adhesive.
I’m excited to share that we’ve successfully prepared the new medical-grade samples, primed for testing.
Hello All
I have just received the new patch for testing and will update you in a few days.
Tot
Hello,
I will have my cue1 delivered in 4-7 working days. I will provide updates on its effectiveness when I come to use it.
Diagnosed PD at 38. 7 years on meds respond well still on levadopa but reaching up to max level allowed by my body to absorb without bringing on dyskinesia. I don’t have tremors.
Symptoms
Stiffness
Bradykinesia (slowness)
Freezing (and terrible brain fog)
Dyskinesia (drug induced)
Dystonia
I have still a relatively “normal” life but ever the optimist looking for the cherry on the cake to feel that extra bit better. As my symptoms are similar to what cue1 is claiming they can treat most effectively (slowness stiffness etc) I thought I would give it a go.
Being a younger PD unfortunate, I am interested in how age and length a person has had PD, compares to myself and whether the device masks the symptoms better for mild or severe. Young or old
I exercise 4-5 times a week. Boxing, football and weights. So far the exercise is the best remedy, and I’ll use the cue1 as a supplement not a substitute to my regime. Unless I receive better than expected results, in which case I’ll try reducing the meds, but I won’t get ahead of myself.
There has been little to nothing on whether it is effective for non-motor functions, so I’ll be monitoring that also.
Till next week
Steve
Sorry to be a bit slow in providing an update. I duly tried the new adhesive sensitive patch and had no ill effects from that but the patches I tested were only samples. The only issue I had was that when I removed it to reposition it I couldn’t then stick it to my sternum as it ‘lost’ all its stickiness. The same thing happened when I removed the second patch in order to complete their feedback form . Tnis is where they are currently at - copied from part of their most recent email - The patch you’re currently testing is a sample adhesive, and we are planning to produce more in the near future. Based on the feedback we receive, we intend to create an extra-sensitive adhesive variant.
.Whilst waiting for the sample patch I tried several ways to find a way to continue to use the Cue1 but on the whole were too fiddly and not very successful in my opinion. So I am not currently using my Cue1 pending the skin sensitive adhesive patches becoming available. I have offered to continue being a tester if they so wished. I will do another update when I have some news.
Tot
Hi Tot this cue1 can u wear it on your wrist like a watch by securing the cue under a wrist sweat band
Hello calv1960
They say that most people get most benefit when worn on the sternum but others have found benefit when wearing it elsewhere such as an arm or ankle so it;s worth a try. It didn’t work for me on my arm or leg but I was trying several different ways as I can’r use the patches due to sensitivity to the adhesive…
If you try it let us know how you gget on
Tot