OVER a third of people with Parkinson’s in Yorkshire have hidden their symptoms or lied about having the condition, a survey has found.
The findings released today by Parkinson’s UK also showed sufferers hid their symptoms because they didn’t want people to feel awkward or embarrassed around them, feel they would be judged, or thinking the symptoms were not socially acceptable.
The charity says the research, revealed at the start of Parkinson’s Awareness Week, shows the fear around diagnosis of Parkinson’s, cuts people off from vital support when many are struggling to come to terms with their condition.
Nicola Macer, from Wetherby, kept her diagnosis a secret from all but those closest to her for eight years.
The 51-year-old special educational needs teaching assistant said: “My world fell apart when I was diagnosed with Parkinson’s. It was a complete shock as I didn’t know what it was.
“Apart from my husband and a handful of close friends, I kept my diagnosis to myself for eight years.
“I didn’t want to spoil things for my family by having them worry, and was embarrassed about telling people. I didn’t want to be labelled and just wanted life to go on as normal, like before my diagnosis.
“Since ‘coming out’ and sharing my difficult journey, I feel a real sense of relief. Parkinson’s UK and my Parkinson’s nurse have also been fantastic in supporting me to help better understand my condition and share it with others.”
There are 127,000 people with Parkinson’s with the UK with an estimated 11,000 affected in Yorkshire.
The survey also showed that almost 40 per cent of those surveyed in Yorkshire experienced negative emotions in the year following their diagnosis and many said they “felt their world had ended”.
Steve Ford, chief executive at Parkinson’s UK, said: “No-one should feel alone in dealing with a diagnosis of Parkinson’s. It’s worrying that many people, for a wide range of reasons, are not able to access the help they need, and it’s having a devastating impact on their emotional health. We are determined that every person is aware of the support available so they can feel equipped to have these difficult conversations.”