Sir Nicholas Mostyn is a former High Court Judge who specialised in Family Law and was diagnosed with Parkinson’s Disease in 2020.

Four years ago, in June 2019, I was a High Court judge of nine years’ standing. Before that I had been a successful QC for 13 years, specialising in big-money divorces, and had been given the nickname “Mr Payout” and “Mostyn Powers” by the tabloid press.

I had started learning the law way back in 1976 and had done my first case in June 1981. 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 September 2023 I would be three years post a diagnosis of Parkinson’s disease, retired, and a  podcaster, I would have politely told them not to be preposterous. I might even have pompously reminded them of the aphorism of the great atomic physicist Niels Böhr that “predictions are very difficult, especially where they are about the future.”

If that soothsayer had gone on to suggest that by then 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 been received with some acclaim and which was listened to by thousands, I would have said they were bonkers (not least because back then I had no idea what a podcast was).

Yet that is what has happened.

Diagnosis

In that 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 May 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 wartime invaders.

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

The diagnosis was as abrupt as that.

A Problem Shared...

I first went out for a drink with Rory Cellan-Jones, a fellow Parkinson’s sufferer (an apt description, in my opinion), in September 2020, four months after my diagnosis, in a window when Covid restrictions had been lifted. We shared symptoms, chewed the fat, and in equal measure had a moan and a laugh.

It was a great success and from then on, we met regularly.

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 enlarged the party to four by inviting Paul Mayhew Archer, whose diagnosis was over a decade old.

The gathering was a huge success; it was a real eye-opener to see how different our symptoms were. We resolved to hold regular meetings and were a little 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 October 2022.

We have all become close friends. Forming new friendships late in life has been a real tonic, no matter what the driver was.

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 I could muster. It was drummed into me at school that the worst sin in the canon is self-pity (although I now rather wonder whether that can really be true - is self-pity worse than murder?).

The truism that there is always someone worse off is not helpful for some, but for me it has served as my constant reminder that this condition is not a death sentence.

Getting beyond diagnosis

As readers may know, exercise is considered one of the most important parts of the regime for slowing the progression of the condition.

With that in mind, between January and April 2022, I was heavily involved in helping to raise sponsorship for, and then actually doing, a bicycle ride to Amsterdam with my children and another family (who had recently lost their much-loved stepfather to Parkinsonian dementia). We raised a very sizeable sum for Cure Parkinson’s and for research into an aspect of Parkinson’s that is often overlooked – the so-called Non-Motor Symptoms (including depression, pain, sleep and memory problems). and which can be just as debilitating as the more obviously visible manifestations of the condition.

At one of the regular meetings of our group after the bike ride, 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 appear to show that I then suggested that we should attempt a podcast, which still slightly surprises me because I do not believe that back then I really had any idea what a podcast was.

On 9 July 2022 I produced the first draft of a podcast prospectus. This said:

With (at that time) five opinionated and strong-minded individuals in the group the discussion ranged back and forth after that initial salvo from me.

By August 2022 I was saying this to my fellow Parkies:

There was another problem, for me at least. A serving judge never before 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.

First steps towards making the podcast happen

I approached the President of the Family Division (effectively my boss) with some trepidation. He in turn approached the Lord Chief Justice.

They could not have been more generous.

On 7 October 2022, I wrote to the others, ‘News from the Bishop of Barchester!’

I have been given by the Lord Chief Justice, no less, a nihil obstat (as we say) to my participation in the podcast even while I am a serving judge. This is subject to a strict undertaking that for as long as I am sitting I shall not comment on any public affairs!

Rather, I must confine my contribution to my own experience of PD and PD matters generally.

That prompted an email from Jeremy which said laconically: ‘I didn’t know the Vicar of Bray had been promoted.’

Getting going

On 31 October 2022, Mark Mardell joined us in the pub and in the group. 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: which would be “Who are the Movers and Shakers” an introductory piece, and Diagnosis Stories.  

The podcast would be launched on 18 March 2023 and followed by interviews, including those on Broadcasting House and Newsnight, which Rory and Mark had arranged.

By then Rory had secured extremely generous sponsorship from Boardwave, whose CEO is a a major supporter of Cure Parkinson’s. We had persuaded the hugely talented Alex Stobbs to write our theme music and Till Lukat to prepare our artwork.

Launch of Movers & Shakers podcast

On 6 February 2023, the first two recordings successfully took place. On 17 February 2023, we recorded episode 3 – Young Onset – with our first guests Gaynor Edwards and Deborah Carnwath, and episode 4 – Coping. 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. Further episodes followed, all of which can be found here.

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”!

Success!

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 Facebook page we have set up (and which is brilliantly looked after by Mark).

This led us to set up our first live event which took place on 6 September 2023 in the Middle Temple (so generous in providing accommodation and facilities free of any charge) with the title, What do you think of it so far? It was not quite the unalloyed success we had hoped for, as a gremlin invaded the sound system.

But it was great to meet so many fellow Parkies.

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We have already started recording episodes for series 2, including Sleep, Living Alone, Bedside Manner and Voice.

We have more sponsorship from Boardwave for Series 2 and from my old chambers, 1 Hare Court, for Series 3.

The project seems to be going from strength to strength.

Why such success?

I understand that the podcasts have attracted a much wider audience than the Parkie community alone.

Why?

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 (or perhaps any neurological) 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.

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.

The Movers & Shakers podcasts can be found here - or wherever you listen to podcasts.  

Don't forget to Follow us on Twitter too.

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