When people hear Jo, my wife, say that Parkinson’s has given me a new lease of life, they might think it’s a rather cruel way to talk about an incurable degenerative disease. But she’s absolutely right – not because of some vague “seize the day, fill your bucket list” sentiment (though that might be partly true), but because I am one of the hosts of a podcast called ‘Movers & Shakers’. It’s expanded my knowledge of the disease, changed my attitude towards it, transformed me from a world-weary hack to an ardent campaigner. In fact, it has expanded to fill every nook and cranny of my life. Rather like the condition itself, but a lot more rewarding.
The podcast is about living with Parkinson’s, and as we say at the beginning of most shows ‘we’re here in the pub to have a bit of a laugh, a bit of a moan’. In the pub? The pub is critical.
How on earth can six people with a very serious disease go to the pub and grumble and groan, tell bad jokes and make light of our plight, laugh a lot and occasionally cry, just like we were normal people? Because we are, and that is part of our style. It might be too grand to call it a philosophy, but we have developed a certain attitude. And despite the slowness, the terrible posture and the occasional waving limb, the sentiment ‘it’s still me inside’ is very much part of it.
In just over two years, with five series and more than 60 episodes under our belts and a ‘Podcast of the Year’ award on the pub mantlepiece, we’ve developed a distinct flavour, attitude and style that seems to help many people with Parkinson’s – and it certainly helps us.
I’m jumping ahead of myself, though. Let me explain how it all started, because the origin story is really intertwined with our success. There was a drive—a typically Parkinsonian mix of manic determination, chaotic energy and anarchic disorganisation. I blame the drugs. And the judge.
It all started, as so many things do, with the judge, Sir Nicholas Mostyn. He was introduced by a BBC friend to Rory Cellan-Jones. Then, like some heist movie, Sir Nicholas went on to gather others who had two things in common—a relatively successful, high-profile career and Parkinson’s disease. In short order, he collected Jeremy Paxman, the writer behind the Vicar of Dibley, Paul Mayhew-Archer, Gillian Lacey-Solymar and finally me.
At this stage we were just a bunch of people who met for beer and sympathy. Then the judge had a thought… “Why don’t we write a book together?”. Jeremy Paxman replied, “that’s the worst fucking idea I’ve ever heard.” And so, the idea of a podcast was born – the name Movers and Shakers, a wry piece of self-mockery, acknowledging our privilege. But when I mentioned the idea to a senior BBC friend, she was horrified at the lack of diversity: “You’re all white, you’re mostly men, and you’re old.” She was right, and there’s no getting around it. Had we taken the BBC’s approach, we’d still be sitting in a meeting room discussing it rather than having the 60th episode on air.
We set out without any mission statement – just a vague idea that there was interesting stuff to be said about the disease. When you get Parkinson’s, you get used to hearing, in response to your myriad questions, “nobody really knows.” Fair enough, but we just had to push and probe to find possible answers. A lot of the profound discoveries of those early days now sound like crass clichés – well, that’s the way with acquiring knowledge, isn’t it? None of the six of us round the table had the same symptoms. My voice was weak, my dexterity poor, but I had no tremor. Rory did, and so did the judge but worse are his violent nightmares, Jeremy kept falling over and so on.
We learnt there are 47 different symptoms. Between us, we seem to have most of them. But as well as the vital point that we’re all different, there is also the joy of connection. Every time I use my laptop keypad, I remember the judge miming a series of jerky, funny, tiny gestures and saying, “That’s so irritating”. Exactly! You may have no idea what he’s on about – but I do, and I now know I am not alone in this daily frustration.
In those early episodes, one of the first things we discussed was how we were diagnosed. With growing alarm, we all discovered that none of us had a brilliant experience, at least initially. Doctors who gazed out of the window as they pronounced sentence. One of us remembers telling their consultant that they had read exercise was important and asking what type. “Oh, I don’t know”, the young doctor breezily replied, “ask the Parkinson’s nurse”. Only there was no information on how to find these people, who some think are mythical beasts like the unicorn.
It felt as if many neurologists were good on the chemistry of the drugs but had a very narrow understanding that they had just delivered a devastating verdict to the human being sitting in front of them. Not in every case, of course – we eventually found people who combined expertise with understanding – but it was an alarming start.
