The Dibley writer who’s determined to find his Parkinson’s funny
Sunday, 21st January 2024. Liam Kelly, The Sunday Times
Paul Mayhew-Archer’s revolutionary treatment is charted in an audio diary for his podcast with Jeremy Paxman
Paul Mayhew-Archer has never been much into playing football, but The Vicar of Dibley writer joined a football team last Wednesday.
“I was actually running, which I haven’t done for some considerable time,” he said.
It is a remarkable feat for a 71-year-old man who has had Parkinson’s disease for more than a decade, who would shuffle when he tried to walk once his medication wore off and often “froze” at inconvenient moments, such as getting on or off a train.
Two months ago, however, he had a revolutionary treatment, called deep brain stimulation (DBS), to help manage the progressive neurological condition, which is caused by the degeneration of nerve cells in the substantia nigra, a part of the brain that controls movement.
The six-hour procedure, which took place at the John Radcliffe Hospital in Oxford, involved surgeons drilling two holes into his skull and attaching electrodes to his brain, one in each hemisphere. They were then joined by a wire, under the skin, to a battery pack similar to a pacemaker, also under the skin, that has been inserted on the right side of his chest opposite his heart.
The electrodes, which were only switched on this month after his head had been given time to heal, send pulses to Mayhew-Archer’s brain at a speed of 130 beats per second to help with the physical symptoms of Parkinson’s, such as involuntary, uncontrollable movements, known as dyskinesia.
Prior to his surgery, he had many of the symptoms most commonly associated with Parkinson’s. As well as the shuffling walk and the tendency to freeze, he also struggled to make eye contact when talking to people, had started to forget names and had constipation (“which can be quite serious”) and erectile dysfunction, for which he takes Viagra.
The device should last 25 years, and since it was switched on this month, Mayhew- Archer, has already noticed the differences. “My walking has improved. They said it wouldn’t help with the freezing but it has sped me up,” he said. “It also makes the day smoother, so I don’t have these ‘off periods’ when the drugs wear off, because this is working in the background 24 hours a day. My balance seems to be better and more secure. Although they only said it would help with motor symptoms, the effect of improving them is that your mood is improved: fewer dark episodes.”
Mayhew-Archer has been married to his wife, Julie, since 1975 and the couple live in Drayton, Oxfordshire. They have one son, Simon, 39, a comedy producer, and two grandsons, Berno, four, and Dylan, one. His comedy career is illustrious. Along with Richard Curtis he wrote The Vicar of Dibley and the BBC adaptation of Roald Dahl’s Esio Trot, as well as working on shows such as Radio 4’s I’m Sorry I Haven’t a Clue and the BBC television comedy series Two Pints of Lager and a Packet of Crisps.
In 2011, a friend advised him to see a doctor when his handwriting got increasingly small and his right arm would not swing — both classic symptoms of the disease. He was given the diagnosis at the age of 58.
From the start, Mayhew-Archer was adamant he would see the lighter side of the disease. “The doctor said that my facial muscles were somewhat firm and I was finding it quite hard to smile. I said: ‘Well, that could be because you’ve just told me I have got Parkinson’s,’” he said. “I remember thinking at that very moment, ‘I am determined to find this funny’. I don’t know why. I just had the determination that it would be a good way of treating it.”
His doctor told him he could expect to have five good years, “and I said to Julie, ‘That’s pretty good, because I’ve had the odd good year up to now, but five on the trot is something fantastic’”.
In the intervening years, Mayhew-Archer experienced a pronounced physical decline, and opted to have DBS about a year ago, partly because his doctors encouraged him without “promising the earth”. While the surgery, though not a
cure, is seen as one of the most effective treatments for Parkinson’s, it has not been widely adopted.
It is carried out at 17 centres across the country and, according to NHS estimates, about 5 per cent of the roughly 153,000 people with the disease have had it done. Between 300 and 400 DBS surgeries are performed each year, most of which are for Parkinson’s, though on rare occasions it is used to treat obsessive compulsive disorder and depression.
The treatment was discovered by chance by the French surgeon Alim-Louis Benabid, who in 1987 operated on a Parkinson’s patient and inserted an electronic probe into the brain. He noticed that when its frequency increased, tremors entirely subsided.
Today, there are no official guidelines about which Parkinson’s patients can have DBS, but it is only recommended for those whose physical symptoms are severely affecting their lives but respond well to medication. Those who are assessed for DBS have their memories and cognitive abilities tested both on and off medicine. It is not recommended for those who have serious issues with their memory, depression or hallucinations.
Some patients do not have DBS because they perceive elective brain surgery to be an unnecessary risk. Mayhew-Archer said he was unconcerned about the prospect of “dying on the operating table” but Julie, 70, was much more worried. A friend of the couple had the operation last year but died shortly afterwards, following a stroke. “That was all I knew about it, I had not heard of it before,” she said. “It was a 100 per cent failure rate, but it was Paul’s decision. It was hard.”
James FitzGerald, professor of neural interfacing at the University of Oxford’s department of clinical neurosciences, operated on Mayhew-Archer. “We would like to see more referrals because there are people out there who could benefit from it,” he said. “A lot of people have never heard of it.”
Mayhew-Archer has been keeping an audio diary of his experiences before and after his surgery for the Movers and Shakers podcast, in which he and five friends with Parkinson’s talk about living with the disease.
Recorded in a pub in west London, the others around the table are Jeremy Paxman, the former Newsnight host; Rory Cellan-Jones, the BBC’s former technology correspondent; Sir Nicholas Mostyn, the retired High Court judge; Mark Mardell, the BBC’s former North America editor; and Gillian Lacey-Solymar, the former journalist and university lecturer. The podcast, which is surprisingly upbeat and often funny for a show about Parkinson’s, returns for a third series next month. Mayhew-Archer was appointed an MBE in 2020 for his work campaigning to raise awareness of Parkinson’s and for the first time in more than 40 years he has been touring a stand-up show, which is called Incurable Optimist.
“I thank my lucky stars that I’ve got Parkinson’s, really,” he said. “It’s led to some amazing experiences.”