‘They don’t want to feel stigmatised’: One in three Manchester Parkinson’s victims hide their symptoms

Over one third of people with Parkinson’s in the North West feel the need to hide their symptoms, according to new research.

The statistics have been released as part of Parkinson’s Awareness Week which runs until April 24.

Of those surveyed in the North West, 37% experienced negative emotions in the year following their diagnosis.

“I think it’s quite a sad statistic really,” said Sue Newsham, Volunteer Coordinator at Parkinson’s UK.

“Some of the things that people are coming back and reporting are that they may not be able to accept their condition.

“There’s a concern about how they are perceived when they get their diagnosis.

“They don’t want to feel stigmatised or look weak or to be judged by other people, so they didn’t feel there symptoms were socially acceptable.

The charity hopes to highlight problems that sufferers of Parkinson’s face by running events across Manchester and the rest of the UK.

“We want to help the public know a little bit more about Parkinson’s and what to do when they come across someone with Parkinson’s,” Sue told MM.

The charity is concerned by the findings, which reveal a worrying level of emotional repercussions for people diagnosed with Parkinson’s.

“I think the public perception, sometimes people might stare or make assumptions if someone is unsteady on their feet, or freezes, or staggers or falls.

“There’s a concern that other people might just think something like they’re drunk, and I think it’s that lack of perception and awareness about the actual condition.

“It needs to be nationally recognised, it’s a difficult condition that affects people across the country, that’s why Parkinson’s UK is there to try and help these people.”

This has been one of the aims of Parkinson’s Awareness Week this past seven days, to help raise public knowledge of these problems, and what people can do to help.

“With it being concentrated in one week, that’s not to say awareness stopped, but within one week we become more noticed,” said Sue.

“We get more news coverage, social media has been going crazy with it all, with lots of events featuring on Twitter and Facebook.

“I think it does reach out, it helps the general public just to stop and think about the condition, and it certainly reaches out to a much wider audience.”

Sue has seen the countless benefits of the week first hand, helping host numerous events throughout Manchester and the North West.

“We had a really, really good day in Manchester on Monday at the Virgin Money Lounge, we had lots of volunteers over who have had or have been affected by Parkinson’s,” she said.

“They were on hand to talk to anyone, people came in who wanted to learn information about the condition.

“We had a number of people drop by who are affiliated with the charity in some way, some of our past fundraisers came that have helped raised thousands.

“Throughout the week we’ve had a number of events throughout Manchester and Lancaster and they’ve been great.”

On a more positive note, 47% of people who have shared their diagnosis with their immediate family in the North West reported feeling ‘able to accept they had Parkinson’s’.

Sue believes that this is one of the great strengths of the charity, the support they can offer to people telling their loved ones.

“People with Parkinson’s tell us once they have actually shared their diagnosis they feel so much more relieved and more able to accept they have the condition,” she said.

“Parkinson’s UK gives information and advice to people about the disease right across the UK, we have local advisors and support groups.

“There’s also a wealth of information on the website.

“We have a help line, and sometimes that’s the first step for someone to talk to somebody about their condition, which helps them get a sense of it in their own mind.

“That then helps them to share that information with family or colleagues.”   

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Image courtesy of Chalmers Butterfield, with thanks

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