Claim OwnershipThe North of Scotland Parkinson’s Research Podcast Series
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The North of Scotland Parkinson’s Research Interest Group (NoSPRIG) is part of a nationwide network of research groups supporting Parkinson’s UK by increasing awareness and involvement in research at a regional level. We comprise of people with Parkinson’s Disease, carers, health professionals, scientists, and interested volunteers.
The aim of our podcast series is to focus on Parkinson’s research from a Scottish perspective and highlight some of the work being done here to find out more about the mechanisms of this complex disease and ways of making life better for those living with it.
We hope you find our episodes entertaining and informative. Any feedback would be much appreciated - email: nosprig@gmail.com. Thank you for listening!
The aim of our podcast series is to focus on Parkinson’s research from a Scottish perspective and highlight some of the work being done here to find out more about the mechanisms of this complex disease and ways of making life better for those living with it.
We hope you find our episodes entertaining and informative. Any feedback would be much appreciated - email: nosprig@gmail.com. Thank you for listening!
39 Episodes
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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.
To start the fourth series of the podcast we are turning our focus towards the much neglected area of mental health related research. Just over a year ago Becca Hunsdon from the University of Reading began recruiting participants for her PhD project ‘Moving Forward’, exploring a new online group programme she’d developed to offer psychological support and improve quality of life for people with Parkinson’s. Podcast co-presenter Helga Macfarlane volunteered to take part having never been involved in anything like it before. Over the following eight weeks she found huge value in Becca’s sessions, so along with podcast host Dr Julie Jones invited her into the studio to find out the thinking behind its group based online set-up and how, with her own psychotherapy input weaved throughout, it explores mood, emotions and coping, and reconnects participants with their values to support them through unhelpful thoughts and feelings.
Landmark is a ground-breaking research programme aimed at accelerating the search for new treatments by applying cutting edge techniques to gain a new level of insight at cellular level into the changes Parkinson's causes in the brain. Principal investigator Professor Michael Johnson from Imperial College London explains the need across the global research community for the new high quality datasets his team will produce.
The project will use tissue samples from the Parkinson's UK Brain Bank, which was set up 22 years ago as a result of the remarkable foresight of Professor David Dexter, who is now the charity's Director of Research. He explains what it was like to see his vision come to fruition when Landmark was launched.
The three year research programme brings together a Parkinson's UK led consortium of four major pharmaceutical companies - GSK, Novartis, Roche, and UCB, plus Imperial College London, which was made possible with £4m of funding from the Gatsby charitable foundation.
https://profiles.imperial.ac.uk/m.johnson
Parkinson’s UK have published the results of an unprecedented study that’s provided a wealth of new detail into the condition in the UK today.
Eighteen million patient records were analysed uncovering the key issues facing the one hundred and sixty-six thousand people with the condition in this country and highlighting up to twenty-one thousand more with no treatment or support while they wait to be diagnosed.
With the help of Caroline Rassell, CEO of Parkinson's UK and Lance Lee, the charity's Analytics and Insights Lead, we examine the methodology behind the collection of a data set of this magnitude, how the millions of pieces of information are harmonised to reach accurate results. We also hear how patient privacy is protected when medical records are used for research of this kind and some of the implications of the information the survey has uncovered.
If you would like to read more about the research click on this link:
https://www.parkinsons.org.uk/research/research-blog/our-research/parkinsons-uk-what-do-we-know
The ground-breaking Predict-PD study has been gathering valuable information from thirteen thousand volunteers for 15 years, in an effort to find ways of identifying those people most at risk of developing Parkinson’s. We catch up with progress so far and find out how the project is continually growing and swapping information with other researchers as science moves ever closer towards the establishing the causes of the world’s fastest growing neurological disorder.
Dr Alastair Noyce, the Principal Investigator, is Professor of Neurology and Neuroepidemiology at the Queen Mary University of London.
If you are interested in volunteering to take part or just want to find out more, you can do so using this link:
https://predictpd.com/en
We are delighted to be focusing this month's episode on a research project that is actively recruiting patient participants all across the UK. The investigation, based at University College London, is looking at whether a medicine currently used to treat nausea and vomiting caused by some cancer treatments, could also help people with Parkinson's and Lewy Body Dementia who experience hallucinations.
Read Maria and Desmond's experience of taking part in the Top Hat trial:
Blog: https://www.parkinsons.org.uk/research/research-blog/ask-expert/research-reduce-hallucinations-desmond-and-marias-story
#Link to Take Part Hub recruitment page: https://www.parkinsons.org.uk/research/top-hat-trial-licensed-drug-parkinsons-hallucination-treatment
In this episode we're turning our attention to a long overlooked area of Parkinson's research; oral health. Despite its importance, little is known about how oral health issues affect quality of life for people living with the condition.
Jessie Tebbutt, NIHR Doctoral Clinical Fellow in Special Care Dentistry at the University of Sheffield, has been exploring the existing evidence on the oral health experiences of those with Parkinson's, and identifying key gaps in the current knowledge with a view to helping shape future research priorities.
In this episode we delve deep into science to hear about Professor Ian Ganley's ground-breaking research in the field of mitophagy, one of the body's self cleaning mechanisms that could play a key role in the development of Parkinson's. Not only is Professor Ganley making strides forward in what we know about the process, but his team have invented a prize winning new tool that has revolutionised the pace of progress in this immensely promising area of research worldwide.
