Age diagnosed: 56
Read Richard’s latest blog post – “Parkinson’s advocacy – what is it and what should it be?”
“There are not many good things associated with Parkinson’s. Sometimes it seems to be intent on destroying everything that you used to be. One thing that benefits many is meeting others with the condition often, due to the internet, from all over the world.”
I was diagnosed with Parkinson’s in July 2009 and in the intervening years I have learned quite a lot about the condition and have become an advocate for patient involvement at conferences and industry meetings in my local area and on a global scale. I attended the World Parkinson Congress in 2010, 2013 and 2016, where I was an invited contributor. I have also been on numerous lab visits courtesy of Parkinson’s UK.
Research is my area of interest because I believe passionately that there should be greater cross-disciplinary co-operation in the quest for better treatments and a cure.
Locally I have obtained government funding for Parkinson’s projects and attended meetings to to press home the need for Parkinson’s nurses in West Hertfordshire, UK. On a more global scale I have enjoyed being the patient voice at Parkinson’s conferences and industry meetings.
I have an interest in regulation – in particular the fact that it takes 10-15 years for a new medicine to come to market. I recently spoke at the UCB Pharma Annual Research Meeting and have also been a proponent of the importance of stratifying Parkinson’s which has, until recently, been overlooked
I have a blog, set up to provide a running commentary on my experience as a trialist on the Transeuro research programme. Today I write about other things I have encountered along the way. My blog can be accessed in the ‘Action’ tab.
Click here to access my blog – Parkinsons: Thoughts about Parkinson’s and new surgical treatments