I'm a 69 yr. old male who was diagnosed about 9 years ago. I feel that up till a year or so ago I was able to resist rapid advancement of my Parkinson's with lots of daily exercise as I have always been an active person. Now my body is rapidly falling apart (arthritis, bone-on-bone right knee, degenerative disc disease etc) so I am really interested in getting a Que1 ASAP, as i am sure many of us parkies are. Does anyone ,especially UK parkies, know if I could speed-up the process by travelling to the UK to try to purchase a Que1 and what obstacles I would encounter if I did. Any and all advice would be appreciated.
Cheers, Craig
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brauncs
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Thanks Park_bear for your response. I couldn't find what you wrote about it in the link, however I have been taking fish oil 3 times per day, as perscribed by my PCP for probably 10 years or more due to the high incidence of heart problems in my family. Good to hear it's helpful for discs because I have 5 bad lower lumbar discs according to my last MRI.
I recently read on the Cue1 website about proposed expansion into the USA and other countries. You have to be on the waiting list in order to get one and I wouldn’t think coming to the U.K. would speed up that process as you do need back up support with the device. It’s only available to buy on the internet when your name comes to the top of the list.
My husband has had one for more than a year and needed it replacing a couple of times due to technical issues. They are a very friendly and responsive company and give great technical support, which is sometimes needed.
On their website, Charconeurotech.com is a place you can add your name and they will inform you when it’s available in your country. Think it’s going through FDA approval at the moment.
Thank you Zella23 for your response. I put my name on the list a couple of months ago but they must be flooded with inquires because they say they aren't able to respond at this point. I have been trying to read all posts regarding the Cue1 and some are saying that a non-UK citizen can get one with the help of a UK citizen, so I'm trying to get all the facts straight as I will be in Europe in September and thought I might be able to take advantage of that. Getting anything approved through our "black hole" of federal bureaucracy also known as the FDA (Federal Delaying Agency) is a frightening thought for us in the US and is most likely why we are so interested in jumping the cue, unfortunately
I was on the waiting list here in U.K. for a year and got the new Cue1+ last week. Neurotech are working hard to get FDA approval for the States. Get your name on the wait list for USA You can email them for more info BUT there are no short cuts to the top of the list.
Thanks for asking this question….as hubby had been on their waiting list since 2021 and is now 18 years into Parkinson’s, and counter indicated for DBS, I was thinking of going to the UK to get the CUE also.
Hi Brauncs. Have you looked into the vibrating glove for PD (a USA vibrating counterpart to the UK Cue1)? It's not available yet, but several DIY YouTube videos exist. I've just ordered all the parts and will be working on making one. Also, do you take any medicine for PD, or strictly been exercising? I'm interested as I've been exercising daily and not taking PD medicine.
Thanks for your reply stlewy I've have been keeping an eye on the gloves but I'm more interested in the Cue1 as it appears to be more user friendly. I watched the Buzzboard video on Youtube yesterday and I am contemplating a try at buiding one of those as that would be perfect for when I'm reading and watching murder mysteries. From 2016 when i got my diagnosis I have been taking rasagiline, as prescribed by my neurologist and I'm still on it but after a year and a half or so the exercise and rasagiline wasn't doing enough for me so I started taking C/L. I'm up to 6 or 7 pills a day now. My, biggest challange, as I stated im my post, is keeping injury free enough to keep exercising at the level that is more theraputic so I don't have keep increasing my dosage to keep up with my symptoms Good luck with your glove project .
Because of a few nagging orthopedic issues I'm spinning on my recumbent stationary exercycle every day for 45 min., where before I would walk or hike every other day. Waalking is out of the question until I get some relief from my Quadratus Lumborem injury. Now I'm doing PT exercises & stretches for my injured quadratus Lumborem muscle, achilles tendonitis , hand ,face & voice exercises along with LSVT Big moves and "Smart XPD" on youtube, periodically. I was boxing up until a few months ago when I figured out that my arthritic hands couldn't take the impact anymore. Every morning, before breakfast I stretch and do core work for my back problems. At night before bed I do some feet exercises more stretching and I juggle every other nite.
