top of page

‘In some ways, Parkinson’s has meant a new lease of life’: meet the Movers and Shakers

Sunday, 23rd July 2023. Tim Adams, The Observer

‘In some ways, Parkinson’s has meant a new lease of life’: meet the Movers and Shakers

Jeremy Paxman and five high-flying friends all have Parkinson’s. Tim Adams joins them in the pub as they record the second series of their unmissable podcast about living with the disease

In the back room of the Ladbroke Arms pub in west London, on a hot afternoon at the end of last month, two of the more combative – and lucrative - voices of our times were sparring, amiably. At one end of the table was Nicholas Mostyn, once the best-paid divorce barrister in England – “Mr Payout” – and for 13 years a high court judge. And at the other, Jeremy Paxman, the former grand inquisitor of the BBC, scourge of spin doctors and secretaries of state.

The double act between Paxman and Mostyn is a dynamic that will be familiar to listeners of the unmissable podcast Movers and Shakers. As well as a gift for the trenchant one-liner, the pair share another attribute: both are living with the early stages of Parkinson’s disease. For more than 18 months they have met regularly around this corner table with four other “famous Parkys” – as Mostyn calls them – to make the podcast that discusses aspects of life with the condition, from cognitive function to constipation. They are here today to record the first episode of a new series, which will come out in September. If you have not listened to the initial dozen episodes, I’d urge you to do so. They are funny and honest not only about Parkinson’s, which afflicts about 150,000 people in the UK, and 10 million people worldwide, but about the slings and arrows of life in general.

The pub-table format works perfectly, because just as there is no one set of Parkinson’s symptoms – the NHS website lists at least 20 – so there is no single response to them. The six Movers and Shakers each have a different experience of the disease – some prefer to call it a syndrome – and different and ever-shifting strategies for coping with it.

I feel a bit of a fraud – it used to be called the shaking palsy but I don’t have the shakes yet like some people

- Jeremy Paxman

Mostyn was telling an involved and amusing story about something that had been said after hours at a lawyerly dinner, and Paxman was punctuating this lively performance with trademark sneers. “Oh, Christ,” he muttered in despair, “is this a legal joke?” And then, when Mostyn was still giggling roundly at his own punchline, there was the growled rejoinder: “Oh, do fuck off, judge…”

If Paxman is the Eeyore of the group, and Mostyn at the Tigger-ish glass-half-full end of its spectrum, the rest occupy singular places in between. Gillian Lacey-Solymar, a former McKinsey consultant, BBC consumer affairs correspondent and senior teaching fellow at University College London, has had the disease the longest and most severely, and is the voice of determined courage around the table. Rory Cellan-Jones, long-time technology correspondent at the Beeb, brings an inquiring medical curiosity to the proceedings, while Mark Mardell, former North America editor, offers a thoughtful human counterpoint to Paxman’s enjoyable vitriol. The group is completed by Paul Mayhew-Archer – co-writer of The Vicar of Dibley – who responded to his condition by returning to the stage with a celebrated Parkinson’s-related standup comedy show. When Mayhew-Archer was first diagnosed, his consultant ran him through some of the tell-tale signs. “You seem,” the doctor said, gravely, “to have difficulty using your smiling muscles.” “Well,” Mayhew-Archer replied, “you’ve just told me I’ve got Parkinson’s.” He’s gone on from there.

The topics under discussion in this afternoon’s episode are, first, the ways in which the disease affects voice, and second, the bedside manner of neurologists. As ever, the group, with pints of beer and glasses of wine in front of them, have brought some outside specialists to share wisdom and to be gently – but no doubt terrifyingly – grilled by Paxman and the judge.

First up is Tim Grover, a consultant speech therapist at UCL. As Grover explains, a soft or breathy voice is typical of his Parkinson’s patients, with changes in the vocal cords exaggerated by a shift in perception of what actually constitutes loud or normal volume. Among the six, it is Mardell who has been particularly affected by this – his voice remains instantly recognisable from decades of News at Ten, but at a much quieter pitch. He introduces the session, straining a little to be heard, by suggesting: “I’m Mark Mardell, or sometimes I feel like saying, cue violins, I used to be Mark Mardell.”

