Charco recently had the opportunity to visit Rory Cellan-Jones, once technology correspondent for the BBC, to deliver him his CUE1. We talked with him about his Parkinson’s, technology, and the CUE1, and his thoughts on our testing and the CUE1 itself. 

‘That was the first big indicator’

“My wife kept saying, ‘Why are you dragging your right foot?’ That was the first big indicator.” Rory had first noticed a weakness down his right side when on holiday, finding that his right foot was dragging behind his left one. He began to notice other difficulties, such as typing and his hand shaking as he held a TV remote, and was eventually diagnosed with Parkinson’s. Rory is open about his struggle with coming to terms with the condition. “I had depression for the first year”, he tells us, “Though this eventually went away”. Like many diagnosed with Parkinson’s, the initial shock of the diagnosis can resonate for a long while, and issues such as depression can be all too common.

Part of his coming to terms with the condition came in conventional forms, such as exercise, something he has maintained to this day. He also found it greatly beneficial to talk to others with the condition, and to share experiences in a supportive environment. “A friend of mine asked if I could talk to someone who had Parkinson’s, so I met him, and we went to this pub a couple of times”. Sharing experiences and talking to others with Parkinson’s has clearly been helpful to Rory, as well as to those who he’s opened up to.

‘The next big thing’

Having kept his ear to the technological ground for his 40 years in the BBC, it’s no surprise that Rory is up to date on all of the latest developments in the world of medical technology. This extends from the CUE1 to remote monitoring, something he was particularly interested in talking to us about. “There’s lots of work on wearables and remote monitoring… I think remote monitoring is the next big thing”. Used for everything from chemotherapy to urology, it’s clear that the possibilities of new technology are still exciting to Rory, even after 40 years of reporting on them. There are, he admits, still issues. “One of the problems is whether people will have enough time to deal with this enormous flow of data”. Still, the possibilities are endless, and Rory is someone with the experience to know what might become life changing.

One of the many devices of interest to Rory is the CUE1, which he has examined with characteristic thoroughness in his blog on our visit to him. “Their sheer energy showed that this was a medtech company worth watching”, he muses. During our visit, he asked several questions about the CUE1, showing the depth of his research. “So, the actual technique [vibrotactile stimulation and cueing] has been used for a long time?” he asks; we confirm that it has, and that these technologies have been utilised since the early 1800s, since the discoveries of Professor Jean-Martin Charcot. 

‘I’ll report back on my experience’

All of our community are offered the chance to take part in our research, and many, including Rory, graciously agree to do so, helping us to further our research. The UPDRS (Universal Parkinson’s Disease Rating Scale), the gold standard for assessing Parkinson’s, is used by Charco to assess the effectiveness of the CUE1, and consists of several tests, designed to evaluate a person’s movement ability, tremor, and other symptoms. As we carried them out, Rory asked several questions, getting to know the details of the test, and showing his journalistic style that has been so useful in his many reports.

“So, this first test is to get a baseline of my symptoms?” Rory notes in his journalistic fashion; one test done to establish his symptoms, taking into account medication schedules and other possible factors, and then one done after 20 minutes of CUE1 usage to assess its immediate effect. “So, the higher the score, the more severe the symptoms are?” Rory then correctly deduces,  with the caveat that the test score is a result of all the symptoms combined, meaning with a low test score can still have particularly severe symptoms, though fewer symptoms overall.

Rory carries out the tests in good humour, and then sits down to discuss the results. His test score has improved by nine points, with anything over 3.25 considered clinically significant. “Is it possible that this is simply placebo?” he asks, his inquisitive nature still strong. We reply that it’s possible, but such a marked improvement is beyond what could be explained even by something as potentially powerful as the placebo effect. 

Rory gives us his further thoughts in his own blog; though sceptical of anything that has not been through large-scale trials producing peer-reviewed evidence of effectiveness, he was impressed by the energy and vision of the team, and has said that he “intend[s] to keep it buzzing away for a few weeks and… report back on [his] experience”. We look forward to hearing from Rory about his experience of the CUE1, and we’re grateful for him to take the time to discuss it so thoroughly and with such enthusiasm with us; though he has sadly had to retire from the BBC, his journalistic spirit is still intact, and as strong as ever.

Thank you to Rory for taking part in our tests, and for allowing us to interview him; you can read his own blog on our visit here. To find out more about the UPDRS assessment, please click here, and to see more information about the CUE1 and our tests, please see here.