I was diagnosed with Parkinson’s in 2004 and can now barely remember life without it.

I have always believed in being the master of my own destiny, but Parkinsons is a condition that dictates crippling cramps, soul destroying fatigue and inflicts so many restrictions and compromises that it is hard to remain in control.  Parkinsons has robbed me of choices and changed my outlook on life.

Then along came a clinical trial that made no promises, was highly invasive, could leave me with brain damage or could cost me my life.  After agonisingly honest discussions with my family, we decided that participation was the next step.   It offered the chance of a future - Parkinsons offered none.  

The research team made it clear from the start that we could hope for a positive outcome but we could not expect one.  I accepted that as the best chance I  had of regaining my life.  However, surely we should expect that should the treatment prove to work, then our future was bright.

So the infusion of GDNF  directly into the base of my brain has had a profound effect on me and most of my fellow participants.  I had more energy, the excrutiatingly painful cramps were gone, I could walk further, faster - I had my life back.

Then on my 57th birthday the results were announced.  My world came to an abrupt end as the chief researcher reported that the targets had not been met.  Science had let us down very badly by not proving to the satisfaction of regulators that the treatment that had transformed my life worked.  To the scientific world it had failed - I sank into a deep depression.

Out of this pit the GDNF Participant Group was formed.  The guinea pigs decided not to sit back and accept defeat. We knew it worked, we had a tv documentary to prove it and we had the evidence of our own bodies.  The result was an absolute travesty.

The group picked themselves up, dusted themselves down and decided to ensure that GDNF  was not lost to future generations by the short sighted nature of medical research..

Since then we have been making guest appearances at conferences, talking to local Parkinsons groups and generally making a complete nuisance of ourselves.  We are completely determined to ensure that  GDNF is fully researched.

We know that GDNF works – we are living proof.  Our families and friends have witnessed the improvements in our movement, strength, walking ability, general fatigue levels and zest for life.

We are now organising our Challenge to unite the charities in our goal of raising awareness of Parkinson’s and instilling a sense of urgency into research.  

42 teams (representing the number of participants) will each cover 100 miles, either by individual endeavour or by a team effort.    I will be joined by the people who make life worth living - my family.  I will proudly walk alongside four generations ranging in age from 4 months to 88 years old in April 2021.  They have supported me throughout the condition and the trial and are my reason for not giving in to Parkinson’s. Their support has been so generous that we are entering two teams :-  "Nought to Ninety in ten days", which is explained above, and "Physiclee Fit" which is named after my sister's family.

Becoming a grandparent in December 2020 has given me a new lease of life, and also made me even more determined to ensure that my voice is heard in the campaign to find a cure for the fastest growing neurological condition in the world for the sake of future generations.  I refuse to sit back and accept that the cure is still many years away, and will shout till my voice leaves me that People with Parkinson’s matter.

My family have watched my health steadily decline over the past years, then experienced the healing powers of GDNF with me as my quality of life slowly but very surely improved.  For years I had been trapped in my own body, unable to command bodily movements, with stiff muscles, depression and anxiety, then I discovered GDNF. 

In the years since my diagnosis, I have watched promising treatments come and go, listened to the excited announcements of new research, and waited with baited breath for the most precious gift – hope.  When it did come along though, it was cruelly snatched away. 

All the while science strives to discover the best possible treatment, shelving promising remedies along the way in the search for something better, those with Parkinson’s continue to suffer.  

Our aim is to wake up the UK and the world to the horror that is Parkinson's.  Living in a body over which you have little control, stiff and rigid muscles, acute back pain, cramps, depression, anxiety and a whole lot more.