Figures 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.
In a survey, launched to mark World Parkinson's Day (11 April), 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 from 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.
David Blake, 70, from Moira was diagnosed with Parkinson's aged 65:
"I have a very supportive family, but the main issue for me is the condition is not visible. A lot of people imagine it always involves shaking, but in fact I do not exhibit that. However, I do have the slowness and stiffness which are the other main symptoms, and they do have a significant effect in ways many people struggle to imagine or understand.
"It is the impact on basic things which is most pronounced for me. You can find yourself hurried in shops when you are struggling for change or to find a card. Most particularly in my case, as I often travel to the south of England, I find airport security can be a nightmare. I have to leave significantly more time than I used to and many people simply cannot grasp how difficult it is to take out coins, remove shoes and belt, or lift out laptops. Pressure to do this quickly in a queue only causes stress which makes things considerably worse.
"There are even other, subtle, difficulties which are difficult for others to see. People think I have become more withdrawn because it is harder for me to get my words out in conversation – so they assume I have nothing to say! Of course, I always have plenty to say – but sometimes the effort of saying it is too much so I do withdraw. Some may think it is a personality change, but it is much more subtle.
"The biggest thing for me is that my condition is mostly invisible. That does not mean it has no effect, and I want to help more people understand just what that effect is and how they can help those of us who live with the condition."
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. Find out more at: parkinsons.org.uk/parkinsons-is