A generation of people with Parkinson’s in Wales will face an uncertain future knowing that their condition will never improve, unless urgent action is taken to unlock the promise of research developments that could pave the way to better treatments and stop Parkinson’s drugs ‘falling behind’.
So warns the charity Parkinson’s UK, as it launches an urgent appeal to raise desperately needed funds to revolutionise Parkinson’s research on the 200th year* of the condition first being recognised.
While some new drugs have been developed in this time, no current medication is able to slow down or stop the spread of the condition, leaving those affected with severely limited treatment options. The main drug people with Parkinson’s rely on –levodopa – hasn’t changed in over 50 years.
The call comes as the charity reveals a shocking unawareness of the challenges people with Parkinson’s face in trying to manage their condition, with a lack of effective medication meaning there is nothing to stop its progression and the worsening of symptoms that can make many every-day tasks impossible.
Research released by the charity reveals that despite being an incurable, degenerative condition which can affect anyone, in Wales:
- More than two in five (45%) of people are unsure, or wrongly say that it is possible to prevent Parkinson’s.
- Three quarters (77%) are unsure, or incorrectly think that there is no limit to the amount of time Parkinson’s medication works for.
- Three in five (60%) 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 estimated 8,000 living with the condition in Wales.
Gerri Smith, from near Newport is a professional actress who appeared in the first “Stars In Their Eyes “ programme as Vera Lynn and has been performing her tribute show all over the UK and Europe ever since, she was diagnosed with Parkinson’s nearly 2 years ago after being treated for essential tremor for 3 years.
“I was assured by my doctor that he did not think my tremor had anything to do with Parkinson’s so the diagnosis came as a bit of a shock. I knew very little about Parkinson’s before my diagnosis but I’ve been active in trying to discover as much about the illness as I can.”
“I’ve learnt that Parkinson’s is not a killer, it is a vicious thief gradually stealing your ability to do the things we take for granted. Walking, talking, dressing, turning etc. I’m already not as energetic as I used to be and walking can be difficult. I think I can do things as I always have but I can’t. The little things you take for granted, such as doing up buttons, become difficult.”
“I love entertaining and I worry I will lose the ability to keep performing but a positive attitude is important and I know that it is crucial to keep as active as possible. I was shocked to find that the medication prescribed to me was the same as that given to Michael J Fox over 30 years ago and that despite dedicated research there has been no big breakthrough in finding a cure and it makes me worry about the ‘what-ifs’, about what happens if the tablets no longer work, about what options there will be available for people like me.”
Parkinson’s affects almost every area of a person’s life with a range of physical and ‘hidden’ symptoms including tremor, pain, sleep and mental health problems. Worryingly, there is a lack of public understanding of the day to day reality of living with the condition, with only a minority of people in Wales associating Parkinson’s with:
- bladder or bowel problems (17%)
- anxiety (41%)
- sleep problems including insomnia and nightmares (31%)
Commenting on the launch of the charity’s campaign: Barbara Locke, Director for Wales at Parkinson’s UK said:
“People with Parkinson’s are still waiting for a treatment that can tackle this condition head on. Parkinson’s can leave people struggling to walk, talk and sleep. That’s why we say we won’t wait any longer.”
“Parkinson’s UK is spearheading, with the expertise of the research community and the support of those living with Parkinson’s, the step change needed to deliver better treatments and a cure faster.”
“But we can’t do this alone. This is our first ever public fundraising campaign, and we’re urgently asking people in Wales to donate whatever they can to support our vital work.”
To find out more about the We Won’t Wait campaign visit parkinsons.org.uk
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