Grover, the speech therapist, talks the group through the ways that Parkinson’s can affect verbal as well as physical fluency, making some patients increasingly reluctant to participate in conversation, with a consequent sense of isolation and loss of confidence. He runs through some vocal exercises, and insists that above all they must, must, must keep talking. It is an instruction that happily seems unnecessary – but also suddenly poignant – around this table of consummate professional yakkers. It’s one of the reasons they all do this.

A clip is played from another of Grover’s patients, who describes how he finds it useful to shout out crossword clues to his mother, who is 94 and hard of hearing. He offers an example of this exchange. “Four-letter word beginning with D, mother?” “C?” “No, D!” “B?” “NO! D!”. The group contemplate this. “What did you have for the four-letter word, by the way?” Mayhew-Archer says, “I was thinking ‘deaf.’” Paxman grunts. “I was thinking ‘dead’,” he says, without missing a beat.

By unusual, universal agreement it was the judge, Mostyn, who provided the initial spark for the chatter, and who does most to keep it all going, co-ordinating diaries, coming up with topics. It all began when Cellan-Jones, recently diagnosed, got a call from his old BBC colleague Edward Stourton, insisting that he had a drink with “a great friend who has Parkinson’s and is in a terrible way”. Cellan-Jones met the friend – Mostyn – in the latter’s local in Chelsea “and he seemed very jolly and not at all in a terrible way. And then he called me again and said, do you mind if I bring Jeremy Paxman next time?”

The first consultant just said: You’re on the Parkinson’s scale. Google it when you get home

- Gillian Lacey-Solymar

At that second meeting, Mostyn proposed that they should do a book: the thing he had in mind was a recasting of Three Men in a Boat. Paxman immediately dismissed that as a crap idea, just awful. “Too much like hard work.” The podcast was the compromise.

“He is interesting, the judge, the opposite of stereotypes,” Cellan-Jones tells me in a break from recording. “We are supposed to be the creative types, but all the ideas come from him. He called me at 6.30 this morning, which happens quite often. He had three enthusiastic suggestions, two of which I could happily tell him were bollocks.” (The group are quite sensitive to charges of elitism – one of the judge’s rejected notions was that they did a live show from his golf club.)

Mostyn likes to say that he is the first high court judge ever to be able to broadcast publicly on a subject other than the law. How, I wonder, did he swing that with the lord chief justice?

“Well,” he says, “I am so senior now that I just said, ‘I am going to be doing this.’” The lord chief justice, it seems, got his own back when, at Mostyn’s final plenary session last month – he retires from the bench this week – he took a moment publicly to praise Mostyn’s efforts. “I have to say, Nicholas, this podcast that has increased awareness of this terrible condition is the best thing you have ever done!” Mostyn thought: “Hold on: the best thing? What about the 394 judgments I’ve written?”

In some ways the increased public profile is a return to his former life, when he was winning multimillion divorce settlements for the wives of footballers and oligarchs. “I was always a bit of a tart when I was at the bar,” he admits. “I even agreed once to be interviewed in the Observer by Lynn Barber, in the hope it might attract new clients and interesting cases. But as a judge you have to be anonymous. There is a statue in the high court of a judge with no face, and that is what you have to bear in mind.” The podcast has allowed him to regain his features.

Mostyn was diagnosed at the beginning of lockdown, which made all the attendant anxieties and isolation worse. He was struck immediately by the paucity of information available. “The NHS has no central information hub. And there is nothing but negatives if you Google. So I find the conversations we have for the podcast incredibly useful. And there are positives.”

Such as?

“Well,” he says, “my golf handicap has actually come down since the diagnosis. Twenty-three down to 19. I think the drugs may have calmed me down on the greens. If I get it down to 16, I can enter the Parkinson’s open.”