We thought we had it bad, but our growing mail bag proved many of our audience had it very much worse. Some hadn’t seen a neurologist since being diagnosed three years earlier, their GP had dismissed their fear that they had PD because they didn’t have a tremor. It became clear the NHS wasn’t keeping even the basic promises it made, let alone delivering what we felt we deserved.
So we launched a 5-point ‘Parky Charter’, and took it to Downing Street last year. We’re going to do the same this year. Is there any point? Yes, I think it is making an impact. Politicians are sitting up and taking some notice of what has been something of a Cinderella condition.
Why has this growing condition had such a low profile?
There is an element both to its detriment and a quality – something a bit different about Parkinson’s that makes it easier to live with and more difficult to campaign about. It doesn’t kill you directly, and it’s not initially terrible; there’s nothing to cut out that will kill you if you don’t get rid of it – because there’s no getting rid of it.
So why should people sympathise? Why should they bother giving money?
It seems to me one of the reasons for the podcast’s success is that, in many ways, Parkinson’s is the human condition writ large. The cliché is that you don’t die from Parkinson’s – you die with it, much like life itself. We’re all going downhill, most of you are ambling, some of us are on turbocharged skis. It’s a degenerative condition that only gets worse; it doesn’t end with a cure or with getting better. It only ends with death, much like life itself. That is why we are such advocates for the view you should squeeze every last drop of enjoyment out of what life you have left.
There are some in what I suppose I have to call the Parkinson’s community who feel we make too light of the disease, and I know some privately criticised our little video based around Gloria Gaynor’s “I Will Survive” with lyrics re-written to reflect our plight. So I don’t want you to think Movers and Shakers comes with a free pair of rose tinted spectacles. Parkinson’s is terrible but amid all the many curses you can, if you search hard enough, discover the occasional blessings.
Even those are not unmixed.
I love that Movers & Shakers has given me a new mission in life – writing episodes, running the website and social media, campaigning for the Parky Charter, and producing various articles and essays. It’s a lot of work. Now it has doubled: after a comment I made on the podcast, I was offered a blog on assisted dying by Prospect Magazine Online. Now, while this is a new lease of life it comes with a stark reminder it isn’t freehold.
Before I retired, I struggled to maintain a proper work-life balance, now I can’t even manage a work-work balance. Parkinson’s has so slowed me down that it literally takes me ten times as long to write a piece as it used to, because my voice is indistinct (so dictation doesn’t work well) and my fingers are slow, making typing difficult. Sometimes even the blessings contain a curse.
It’s a degenerative condition that only gets worse; it doesn’t end with a cure or with getting better. It only ends with death, much like life itself. That is why we are such advocates for the view you should squeeze every last drop of enjoyment out of what life you have left.
But still a boost for the old ego. As a previously high-profile journalist I’m relatively used to the flattering experience of being occasionally approached in the street by people being kind about my work, but I can’t tell you the difference when people with Parkinson’s come up, tears in their eyes, to tell you it has thrown them a lifeline. If we’ve managed to persuade people with Parkinson’s that they aren’t alone or isolated, that they have companions who understand and share the challenges of this dreadful disease, then that is immensely satisfying. Their gratitude is truly humbling and makes it all worthwhile.
But we all need other Parkies as mates, to end the feeling of isolation that can overwhelm you, even in midst of a busy life surrounded by a loving family and understanding non-Parky friends. While we are very frank on the podcast, some woes are more private than others. We want to present a cheerful demeanour to the world, and while we don’t share everything about our lives, we do now share with each other – and that is incredibly important.
Since the podcast began, the other five presenters have been transformed from amiable acquaintances into firm friends. In fact, now they are among my closest friends in the world. It’s unusual to develop such a strong bond with people later in life, but it’s as vital as it is rare.
I can now truly feel that I am not alone. My friends understand what I’m going through in a way that even those who have known me for much longer cannot. In that sense, the curse is transformed, at least in part, into a blessing.
The Movers and Shaker’s Podcast is available at https://www.moversandshakerspodcast.com
