Talking Parkinson’s Research (formerly NosPRIG Pod)

Without the generosity of the many people who give their time towards participating in research there would be no progress in our quest to find new therapies and hopefully one day, a cure for Parkinson's. Amelia Hursey has worked in the public and charity sectors for 12 years specialising in Patient and Public Participation. Now Research Manager for Parkinson's Europe, we talk to her about the challenges of recruiting people for this vital role. 

In this episode we are delighted to have the opportunity to discuss the latest thinking on Diet and Parkinson's with someone uniquely placed to do so from both a professional and a personal perspective.  Richelle Flanagan is not only a leading dietician in Ireland with nearly two decades of experience, but she also lives with Parkinson's Disease having been diagnosed seven years ago when she was expecting her second child. 

Dr Kathryn Bowles explains her fascinating research into a little known gene that is thought to help protect the brain. It is hoped that discovering how this process works will provide vital new knowledge as to why some people develop Parkinson’s and others don’t. Kat also talks Julie and Helga through the complex world of genetic research, how it has developed over recent years, and why it can take so long to see progress. 

 www.bowleslab.co.uk

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9284779/pdf/13024_2022_Article_551.pdf

In this special episode of the North of Scotland Parkinson’s Research Interest Group podcast series to mark International Women’s Day 2024, we are delighted to have with us Richelle Flanagan from Ireland.  Since attending the World Parkinson’s Congress in 2019 following her own diagnosis of Young Onset disease seven years ago, she has worked tirelessly to raise the profile of women with Parkinson’s.  Now a leading advocate for females with the disease across the globe, her pioneering work is driving forward long overdue research into how Parkinson’s and its medications specifically affect women of all ages. She is co-founder of the worldwide Women’s Parkinson’s Project and also  ‘mymovesmatter.com’ – a digital health app allowing users to track every aspect of their health and wellbeing to help them live the best life possible with Parkinson’s.

Related links:

https://www.mymovesmatter.com/uccpilotstudy

https://www.mymovesmatter.com/get-the-app

https://movementdisorders.onlinelibrary.wiley.com/doi/abs/10.1002/mds.28921#:~:text=PD%20and%20physicians.-,Women%20with%20PD%20need%20to%20be%20educated%20and%20empowered%20on,psychological%20and%20social%20support%20needs.

https://www.womensparkinsonsproject.com/

https://pregspark.com/

https://www.yopdwomen.com/resourcees

https://www.womensbrainproject.com/2024/01/21/parkinsonsreport/

Sleep issues are one of the most widely reported non-motor symptoms of Parkinson's  In this episode Dr David Breen explains the mechanism of sleep, talks us through some of the theories surrounding sleep as a possible predictor of disease or indicator of prognosis, and the challenges & of researching the science behind it.

As a member of the Parkinson's Disease guideline committee of the National Institute for Health and Care Excellence, Clare Johnson explains the vast number of ways Occupational Therapists help patients and their families cope with the everyday motor and non-motor challenges of living with Parkinsons. We hear about the benefits of multi-disciplinary clinics and why standard measurement scales can fall short compared to individualised evaluation.

Speech and language issues can affect many people with Parkinson's at any stage of the disease. In this episode Dr Anja Lowit, Professor of Speech and Language Therapy at the University of Strathclyde talks Julie Jones and Helga Macfarlane through the various interventions that can help, the challenges of carrying out and analysing research into speech and language and how technology is developing to help.

Based in the Centre for Regenerative Medicine in the University of Edinburgh, Professor Kunath is Chair of Regenerative Neurobiology.  The focus of his laboratory addresses two key areas: (i) understanding how the protein, alpha-synuclein, causes degeneration of neurons in Parkinson’s, and (ii) producing a cell-based therapy for Parkinson’s Disease.

The North of Scotland Parkinsons research interest groups:  https://www.nosprig.org/

Research groups nationally:  https://www.parkinsons.org.uk/research/local-parkinsons-research-interest-groups

Parkinson’s UK Scotland:  https://www.parkinsons.org.uk/about-us/parkinsons-uk-scotland

Ed Newman is a Consultant Neurologist based at Queen Elizabeth University Hospital and Glasgow Royal Infirmary. He has a specialist interest in movement disorders and Parkinson’s Disease. He is part of the National Deep Brain Stimulation (DBS) service in Scotland and runs a Parkinson’s Disease telemedicine service to the Western Isles. He is also interested in medical education and runs the clinical neurosciences teaching programme for University of Glasgow’s Medical School.

If you want to know more about DBS, Parkinson’s UK have a number of great resources, please click here for more. 

Jo who has Parkinson’s invited Parkinsons UK to film her journey following having DBS, if you would like to view this, click here

Professor David Dexter, Parkinson’s UK’s Director of Research shares his optimism over current trials that are nearing completion. He explains the charity’s research strategy, the roles and importance of volunteers, and the challenges the disease presents researchers in their quest to find new treatments and a cure.