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New research highlights alarming lack of awareness and understanding of Parkinson’s

Parkinality columnist Julie Walker, of Bishop’s Stortford, writes not about parking, but about living with Parkinson’s disease in her 50s

It is ironic that my voice starts to weaken when I am asked to be a spokesperson for Cure Parkinson's new campaign. But apparently I won't be requiring a megaphone. I can simply chillax and allow the charity’s words to do the talking...

New research published by Cure Parkinson’s reveals an alarming lack of knowledge about the world’s fastest-growing neurological condition.

The World Health Organisation (WHO) recently stated that disability and death due to Parkinson’s were increasing faster than for any other neurological disorder.

Titled “Change the Future: Preventing a Parkinson’s Pandemic”, the report’s findings include the statistics that one in three UK adults know someone with Parkinson’s and that for every person diagnosed with the disease, over 100 people are in some way touched by it.

But less than a fifth (17%) are aware of the impending pandemic, highlighted by many academics and the WHO, most adults (51%) believe Alzheimer’s is the fastest-growing neurological condition and only two of more than 40 symptoms of Parkinson’s are widely recognised by the British public – shaking (69%) and problems with balance (52%).

This leaves a massive void in knowledge and could mean vital signs are being missed by friends and loved ones of those developing the condition.

According to the report, only 8% of people in the East of England region know that Parkinson’s is that fastest-growing neurological condition in the world.

Julie Walker, who was diagnosed in 2012 at the age of 44, says 'never judge a book by its cover' – Parkinson's is not just a tremor.

Many Parkinson's symptoms are invisible and affect areas which most people take for granted, such as communication. Julie's writing has become almost indecipherable and her voice has become weak and whispery.

Cure Parkinson's commissioned a research survey and report entitled 'Change the Future: Preventing a Parkinson's Pandemic'
Cure Parkinson's commissioned a research survey and report entitled 'Change the Future: Preventing a Parkinson's Pandemic'

The report identified a widespread belief that the majority of people with Parkinson’s experience tremor or shaking. While this symptom is fairly common, it is not necessarily an early warning symptom.

The research showed that the majority of symptoms remain hidden and public perception of what the condition means to those living with it is very different from the reality:

74% of people were not aware that depression, anxiety and pain can be potential signs or symptoms of Parkinson’s;

83% were unaware sense of smell can be lost, a symptom which can appear years before others develop;

Two-thirds (66%) were not aware that freezing or the temporary inability to move can be a symptom; and

87% had no idea that a reduction in handwriting size could be a sign of the condition.

Survey results also showed that 45% of UK adults believe the Government should be doing more to fund the search for a cure.

Cure Parkinson’s is calling for urgent action including the immediate allocation of £90m from central government to find a cure, more information and awareness to get more people joining trials and an urgent recruitment drive to get more scientists working on finding a cure.

If the search for a cure isn’t accelerated, says the charity, the impact on the NHS and economy could be crippling.

The current cost of healthcare for the estimated 145,000 people living with Parkinson’s in the UK is more than £728m a year, rising to a total economic impact of £3.6bn. If the current projections are correct – of people with Parkinson’s more than doubling by 2040 – this figure will double to over £7.2 billion.

Will Cook, CEO of Cure Parkinson’s, said: “It’s important that we invest in Parkinson’s now.

“This charity and our co-funders are leading a global charge to find a cure. We have directly funded or helped facilitate funding for over £100m of clinical trials to date. But this is not enough: now it is not science but funding availability that defines urgent progress.

“Our research should be a wake-up call to everyone that a pandemic is coming and the only way to truly avert it is to find a cure.”

About the survey

The findings in this study are based on quantitative data collected from 2,000 adults across the UK. OnePoll, a survey-led market research company, managed the research in collaboration with Cure Parkinson’s. The survey was fielded between February 8 and 14 this year.

About Cure Parkinson’s

Cure Parkinson’s is working with urgency to find new treatments to slow, stop and reverse Parkinson’s. Its funding and innovation have redefined the field of Parkinson’s research, enabling the world’s leading researchers to prioritise the next generation of drugs for clinical trial. Further information at cureparkinsons.org.uk.

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