Age diagnosed: 54
Specialist interest: Communicating research, Clinical trials & studies
I was a scientist studying plant pathology and microbiology at Warwick University. Married with two grown-up children.
Enjoyed running and physical activity in general (but not swimming – it is far too wet).
When I was diagnosed it came as a big shock and in 2009 retired to a sea view in Looe. After a while, I accepted the situation and, in view of the excellent treatment I received from my consultant, PD nurse and GP, wanted to give something back.
With my wife Sue, we got involved with Parkinson’s UK, locally and nationally, and carried on from there. Now able to get as much sea fishing as I want and nurture my growing love of photography (what is an f-stop???)
Why is the World Parkinson Congress (WPC) important to you?
I attended the second WPC in Glasgow not long after I was diagnosed, and found the preliminary day was excellent for me to learn about the condition. (I was largely ignorant about all areas of PD). Combined with attending the science seasons, it was a great way to start on the PD road. We also met our first overseas Parkinson’s friends.
What are you looking forward to at WPC?
I am particularly interested in the latest findings especially concerning DBS, which I am considering having done later in the year. Also I would like to keep up to date with thoughts on the genetic landscapes associated with Parkinson’s and the gut microbiome developments.
Initially, involved in setting up a local YOPD group, wrote articles for local newsletters and gave talks on PD research and PD in general to lay audiences and reviewed grant applications.
I also got involved directly with research in various ways including:
- Answering questionnaires
- Visiting labs, as a patient in a sub-lingual apomorphine trial as a member of the PDSTAT steering committee, as a co-applicant in the ADEPT-PD trial and most recently in app design for non-motor symptom monitoring
I am also involved in:
- Teamwork – on the quality of life side of things, I work with others locally running a PD drop-in but work with clinicians and research scientists to help design grant applications
- Funding – everything from rattling collections tins, street collections and collections at PD talks and meetings
- Communicating research – give regular accessible talks to local groups on PD in general and Research (what it is and how to get involved).
Write articles in newsletters.
- Clinical trials and studies – take part and involved in planning and design
What is the one thing you want to change in the world?
Make medical research and treatment as equitable as possible.
What advice would you give to others who are keen to get involved in Parkinson’s research?
In the UK, speak to your consultant or PD nurse who should be able to get you some information. If this does not have much success look on the Parkinson’s UK website, Michael J Fox website and Cure Parkinson’s Trust website.
Is there a piece of reading you would recommend to someone wanting to find out more about Parkinson’s research?
Parkinson’s UK website. Relatively easy to access and generally kept-up-to-date. It is accurate and tries to include information worldwide but is still UK focused.