Our daily battle with harassment and prejudice, by NI Parkinson’s sufferers
Nearly one in five people with Parkinson's disease in Northern Ireland has faced accusations of being drunk because of their symptoms, a new survey has found.
More than 90% also said they felt harassed and discriminated against.
The report details the lack of public awareness around the disease and its symptoms, even though it is the second most prevalent neurodegenerative condition after Alzheimer's.
The findings have been released by Parkinson's UK Northern Ireland to coincide with World Parkinson's Day today.
The report found:
- 91% of people living with Parkinson's disease in Northern Ireland had encountered negative experiences as a result of people not understanding their symptoms.
- 56% said that 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 that their imbalance or slurred speech had been misinterpreted as drunkenness.
- 51% had been told that they "don't look ill".
- And 27% have felt or been judged for using a disabled parking space or toilet.
Parkinson's UK said the findings highlight the huge toll that public reactions can have on those living with the condition.
It said 57% of those surveyed had cancelled or avoided social situations due to the negative impact of public perceptions.
Today the charity is launching Parkinson's Is, a campaign to show the reality of life with the condition.
More than 3,700 people here have Parkinson's, figures show.
More than 470 will be diagnosed with Parkinson's this year, which is around nine every week.
Most people who get Parkinson's are aged 50 or over, but younger people can get it too.
Older age at diagnosis is associated with worse outcomes.
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."
David Blake (70) from Belfast was diagnosed with Parkinson's aged 65.
He 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."
Paul McShane (51) from Belfast was diagnosed at 40.
He said: "People think Parkinson's is an old person's condition so they don't believe you can have it so young. They can think you're drunk.
"The other thing is that sometimes kids will be kids and they do laugh at you."
Nicola Moore, Parkinson's UK Northern Ireland director, said too many people don't fully understand what it is or how it affects people.
She added: "The public doesn't think that Parkinson's is a serious condition. And people with Parkinson's have told us 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."