A Person Living With Parkinson’s Perspective.
I am the wife of Darren Calder, Patient no 006 on the GDNF Phase 2 Clinical Study.
I am also the coordinator for the patient group who, after the end of the Phase 2 trial came together to support each other and form a combined Patient voice after they found themselves “out in the cold” once the findings of the trial proved negative and the trial lost its funding to continue.
When I met Darren in 2009, I knew immediately that I had found my soul mate. I had no idea of the future ahead for us and every day of my life I am grateful for the inspiration he has provided me. I am in awe of this man who refuses to roll over and accept his fate and continues to strive to be the very best he can be regardless of his circumstances.
You will often hear me say “we” when I talk about Parkinsons because we both live with it, it is just that Darren bears the symptoms.
Being a participant in the ground-breaking GDNF clinical trial has been the making of us as a couple. It has also turned me into someone who wants to fight for the cause and contribute where I can whether this may be conveying the GDNF story, or talking about being a Person Living with Parkinson’s (PLwP) in my own right. It is my belief PLwP are under utilised, we are a valuable utility for capturing data and keeping it real.
Darren was in denial for a long time before the GDNF trial. Embarrassed of the Parkinson’s symptoms and the medication side effects and especially how they manifested themselves in public. Choosing instead to hide himself and retire to the safety of his armchair, it would often leave me feeling desperate that I was not able to pull him out of himself. This was until the day he came home from a meeting with his consultant, Alan Whone with the absolute blind certainty that he wanted to be part of the Phase 2 trial and was going to be able “to make a difference” by putting his Parkinson’s to some good use.
These days my lovely man can be seen striding out with confidence and pride and with a determination to raise funds to help secure a future for GDNF. The total raised since February 2019 is now over £40K and continues to rise as we shout louder and encourage others to listen.
Darren and I have only one regret in taking part in the incredible trial and that is that the trial medical team did not prove GDNF is indeed the wonder drug that 90% of the participants who took part believe to be true. They, after all, are the living proof and yet their evidence does not count. So how can this be?
I want to make it clear we have 100% faith in the medical team and especially Professor Steve Gill who has dedicated his life to bring GDNF back and they have all learnt so much from the findings of the Phase 2 trial.
I truly believe that when (not if) they get the next GDNF trial off the ground, they will have applied the learnings alongside the participants evidence from both Phase 1 and Phase 2 trials and WILL show the world with all its doubters that GDNF is indeed that wonder drug that holds restorative brain cell properties which will improve the quality and symptoms of those suffering from Parkinsons.
We have set this web site up to share our unique experience with the world.
To raise awareness of our belief in the benefits of the GDNF wonder drug and to share our experience of participating in this unique medical trial so that that the patient experience can be enhanced in future trials and the evidence capturing tools will be fit for purpose. The patient voice is central when planning and their needs are treated as the no 1 priority in care given before, during and after the trail has ended.
We are fundraising to support the build of the next phase of GDNF trial and then ultimately to raise funds to pay for the GDNF infusions for the Phase 2 participants to receive on compassionate grounds until GDNF is licenced.