“I joined to understand research”

In this series, we hear from some of our Research Support Network members about why they joined, and what they have been up to. This is Lesley’s story.

“Diagnosed in 2004 at the age of 43, and with two sons aged 11 and 13, I was desperate to find out what the future held. Yet the volume of ‘information’ available online was misleading, inaccurate and terrifying, and I soon resigned myself to the fact that there were no answers.

“Since then, I have realised that the main source for realistic, down to earth and reliable information is Parkinson’s UK. Their commitment to improving the lives of patients and carers, while searching for the elusive cure, was apparent.

“With symptoms increasingly affecting my ability to perform everyday tasks, resulting in ill-health retirement in 2015, I was determined to take part in research. Following many smaller studies, I discovered the GDNF trial in November 2014 and had brain surgery to insert the delivery device that would infuse an experimental protein with the potential to slow down, stop or even reverse cell death.

“My last infusion took place in December 2016 and despite feeling more alive than for some time, the trial has struggled to demonstrate that the treatment works. It is my firm belief that this is not because GDNF does not work, but that the assessments carried out are artificial, open to misinterpretation and judged against a standard scale that has not evolved in decades.

“While the inability to tap our noses or the way we walk without swinging an arm may indicate the presence of Parkinson’s, they have little impact on our everyday lives. Yet in clinical trials these tests and measures form the basis of our overall ‘score’ — whereas severe cramps, which can render us immobile, are not assessed.

“Joining the Research Support Network has given me an insight into the tireless efforts made by Parkinson’s UK to improve lives, and the opportunity to understand current methods of assessment. It has also given me opportunities to become involved in shaping more relevant and realistic tests, which could turn inconclusive trials into real hope for the future.

“There is no regular commitment, no pressure to contribute, just the opportunity to voice an opinion. Singularly we will struggle to be heard but as a group we can demand change. The failure to find that elusive cure has to be addressed and while scientists know the in depth structure and workings of the brain, patients know what living with this condition really means. Until these two unique perspectives are working in harmony, trials will continue to fail.