I have never done exercise apart from raising a glass. Now I’m doing Joe Wicks and tai chi

- Mark Mardell

Mostyn grins. “Why do we do the podcast? To make people realise that this is not a death sentence. That you can live a life that is more than coping, perhaps for years. It’s not going to be a happy ending, but then it’s not going to be that for anyone. And advances are being made.”

Living proof of that latter fact is Lacey-Solymar, who has lived with Parkinson’s for 11 years, since she was diagnosed in her late 40s. To begin with, she only deteriorated. On her phone she keeps a video of herself at her very lowest point, when she was reduced to lying in bed in constant contorted spasm and excruciating pain. She shows me the video, which is hard to witness. “If that had carried on then, the only option would have been to go to Switzerland,” she says.

As listeners to the podcast will know, she was saved from that fate by deep brain stimulation (DBS), the revolutionary therapy which places electrodes in Parkinsonian brains, in order to stabilise some of the more extreme symptoms. Lacey-Solymar now lives as active a life as she can, still even occasionally skiing, despite the regime of drugs and the constant, exhausting challenge of controlling involuntary movement. She worked as long as she could, lecturing at UCL, until that became impossible.

“By the end, I was doing a lecture on my knees, literally,” she says. “My feet hurt so much because your body contorts all the time. And I thought, this is not fair on the students.”

She shows me another set of pictures on her phone, of the 60th birthday party she and her beloved husband have just enjoyed at the wedding venue property that they now run in Inverness. “Life goes on,” she says. The podcast has become the expression of that principle for her. When she was first diagnosed, she was told, shockingly, by one consultant, that her best bet might be not to tell anyone about her condition for as long as possible. This is her defiant, ongoing retort to that advice. One of the things that she hopes the podcast might achieve is a patient’s charter – 10 demands – for Parkinson’s patients in the UK.

We reach people with no one to talk to about symptoms. We can learn so much from each other

- Paul Mayhew-Archer

What would be top of that list?

“I would have something about communication, not leaving people on their own,” she says. “I went to a meeting in America where they were talking about the six habits that can make your Parkinson’s really terrible. One was: don’t take your medication. Two was: be alone. The third was: don’t exercise. The fourth was: have a crap diet. The fifth was: don’t sleep – except none of us do sleep. And the sixth was: be stressed…”

If nothing else, Lacey-Solymar hopes that the chat can reinforce the opposite of those habits among listeners. “We are a lucky group – we are unlucky in that we have Parkinson’s, but beyond that we are lucky. We have people around us. We have sharp elbows and a voice. It means we can do this without getting paid. And we can remind people that they are not alone.”

All of the group imagined that the series would be listened to primarily by fellow sufferers, but the email response from listeners suggests it has also become essential listening for people without the disease. “It has grown like Topsy really,” Mayhew-Archer tells me. One of the reasons for that, he believes, is that there is so much mystery around the condition. “It has become a kind of lifelong learning process for me, and for all of us,” he says.

He was the only one of the six who had attended local support groups; the podcast amplifies the spirit he found there to a national scale. “Also,” he says, “we see up close how it affects each of us differently. One time we did a couple of podcasts in a day and at the end of it Gillian suddenly had this appalling spasm of cramp in her legs and literally lost her voice. That was scary, not only because you felt terrific sympathy for her, of course, but also because you thought: ‘That may well be me sometime soon.’”

Mayhew-Archer has pioneered dance as a therapy, taking sessions with the English National Ballet. He even persuaded Paxman – the unlikeliest of prima ballerinas – to join him. “Jeremy has been quite depressed,” he says. “And that is a key symptom of Parkinson’s. Even so, there is something joyous even about the way he embraces the extreme grumpiness. It gives him a purpose. But he also expresses what a lot of people think about it as well.”

