A generation of people with Parkinson’s in the East Midlands 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 support to revolutionise Parkinson’s research on the 200th year1 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 the East Midlands:
· Nearly half (46%) 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 (65%) 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 9,000 living with the condition in the East Midlands.
Janet Ankers, 66, from Hinckley in Leicestershire, was diagnosed in 2003.
“I think I was having symptoms of what turned out to be Parkinson’s as far back as September 2001. My right arm just felt weird, like it didn’t belong to me, my shoulder also hurt, and I was walking with a limp.
“It took me around 18 months to go to my GP though – I just kept putting it off”.
“To begin with I managed to go without medication, and then I was put on levodopa. It helped me to regain the ability to type, and live life as normally as possible, the dose increased over 10 years and eventually I was taking 750 mls a day. I was experiencing serious problems, having too many ‘off’ periods when the medication would wear off too quickly and it would sometimes take hours before the next dose began to work.
“In December 2014 I was offered Deep Brain Stimulation surgery, which has made a huge difference. There has been a big improvement since I had the surgery, and the medication has been reduced considerably.
“It would be heaven to have new and better treatments, and I will never give up hope that this will happen one day. In the meantime, I try to be as positive as I can about life, and live with the frustration that there is currently no cure”.
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 East Midlands associating Parkinson’s with:
· bladder or bowel problems (20%)
· anxiety (41%)
· sleep problems including insomnia and nightmares (29%)
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