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Parkinson's, What Do We Really Know?

Tuesday December 11, 2012

Steve Ford

Huffington Post.uk - This summer, Bob Hoskins became the latest member to join a small but select group of high profile figures - including Michael J Fox and Muhammad Ali - to be diagnosed with Parkinson's.

This shock revelation and the flurry of press activity that followed, helped to place the condition firmly in the spotlight.

Yet now that the celebrity gloss has faded, do we really understand more about Parkinson's?

If our latest round of research is anything to go by then it is clear that Parkinson's remains a mystery to most, with more than three quarters of Britons reporting that they have little or no knowledge of the condition.

Perhaps this is because Parkinson's isn't something that is particularly common? The truth is that Parkinson's is far from rare. One person every hour will be diagnosed with Parkinson's, and once diagnosed it is a condition that also has an impact on family and friends.

So, if Parkinson's is far from rare - why is it that it less well understood than other health conditions like heart disease, cancer or stroke? I suspect that the answer, like the condition itself, is far from simple.

Critics of charity awareness campaigns will ask if it really matters if the general public don't know too much about Parkinson's. It won't affect their chances of getting it after all. True. How much you know about Parkinson's won't make a jot of difference to whether you develop it or not.

Yet not all campaigns are about encouraging people to be vigilant against a health problem. As Chief Executive of Parkinson's UK, I come into contact with people with the condition on a daily basis, and hear first hand how many people struggle to get acceptance amongst the public at large of just how devastating and debilitating Parkinson's can be.

I've heard from people accused of being drunk, refused service in supermarkets, ignored by taxi drivers, and even arrested by police at the Olympics for not smiling (lack of facial expression can be one of the signs of the condition). This simply has to change.

Our challenge is clear - to expose the realities that those living with Parkinson's face on a daily basis so that these vulnerable people can get the understanding they deserve.

So what exactly is Parkinson's? The medical definition tells us that it develops when nerve cells in the brain start to die, causing problems with balance and movement. But this is only half the story.

The majority of people will just associate Parkinson's with a tremor or shake, yet the simple truth is Parkinson's is so much more, it is a life-shattering, incurable condition that affects almost every aspect of people's everyday lives.

Alongside the physical problems that can make the simplest of tasks - like making a cup of tea - so difficult, here are host of unseen symptoms. Speech problems, depression, anxiety, dementia, sleep deprivation, bowel and bladder disorders; the list is endless.

To combat these misconceptions, we are launching a new awareness drive to expose the realities of everyday life with Parkinson's.

Reworked images of six everyday tasks that can be incredibly difficult for those affected by Parkinson's, including making a cup of tea and putting on a pair of shoes will be appearing in advertisements around the UK, backed up by real life stories of those living with the condition.

Although we may not be able to change the world with an advert, to continue with this status quo, where Parkinson's is seen as no big deal, is plainly wrong.

All too often, Parkinson's and conditions like it, are pushed to the bottom of the government's 'to do' list. It is about time that Parkinson's is seen as a priority, not just for research funding, but also for health and social policy spend.

We hope that this new campaign will go some way help to dispel some of the lingering fallacies surrounding the condition once and for all so that people with Parkinson's gain the understanding they so desperately need.

If even one person takes the time to understand the truth behind the tremor - then we are one step closer to making life easier for people with Parkinson's.

If you spot the ads, I would love to hear what you think of them.

Steve Ford, Chief Executive, Parkinson's UK

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