Emma Tumelty, 49, from Cumbria, was queuing for her Parkinson’s medication in her local chemist when she began to experience a tremor.
“This woman came up to me and said in a really nasty tone: ‘What’s wrong with you? Do you need a fix or a drink or something, love?’ I was gobsmacked,” she says.
Sadly, one fifth of people with Parkinson’s disease (22%) have said that their imbalance or slurred speech due to the condition has been misinterpreted as drunkenness.
In a new survey of more than 2,300 people with Parkinson’s, the majority (87%) said they have had negative experiences, including being laughed at or accused of being unfriendly due to their restricted facial expressions.
More than half (54%) said that people don’t believe they have Parkinson’s, while a quarter (24%) had been told they were “too young” to have Parkinson’s.
Tumelty has also experienced problems while traveling and says when her leg started jiggling on a flight, a man angrily said: “Are you going to do that the whole way?”
But when her medication is working well her tremor can be almost invisible, which can cause problems, too.
“I have a Blue Badge and parked in the disabled bay at Asda. When I finished shopping a man was standing next to my car and started shouting at me, ‘there’s f**k all wrong with you – it’s people like you that make it hard for everyone else,’” she says. “I used to be sociable, but I’ve become very good at isolating myself and making excuses about why I can’t get out and see my friends now.”
While 87% of people with Parkinson’s have had negative experiences, this figure rises to 99% amongst those aged 40-50, highlighting the additional challenge of being diagnosed with Parkinson’s at a younger age.
One fifth (21%) have felt or been judged for using a disabled parking space or toilet, while three fifths (59%) had been told that they ‘don’t look ill’.
Michelle Harvey, 47, from Cheshire was diagnosed with Parkinson’s aged 43 and regularly experiences disbelief.
“People tell me that I ‘don’t look ill’ or that I’m ‘too young’ to have Parkinson’s and shoot me daggers when I park in a disabled parking bay. The lack of understanding is incredibly frustrating and upsetting,” he says.
The findings from Parkinson’s UK also highlight the huge toll that public reactions have on those living with the condition every day, with 57% cancelling or avoiding social situations due to embarrassment about their Parkinson’s symptoms, or fears about how people will react to them.
Almost a third (32%) said their less expressive facial expressions – an effect of the condition - had been misinterpreted as being unfriendly and shockingly, 10% of people said they’d been laughed at because of their visible symptoms.
Parkinson’s UK has launched its Parkinson’s Is campaign, which highlights how the condition is far more than just a tremor, and the often-brutal reality of living with it. You can find out more here.