Movers and Shakers: Tech
Second series of the hit podcast about Parkinson's
Movers and Shakers, the podcast about living with Parkinson’s, is back for a second series. The first episode is about technology — which is ironic given what happened in Middle Temple Hall ten days ago. Our first live event was meant to launch the new series but so severe were the problems with the sound system that people at the back of the hall could not hear us and the recording, intended for the podcast, was unusable. We have learned our lesson and, if we organise another live event, promise to do better.
We start this episode by catching up with what we have been up to over the summer. Nick Mostyn’s big news is that he has retired, handing down his last judgement after a legal career which began in 1981. The judge isn’t retiring because he thinks Parkinson’s is affecting his work but because he wants to make the most of life while his symptoms are relatively mild.
Gillian Lacey-Solymar has written a musical and had it staged at the Edinburgh Festival and Paul Mayhew-Archer has continued to take his one-man show around the country, both believing that one upside of Parkinson’s is that it can spark a surge of creativity.
Jeremy Paxman tells us grumpily that his plans to holiday at a ranch in Colorado were scuppered when his doctor said that heading to a place that was seven hours by road from a major hospital did not sound like a great idea.
Mark Mardell tells us that, as a diabetic, he managed to get his doctor to prescribe him exenatide, the diabetes drug which is currently undergoing a Phase 3 trial to see if it can halt the progression of Parkinson’s. But he tells us his doctor says supplies of the drug are running low - the company which makes it is pulling out of the diabetes field and it could be discontinued. The idea that, just as a potential Parkinson’s wonder drug is emerging it could be shelved, sparks outrage amongst the Movers and Shakers. This is a story we will be keeping an eye on.
As for me, as well as promoting my memoir Ruskin Park, I have continued to try out technology which could help people with Parkinson’s. I came to the pub wearing the Cue-1 device and the Stryd-AR glasses, both gadgets which are designed to make walking easier. I was also kitted out with five sensors, one on each wrist, one on each ankle, one round my waist. This was a system called PD Monitor, just one of the many gadgets which do the important job of trying to measure Parkinson’s symptoms.
Becky Duong, from PD Neurotechnology which makes the system, explains that each night the five sensors upload their data to the cloud and it is then shared with your doctor:
“It gives an idea for your consultant or your Parkinson's nurse, of how you're responding to your medication, what time are your symptoms, and it gives both yourself and the team information to inform how you manage your Parkinson's.”
My own consultant has used the data to review how I’m responding to a new medication. Usually that would have to wait until our next appointment which is nine moths away where he would get a snapshot of my state that day, coupled with my vague impressions of how I was doing.
So you can see how this kind of remote monitoring could transform Parkinson’s care. Our other guest David Dexter, Research Director of Parkinson’s UK, says such systems could also deliver more accurate and faster results from drug trials, where again researchers often just get a snapshot on how participants are doing on a particular day.
David tells us that Parkinson’s UK plans to provide an independent view of the various technologies now on offer - from smart glasses promising to help you walk in a straight line to augmented reality headsets designed to improve cognition through game playing. A new platform called Parktech will get people with Parkinson’s to test gadgets:
“We'll put them into a panel of people to test them, and then we'll write reports on them. So it'll be almost like a “Which?” for technology, so you'll be able to know what technology is actually useful.”
Digital technology is transforming many aspects of healthcare but for most people with Parkinson’s much of their care remains pretty analogue - walking up and down the corridor outside the doctor’s office. But with a confusing range of gadgets on offer - some making unlikely claims - it is good to know that some independent consumer advice will soon be on offer.
Just a reminder that if you have comments or suggestions for the Movers and Shakers team you can contact us at feedback@moversandshakerspodcast.com.
Good luck with those sensors Rory