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Jeremy Paxman and friends: Parkinson’s brought us together

Sunday, 9th April 2023. Rosamund Urwin, The Sunday Times

A pub-based podcast with the TV veteran and other high achievers is winning plaudits for its honesty

Jeremy Paxman, the former host of BBC2’s Newsnight, was diagnosed with Parkinson’s in March 2021. “I can’t read or write properly any more,” he reveals. “Just getting out of bed takes for ever.” For Paxman, 72, the most frustrating effect of the condition is that “everything now takes an inordinately long time”. He had always been a quick-thinking multitasker, but is now losing basic skills to the disorder.

Sir Nicholas Mostyn, a High Court judge, has found that his most frightening symptom of Parkinson’s is acting out his most lurid dreams: “I have violent, fighting nightmares — throwing furniture around; trying to strangle my wife; smashing things; sleepwalking, leaving the house stark naked.”

While for the former Radio 4 presenter Mark Mardell, 65, who realised last year that either he had a problem or “Waitrose packaging was getting tougher and tougher to get into”, the worst part of Parkinson’s is that it has robbed him of his booming voice. “It has become weak, which diminishes me,” he says. “Even at home with my family, I’m left saying: ‘Excuse me! I’m still here. I’m not dead yet.’”

The three of them have joined the BBC’s former technology correspondent Rory Cellan-Jones, the ex-journalist and lecturer Gillian Lacey-Solymar, and the Vicar of Dibley writer Paul Mayhew-Archer as the stars of a new podcast about the disorder, Movers and Shakers, which launched last month.

The group decided to start a podcast after meeting up regularly at a pub in Notting Hill. For a podcast about a degenerative neurological condition it is surprisingly upbeat and often funny, which is reflected in a postbag that after just three episodes was brimming with praise. The podcast also illustrates the breadth of experiences of Parkinson’s, which can venture far from the stereotype of an elderly man with a tremor — about a third of patients do not shake, about a tenth are diagnosed before the age of 50, and women represent a sizeable minority of sufferers.

Parkinson’s is caused by a loss of nerve cells in the substantia nigra, a part of the brain that controls movements, although the wider catalysts are unclear. There can be a genetic dimension, though. Cellan-Jones’s late father, the director James Cellan Jones (obituary, September 10, 2019) — whom he only met aged 23 — also had the condition. He “cried and cried” when he heard his son had it too. The sextet hope the podcast will both increase understanding of Parkinson’s and bring comfort to other sufferers, of which there are about 145,000 in the UK. It was born out of a regular meeting between the group in the Ladbroke Arms pub in Notting Hill, west London.

Mostyn suggested their conversations could inspire a book, which Paxman promptly dubbed “the worst idea anyone had ever had”, only for Cellan-Jones to strike upon the compromise of a podcast. Many of the common symptoms limit communication — the sufferer’s face can become less expressive (known as the “mask of Parkinson’s”), their handwriting illegible and tiny, and their speech garbled.

Mayhew-Archer says: “We want to talk about it while we can . . . the voice of the person with Parkinson’s, even when they still have a voice, is not actually heard that much.”

Squashed around a small table in the back of the pub — “it takes half an hour to get us all in,” they say, only half-joking — the group records three episodes on the trot in front of me, bouncing ideas off each other. Afterwards, they note the Tigger to Eeyore spectrum of the group’s approach to illness. Mayhew-Archer, 70, is Tiggerish, saying that his Parkinson’s diagnosis 12 years ago was “possibly one of the best things that has happened to me in my life”. It led him back to performing with his appropriately named stand-up show, Incurable Optimist. He says that it is important “to remember the funny bits” of the condition. He was recently on a train and needed to use the loo, but his Parkinson’s made it difficult to pull his trousers back up, and he bashed against the door, opening it and exposing his naked bottom to a crowd of passengers. “I thought there is only one way to think of this, and that is as funny, so I laughed.” He also says that his wife once told him that if everything got too much, she would “take him to that Swedish place”, to which he replied “Ikea?” She meant Dignitas in Switzerland, of course, but Mayhew-Archer says his young grandchildren have put him off that notion: “There was a time when I thought that would be a good idea, and then these grandchildren appeared and I think I want to hang around as long as possible to see what happens to them.”

Mostyn, 65, who is still sitting as a judge but will leave in July to enjoy “a few good years of retirement”, is a fellow optimist. His appearance on the podcast is the first time a serving judge has been allowed to appear in the media talking about a subject other than the law — the lord chief justice had to give permission, and the producers have to bleep out his swearing.

On the bench, Mostyn has an assistant to take notes as he can no longer write. However, he fears his optimism is a “Pollyanna-ish” form of denial. “I have a worry that I cannot take seriously what I know is down the line,” he says.

Paxman is the group’s Eeyore. He says that he finds Parkinson’s “very
depressing” and that “it has given us f*** all”. Cellan-Jones, 65, neatly sums up the dynamic: “Paul cheers us up — and you [Jeremy] bring us back down again. It’s the cycle of life . . . And also you realise: ‘At least I am not as bad as Jeremy.’” Paxman feels particularly “underwhelmed” by research into Parkinson’s, since progress towards a cure and improved treatments has been slow. He thinks the existing drugs do not have much impact on him, but “my partner thinks differently — she thinks . . . I am less grumpy with the medication.”

A new treatment has, however, been developed: a type of surgery called deep brain stimulation (DBS), and it has transformed Lacey-Solymar’s life. Now 59, she was diagnosed at 48, which means her Parkinson’s is defined as early onset (under the age of 50). “It is odd to have this old person’s illness where you slow down so much when you are only 48,” she says. “I have become the person who used to drive me mad when I was younger by being super slow. If there was an old lady who couldn’t get the coins out of her handbag, I’m that woman now.”

She shows me a video of her writhing on a bed in agony before the operation, suffering from what is known as dystonia. “The pain was indescribable and it was all concentrated in my foot, which would contort because of the Parkinson’s,” she explains.

Four years ago, she had the operation, which was carried out by Professor Ludvic Zrinzo, a consultant neurosurgeon at the National Hospital for Neurology and Neurosurgery in Queen Square, London. She describes it as “a miracle — I went in screaming my head off, and came out with the pain gone.” Zrinzo adds: “It is something better than a miracle — it’s science.” It is a procedure in which the surgeons insert a neurostimulator into the patient’s head, which then sends electrical impulses to specific areas in the brain. Lacey- Solymar has a remote control to operate it.

Zrinzo is so impressive and assured in his podcast interview that he even changes Paxman’s mind about the treatment. “[Before I heard Zrinzo] the idea of some damn fool rootling around in one’s brain was not something I wanted to encourage, but I was very impressed by him.” Mayhew-Archer is expecting to have DBS next year too.

As well as the symptoms of Parkinson’s, some of the treatments can have extreme side-effects. “For men, it is gambling and sex; for women it is mostly shopping,” explains Lacey-Solymar. “That has been a problem for me — in the middle of the night, I will go on the internet, fill a basket of clothes. But thank God I don’t actually buy it.”

However, she believes the drugs have also caused “a flourishing in creativity”, and she is going to Edinburgh Festival this summer with a musical she has written about Emma Hamilton, now mostly remembered only as Nelson’s mistress.

The Movers and Shakers hosts hope that the podcast will help to build a global Parkinson’s community. Their postbag suggests that their message is much needed. An American listener, Eileen from Chicago, emailed them to say: “Your pub chats are soothing hearts about the globe. Your podcast is such a balm for my weary spirit.”

The Movers and Shakers podcast is on Apple, Audible and Amazon Music; new episodes are released on Saturdays

The Sunday Times 

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