Another question about how to aquire a Que 1

[brauncs]

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

[park_bear]

Surprisingly, fish oil seems to help degenerated discs recover. I wrote about this here:

tinyurl.com/ktv33aye

Scroll down to the fish oil heading.

[brauncs in reply to park_bear]

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.

Cheers, Craig

[Zella23]

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.

[brauncs in reply to Zella23]

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

Cheers, Craig

[Windermere1]

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.

[Rupa88]

what dies it help with? Dies it really work?

[LeharLover62]

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.

[brauncs]

Thanks for the reply LeharLover62. I wonder if devices like percussion massagers and tens units had to be approved buy the FDA?

Cheers, Craig

[stlewy]

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.

[brauncs in reply to stlewy]

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 .

Cheers, Craig

[stlewy in reply to brauncs]

If you don't mind me asking, what type of exercises are/were you doing? Is speed-walking one and is it helpful?

[brauncs in reply to stlewy]

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.

Cheers, Craig

[garygjs]

Craig, I have a Cue1 gathering dust.

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.

[brauncs in reply to garygjs]

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!!!

Cheers, Craig