Lynn lives with Parkinson’s. At our Parkinson’s NEC-RIG launch event in December 2021, she shared her experiences of taking part in several research studies as well as later helping to design studies. We have transcribed her talk below so you can find out more.

Thank you Lynn for all your help with Parkinson’s research and for giving up your time to help launch this group!

“Hi, everyone I'm Lynn and I was diagnosed with Parkinson's in 2008. I live with my partner. Ken, who also has Parkinson’s. And we met through our involvement in the charity Parkinson’s UK.

Within a few months of my diagnosis, I took up the invitation to be part of the ICICLE-PD Study in Newcastle at the delightfully named Clinical Aging Research Unit. And after that I pretty much signed up for every study going, especially if I got to play in the Gait Lab.

After Rachael joined the team at CARU, she and I crossed paths regularly there. In 2017 Rachael asked if Ken and I would help her with the pilot for DELIRIUM-PD. Subsequently she also invited us to be part of the advisory group for the three-year study, and she stuck with us in spite of complications, through my gall bladder surgery, a very poorly dog, and our eventual move down to Teesside.

Being a participant in Parkinson's studies has always been a very positive experience for me. I’m interested in the science of Parkinson's, and I enjoy talking to the experts and learning from them. They also do really nice lunches at CARU, and I don't know about you, but I've no objection being treated like royalty for a morning or an afternoon, and fed watered, basically anything within the restrictions, or whatever tests or procedures on the order of the day. And the banter is pretty good too.

And moving on from being a participant, and being able, as a person with Parkinson's to help shape the planning and design of research studies, I find that immensely satisfying. I know that some people are wary of becoming involved in this way, and perhaps because they feel that the workload might be too onerous, or because of the suspicion that patient public involvement and engagement in general, it's just a ticky box exercise. But with Rachael's study the workload was whatever we were happy to take on. Rachael regularly consulted us on the frequency and the length of meetings. She worked around us pretty much endlessly during the gall bladder/poorly dog/moving house period, and as well as with the general everyday difficulties that come with living with Parkinson’s. Phone calls and virtual meetings were one solution, even before COVID, if I remember rightly, and Rachel would email the study documentation for us to look over. But we were never under any obligation to do any more work than we were comfortable with.

Having been a teacher in a previous life. I quite like taking the red pen and studying documents, and I’ve read through some pretty awful so-called plain English summaries in my time. But I have to say that Rachael's non-medical forms for DELIRIUM-PD were always written in language easily understood by non-experts. Even so she always took on board my suggestions that I made with regard to layout or emphasis, and those changes are there in the published papers. Likewise, for opinions with regard to structuring the tests and questionnaires, timings, frequency, data protection, follow up, were all given due consideration, and some were included in the final set of the studies.

To end, I’d like to say, well done to Rachael for managing to continue a really worthy and important study, and in difficult times. And Ken and I look forward to seeing the results, and we'd also like to say thank you for making our involvement such a positive experience.”