A COUNTY Durham woman has spoken out about living with Parkinson’s because she wants people with the condition to be more visible in society.

Helen Tumilty, from Durham, has been diagnosed with Parkinson’s for 24 years.

Since 2005, her overall condition has worsened and two years ago she had a fall which curtailed her adventurous spirit.

She now takes 15 tablets a day and the side effects from taking her medication include neuropathy - which is nerve damage - and dyskinesia - or involuntary and erratic movements.

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She said: “I can’t get out on my own and I am now really reliant on my carers, who visit me twice a day. I need people to take me everywhere.

“Parkinson’s has affected every part of my life and it is a very much misunderstood condition.

“People think that you only get it with old age. It is a revelation when they find out about its non-motor symptoms and aspects, such as drooling and hallucinations.

“They just think it is being a bit shaky.

“It is not. It is so much more complex.

“What has made the difference to me is being able to use the condition and reach out to others. Communication and transparency are so important.

“There are people out there who don’t know anything about Parkinson’s.

“It is important for the Parkinson’s community to be seen.

“We are here and we are not going anywhere.”

Ms Tumilty spoke as the charity Parkinson’s UK called for people to continue to fund research breakthroughs, after a survey revealed massive misconceptions around what current treatments can do for the 145,000 people in the UK - 5,866 in the North East - living with Parkinson’s.

New figures released today show that more than half of adults in North East think treatment can halt or slow the progression of Parkinson’s - but in reality there is no cure and current treatments only mask the symptoms.

The charity’s new ‘Time for Can’ campaign 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.

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 the North East of England 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 the North East.

“With everyone's help, we can discover new treatments and find new therapies to improve the lives of people with Parkinson’s.”

To find out more and donate now to find a cure for Parkinson’s, visit parkinsons.org.uk/donate 

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