Research reveals alarming level of fear among Parkinson's disease sufferers in Yorkshire

Steve Ford, chief executive at Parkinson's UK

April 18, 2016

A STUDY by Parkinson’s UK has revealed that 40 per cent of people suffering from the condition in Yorkshire and the Humber have felt the need to hide their symptoms or lie about having the condition.

The research has revealed an alarming level of fear around sharing a diagnosis of Parkinson’s, cutting people off from vital support available at a time when many report struggling emotionally to come to terms with their condition.

A total of 1,868 Parkinson’s sufferers across the UK were questioned for the survey earlier this year. The charity has released results today to mark the start of Parkinson’s Awareness Week.

There are 127,000 people in the UK living with Parkinson’s, a progressive brain disease that causes uncontrollable tremors, slow movement, and impaired speech.

Parkinson’s UK estimates that 42,000 affected people in the UK have delayed sharing their diagnosis with someone close to them.

A total of 39 per cent of those surveyed in the Yorkshire and Humber region experienced negative emotions in the year following their diagnosis, with the news having the hardest emotional impact on younger people with Parkinson’s.

According to 18 per cent of this group it was as if “the world had ended”.

Nicola Macer, 51, a special educational needs teaching assistant from Wetherby, 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.”

A total of 54 per cent of people surveyed who have shared their diagnosis with their immediate family in the Yorkshire and Humber region reported feeling ‘able to accept they had Parkinson’s’, while 26 per cent reported feeling relieved and 16 per cent said they felt glad they didn’t have to hide their symptoms anymore. 

Steve Ford, chief executive at Parkinson’s UK, said; “No-one should feel alone in dealing with a diagnosis of Parkinson’s. Too many people are struggling with their diagnosis alone because of fear of what people might think, say or do.

“It’s worrying that many people with Parkinson’s, 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 each and every person with Parkinson’s is aware of the support available so they can feel equipped to have these difficult conversations. 

“We know that the right support, whether through family, friends or Parkinson’s UK, is vital for those with the condition, to help them come to terms with their diagnosis and know that they’re not alone. 

“We are here to help people find the support they need, when they need it.”

Read more: http://www.yorkshirepost.co.uk/news/health/research-reveals-alarming-level-of-fear-among-parkinson-s-disease-sufferers-in-yorkshire-1-7858179#ixzz46FDHAClc

http://www.yorkshirepost.co.uk/news/health/research-reveals-alarming-level-of-fear-among-parkinson-s-disease-sufferers-in-yorkshire-1-7858179