A generation of people with Parkinson’s face a potentially uncertain future knowing that their condition will never improve, Parkinson's UK has warned.
The charity has said urgent action is required to unlock the promise of research developments that could pave the way to better treatments and stop Parkinson’s drugs ‘falling behind’.
As a result, the charity has launched an 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:
- Half (49%) of people are unsure, or wrongly say that it is possible to prevent Parkinson’s
- Four in five (83%) are unsure, or incorrectly think that there is no limit to the amount of time Parkinson’s medication works for
- Three in five (62%) 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 127,000 people currently living with the condition.
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. 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 ten 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 associating Parkinson’s with:
- bladder or bowel problems (20%)
- anxiety (38%)
- sleep problems, including insomnia and nightmares (32%)
Commenting on the launch of the charity’s campaign: 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 the We Won’t Wait campaign visit parkinsons.org.uk