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 (I need to update this!) 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 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/

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 delusions TOP HAT: TOP HAT: Trial of a licensed drug as a treatment for hallucinations Mental health and Parkinson’s Find out more about mental health and Parkinson’s.      

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 delusions TOP HAT: TOP HAT: Trial of a licensed drug as a treatment for hallucinations Mental health and Parkinson’s Find out more about mental health and Parkinson’s.

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.  

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  

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.  

In this episode we cover everything from dancing the Cha-cha to virtual reality, as we hear the innovative lengths Dr Will Young and his team go to in their research into the psychology behind freezing of gait and their development of strategies to overcome it.  

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/