The Parkinson’s Buzzer - is it working?

Testing the Charco Cue-1

Every now and then my wife leans across the breakfast table with a quizzical look in her eye and asks “is that you buzzing again?” I then confess that, yes, it is indeed me, but the buzzing noise emanating from my chest is, I remind her, part of an important medical experiment.

It comes from a device called the Cue-1, which is designed to help mitigate the symptoms of Parkinson’s. As I wrote a couple of months ago, this round gadget made by a startup called Charco Neurotech is fixed to your chest with velcro and, when pressed, delivers a mild vibration whose intensity and tempo you can calibrate via a smartphone.

There is some science behind this. Cueing is defined in one scientific paper as “temporal or spatial stimuli, which facilitate repetitive movement usually provided as visual, tactile or auditory rhythmic signals.” It is recognised as offering a way of improving the often stuttering gait of people with Parkinson’s and in particular preventing the freezing which is one of the disease’s most unpleasant symptoms.

While I was not totally convinced that the Cue-1 would do anything for me, I was really impressed by Charco’s CEO Lucy Jung and the colleagues she brought to my home to set me up with the device. So I agreed to try it out and give them some feedback.

A few days ago, Lucy and the team were back in my kitchen, and a dialogue began. They wanted to know about my experience with the device, I wanted to know what they were doing to back up their claims about its effectiveness with solid medical research.

The simple answer to whether the Cue-1 is working for me is - I just don’t know. Nearly four years after my Parkinson’s diagnosis, my symptoms are still relatively mild. I have a tremor in my right hand, weakness all down my right side, and I drag my right foot - and my sleep is very poor. This can sometimes make my walking rather jerky, but I’ve yet to experience any freezing of gait.

I know that sometimes I feel that I am walking better than others - but it is hard to says whether that is because I’ve taken my drugs more recently or is thanks to the vibrotactile stimulation from my gadget. (Confession - I quite often forget to turn it on).

Charco encouraged me to join a private Facebook group for Cue-1 users and that has provided an interesting range of views. There are some who relate dramatic improvements in their symptoms. One woman, about my age and recently diagnosed, had been depressed that her favourite pastime dancing would now be closed to her because of poor balance and embarrassment about her tremor. But her Cue-1 arrived, she found her balance improved, and soon she was off to a jive party: “I danced a lot with a big smile on my face,” she said. Others reported positive impacts on sleep and one carer wrote:“Already at this early stage it seems to be a game changer for my dad and combats his freezing.”

But a minority found it hard to detect any effect on their Parkinson’s symptoms. Charco says it will refund any customers who are not satisfied with the £295 Cue-1 and so far around 10% of nearly 400 buyers have taken them up on that offer. “It is really important for us as a company that if it doesn't work for them, then we give them a full refund,” says Lucy Jung. She says a lot of those saying they are seeing no difference are people like me who have mild symptoms.

Meanwhile, however, the company is trying to deal with the backlog of 8,000 orders from around the world for the device. That shows just how eager many in the Parkinson’s community are to believe that there can be some advance in the treatment of their condition and certainly the anecdotes from happy Cue-1 users tell a hopeful story.

But what we now need, I told the Charco team, is not anecdotes which may be driven by the placebo effect but some hard evidence. So when is that coming? Soon, I was told. There are a number of clinical trials underway in various parts of the world and there could also be an endorsement from a major health provider in the offing - but they were not quite ready to go public with that news.

The problem with proving the effectiveness of any new treatment or drug is that it is so difficult to produce accurate measurements of the many symptoms of Parkinson’s so that you can see whether people on a trial have experienced any improvement. Eventually, the plan is that version 2 of the Cue device will provide its own evidence, with sensors measuring the way the user moves so that any change when the buzzer is on becomes evident.

But that is not expected to be ready until 2025, and Charco, having already raised $10 million from investors, may need to go back to its backers to fund its ambitious expansion plans. In the meantime, I am going to continue following one of the UK’s most exciting healthtech startups with interest and wearing its device so I’m afraid that means more buzzing over the breakfast table.