Movers and shakers: Sir Nicholas Mostyn

In 2019, I was a High Court judge of nine years’ standing. Before that I had been a successful silk for 13 years specialising in big-money divorces; nicknamed ‘Mr Payout’ by the tabloid press. I was expecting to work as a judge for another eight years until I was 70. In the world of work, I had done nothing but law, and overwhelmingly family law, for 43 years.

If someone had then predicted that in 2025, I would be five years’ post a diagnosis of Parkinson’s; retired; that I would have gained five fabulous new friends, all with Parkinson’s, with whom I would have made a podcast about living with the disease which had won podcast of the year, and was listened to by thousands, I would have said they were bonkers.

Yet that is what has happened.

By the summer of 2019, I realised I could no longer ignore the tremor that had developed in my right hand. In October, a neurologist raised the awful possibility of Parkinson’s.

The symptoms got worse. By spring 2020 the tremor was very pronounced in the right hand with overflow to the left. I was experiencing great fatigue as well as frequent graphic nightmares that involved acting out desperate struggles against alien invaders.

I had a scan. The report was blunt:  ‘Appearances are most suggestive of idiopathic Parkinson’s disease or Parkinsonian syndrome.’

I first went out for a drink with Rory Cellan-Jones, similarly afflicted, four months after my diagnosis, when COVID-19 restrictions had been lifted. We shared symptoms, chewed the fat, and had a moan and a laugh.

Through media coverage I later learned that Jeremy Paxman had the condition. I rather pushily arranged for the three of us to meet for a drink in June 2021 in his local, the Ladbroke Arms in Notting Hill. Jeremy invited Paul Mayhew Archer, who, since his diagnosis over a decade ago, has devoted his life to making the lot of sufferers less of a burden. Paul’s line is that Parkinson’s is the best thing that ever happened to him. He and I are thinking about anthologising all known Parkinson’s jokes e.g. don’t ask the man with Parkinson’s to buy the next round.

The enlarged gathering was a huge success; it was a real eye-opener to see how different our symptoms were. We held regular meetings and were a later joined by the magnificent Gillian Lacey-Stolymar, whose diagnosis was also over a decade old, and who has undergone the terrifying-sounding Deep Brain Stimulation. Mark Mardell, the well-known Radio 4 broadcaster, joined us in 2022. We have all become close friends. Forming new friendships late in life has been a real tonic.

The initial shock of the diagnosis and anxiety about its future progress was soon replaced by a determination to face the challenges it brings with as much energy and positive spirit as we could muster.

In 2022 my family and I cycled to Amsterdam raising a very sizeable sum for Cure Parkinson’s and for research by Professor Ray Chaudhuri into an aspect of Parkinson’s which is often overlooked – the so-called ‘non-motor symptoms’ (including depression, pain, sleep and memory problems) which can be just as debilitating as the obviously visible manifestations of the condition. The Professor is my neurologist and has become a firm friend. Together, we launched in June 2024 a new charitable fund, King’s Parkinson’s, to focus on the many symptoms of the condition which are, like the bottom part of an iceberg, below the waterline and out of sight.

At one of the regular meetings of our group in summer 2022 I suggested that we should write a book about our experiences, only for this to be crushed by Jeremy as ‘a really crap idea’. The records show that I then suggested that we should attempt a podcast, which still slightly surprises me because back then I really had no idea what a podcast was. With (at that time) five opinionated and strong-minded individuals in the group the discussion ranged back and forth. Agreement looked some way off.

There was another problem. A serving judge never had been allowed to appear in the media, other than to speak solemnly about the law itself. I therefore did not believe that I would be allowed to participate in the podcasts themselves. I approached the President of the Family Division with some trepidation. He in turn approached the Lord Chief Justice. They could not have been more generous and gave me permission to participate.

In the autumn of 2022 Mark Mardell joined us. We reached agreement to proceed. We collectively took a very deep breath, confirmed the engagement of a brilliant producer to whom we had been introduced – Nick Hilton of Podot and pressed the Go Button. Jeremy had the inspired idea that we should record the podcasts in the pub, with our listeners feeling as if they were sitting round the table with us as we sipped (or spilled) our drinks. We set 6 February 2023 as ‘P-Day’ when we would record the first two episodes. The podcast would be launched on 18 March 2023 and followed by interviews on Broadcasting House and Newsnight which Rory and Mark had arranged.

We had persuaded the hugely talented Alex Stobbs to write our theme music and Till Lukat to prepare our artwork.

On 6 February 2023 the first two recordings successfully took place. Nick Hilton boiled down what was recorded by about 50%. His editing skills are phenomenal.

Episode 1 was ‘dropped’ (I had by then learned the jargon) with considerable publicity and generous reviews on 18 March. We have released a total of 65 episodes thus far and surpassed one million downloads.

It has been great fun recording the podcasts with five new close friends. It has certainly been an experience for me. In Court 50 where I ruled as an autocrat (I like to think benign, but opinions may differ) until 28 July 2023, I was used to people stopping talking when I started. The podcast was quite different; not only did people definitely not stop talking, but it was a first for me to be told: ‘F**ck off Judge’!

I leave it to our listeners to judge the success of the podcasts. I’m told they are highly innovative by having as many as six principals. There has been a great deal of positive press publicity, but, more importantly, we have received an enormous volume of overwhelmingly supportive correspondence by email and via the website we have set up.

We have received generous sponsorship from Boardwave for Series 1, 2 and 5; from my old chambers 1 Hare Court for Series 3; from Purdy and Figg and the skiing holiday providers Pure Powder for Series 4; and from Albion barristers’ chambers in Bristol for Series 6.

In 2024 we were astonished to win the coveted Broadcasting Press Guild Podcast of the Year award, beating stiff opposition, including Goalhanger’s The Rest is Entertainment.

The podcasts have attracted a much wider audience than the Parkie community alone. No doubt there are some who listen because we have well-known broadcasters in our group, but I think it is more than that. I believe that our listeners welcome the fact that our chats in the pub provide a positive example of coping in different ways with what is frankly a particularly nasty affliction and demonstrating that while having this condition is pretty rubbish, it is not the end of the world, or a death sentence. We have learned collectively that if you eschew self-pity and give your condition the finger as best you can, life can be more, much more, than merely tolerable.

To that end, we have developed the Parky Charter containing five simple pleas as regards the care and support of Parkies by the state which we handed in to No 10 Dowing Street in April 2024, and following which we were granted a meeting with the Secretary of State. You can see the Charter here. 

There may be more shaking and less moving in the years to come but I know I will be able to have a laugh and a moan about it with my fellow Parkies. The potholes in the road ahead will be navigated; in my case with the assistance of my amazing wife, Liz.