On a humid summer’s day in Barcelona last year I strode – and occasionally stumbled – around the city wearing a T-shirt bearing the slogan “I’m not pissed, I’ve got Parkys”. It was given to me by Matt Eagles, a man in his fifties who was first diagnosed with Parkinson’s at the age of eight [the NHS says most people with Parkinson’s start to develop symptoms when they’re over 50, but some are younger]. Matt has been getting funny looks for decades and is a brilliant campaigner for greater public understanding. Now, he demanded I wear the T-shirt all day.
Not being the type of person who likes to draw attention to himself, normally I would have been none too keen, but I was in a friendly environment: Matt and I were at the World Parkinson’s Congress, a brilliant conference which brings together leading doctors and scientists along with ordinary “Parkies”.
Everywhere I went my T-shirt drew chuckles and thumbs up (and later, at the evening reception, people wanting to buy me drinks, so that by the time I wove my way back to the hotel the slogan was no longer totally accurate).
The T-shirt was a hit because those in the community are all too aware that Parkinson’s has an image problem; a 2019 survey by Parkinson’s UK found 22 per cent of people with the condition had their slurred speech or poor balance mistaken for drunkenness, and 87 per cent had faced some form of harassment or discrimination (32 per cent had also been accused of being unfriendly because of their rigid facial expression).
This month, I read about 74-year-old Dave Ferris who was refused alcohol at his local Sainsbury’s store in Bournemouth because the sales assistant believed he was drunk.
He explained that he had Parkinson’s and the dyskinesia – lurching or staggering movements – which is a side effect of the dopamine replacing drugs most of us take for the condition.
But neither the sales assistant nor her manager seemed impressed by his explanation and he had to head to Lidl for his Prosecco instead. Perhaps if he’d been wearing my T-shirt then Dave would have not had to face what he described as a humiliating incident.
Since I launched the Movers and Shakers podcast last year, about living with Parkinson’s, we have become all too aware of how seriously these prejudices and misconceptions affect many.
Much of the public seems either to be completely ignorant about what is the world’s fastest-growing neurological condition or have a stereotypical view of sufferers as shuffling old men.
Ian King, 70, told the podcast how, before a radical new ultrasound treatment calmed his very violent tremor, he was reluctant to leave the house. “I didn’t go out, I didn’t do anything. When people used to see me in the street, I used to think ‘oh God no, put my hand in my pocket and try to hold it to stop the tremor’.”
Gaynor Edwards, who founded the charity Spotlight YOPD after her diagnosis in 2012, at the age of 42, still worries about what her neighbours think when she gets out of her car with her drugs wearing off: “I’m sure I cut quite the silhouette as I drop my handbag and lurch zig-zagging towards my front door.”
Indeed it is those with Young Onset Parkinson’s, defined as people diagnosed below the age of 50, who in many ways face the hardest time because they do not fit the stereotype.
In that Parkinson’s UK survey, 22 per cent of respondents said people had told them they were “too young” to have Parkinson’s, as if they had made a mistake.
Younger people are also more likely to be still in work and many are fearful of what their employer might think about their ability to carry on doing their job.
Dave Clark, diagnosed in his early forties, kept his Parkinson’s secret for two-and-a-half years from his employer at Sky Sports, where he worked as a presenter: “I thought I’d be labelled disabled, and I thought it changed the way people thought about me,” he told our podcast.
When he did reveal the diagnosis Sky was very supportive and Dave carried on presenting darts and boxing coverage for 10 years.
On one occasion, his stony-faced look while presenting the darts was mocked in a tweet by a betting company – “Dave Clark looks like someone’s left off a bad smell in the studio and wants to kill the person that did it.”
He fired back “that’d be the chronic degenerative neurologic condition, which could eventually rob me the ability to walk, talk and smile” and won praise from thousands of viewers.
But if we have learnt anything during nearly 50 editions of Movers and Shakers it is that most of our audience can’t fight back – against the mockery of strangers, the benefits administrators who somehow believe they can recover from Parkinson’s and be fit for work, and above all a health service which can make them wait more than a year to see a neurologist for a diagnosis.
To give these people a voice we created what we call the Parky Charter, a list of demands for better care for people with Parkinson’s. We’ve taken the Charter to Downing Street, lobbied politicians, including the new Health Secretary Wes Streeting, and have now come up with our boldest – or perhaps most foolhardy – tactic yet to bring Parkinson’s out of the shadows.
The Movers and Shakers have recorded a pop video, singing Gloria Gaynor’s I Will Survive, with new lyrics penned by our brilliant in-house poet Gillian Lacey-Solymar. Joined by other members of the Parkinson’s community and accompanied by the Nutcrackers, a band of neurologists, we belt out a defiant message
“If there was awareness, it would stop us being dissed. We may have a tremor, but it doesn’t mean we’re… drunk. And we end by vowing:” We will survive!”
What we hope, despite our dreadful singing voices, is that our message that all kinds of people get Parkinson’s and need better support, comes through loud and clear.
