The North of Scotland Parkinson’s Research Podcast Series

World Parkinson's Day Special - Patient and Public Involvement

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.

Bone Health: Dr Alistair Mackett, Consultant Geriatrician specialising in Parkinson's at Addenbrookes Hospital and Regional Clinical Lead for the East of England Parkinson's Excellence Network

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
 
 
 
 

Self-management in Parkinson's - Dr Bhanu Ramaswamy and Dr Alison Williams

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.

Exercise - Ledia Alushi Agley, Specialist Physiotherapist in Neurodegenerative Conditions

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.

Getting Parkinson's Messaging Right: Prof D Dexter, Dr Angus Macleod, Iain Stephen Morrison

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. 

Delirium in Parkinson's - Dr Rachael Lawson, Senior Research Fellow and Senior Lecturer, University of Newcastle

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.  

Facial Physio - Dr C Terry & Dr F French, London Met. University and Patient Participant Neil Morrison

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/

Why is depression so common in Parkinson’s and how best to manage it.

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.
 
 
 

Anxiety in Parkinson’s - what do we know, what can we learn from research, and practical tips for dealing with the problem.

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.

Apathy with Dr Tom Gilbertson, Senior Clinical Lecturer and Honorary Consultant Neurologist, University of Dundee.

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.