They all obviously experience that darkness from time to time, but up until now Mayhew-Archer, who has a decision to make about DBS, has tried to make light of it. His standup show has been a revelation. “I am doing some dates next week,” he says. “Just hearing people laugh does you the absolute world of good. I hadn’t performed for 40 years, since I left university. In some ways, Parkinson’s has given me a whole new lease of life. Someone asked me: are you glad you got it? And of course I am not glad in lots of ways, and I know how it will end up, but perhaps I am, in some ways…”

Every hospital trust deals with it differently. Some have Parkinson’s nurses, others simply don’t

- Nicholas Mostyn

The second part of the afternoon’s recording is concerned with bedside manner, the critical way in which the news of the illness was first delivered, and the realities of ongoing treatment within the NHS. Lacey-Solymar, who is leading this discussion, invites the group to remind listeners of how they were first given the sledgehammer diagnosis.

The judge kicks off. “It was appalling, really,” he says. “The original consultant said: ‘It’s likely you will be in a wheelchair in five years’ time.’” Mostyn challenged him on that prognosis, as any barrister worth his silk would. “The consultant then said there is a one in five chance I would be in a wheelchair. I would give him none out of 10 for his understanding of probability alone.”

Cellan-Jones first had an inkling something was wrong with him when he was on holiday with his wife in 2018 and she kept telling him to stop dragging his right foot. Before he got to see a GP about that he was doing a live broadcast from Jersey for the BBC, and as part of this he was holding a length of cable and “apparently my hands were shaking”. A neurologist who saw the bulletin contacted him to suggest he got checked out.

After that, he waited a very long four months for a consultation. “In the end I saw a junior doctor, not a consultant,” he recalls. “And she moved my arms around a bit, and then said: ‘Yes, classic case of Parkinsonism.’ I have to say, that felt a little cold to me.”

Like the rest of the group he has been more impressed with subsequent care, though resources are stretched very thinly. The norm is that they see a consultant only once a year – which is nowhere near enough. “They change your drug regime, and then a year later ask you how it is going…” Cellan-Jones says.

That shortfall – both in initial communication and subsequent provision – is then the subject of heartfelt discussion about bedside manner between the six and their guests, who range from a senior neurological consultant to Lacey-Solymar’s son, Oscar, who is a medical student at Edinburgh.

My Parkinson’s tremor gets worse with tension – watching my football team, Brentford, for example

- Rory Cellan-Jones

Afterwards, with another episode in the can, the group repairs to the bar. Most are in high spirits. Lacey-Solymar is talking about her discovery of table tennis as a useful distraction from her symptoms, and about the new musical, Irrepressible, based on the life of Lady Emma Hamilton, that she has co-written and which will open in Edinburgh in the summer. Paxman sits carefully, listening, with a beer in front of him. This is his local. The woman behind the bar tells me how much they love him coming here, usually with his dog, who knows the way by heart. He almost smiles when I suggest to him that he doesn’t seem to quite share in the optimism of his mates around the table.

“No, no,” he insists, despite his better judgment, “the podcast is good fun. And what has been surprising is the discovery of what an unmet need there is for such a thing. But the fact is, I don’t generally like talking about it. I hate having it. Just hate it. It is not what I imagined I would be up to at this stage of life. But then, I didn’t imagine I would be up to anything much, I suppose.”

What is the worst of it for him?

“Well, you do feel alone,” he says. “And I feel at the same time also a bit of a fraud. It used to be called the shaking palsy but I don’t have the shakes yet like some people And my voice is OK. But I do everything so very slowly now. My mobility is bad. I’m late for everything. I didn’t know anyone who had Parkinson’s before. I thought only old people had it, but I suppose I am old.”

Sparring a little more with the judge returns him to himself. Before the group starts to drift away, Mostyn makes sure they have some crucial dates in their diaries, not least 5 September, which will see the first live show. “Oh fuck,” Paxman says, “must we?”

Mostyn laughs. “The best thing about the podcast,” he says to me, “is I have made five fabulous new friends. You don’t make friends at this stage of your life, normally. I’m 66. And as Jeremy might say, now either they will be at my funeral or I will be at theirs.” There is plenty of life to be lived before then, though, the judge insists. It’s why he took early retirement. “I might get 10 or 20 good years. I might get five. But I aim to give this disease the finger right up to the very end.”

The Movers and Shakers don’t agree on much. But it goes without saying that they all drink to that.

bottom of page