What’s it like being involved in research? Volume 2

Tim lives with Parkinson’s. At our Parkinson’s NEC-RIG launch event in December 2021, he shared her experiences of taking part in several research studies. We have transcribed his talk below so you can find out more.

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

“My name is Tim, I'm 62 years of age, and I'm a semi-retired and schoolteacher. I've worked all my Career in schools, as a teacher in the UK and overseas. I was diagnosed with Parkinson's in March 2020, which coincided with the global pandemic lock down. There were three reasons, why I wanted to get involved in research.

First, as I found myself being diagnosed in the lock down, there was limited access to the network and services, and things that had been happening quite actively before were no longer around, and it was difficult to get engaged with the Parkinson's community. So I joined Parkinson's UK.

Second, I wanted to find out as much as I could about my condition, and how I could learn to live with it and manage it. I got emails from Parkinson’s UK with research opportunities listed. And I thought, this is going to be a good thing for me to do, because selfishly, I can begin to find out little bit more of what I’m facing now with this new diagnosis. I invested most of my career in training teachers, and what I did with those teachers was evidence-based education and show them things that work in the classroom because they've been proven by research. Therefore, I was very familiar with this whole area of research and I’m a big supporter of the work and the value of research.

The third reason I wanted to get involved was that I wanted to contribute, I did want to give something back and wanted to be a part of what was going on. The researchers need participants for them to be able to carry out their research. I have the diagnosis of this disease, and so I was qualified to take part in their research, and with my semi-retirement I had a chance to get involved.

Through the Parkinson’s UK E-mails, I started to look for research opportunities, and I've been involved in a number of them here in the northeast, and I want to pay a particular tribute to the work that's going on at Northumbria, which is absolutely fascinating. I have been involved in a number of their studies so far, and I've got a tremendous amount out of it. I have been involved in a study for a smartphone app for falls reporting that replaces a traditional paper diary that participants complete. The apps on the phone, you can log on, put your details in, and the big benefit of me has been that healthcare professionals could get hold of this app could use the app, and they could use it with the participant.

I've also been on the challenge for ten thousand steps over the last month. It was great really to get involved in this study, because of the lock down at the time. One of the things we could do a lot, if you remember, was to go out for a walk each day. So, my wife and I took a great advantage of that, and used to go for our legal work each day. So, the project that was involved with monitoring how far you would walk. The watch motivates you to carry on walking, giving you little fireworks that go off on you when you reach your ten thousand steps and you feel motivated by that. The study was about thinking about how you can stay motivated by a piece of technology to keep going. And the answer was, yes, it does. It does work, it really does.

In conclusion, what would I say? I think being involved in research is a privilege. That is the word I would use. And why is it a privilege? It is a privilege being involved because I have met people who are professional in their work, and they are clearly dedicated to advancing our knowledge of Parkinson's, and how those of us with it living with it condition. But, these researchers, as well as being professional, have also just been lovely people. I think that has been so important to me because they have been a people who have taken an interest in me, and what is going on in my life, and that has been great. They have asked about my family during challenging times. They asked about all sorts of things, and just got involved in that, and that for me has been so valuable. I benefited from that. So, I want to end by saying a big thank you to them, and I look forward to being involved in more work in the future.”