A GENERATION of people with Parkinson’s in the South East 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 drugs ‘falling behind’.
So warns the charity Parkinson’s UK as it launches an urgent appeal to raise desperately needed funds to revolutionise 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 more than 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 everyday tasks impossible.
Research released by the charity reveals that despite being an incurable, degenerative condition which can affect anyone, in the South East:
• Nearly half (48 per cent) of people are unsure, or wrongly say that it is possible to prevent Parkinson’s;
• More than four in five (84 per cent) are unsure, or incorrectly think that there is no limit to the amount of time Parkinson’s medication works for; and
• Nearly two in three (64 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 estimated 5,600 living with the condition in the South East.
Alison Ottaway, 50, lives in Guildford, Surrey. She has one son. Alison was diagnosed with Parkinson’s in 2006, the day before her 40th birthday.
“I take 15 tablets a day,” she said. “Sometimes they work like clockwork but I have had times when the medication stops working halfway between doses. That’s the thing with Parkinson’s, it varies day to day and people don’t understand that.
“I experience stiffness, sometimes I can walk fine but other times I’ll be crawling along the floor. Even simple things like holding a shopping bag can be impossible when the tablets are not working as effectively. When I’m having a good day people don’t realise that the medication is masking a terrible condition and, unfortunately, it can come for anyone.
“If there was the chance to reverse the progression of Parkinson’s it would give me a second chance to live my life how I wanted to. I could almost turn back the clock and make up for the lost time in those 10 years when I was pushing people away and not being myself. I wouldn’t have to think twice about how I live my life.”
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 the South East associating Parkinson’s with bladder or bowel problems (21%), anxiety (39%), and sleep problems (31%).
Steve Ford, chief executive at Parkinson’s UK, said: “In the past 200 years we have made many strides forward, but people with Parkinson’s are still waiting for a treatment that can tackle the condition head on.
“Parkinson’s can leave people struggling to walk, talk and sleep. Today, we say we won’t wait any longer.
“That’s why 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. That’s why we’re urgently asking people to donate, in our first ever public fundraising campaign, whatever they can to support our vital work.
“We won’t tolerate Parkinson’s treatments falling behind.”
To find out more about Parkinson’s UK’s We Won’t Wait campaign, visit the charity’s website at parkinsons.org.uk.