Our recent survey has found that nearly three quarters (74%) of people on Parkinson's medication experience 'wearing off', when symptoms including pain, stiffness and tremors become worse between doses.
Medication can be a lifeline for people with Parkinson's, but current drug treatments don't last and only mask the symptoms.
Our recent UK-wide survey of more than 1,000 adults with Parkinson's found that nearly three quarters (74%) of people on Parkinson's medication experience 'wearing off'. This is when medication begins to lose its effect a few hours after taking a dose, and can't control symptoms. It gets worse the longer someone has had the condition.
The 'wearing off' phenomenon
During 'wearing off':
- 80% experience slowness of movement
- 71% have stiffness
- 51% have a worsened tremor
- 44% experience increased anxiety
- 41% experience pain.
Of the people who reported 'wearing off', 91% said it has a negative impact on their daily lives. When questioned further, 57% said it impacts on their ability to do their job or everyday tasks, and 54% said they go out of the house less.
And people with Parkinson's are losing an average of 2.5 hours a day because of 'wearing off'.
"My day is controlled by my medication"
55-year-old Hema Reilly lives in Loughborough, Leicestershire, and was diagnosed with Parkinson's in October 2016. She has found herself in frightening situations when her medication has worn off and says her life is negatively impacted everyday.
"When my medication is 'wearing off', I experience intense and aggressive tremors, rigidity, stiffness, fatigue and weakened muscle strength.
"I am losing more than 2 and a half hours everyday and can't do everyday tasks. I can only go out with my carer who supports me with household chores. I have had third-degree burns on my hand and wrist from emptying boiling water, because my medication wore off when I least expected it and my hand went into a spasm.
"My whole day is controlled by my Parkinson's medication and how my body reacts to it. I want my tablets to work for longer because right now, I have no quality of life.
"I just wish there was a treatment that could give me my life back."
It's time for new and better treatments
Claire Bale, Head of Research and Engagement at Parkinson's UK, says:
"While we’ve made huge scientific breakthroughs in the last 50 years, this survey highlights that the current treatments available are simply not good enough.
"We know we can develop treatments that can prevent 'wearing off' and tackle these debilitating symptoms, but this can only happen with support from the public who can help to fund new and better treatments."
Watch our 'wearing off' video
Watch our video of Hema and other people with Parkinson's showing what life is like when their medication 'wears off'.
Parkinson's doesn't have to devastate lives
Parkinson's can mean you can't work. Can't walk. Can't taste. Can't talk.
But research can lead to new treatments to slow, stop or reverse symptoms.
We can find a cure. We can't do it without you.