Hi stlewy, I was wondering how your glove project is coming along? I've got all the parts and have completed the finger motor soldering and am ready to try to program my Arduino again. I tried to do that first thing but did not succeed and got real frustrated , but I'm ready to give it a go again.
Hey Craig, The PD buzz board is completed, and been using it for 2 weeks. It may be all psychological (this early in the vibration therapy), but some PD symptoms have reduced. I've started on the glove project and hope to have something by June 2. As for the software, for the glove, I used the VibroTherapy3v.ino. Arduino software didn't like my location, so I copied the source code and directly pasted the source code into a new sketch, saved it, compiled it, and then uploaded it (make sure your Arduino is connected to the computer). Hope that helps.
Yay! Glad to hear you got a vibrotactile device put together and working. Unfortunately, I'm not too swift with computer issues but I've always been pretty handy at fixing things. Could you tell me if there is two sketches that get uploaded into the microprocessor. I don't understand the motorshield sketch part. I thought all I had to upload is the Pdbuzzboard Random_167ino but in his library he has 6 different VibroTherapyMotorshield sketches as well. I'm just after the closest program to match the original one used by the Stanford Tass Team.
I got all my parts for my glove project and I thought I would start with what I imagined would be the toughest part for me… Programming Arduino, and sure enough I spent a day screwing with it and got nowhere. I ended up getting help from a thing here in the US called senior planet that’s funded by AARP which I ended up having two, one hour zoom sessions with a guy that was very computer literate and had som experience with Arduino. We still couldn’t get my Arduino programmed even though the second try he had his own Arduino and was able to program it but mine kept coming up with a compilation error. I’m on vacation now visiting my daughter on the east coast and I will be for the next two weeks so I’ll be back at it when I get home. I’ve seen a couple of YouTube videos that directly address that problem so hopefully I can get it done. So are you getting any positive results from yours?
What is the name of the library folder you are using and opening sketches should be in that library? I'm on my 4th week, and I feel improvements in the following:
So happy to hear about all the success you are having with your buzzboard. To answer your question the library that I was successful in uploading was Adafruit_Motor_Shield_library-1.0.1 . I also was able to load the sketch Pd BuzzRandom_167.ino , however when I tried to verify a compilation error popped up and that’s as far as I’ve gotten.
Will do but currently I’m on the east coast and won’t be home to Colorado where my PC is along with all my notes, until the end of June. Appreciate the help for sure. I will private message you 👍🏻 Cheers, Craig
Another member and I looked into sending it to the US and we concluded that there's a strong chance it wouldn't get through customs.
If you are in the UK this Sept, you would be welcome to it. (Much less of an issue getting it back into the US if you are actually wearing it, I think...Charco have a printable doc on their site that - one would hope - ensures smooth passage at airports).
However - and sorry to put a dampener on things - it doesn't appear to much help a sizeable portion of those who try it, and I fear you ultimately might regret altering your travel schedule to get hold of one.
Thank you garygis for your kind and generous reply. I just came from the Charco website and realized they only have two cases where they publicize the results of their testing, which was surprising and gave me pause to think again about getting a Cue1 at this juncture. Because of the replys from my post though I have been watching more videos on Youtube and it has inspired me to try and build my own set of gloves. Lots of great DIY info that doesn't look that difficult👍I love youtube and Healthunlocked!!!
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I've have been keeping an eye on the gloves but I'm more interested in the Cue1 as it appears to be more user friendly. I watched the Buzzboard video on Youtube yesterday and I am contemplating a try at buiding one of those as that would be perfect for when I'm reading and watching murder mysteries. From 2016 when i got my diagnosis I have been taking rasagiline, as prescribed by my neurologist and I'm still on it but after a year and a half or so the exercise and rasagiline wasn't doing enough for me so I started taking C/L. I'm up to 6 or 7 pills a day now. My, biggest challange, as I stated im my post, is keeping injury free enough to keep exercising at the level that is more theraputic so I don't have keep increasing my dosage to keep up with my symptoms 
Dat scan....
NECK DYSTONIA WOKE ME UP TODAY.HAS ANYONE WITH PD EXPERIENCED THIS?
“emergency room” PT 2 - amantadine, benadryl and tremor dominant prognosis
Another try to introduce a bit about me.:-)
Er or CR C/L Dr response to change
