More than 90% of people in Northern Ireland who have Parkinson’s feel “harassed” because of it, a charity reveals today.
And 56% of those surveyed in the region said that people don’t believe they have the condition.
Others complain of members of the public thinking they are drunk, Parkinson’s UK Northern Ireland found.
They are releasing the figures today to mark World Parkinson’s Day to “reveal for the first time the shocking lack of public awareness around Parkinson’s and its symptoms despite it being the second most prevalent neurodegenerative condition after Alzheimer’s”.
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They say 91% of people living with Parkinson’s in Northern Ireland “said they’d had negative experiences as a result of people not understanding their symptoms including being laughed at, accusations people assuming they are drunk or unfriendly due to movement problems caused by their Parkinson’s, and even being disbelieved when they’ve revealed their diagnosis”.
The survey found
- 56% said people don’t believe they have Parkinson’s
- 22% said their less expressive facial expressions - an effect of the condition - had been misinterpreted as being unfriendly
- 17% said imbalance or slurred speech had been misinterpreted as drunkenness
- 26% had been told they were ‘too young’ to have Parkinson’s
- 51% had been told that they ‘don’t look ill’
- 27% felt or been judged for using a disabled parking space or toilet
Ricky Darling, 63, from Newtownabbey , was diagnosed with Parkinson’s aged 54. He said: “People do look at you and think you’re drunk. I have to explain I’m not drunk, in fact I haven’t had a drink since 2007; it’s just what my Parkinson’s does to me.”
Patrick Crossan, 55, from Belfast was diagnosed with Parkinson’s aged 50. He said: “People still think I am too young to have the condition. They see it as an ‘older person’s disease’ and often just do not believe it can affect someone so young. Yet I am far from the only one.
“People don’t mean any harm, but when I tell them how it affects me they sometimes suggest I’m imagining it. This is partly because I don’t let it stop me doing what I want to do. But it has made some things, such as regular travel, more difficult, and some days are more difficult than others.”
Nicola Moore, Parkinson’s UK Northern Ireland Director, said everyone has “a role to play in developing understanding and positive public attitudes towards people affected by Parkinson’s”.
She added: “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.
“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.”
Find out more at: www.parkinsons.org.uk/parkinsons-is .
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