Over 90% of people living with Parkinson’s in Northern Ireland say they have been on the receiving end of misconceptions about the condition, research carried out for a charity has found.
In survey launched by Parkinson’s UK to mark World Parkinson’s Awareness Day, 17% said their their imbalance or slurred speech had been mistaken for drunkenness.
Over a fifth (22%) said their less expressive facial expressions – an effect of the condition — had been misinterpreted as being unfriendly.
David Blake, a 70-year-old from Belfast who was diagnosed with Parkinson’s at the age of 65, said: “I have a very supportive family, but the main issue for me is the condition is not visible.
“You can find yourself hurried in shops or, particularly relevantly to me, when going through airport security.
“There are three aspects to Parkinson’s but not everyone has all three – I do not have the shaking but I do have slowness and stiffness.
“Conversation can be difficult because people move on before you’ve got your words out.”
The survey, described by Parkinson’s UK as the largest of its kind ever undertaken, also found that over a quarter (26%) had been told they were ‘too young’ to have Parkinson’s, while more than half said people simply didn’t believe they had the condition.
Over a quarter (27%) said they felt they had been judged for using a disabled parking space or toilet.
Nicola Moore, Parkinson’s UK Northern Ireland director, said: “People don’t fully understand what Parkinson’s is or how it affects people.
“The public doesn’t think that Parkinson’s is a serious condition.
“And people with Parkinson’s have told us that they don’t feel understood. The Parkinson’s Is campaign aims to change that.”
She added: “We need everyone to recognise Parkinson’s as the serious health condition it is, and the major impact it has on everyday life so that people with Parkinson’s do not continue to experience such appalling misunderstanding of their symptoms.
“We also want to show how, despite their symptoms, people with Parkinson’s don’t let the condition hold them back from achieving the most incredible things.”
More than half of those surveyed (57%) said they had cancelled or avoided social situations due to the negative impact of public perceptions.
In total, 91% of people living with Parkinson’s in Northern Ireland said in the survey that they’d had negative experiences of some sort as a result of people not understanding their symptoms – including being laughed at, alongside the assumption of drunkenness or unfriendliness due to movement problems caused by their Parkinson’s.
Across the UK, more than 145,000 people are diagnosed with Parkinson’s – around one in every 350 people.
Parkinson’s UK say there are approximately two new diagnoses every hour.