Figures released on World Parkinson's Day reveal astonishing levels of harassment and discrimination faced by people with Parkinson's.
87% of people with Parkinson's have faced harassment and discrimination and over half are avoiding or cancelling social situations due to negative experiences. That figure rises to 99% amongst people aged 40-50, highlighting the additional challenge of being diagnosed with Parkinson’s when you’re younger.
People with Parkinson's have been laughed at, accused of being drunk or unfriendly because of the movement problems caused by their Parkinson's, and even disbelieved when they've revealed their diagnosis.
The findings from Parkinson's UK also highlight the huge toll that public reactions have on those living with the condition everyday - with 57% cancelling or avoiding social situations due to embarrassment about their Parkinson's symptoms, or fears about how people will react to them.
Parkinson's UK supporter Michelle Harvey, 47, from Warrington in Cheshire was diagnosed with Parkinson's aged 43. She said:
"Because my Parkinson's symptoms are so severe I’m facing brain surgery this month. I'm scared, but the neurosurgeon is positive that it could improve my quality of life for ten years or more.
"Yet people still 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.
"Parkinson's is a confusing condition for people – I take medication every 2 hours and when it’s working it's almost impossible to tell I have Parkinson's – it masks its outward symptoms.
"I just want people to think about how they respond when somebody tells them they have it, because living with this disease is challenging enough."
Steve Ford, Parkinson’s UK Chief Executive, said:
"At the root of this huge problem is that even though it's the second most prevalent neurodegenerative condition after Alzheimer’s, people don’t fully understand what Parkinson's is or how it affects people.
"It's heart-breaking that so many are cancelling or avoiding social situations due to embarrassment about their Parkinson's symptoms, or fears about how people will react to them.
"We hope our new Parkinson's Is campaign, which sees people across the UK share how the condition affects them, will help fight negative attitudes and correct misconceptions about this much misunderstood condition."
Parkinson's UK has today launched its Parkinson's Is campaign, which highlights how the condition is far more than just a tremor. Find out more at: parkinsons.org.uk/parkinsons-is