PARKINSON’S UK is calling for people to continue to fund vital research breakthroughs after a survey revealed massive misconceptions around what current treatments can do for 145,000 people living with Parkinson’s in the UK.
New figures released this week show that more than half of UK adults (57 per cent) 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 its ‘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 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. With everyone’s help, we can discover new treatments and find new therapies to improve the lives of people with Parkinson’s.”
“Better treatments can’t wait”
The UK-wide survey of 2,000 adults also found that nearly two-thirds (65 per cent) are unaware of how many symptoms exist for Parkinson’s.
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 houses. The longer a person has Parkinson’s, the harder it gets, which is why better treatments are needed now.
Karen Missenden, 55, from Lincolnshire was diagnosed with Parkinson’s when she was 47. Three years into her diagnosis, Karen was already taking 21 tablets every day to manage her symptoms.
After having deep brain stimulation surgery (DBS), Karen knows what a difference new treatments can make. DBS is an invasive and expensive procedure that can be offered to people whose symptoms are no longer controlled well by the best available medication for their condition. It doesn’t work for everyone, but for Karen, it has been life-changing.
She no longer relies on medication to manage her condition but her Parkinson’s symptoms haven’t stopped progressing. She needs new and better treatments and she can’t wait because she experiences dystonia – a movement disorder where incorrect brain signals cause her muscles to contract and spasm so severely that some days she can’t walk. It could leave her wheelchair-bound. To highlight this, Karen features in a 30 second TV advert for the campaign, which shows how she can’t move.
Karen says: “It starts in my feet and works up my leg, into my shoulders and into my head. My attacks can sometimes be so bad that they’ll set off my tremor. Then I’m trying to give myself an injection to treat dystonia and I can’t do it. My life is ruled around the next dystonia attack. This condition can take over your whole body. I don’t want that to happen. Unless researchers can come up with better treatments, my choices will become fewer and fewer.”
To find out more and donate now to find a cure for Parkinson’s, visit https://www.parkinsons.org.uk/