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#UniteForParkinsons as condition remains 'massively underestimated'

11-Apr-18
Article By: Melissa McAlees

One in 10 people with Parkinson's disease have been laughed at because of the condition, and more than a quarter have had symptoms mistaken for drunkenness, a leading charity has found.

Credit: Daisy Daisy/Shutterstock.com

A lack of public awareness is even stopping people with the neurological condition from leaving their home due to embarrassment, according to Parkinson's UK.

As the charity marked World Parkinson's Day, it revealed three quarters of people have no idea of the many ways the condition affects individuals.

While most people are aware of symptoms such as tremor, the majority do not realise it can also cause anxiety, hallucinations and even freezing - a symptom that can come on without warning and results in a person losing the ability to move.

Heidi Reynolds, aged 41, from Cornwall, was diagnosed with Parkinson’s in 2014. She said: “I am frequently told that I don’t look like I have Parkinson’s because people don’t realise how many symptoms people with Parkinson’s have that aren’t as visible.

“My brain has stopped sending signals to my body that I’m hungry or thirsty, or that I need the toilet. I have problems swallowing which means I have to thicken my drinks and there are certain foods I can’t swallow. Some restaurants have been really understanding but others don’t recognise it as part of a disability so have been really unhelpful.”

She added: “But one of the hardest things I’m dealing with at the moment is cognitive issues. I have a daily sheet of tasks and signs around the house to keep me focused.

“It’s so important to speak out about hidden symptoms so the public can be more understanding. I always tell people that we need time, our bodies aren’t processing things as fast so please be patient, we aren’t being slow on purpose.”

Whilst the condition causes physical symptoms, it is the often-hidden symptoms that people with Parkinson’s say are the most easily misunderstood by the wider public and can lead to stigma and isolation.

Many people lose their senses of smell and taste. Some experience severe swallowing difficulties, making eating and drinking a struggle. Others experience depression and anxiety.

In an effort to raise awareness of the condition, which affects 145,000 people in the UK and is projected to rise by a fifth by 2025, Parkinson's UK has launched its #UniteForParkinsons campaign.

The campaign is giving a voice and platform to the Parkinson’s community by featuring their experiences in a world-wide campaign video and encouraging others to do the same.

The charity has also launched a petition calling for businesses to sign up to workplace training to ensure staff are familiar with the symptoms of Parkinson's.

Steve Ford, chief executive at Parkinson’s UK, said: “Parkinson’s is an unlucky dip with such a broad range of symptoms that impact on every area of a person’s daily life, and each person is affected differently.

“Depression, anxiety, difficulty sleeping, eating and swallowing along with constipation are commonplace and can make daily life a struggle. Often people with Parkinson’s will feel they have got a handle on how Parkinson’s affects them then a new symptom will emerge.

“The lack of understanding of the range of symptoms can make simply stepping out of the door feel terrifying for people with Parkinson’s, both because of how unpredictable the condition is and the added fear of public humiliation or embarrassment.”

For more information visit uniteforparkinsons.org.

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