Specialist interest: Raising awareness, Clinical trials & studies
Much to my surprise I am 66 years old, a retired primary school teacher with many volunteer roles with Parkinson’s UK and beyond. I am the Partner to somebody with Parkinson’s. I am mildly addicted to Facebook and reading. (And will start an exercise programme ‘tomorrow.’)
Why is the World Parkinson Congress (WPC) important to you?
It was the first congress to respect people affected by Parkinson’s as an integral part of the research and therapy triangle. There is an intention to help a lay audience get up to speed on the current information and to help understand both treatment and trends in research. Equally young researchers at the beginning of their careers meet people affected by Parkinson’s, possibly for the first time, helping them to see why their research should be patient focussed rather than gadget focussed.
Long may the triangle be reinforced.
What do you hope to get out of WPC?
I am in a position to explain the trends in research and therapy to people in the South West Peninsula, Devon and Cornwall. I hope to come back with ideas that will help me do just that. Also, I’d like find out how other people have been able to bring research findings to general neurologists to help them select patients for newer treatments.
I am the founder of PenPRiG a regional Parkinson’s Research Interest Group, bringing clinical research opportunities, plain English science reports and research talks to Devon and Cornwall.
I am currently organising the third South West research conference in Plymouth (UK).
I run several Facebook groups and am particularly proud of the one for Caregiving Partners and family members.
I also help run three, monthly support groups with researchers using that forum to foster focus group links to improve the Patient input into the design of studies.
I help people improve their understanding of Parkinson’s and develop self-management strategies. I am currently working in a team to produce an app to monitor Non Motor Symptom with a link to clinician oversight and a self-help library.
I have aided clinical trials and studies in several ways. I am in the Trial Steering Group for PD Stat, I publicise local research opportunities and review the lay summary of grant applications.
Parkinson’s can be very socially isolating and I aim to develop supportive, informative networks, both online and face-to-face.
I tell people about research opportunities and results by speaking to local Parkinson’s groups, writing for Cornwall’s newsletter and through online Facebook groups.
I am interested in the stratification of Parkinson’s and development of better measures of disease progression to assist research.
What is the one thing you want to change in the world?
Health services around the world have become subject to government whims and the profit line of big business. I would like to see that change, and everybody have access to affordable, timely, good quality healthcare.
What advice would you give to others who are keen to get involved in Parkinson’s research?
Speak to your specialist and if they are not interested there’s plenty of information online. (In my opinion, specialists not interested in talking about research opportunities and reflecting the latest results in their practice are not specialist enough.)
Is there a piece of reading you would recommend to someone wanting to find out more about Parkinson’s research?
Parkinson’s UK has a good, plain English research section. News, and opportunities feature there. They link to an excellent blog here https://medium.com/parkinsons-uk
Parkinson’s UK also publishes a research magazine called Progress. That is released half yearly and can be downloaded or subscribed to.