Episodes
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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.
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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.
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Episodes manquant?
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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: [email protected]
Our research centre: https://www.londonmet.ac.uk/research/centres-groups-and-units/centre-for-health--life-sciences-research/
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Welcome to part 2 of our special two part podcast to mark World Mental Health Day 2023 on 10th October. Julie Jones and Neil Morrison from NoSPRIG will be joined by Senior Clinical Neuropsychologist Dr Jennifer Foley and mental health specialist Parkinson’s Nurse Emma Edwards
In episode 2, we’ll be taking an in-depth look at depression, another common mental health issue facing people with Parkinson’s.
Dr Jennifer Foley is a senior clinical neuropsychologist at the National Hospital for Neurology and Neurosurgery and Honorary Lecturer at UCL Queen Square Institute of Neurology in London. She has a specific interest in patients with movement disorders. She is lead of the Parkinson’s UK Excellence Network for Mental Health and is involved in research trials of new treatments for the cognitive and emotional symptoms of Parkinson’s disease.
Emma Edwards is a mental health nurse by background but has worked in various roles in psychiatry before joining and the Cornwall Parkinson’s nurse team in 2010. She moved to Plymouth to work as a PD nurse in 2019. Her special interest in Parkinson’s is improving all things mental health for her patients. Emma is currently seconded to the Suicide prevention training team, to improve her knowledge in this area, which she feels is a very much underserved area in Parkinson’s research in the UK.
Get support for your mental health:
People with Parkinson's tell us that they feel their mental health issues can make their physical symptoms of Parkinson's feel worse, and recent research has proven this. That's why it's important to talk to your GP, specialist or Parkinson's nurse about all of your Parkinson's symptoms, whether physical or mental.
As discussed in the pod, talking to others about anxiety, depression or your mental health has been shown to be beneficial. You can also speak to people on Parkinsons UK online forum or via Parkinson’s UK local support groups across the country, including groups specifically for people of working age. Local groups are a great way to meet other people with Parkinson's in your area, find out more about the condition and get support in a friendly and welcoming environment.
Parkinson's UK also have a helpline which is a free confidential service providing support to anyone affected by Parkinson's. You can reach the Helpline on 0808 800 0303.
Our trained advisers, including specialist Parkinson's nurses, can provide information and advice about all aspects of living with Parkinson's.
You can also contact:
the Mind Infoline on 0300 123 3393 for more information on mental health issues, which is open 9am to 6pm, from Monday to Friday.Samaritans on 116 123 at any time for free.Taking part in research was mentioned within the podcast. search for research opportunities on Take Part
Two- current studies are investigating the treatment of Parkinson’s hallucinations or delusions:
CAN-PDP: Cannabidiol (CBD) for people with Parkinson's who experience hallucinations or delusionsTOP HAT: TOP HAT: Trial of a licensed drug as a treatment for hallucinationsMental health and Parkinson’s
Find out more about mental health and Parkinson’s.
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Welcome to part 1 of our special two part podcast to mark World Mental Health Day 2023 on 10th October. Julie Jones and Neil Morrison from NoSPRIG will be joined by Senior Clinical Neuropsychologist Dr Jennifer Foley and mental health specialist Parkinson’s Nurse Emma Edwards
In episode 1, we’ll be taking an in-depth look at anxiety, one of the most common mental health issues facing people with Parkinson’s.
Dr Jennifer Foley is a senior clinical neuropsychologist at the National Hospital for Neurology and Neurosurgery and Honorary Lecturer at UCL Queen Square Institute of Neurology in London. She has a specific interest in patients with movement disorders. She is lead of the Parkinson’s UK Excellence Network for Mental Health and is involved in research trials of new treatments for the cognitive and emotional symptoms of Parkinson’s disease.
Emma Edwards is a mental health nurse by background but has worked in various roles in Psychiatry, before joining and the Cornwall Parkinson’s nurse team in 2010. She moved to Plymouth to work as a PD nurse in 2019. Her special interest in Parkinson’s is improving all things mental health for her patients. Emma is currently seconded to the Suicide prevention training team, to improve her knowledge in this area, which she feels is very much underserved in Parkinson’s research in the UK.
Get support for your mental health:
People with Parkinson's tell us that they feel their mental health issues can make their physical symptoms of Parkinson's feel worse, and recent research has proven this. That's why it's important to talk to your GP, specialist or Parkinson's nurse about all of your Parkinson's symptoms, whether physical or mental.
As discussed in the pod, talking to others about anxiety, depression or your mental health has been shown to be beneficial. You can also speak to people on Parkinsons UK online forum or via Parkinson’s UK local support groups across the country, including groups specifically for people of working age. Local groups are a great way to meet other people with Parkinson's in your area, find out more about the condition and get support in a friendly and welcoming environment.
Parkinson's UK also have a helpline which is a free confidential service providing support to anyone affected by Parkinson's. You can reach the Helpline on 0808 800 0303.
Our trained advisers, including specialist Parkinson's nurses, can provide information and advice about all aspects of living with Parkinson's.
You can also contact:
the Mind Infoline on 0300 123 3393 for more information on mental health issues, which is open 9am to 6pm, from Monday to Friday.Samaritans on 116 123 at any time for free.Taking part in research was mentioned within the podcast. search for research opportunities on Take Part Hub
Two- current studies are investigating the treatment of Parkinson’s hallucinations or delusions:
CAN-PDP: Cannabidiol (CBD) for people with Parkinson's who experience hallucinations or delusionsTOP HAT: TOP HAT: Trial of a licensed drug as a treatment for hallucinationsMental health and Parkinson’s
Find out more about mental health and Parkinson’s.
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This episode focuses on the remarkable research being done by Dr Tom Gilbertson in Dundee, that suggests people with Parkinson’s may be able to reprogram new pathways in their brain to overcome the common symptom of apathy. He also describes his future work and the belief that non-invasive, reversible ultrasound therapies may one day be capable of modifying the function of neurons to provide symptom control.
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Dr Angus Macleod is a Honorary Consultant Neurologist with NHS Grampian specialising in movement disorders inc. Parkinson’s and also a Senior Lecturer at the School of Medicine at the University of Aberdeen.
This podcast focuses on his own research and also his views on the most promising areas of research currently underway.
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
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With the help of Drs Rachel Hardie and Gillian Lyon, we examine Research Ethics - the standard of conduct ensuring scientific integrity and study participants' safety. We'll find out about the process of getting approval for a research project and what patients and the public considering taking part in research should be looking out for before signing up.
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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.
1) Parkinson's Europe website: https://parkinsonseurope.org/2) Parkinson's Europe Engagement Network: https://parkinsonseurope.org/connect-with-us/join-our-engagement-network/ -
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.
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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
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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/
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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.
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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.
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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.
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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
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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
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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.
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We are delighted to have Alan Main on this month’s NoSPRIG podcast, who hails from Aberdeen, but whose 30-year career working for multinational healthcare companies has taken him all round the world and to the very top of the pharma industry. His career has focused mainly on consumer healthcare and medical technology, and he is a former Global President of Bayer Medical Care and Head of Consumer Healthcare at Sanofi.
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
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