Further reading:
https://www.ppu.mrc.ac.uk/research/principal-investigator/ian-ganley
Prof. Ganley's paper on the effects of LRRK2 mutations in mitophagy:
https://elifesciences.org/articles/67604
This month the NoSPRIG Parkinson’s research podcast is taking an unusual step away from science and into the arts. We’re joined by Dr Bethany Whiteside, Senior Lecturer at the Royal Conservatoire of Scotland, to find out about her research into specially adapted dance for people with Parkinson’s.
She has identified a huge range of benefits for people taking part in the classes, which have movements specially tailored for those with the condition, and why the benefits differ from those of exercise on its own.
https://pure.rcs.ac.uk/en/persons/bethany-whiteside
https://scottishballet.co.uk/research-and-evaluation/dance-health-research/
Pain is the subject of this month's episode, something that can affect people with Parkinson's in a huge variety of different ways. Dr Jenni Naisby, Assistant Professor of Physiotherapy at Northumbria University has been collecting a vast array or personal experiences of pain in her research looking into how the condition can affect pain processing at multiple levels of the central nervous system, and then find ways of classifying it by its mechanisms. By understanding how pain behaves she hopes to find better ways of treating it.
If you would like to read Jenni's latest research, which is funded by the Medical Research Foundation, you can find it below.
https://journals.sagepub.com/doi/full/10.3233/JPD-230227
https://journals.sagepub.com/doi/full/10.1177/08919887211023592
In this special episode to mark World Parkinson's Day, we focus on something every person with Parkinson's can do to help in the quest to find new treatments and ultimately a cure. One of the biggest obstacles facing research is finding enough volunteers representing as diverse a population as possible, to help with studies and trials.
We also hear first hand, the emotional story of how a patient participation role has led to a new treatment that is transforming the lives of people with Parkinson's.
Joining Dr Julie Jones and Helga Macfarlane in the studio are two people with vast but very different experience in the field of PPI:
Claire Bale is Associate Director of Research and Involvement at Parkinson's UK, and Sue Whipps, a long standing patient participant along with her husband John, who has Parkinson's.
This month we focus on bone health with the help of our guest Dr Alistair Mackett, a Consultant Geriatrician specialising in Parkinson's at Addenbrookes Hospital in Cambridge and Regional Clinical Lead for the East of England Parkinson's Excellence Network. People with Parkinson's are far more likely to to have poor bone health and a far higher risk of fracture than the rest of the population. We find out why, how this can be prevented and what treatments are available.
Parkinson’s Excellence Network https://www.parkinsons.org.uk/professionals/parkinsons-uk-excellence-network ,
Parkinson's UK Bone Health
https://www.parkinsons.org.uk/information-and-support/your-magazine/experts/bone-health-and-parkinsons
Guests:
Dr Bhanu Ramaswamy OBE, Independent Physiotherapy Consultant and Honorary Visiting Fellow, Sheffield Hallam University.
Dr Alison Williams, Person with Parkinson's, Academic, Artist and Parkinson's Public Speaker
This month's podcast sees us shift from the usual focus on quantitative evidence-based research to qualitative research surrounding the subject of self-management in Parkinson's. We find out what this can mean for different people and what research tells us about it.
The benefits of exercise for people with Parkinson's are well known, but if you're struggling to stick to your New Year's resolution to be more active, this episode should give you all the motivation you need! Ledia Alushi Agley's doctoral research at the University of Cambridge, involving more than four hundred participants, saw her co-design a physical health programme for those newly diagnosed with Parkinson's. She shares with us some of the fascinating findings of her study. which also explores current clinical practice in relation to exercise, and the views of healthcare professionals.
In this special extended podcast we have three guests in our virtual studio to examine whether we're getting the messaging about Parkinson's right, be it reporting research findings or at a patient appointment. With the help of Prof David Dexter, Director of Research at Parkinson's UK and Professor of Neuropharmacology at Imperial College London, Dr Angus Macleod, Honorary Consultant Neurologist at NHS Grampian and Clinical Senior Lecturer at the University of Aberdeen, and former broadcast and print journalist Iain Stephen Morrison, who is the Media and Communications Officer for Parkinson's UK in Scotland, we discuss the difficulties of painting a realistic picture whilst remaining mindful of feelings and still preserving hope. We tackle some difficult topics including prognosis and the mixed messaging surrounding whether one dies with or from Parkinson's, and examine bias in research participation, publicity and public awareness campaigns.
Research already carried out by Rachael and her team discovered that people with Parkinson's are far more likely to experience delirium in hospital leading to far poorer outcomes on release. Now they are examining why this is and how this might be avoided. In this episode Julie and Helga find out more about this complex issue and the challenges of researching it.
This tremendous research collaboration at the London Metropolitan University aims to tackle one of the most distressing but neglected symptoms of Parkinson's - Facial Masking. Dr Cassie Terry, Reader in Protein Pathology and Dr Fiona French, Associate Professor of Computing and Digital Media, are developing a virtual reality application to rehabilitate facial muscles and help bring back the ability of a patient's face to reflect their feelings and personality. NoSPRIG member Neil Morrison, diagnosed with Parkison's in 2018, has been involved since the start.
email: C.terry@londonmet.ac.uk
Our research centre: https://www.londonmet.ac.uk/research/centres-groups-and-units/centre-for-health--life-sciences-research/
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