Welcome to my vanity project. The intention is to share, with you, some of the things I’ve found useful and interesting that have helped me, living with the condition since diagnosis in 2010.
There are three main threads that have given me a mission and degree of empowerment:
- A curiosity in research
- My love of table tennis, and
- Participation in the Transeuro ‘stem-pd’ transplant study
My purpose is to help others have a sense of control and a feeling of hope for the future. I want, in some small way, to improve your quality of life living with Parkinson’s – for you and your family.
I will be keeping this blog up to date with relevant research updates and my progress / activities. Subscribe to get updates as I write them.
For convenience, I’ve collated a few of my previous published writings, which have been tagged as ‘Archive’, and included in this blog for information.
Exercise & Table Tennis
I knew exercise was good for people with Parkinson’s, and fortunate that my life long passions have been table tennis and cycling. I believe they have helped to slow the progression of my symptoms. There is now strong research evidence to support this, and lots of personal testimony. Table Tennis England have been working in collaboration with Parkinson’s UK since 2010 and have just published a guide for organisers to help them get started, with lots of useful tips and facts. Follow my mission to get the first UK squads to the PingPongParkinson World Championships in Berlin.
PPI Research Collaboration
We’ve known about Parkinson’s, or shaking palsy, for over 200 years, yet there is still no clear cause nor cure. And the lived experience is unique to us all as there are known to be well over 40 possible symptoms. Research, funding and collaboration are essential to solving this mystery. Getting involved with research activities is something we can all do, in one way or another. This can help raise awareness, understanding and lessen the fear of our condition – making me feel more in control of my situation.I love sharing this with other parky people and help make a difference for both researchers and PwP.
Photo MRC MagScan
Dopaminergic
Stem Cell Therapy
The TRANSEURO, now STEM-PD, stem cell research study was one of my earliest, and longest, I’ve participated in. Since joining in 2012, I’ve visited the Centre for Brain Repair in Cambridge every six months or thereabouts. Performing a barrage of motor and non-motor tests and assessments, both ON and OFF meds, to track my progression as part of the control group. I wasn’t particularly wanting to become a patient, but when invited for the second time, early 2024, I felt the time was about right for me and the research progress. Follow my journey to become patient no. 8 of 8, in October 2024, for this first in-human phase 1 safety study in Europe.