Dates: 1-14th September 2021
Method: Walking & Cycling
Team Captain: Iain Cowan
Team members: Ian; Dave; Mandy; Karin
It was was in 2001 just before my 49th Birthday, that I was diagnosed with Parkinson’s. To be perfectly honest It had little impact on me for the first eight or so years. However, as time passed I needed an ever increasing amount of drugs in order to mask my symptoms.
I heard on the television about a pilot study taking place in 2003 in Bristol. The pre-trial pilot was a success and they were looking to recruit a further 36 people, It was a ground breaking trial using an untested system to deliver an untested protein directly into the brain. Despite the high risks I was determined to be one of the additional participants making it 42 in total. My application was accepted, I ticked all of the relevant boxes and I become known as participant number 013, unlucky for some but what would it hold for me?
Our days were full of information and endless tests MRI , PE&CTscans as well as a mass of admin.
Finally we faced the reality’ of 6 to 8 hours in theatre for the operation to insert the system. I had a hitch when my port became loose and I had to undergo a further operation to stabilise it. The Registrar quipped “You could hang an elephant off that!. “
I started infusions and continued every 4 weeks. Coming off medication every two weeks was gruelling and was not for the faint hearted. It was all consuming and exhausting but Alan Whone and his team supported us. The improvements in my symptoms were beginning to kick in. Smelling bacon and eggs cooking and being able to. wear shoes rather than trainers with holes cut in the top (dyskinesia) are small examples of this . My hopes were high but scientific evidence, still deemed the trial a failure, even though almost all of the participants saw huge improvements.
My mental health suffered dramatically. I have always felt positive about life and never really understood depression so this was a real shock. It seems wrong to me that there is something worth looking into from the the patient perspective that can be so easily dismissed by the scientific world.
The screening of the BBC Panorama documentary “Parkinson’s a miracle cure ?” prompted me to join up with the brave and inspirational GDNFers . We believe we can beat this wretched illness by all pulling together, take on board our mantra…
Stand up Shout out be Counted.
We're raising money for: