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New campaign launches to tackle misconceptions around Parkinson's

This news post is 8 months old
 

Vital funding needed more than ever

Parkinson’s UK is calling on people to continue to fund vital research after a survey revealed misconceptions around what current treatments can do for 145,000 people living with Parkinson’s in the UK.

New figures released today (29 November) show that more than half of adults in Scotland (60%) incorrectly think there are Parkinson’s treatments available which can halt or slow the progression of the condition.

The reality is that there is currently no cure for the condition and current treatments only mask the symptoms. 

Parkinson’s UK, Europe’s largest charitable funder of Parkinson’s research, is appealing for the public to support it’s ‘Time for Can’ campaign, which shows the reality of living with Parkinson's and the researchers working towards better treatments and a cure - driven by people’s needs and powered by supporters. The campaign is focused on increasing the public’s understanding of Parkinson’s while highlighting the urgent need for donations.

Dr Beckie Port, Research Communications Manager at Parkinson’s UK, said: “Parkinson’s is the fastest growing neurological condition in the world and at the moment, there is no way to stop, slow or reverse it. Yet this survey shows that in Scotland there is a public misconception that we already have the treatments needed to stop the condition in its tracks. 

“This is really worrying and could hold back progress towards finding a cure. In fact, as Parkinson’s progresses, higher medication doses are needed to manage its symptoms. This in turn increases side effects, which can be incredibly distressing. For some, medications may successfully manage symptoms for five years or more, but for other people, progression may be much faster. 

“Every hour, two more people in the UK find out they have Parkinson’s. Anyone can get it, young or old and it is a serious condition. That’s why we need to drive forward promising research. People with Parkinson’s urgently need better treatments and a cure now, but this can only happen with the support of the public in Scotland. With everyone's help, we can discover new treatments and find new therapies to improve the lives of people with Parkinson’s.” 

The UK-wide survey of 2,000 adults also found that just under three-quarters (63 per cent) of adults in Scotland are unaware of how many symptoms exist for Parkinson’s.2

With more than 40 potential symptoms such as lack of sleep, anxiety and stiffness, everyone’s experience of Parkinson’s is different. These symptoms are always there and can impact everyday tasks, leading to ‘can’ts.’ It can have an impact on tasks, such as tying shoelaces, buttering bread to playing with your kids. People may find themselves unable to keep their job, drive and leave their house. The longer a person has Parkinson’s, the harder it gets, which is why better treatments are needed now. 

Marc Van Grieken, 64, chairperson of our Dundee Research Interest Group, lives with Parkinson's and has problems sleeping with his Parkinson’s. 

Marc, from Perth, says: “At the moment, there isn’t much that I can’t do or have a go at doing which is lucky.

“There are certainly things that are much more difficult but I still drive and still water-ski and live a very active lifestyle.

“But I suppose the thing that affects me is staying up really late and having very long days.

“We need to raise a lot more awareness that Parkinson’s is much more common than people think. In my experience, everybody I talk to knows someone with Parkinson’s. If you raise the fact that you, yourself, have Parkinson’s they will say ‘oh my friend or my neighbour has Parkinson’s.

“So everybody knows someone with Parkinson’s. It’s still very hidden because it’s still associated with elderly people or retired people but it’s becoming increasingly prevalent in people under 50.

“So I would say awareness is the key thing and people with Parkinson’s themselves being more open and direct about it. A lot of people with the condition tend to withdraw and feel embarrassed and it makes it more difficult to engage and make others aware.

“I find being really upfront about it is better than not as people are much more sympathetic than you expect and much more helpful.”

 

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