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“The world that knew about my Parkinson's was much smaller, a fortnight ago”

Wednesday 12th April, 2023. Reem Makari, Pod Pod

Movers & Shakers co-host Sir Nicholas Mostyn on why podcasting was the right choice

There’s no straight answer to how the Movers & Shakers podcast came together. The show, which deals with the reality of living with Parkinson’s disease, launched last month with minimal pre-release marketing, but nevertheless shot up to number three in the UK podcast charts shortly after its debut.

“I think that what this has demonstrated is that one of the things that does seem to be impaired by Parkinson's disease is memory,” says Sir Nicholas Mostyn, one of the podcast’s six co-hosts, “because nobody can quite remember who is responsible for this!”

“They all say it was my idea,” he laughs on a video call from his office, where he sits for his day job as a High Court Judge. Three years after his diagnosis, he’s the only member of his podcast group still working full time, only months away from his upcoming retirement in the summer. “It is true that I did set up the group,” he adds.

The group in question consists of Mostyn and five other former BBC personalities with recognisable faces and voices from TV and radio, each battling their own diagnosis with Parkinson’s disease. The story goes: Mostyn was first introduced to former BBC News technology correspondent Rory Cellan-Jones as a fellow Parkinson’s sufferer. After hearing about his condition, Mostyn then invited former BBC presenter Jeremy Paxman to join them, who then invited the rest - presenter of BBC Radio 4’s The World This Weekend, Mark Mardell, former BBC consumer affairs correspondent Gillian Lacey-Solymar, and Paul Mayhew-Archer, co-writer for BBC sitcom The Vicar of Dibley.

“We'd met as a group about once a fortnight or once every three weeks and we did find our conversations were extremely helpful and were mutually supportive,” says Mostyn. “Although our symptoms were different, we realised they did all have some underlying features in common and that by talking about it, it was a great assistance.”

“And so we said, why don't we let other people eavesdrop on our conversations by having a podcast?”

Keeping it authentic

In an effort to stay as authentic as possible to the conversations they were having off mic, the group decided to record the podcast in a pub located in Notting Hill. For every recording, they reserve a room in the back, order a round of drinks, and have their producer come in with “all these terrifying wires and boxes” to set up the recording.

The podcast is produced by podcast production company Podot, and more specifically by co-founder and director Nick Hilton, former broadcast editor of The Spectator. According to Mostyn, each episode is seamlessly boiled down by Hilton from one hour to 30 minutes without losing any sense of continuity. This is already difficult to do with a standard podcast, but with six people it’s even more of a challenge.

“When he recorded the first one, you could see [Hilton] at the end of the table with his head in his hands, just shaking his head,” says Mostyn. “He has never before had to edit a podcast with six people, but he's been absolutely brilliant and his editing has been fantastic.”

The group takes turns to curate a theme for each episode, looking at different areas in which Parkinson’s disease affects their lives and interviewing a range of guests, including an upcoming recording with Mostyn’s own personal trainer. Other topics they’ve addressed so far include young onset Parkinson’s and diagnosis stories. Mostyn emphasises that although there’s a general discussion topic and theme, the group tries to keep it as natural as possible.

“There are no actual formal rules about this,” he says. “The essence of the podcast is that it’s supposed to be an ear onto our discussions in the pub, so we hope it doesn't sound as if it's too scripted.”

Listening to the audience

It was no surprise to Mostyn that the podcast gained such strong traction in a short period of time when the rest of the group is made up of high profile journalists who already had a public platform and were guaranteed to generate a lot of interest.

What he and the rest of the group didn’t expect, however, was the overwhelming responses from people who related to the podcast - some reaching out to ask about their experiences with certain medications, some sharing their exercise and diet regimen recommendations, and some reaching out to say that they have had a loved one in their life affected by the disease at one point and that they wished they were still around to listen to the podcast.

“I didn't particularly feel deprived of the company of fellow sufferers because I just organised to meet them, but I dare say that most people do feel that, because only a tiny minority go to these groups,” Mostyn says. “And if I've learned anything from the enormous number of messages that have come in, it is that most people feel very isolated.”

When Mostyn was first diagnosed, he had the option to attend any of the 365 local groups run by research and support charity Parkinson’s UK, but says he didn’t feel the need to. Because he’s an “obsessive organiser”, he explains, he decided to form his own group with Movers & Shakers, but the podcast has since formed into a support group for listeners who either have Parkinson’s or know someone that does.

These aren’t the only people listening in, though; Mostyn also says that one of the objectives of the podcast is to get more medical professionals listening to the show. He says that for the professionals, they've had to tell patients that they’ve been diagnosed with Parkinson’s hundreds of times but for the patient, it still remains a singular occasion. Mostyn is encouraging medics to try to be more empathetic when breaking the news to patients and to allow them the time to process it.

Medical professionals are already starting to take note of the podcast and how it can help them understand Parkinson’s disease patients. Just after the launch of the second episode, Mostyn was asked to join a video call with 600 neurologists in India to help answer their questions about Parkinson’s.

“They said who are you? And I said, I'm your bread and butter,” Mostyn recalls. “I'm the reason all of you've got a job - because it's the people like me with Parkinson's that got you your jobs as specialists.”

Why podcasting is the right medium

For someone who sounds so natural on the mic, it's hard to believe that this is Mostyn’s first time as a presenter. Admittedly, his other co-hosts’ years of experience in the media mean they occasionally have to tell him to “speak closer to the mic!” and “stop talking over others”, but to the average listener, he’ll sound like a seasoned professional.

Mostyn isn’t all too familiar with the podcasting world, besides being an “admirer” of shows like The Rest is Politics and The Rest is History, but although it's still early days, Mostyn has already started to see why a podcast was the right choice.

“One thing I've realised about podcasting is that it's a much more liberated medium. It's much less formal and there is much more scope for improvisation, because people don't seem to be up against the dreaded tyranny of time,” he explains. “People seem to have much more time and freedom to say what they want to say.”

Being so vulnerable in front of a mic for the first time seems as though it should be terrifying, but Mostyn says he isn’t worried about that at all. He remembers a moment during a recording when Paxman asked him if he’s concerned about what people will think of him. He responded: “they’re going to think that anyway, so I don’t worry about it”.

“The hope [with this podcast] is that we will be able to explore all the things that we think are worth exploring,” says Mostyn. “And then it will be there. It doesn't disappear. It's there for anybody to listen to in the future, isn't it?”

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