glad you found the lecture interesting - I hope more people find it on the website.
Sadly Parkinson's Disease is how it is referred to - but am a bit horrified about the affect it seems to have re the Mortgage - hopefully someone within PUK will respond about that?????
If you look on the PUK website page about getting involved in research, that is where the PUK funded research projects are 'advertised'
another way to find out about projects is by joining the Research Support Network and you will get regular emails about projects needing both PwP AND PwoP....
I have taken part in loads of different projects, and as I am a bereaved carer am able to travel around to reach wherever the work is being done. The researchers have a budget to pay their volunteers - so you are not out of pocket.
I have always found the researchers very helpful, and keen to share their work and ideas and listen to the description of my journey with PD supporting my Mum.
Sadly I have come to realise that one of the reasons they are keen to accept healthy controls for their research is that not enough of us put ourselves forward.
Other things I have become involved in are as you describe - helping the researchers put their projects together and word their questionnaires, or phrase their descriptions of what they are proposing to study.
PUK are working hard on a new approach to ensure research funds given to researchers from the PUK funds raised by fundraisers etc, is used well.
It is called PPI - Patient and Public Involvement. By working with people like you and me and others affected by Parkinson's who know first hand about the condition - our input is invaluable to keep the researchers in touch with 'who' their research is all about. It takes them out of the lab and away from 'science-speak' and supports the researchers in focusing their research to further the search for the cure/better quality of life/control of symptoms...etc.etc
The latest Progress magazine has articles about getting involved...one with me talking about my involvement with Lorna Rixon research. At the moment I am helping PUK with a PPI Volunteer Training Pack.
Join the Research Support Network and you will find that wherever you live there is lots you can do to support their work...not just being a volunteer guinea pig in research but on-line reviewing articles/grant research applications/reviewing policies/being involved by telephone...etc etc...
I love what I am involved in and get out of it as much as I put in!!