Originally from Kent, I have lived in Oxfordshire for over 30 years. Having been pub landlords for more than ten years, we left the licensed trade in 1996 to spend more time with our young family. I then commenced working with the University of Oxford covering the administration of surgical teaching for medical students.
Our two sons are now living independently, but both live locally so we remain a very close family. Their unconditional love and support has carried me through the dark days and they have shared the highs with me. They are the reason I am determined to fight this cruel condition.
Whilst my life is now in Oxfordshire, my heart and soul remain firmly in Kent. It is for this reason that I continue to support Gillingham Football Club, not something I ever get to brag about, but unfortunately it is in the blood. My sister, nephew and I can regularly be seen battling the queues on the M25 at the weekends, the journey seems shorter after a good win, hence the trip home is long and tedious (a bit like the football to be honest).
A diagnosis of Parkinson’s 16 years ago at the age of 43 was not part of my life plan and left me somewhat confused and bewildered about the future. I managed to keep working for 11 years, but took ill health retirement in 2015. Before then I participated in several trials mainly cognitive testing, completing questionnaires and similar. When I saw the Parkinson’s website and their call for volunteers for the GDNF trial, I was intrigued and soon phoned to register my interest.
I became subject no 052 and had surgery on 18th February, an event which changed my life.
For the first nine months I was on placebo. By the second infusion of GDNF I realised that something wonderful was happening to my body and my symptoms were easing. I took up driving long distances once again, could walk my dog for several miles, and had more energy than I had experienced for several years. Friends and family could see the changes in me and the improvement in my quality of life.
The results left me feeling absolutely devastated. I quickly spiralled into depression, which morphed into anger at the unfairness of it all. I had followed the rules, undergone risky surgery, allowed an experimental protein to be dripped into my brain, committed to regular visits to Bristol and truly felt the awesome benefits of GDNF. The improvement in my health was plain for all to see, so why was the trial not continuing. I had done the hard bit – all the scientists had to do was to prove statistically what was patently obvious.
The excellent clinical team at Bristol were as devastated as the volunteers, they felt the disappointment as keenly as we did. The care received from Alan Whone and his team was exemplary throughout the trial and no blame can be laid at their door for the failure.
I have talked around the country to PD groups, am a Lay Grant Reviewer, a PPI volunteer, help with various research projects from DBS to hallucinations, am working alongside PUK in a project to review assessment tools for Parkinson’s, talk to new staff joining PUK about living with PD and participating in research. I have also presented at several conferences on clinical trials. But my passion is joining my fellow participants campaigning for further research into GDNF.
The reception I have received from local groups has been overwhelming and I have been made to feel very welcome. I am frequently asked how I could be brave enough to volunteer. I don’t believe I am brave – merely frightened. Scared of the future that awaits me unless a treatment is found to stop or slow down the condition. The spectre of slowly losing the person that I am to PD is far more daunting than the possible side effects of the trial. Whereas the former is a certainty, the latter offers hope.
Clinical trials give us the chance of a future – without them we have none, but it is time for the sacrifices made by volunteers to be backed up by hard scientific evidence. I firmly believe that the miracle treatment is already out there – it just hasn’t been proven.