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Parkinson's sufferers forced to keep quiet

Parkinson's sufferers forced to keep quiet

Published at 1:30pm 18th April 2016. (Updated at 5:15pm 18th April 2016)

Two fifths of people with Parkinson's in Yorkshire and the Humber say they have felt the need to hide their symptoms or lie about having the condition.

New research, released by the charity Parkinson's UK to mark the start of Parkinson's Awareness Week, has revealed an alarming level of fear around sharing a diagnosis.

Those who felt the need to hide their symptoms reported not wanting people to feel awkward or embarrassed around them, feeling they would be judged or not feeling like the symptoms were socially acceptable.

There are around 127,000 people living with Parkinson's in the UK and an estimated 11,000 affected in Yorkshire and the Humber, with someone being diagnosed every hour.

The charity estimates that 42,000 people have delayed sharing their diagnosis with someone close to them, because of not knowing how to bring it up, not wanting to accept their diagnosis, being unable to find the words and thinking they would be stigmatised or look weak.

Nearly 30% of sufferers in Yorkshire and the Humber who have told friends, family or colleagues about having Parkinson's felt that telling people they had the condition was like 'coming out'.

The charity says it's concerned by the findings, which reveal "a worrying level of emotional repercussions" for people diagnosed with Parkinson's.

Nearly 40% of those surveyed experienced negative emotions in the year following their diagnosis, with the news having the hardest emotional impact on younger people with Parkinson's.

Many people reported feeling like their world had ended, they were grieving or they didn't know who to turn to.

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."

People who have shared their diagnosis with their immediate family reported feeling able to accept they had Parkinson's, whilst over a quarter felt relieved and some say they felt glad they didn't have to hide their symptoms anymore.

Steve Ford, Chief Executive of 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."

You can get more information about local support groups at www.parkinsons.org.uk