‘I was only meant to have five good years living with Parkinson’s – I’ve nearly had ten’

The co-writer of The Vicar of Dibley, Paul Mayhew-Archer, approached his diagnosis just like he treats life: by laughing his way through it

When Paul Mayhew-Archer was first diagnosed with Parkinson’s Disease, his doctor told him he should have “five good years” before things begin to deteriorate.
“Yes,” he says, loading a punchline, “and at the time I thought that was pretty fantastic, because I’d had the odd good year up to then, but five on the trot? Well, I was very excited.”
The diagnosis came in 2011, when Mayhew-Archer was 58, meaning that next spring he will mark a decade of pretty good years, doubling his doctor’s conservative estimate. The comedy writer, who is partly responsible for overseeing the scripts to some of our best-loved sitcoms – notably The Vicar of Dibley but also Miranda, Old Harry’s Game, and the 2015 BBC adaptation of Roald Dahl’s Esio Trot – still feels in reasonable health, despite being “aware of it developing”.
“When the pills wear off I slow down, so everything becomes a massive effort then I take more pills and I get back to some normality. Though I’m aware of some new symptoms poking their nose in, like my eyes closing when I’m talking to people, so I’m starting to have a bit of Botox,” he says.
He laughs at the idea of going rigid-faced, like some kind of fading Hollywood star. He manages to laugh, in fact, at just about every aspect of his condition. It is largely how Mayhew-Archer, now 67, has approached Parkinson’s – the progressive neurological condition that around 145,000 people currently live with in the UK – ever since he was diagnosed.
Gentle, perfectly-observed humour is his métier, and illness was never going to get him down. Over the last decade, as well as working with charities such as Parkinson’s UK and The Cure Parkinson’s Trust, Mayhew-Archer made a documentary, Parkinson’s: The Funny Side, and even toured stand-up comedy about the disease, to the delight of sufferers and carers in the audience. That work, shedding light on the condition but also finding the funny side, was recently rewarded with an MBE in the Queen’s delayed Birthday Honours.
“The citation is ‘Services to people with Parkinson’s Disease and Cancer’, so it’s to do with my [charity] work and also, I suppose, that I try to cheer people up,” he says, speaking on the phone from his home in Oxfordshire.
“My contention is that we’re in danger of taking serious illnesses too seriously all the time. I don’t mean we should trivialise them, but we should give ourselves permission to laugh as much as we possibly can and give permission to those who look after us to laugh.”
The effectiveness of that idea has been proven in 2020. Britain’s first line of defence has always been its sense of humour, no matter what misery is attempting to sink its mood, and this year, be it through internet memes or Matt’s front page Telegraph cartoons, our attitude to Covid-19 has been to laugh as much as cry.
“For the first two months or so [of lockdown], I tweeted a funny reminisce or something to make people smile, as a way of lightening the mood and keeping cheerful, because it’s important,” Mayhew-Archer adds.
These days, I offer, it only takes looking at the news for a moment to feel down. Mayhew-Archer sees the opportunity for a gag, and doesn’t waste it.
“Yes, well one of the symptoms of Parkinson’s is constipation, but I find I only have to watch the news for a few hours and it sorts that right out…” he says. “It’s very easy to get locked into despair, so in whatever way, whether exercise or a new skill, you need targets.”
He has been shielding (though admits he isn’t quite sure what that means) throughout with Julie, his wife of more than 40 years. Besides a few cautious visits to the shops to buy essentials – including chocolate, something he’s become addicted to since he was diagnosed – they’ve mainly stayed in, occasionally being visited by their son, Simon, and two-year-old grandson. Quite how Parkinson’s is affected by Covid-19 isn’t clear but, given some of the dozens of possible symptoms are related to the immune system, he’s decided it’s best not to risk anything more adventurous.
Mayhew-Archer’s condition was noticed thanks to his handwriting. Back in 2011, a friend noticed that his script was becoming very small, which is a possible sign of Parkinson’s. A visit to a neurologist soon confirmed it. As a disease, the prognosis can be as varied as the symptoms, and he knows he’s one of the lucky ones whose Parkinson’s has taken over his motor skills at a relatively slow pace.
“A few months ago I did launch myself out of bed, and acting out dreams is a symptom, but hopefully that won’t happen again. Another concern is falling. Three good friends in my local Parkinson’s group, out of about 40, have died in the last year from falls. Which is a bit sobering really,” he says.
“It’s completely different for different people. Someone was telling me yesterday their father was diagnosed at 61 and gone at 66. Hopefully I have many more years, but it’s impossible to say. They talk about this as a ‘disease’, but that’s a complete misnomer. It’s not a disease, it’s more like a syndrome because there’s a collection of different things. Some get dementia, some don’t. Some get weird hallucinations. But a lot isn’t known about it.”
For a long time, the highest profile sufferers of Parkinson’s were Muhammad Ali and Michael J Fox, both of whom experienced tremors.
“One of the worrying things is that people, even a lot of GPs, assume you must have a tremor to have Parkinson’s,” says Mayhew-Archer. “But 25 to 30 per cent of people with Parkinson’s don’t have a tremor. So it’s important to get that across. There are some common symptoms – loss of smell, stiffness, the handwriting – but what there isn’t is a biomarker, like a blood test, that can be done to confirm it.”
There is now an international movement called PD Avengers, which is dedicated to encouraging people to take Parkinson’s more seriously and push for a cure. Mayhew-Archer is part of it, and plans to dedicate his energy to the cause while he still can.
“Apathy is a symptom,” he explains. “A professor told me it was extremely rare for people with Parkinson’s to kill themselves. I asked why. He said, ‘Well, people with it do get very depressed, but they just can’t be bothered.’”
He howls with laughter at that one. Another scientist told him it can affect life expectancy. Think of the age you expected to reach and knock about four off, he said. “Well, I was thinking of living until about 98, so 94 will do me fine.”
Mayhew-Archer will keep spreading the word, keep pushing for that cure, and keep finding the funny side – he’s even written a romcom about Parkinson’s for the BBC. And then, before he knows it, the 10th anniversary of his diagnosis will roll around.
“Because of my love of chocolate, I think I might take the family to Cadbury World.” Then, he says with a last chuckle, he might send a big “I told you so” to that doctor. Ten good years – and counting.
Paul Mayhew-Archer is an ambassador for The Cure Parkinson’s Trust. For more information, visit cureparkinsons.org.uk