Age diagnosed: 57
Richard’s latest post summarises points where he thinks action is needed:
“Number one. Greater involvement in the design and analysis of research projects.
Number two. A review of the UPDRS.
Number three. Alternative ways of incorporating a placebo to ensure that it is used as efficiently as possible in the experimental design.
Number four. Consider whether the statistical methods we are using in order to determine the success or failure, of research projects are optimal, particularly when looking for a new treatment.
Number five. At the end of the trial there should be a procedure for participants to feed back observations, good and bad, as to what might have been done differently.“
Click here to read Richard’s full post “Five things where I think action is needed”.
SOME GOOD ADVICE…..Attend the World Parkinson’s Congress if you possibly can. If not, take advantage of the wealth of material that is produced online.
Don’t believe everything the scientists tell you. Try to ask hard questions at meetings. Keep pressing for more patient involvement.
Two books stand out for me…. “Shake Well Before Use,” the seminal work by Tom Isaacs. Even in death Tom still acts as an inspiration. The second is the slightly more obscure “The day I found out why – My life’s journey with Parkinson’s” by Israel Robledo. What I liked about this was the way in which someone whose early life had been so different yet so similar to mine because of Parkinson’s.
Research moves so fast that keeping up to date with magazines and scientific publications is also useful.
I am married with two children – both of whom have left home. My wife and children have been incredibly supportive and my son ran in the Berlin marathon to raise funds for Parkinson’s research.
When I was diagnosed I wanted to find out as much as possible about Parkinson’s. I was fortunate to be able to attend the World Parkinson’s Congress in Glasgow in 2010 and I also attended all the subsequent Congresses. This triggered my interest in research.
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 was the secretary of the West Hertfordshire branch of Parkinson’s UK for five years. During that time we set up classes for conductive education, singing, dancing and creative writing. I am now the secretary of the Southampton branch of Parkinson’s UK. I have been involved in obtaining local government funding for Parkinson’s activities, fundraising, representing the voice of the patient in conferences and at industry meetings and at meetings with politicians at election time.
I have been a participant in the Transeuro clinical trial almost as long as I have had Parkinson’s
I have an interest in drug regulation – in particular the fact that it takes 10-15 years for a new medicine to come to market. I have worked with Parkinson’s UK In submitting responses to government consultations.
There is a post in my blog (see next tab) about the urgency of finding a cure for Parkinson’s. I have been a proponent of the importance of stratifying Parkinson’s which has, until recently, been overlooked.
Click here to access my blog – Parkinsons: Thoughts about Parkinson’s and new surgical treatments