Nigel2...what the heck is that machine and what was it to do???🤠

Sorry all I wasn't getting notifications on this post for some reason...I'll try and explain the CUE1 as best I can.

Physically, it's a little metal "button" about an inch in diameter and maybe half an inch thick. You stick it to your sternum (chest bone) with a self adhesive velcro pad. The device can thus be pulled off and replaced relatively easy. They say the sticky pad can stay on your chest for up to fourteen days.

The device is usb powered, and what it does, in short, is vibrate...think of a mobile phone on vibration alert.

As it comes it is set to pulse at 80% strength, for 800 milliseconds and then pause for 800 milliseconds. It can connect to your Bluetooth phone and you can adjust the strength values in 5% steps, and the vibrate and pause times in 100ms steps.

When turned on at the 80/800/800 setting it's quite unobtrusive. Turning up the power to 100 makes it loud enough that someone close to you could probably hear it.

I don't claim to know how it works, but some users have claimed improvements in gait, manual dexterity and speech (this last in particular - some of the videos are so spectacular they are hard to believe).

But, it doesn't work for everyone. The most it did for me I would say would be a "comforting" effect - but this could be other factors at play as well. At some times I'd become hyper-aware of the vibration and then it would start to annoy me so I'd turn it off.

They recommend wearing it for at least three weeks on the default 80/800/800 setting and then to "try some adjustments"...but there's no advice on what changes to make beyond keeping the changes small and only changing one setting at a time (ie don't change all three - but that's just common sense as you won't know which change was better or worse if you change more than one).

However there's no guidance on whether a shorter pulse or a longer is better; or if people with rigidity should make the same or different changes to those with tremors.

I have to say I was disappointed by this. They've had version 1 for over a year; 4,000 or so users. But they either haven't correlated the data with people's conditions, or else they regard that data as proprietary and do not want to share.

I tried it for the three weeks, wearing it almost constantly and most times having it turned on for the whole day, but with the lack of noticeable improvement in my symptoms and the lack of guidance on fine tuning, the skin irritation from the adhesive was sadly the last straw.

Don't let me put you off trying it though. There's a guy at the Parkinson's group I attend who says he is much improved by his and the effect of him turning it off and on is marked.

Plus the only "side effects" other than the skin irritation is the price...at £795 this was an expensive experiment!

I noticed sure if the TAOPATCH and the CUE 1 are the same… you can find them both under a Google search!
I think both of them are FDA
approved!

Nigel I have a friend who has the same as Bruce Willis and he is unable to speak,uses an appt on his phone to talk for him,type in what you want to say and it speaks for you,worth looking into,is in US though. Good Luck!!!!

has anyone used the Taopatch? any success?