THE BLOG

Hostility and Rudeness Blight Lives of 69,000 With Parkinson's

19/04/2015 20:17 BST | Updated 19/06/2015 10:59 BST

Richard, 33, has been living with Parkinson's since he was 26. When he was first diagnosed, he had trouble walking and couldn't control his arms and legs which made him extremely self-conscious when out in public. He was at a petrol station trying to pay, he fumbled with his card and was told off for being slow. Again, soon after his diagnosis he went out for a meal with his wife and on leaving the restaurant, two men pointed and laughed at him. His wife Karen told the men that Richard had Parkinson's, they apologised but the damage to Richard was already done.

This is just one example of how negative reactions from the public can impact on people living with Parkinson's but Richard is certainly not alone.

New research launched by Parkinson's UK for Parkinson's Awareness Week shows that an estimated 69,000 people in the UK with Parkinson's have experienced hostility and rudeness from members of the public. People with Parkinson's have told us they've been stared at, had their symptoms mistaken for drunkenness, and even been laughed at in public because of their symptoms.

In itself, this is very worrying but what causes even greater concern is the effect this has on people. People with Parkinson's used the words inferior, intimidated and invisible to describe how they felt when they came up against these negative reactions.

And shockingly, almost one in five who had experienced discrimination and negative reactions would rather skip a meal and go hungry than venture out to the shops, and 15% admitted they feel trapped inside their homes because of these reactions.

As well as the physical symptoms, Parkinson's can result in anxiety, depression and insomnia. Therefore the last thing people living with Parkinson's need is to feel like they're in the spotlight when they step out of their front door.

For Richard, his experiences had the potential to be devastating, especially as he was coming to terms with a life-changing diagnosis at the same time. Richard's wife Karen told us that Richard wishes the public were more understanding and not judgemental when he's slurring his speech and shuffling around. It's not because he's drunk.

This lack of understanding is something we hear about more and more and that's why for this year's Parkinson's Awareness Week, Parkinson's UK is asking the public to think before they judge.

We don't expect people to be experts in knowing whether or not the person taking a little longer at the till, or looking unsteady on their feet is living with Parkinson's. But by deciding to be a bit more patient, it could really make the difference to someone living with a long-term health condition.

During the week, we are challenging people to 'up your friendly', by pledging to do small acts of kindness. Holding a door open or giving up a seat on public transport can make a small difference for some people but for the 127,000 people like Richard who are living with the effects of Parkinson's on a daily basis, these small actions can make a huge difference.

Parkinson's Awareness Week runs from 20-26 April. To find out how to get involved, visit www.upyourfriendly.com