Complexity of Parkinson’s ‘massively underestimated’ in the UK

New research has revealed a staggering lack of awareness of how complex Parkinson’s is, and a leading charity warns this is having a devastating impact on people with the condition.

In a survey to mark World Parkinson’s Day (Wednesday 11 April), Parkinson’s UK has discovered that 78 per cent¹ of the public massively underestimate how many symptoms of Parkinson’s there are.

Although most people are aware of visible symptoms like tremor, Parkinson’s can also come with more than 40 less well-known symptoms such as sleep issues, anxiety and hallucinations. 

Shockingly, more than a third (37 per cent) thought there were fewer than ten symptoms of Parkinson’s and more than four in ten (41 per cent) thought there were fewer than 30.

The charity is warning that this lack of awareness means that people with Parkinson’s often feel they need to hide their symptoms in public, or don’t want to go out at all due to being incorrectly judged or mocked. Previous findings from the charity have uncovered:

• A quarter (25 per cent) have had symptoms mistaken for drunkenness
• 11 per cent have been laughed at because of their symptoms
• More than a third (34 per cent) feel they would be judged if they were out in public
• Almost a third (32 per cent) don’t feel like their symptoms are socially acceptable

The charity’s findings also revealed that the main symptom of Parkinson’s is thought to be a tremor (64 per cent), followed by slowness of movement (14 per cent) and muscle stiffness (13 percent).

These symptoms are merely the tip of the iceberg, it warns, and do not reflect what people with Parkinson’s most want addressing. In a recent project carried out by the charity to identify priorities to focus on for improving everyday life, tremor came 26^th on a list of what people with Parkinson’s want research to tackle.

Whilst physical symptoms can also include freezing – a terrifying symptom that can cause, without warning, a person to lose the ability to move, sometimes mid-step, 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.

The findings come as the charity is joining forces with the 10 million strong global Parkinson’s community on World Parkinson’s Day, to highlight what Parkinson’s truly is and raise much needed public awareness and understanding of the condition, which affects 145,000 people in the UK and is projected to rise by a fifth by 2025.

Heidi Reynolds, 41, from Cornwall, was diagnosed with Parkinson’s in 2014.

She says: “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.

“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.”

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.”

To help combat this lack of awareness, the #UniteForParkinsons 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 business to #UniteForParkinsons by signing up to workplace training. TFL, Gatwick Airport and EasyHotel have already pledged their support.

For more information, or to watch and share the campaign video, please visit uniteforparkinsons.org

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