A GENERATION of people with Parkinson’s in North Ayrshire face an uncertain future knowing that their condition will never improve.
That’s unless urgent action is taken to take advantage of research developments that could lead to better treatments and stopping Parkinson’s drugs ‘falling behind’.
This stark warning comes from Parkinson’s UK, as the charity marks Parkinson’s Awareness Week by launching its first public appeal to raise desperately needed funds to revolutionise Parkinson’s research on the 200th anniversary of the condition first being recognised.
The main drug people with Parkinson’s rely on – levodopa – hasn’t changed since the 1960s.
The demand for action comes as the charity reveals a widespread lack of awareness of the challenges people with Parkinson’s face in trying to manage their condition. The absence of effective medication means there is nothing to stop its progression and the worsening of symptoms that can make many every-day tasks impossible.
Parkinson’s is an incurable, degenerative condition which can affect anyone but despite that research released by the charity today reveals that:
Almost half (48 per cent) of people are unsure, or wrongly say that it is possible to prevent Parkinson’s.
Four in five (83 per cent) are unsure, or incorrectly think that there is no limit to the amount of time Parkinson’s medication works for.
Two in three (65 per cent) wrongly believe that Parkinson’s medication does more than mask or ease the symptoms of the condition.
Parkinson’s UK’s ‘We Won’t Wait’ fundraising campaign will raise essential funds that will drive forward crucial developments in Parkinson’s research to pioneer more effective treatments that are desperately needed for the 11,000 people in Scotland currently living with the condition.
Diane Mitchell from Irvine was diagnosed with Parkinson’s in 2011 at the age of 46. Diane works and has been done a parachute jump and other activities to raise funds for Parkinson’s UK. She is also actively involved in starting up a support group for younger persons with Parkinson’s.
Diane says: “My Parkinson’s means that my mobility is sometimes a bit restricted and that I can only use one arm at times. I still work and in my spare time I like doing craftwork and walking the dog – simple things that we take for granted. But if we don’t get something sorted in terms of treatments then I’ll soon be done with that and my life as it is now will be over.
“I know that my symptoms are getting worse and I’d love there to be something that could stop the deterioration. Reversing that progression would be a dream. I’m willing to try anything and get involved in as many trials as I can.”
Jane Stevely is from Kilwinning was diagnosed with Parkinson’s in 2004 at the age of 48. Jane is a mother, grandmother and great grandmother and worked up until last year.
Jane says: “My Parkinson’s means that I struggle with fiddly things and I sometimes shuffle a bit when getting around. I feel dependent on taking medication on time – even half an hour late in my timing I notice the difference so I can’t do without them. I do get fed up taking pills but I know I have to.
“I just want something to work and make me feel stronger and steadier. That’s why more research and new treatments are important – I’m keen to continue to take part in clinical trials and there really needs to be more of them.”
Alan Munro from Irvine was diagnosed with Parkinson’s in 2015 at the age of 71. His Parkinson’s was discovered while he was having a hip replaced. Alan is a long serving councillor on North Ayrshire Council and previously had his own medium-sized electrical engineering and electrician business.
Alan says: “I don’t have a tremor so my Parkinson’s is fairly invisible to others. The biggest effects are a lack of concentration and my peripheral vision is poor without my medication.
“The medication had made a big difference for me although I’ve already had to change it and increase the dose. Prevention is better than cure and I really want the research to discover a simple test that identifies the Parkinson’s gene and then find a way to fix that gene. There have been so many advances in other areas – let’s just get on with it!”
Katherine Crawford, Scotland Director of Parkinson’s UK said: “We’re urgently asking people to donate whatever they can to support our vital research. We won’t stand by and let Parkinson’s treatments fall further behind.”