The Parkinson’s NEC-RIG Research Engagement Day
7th November 2024, Darlington Mowden Park Rugby Club
We had a fantastic day at the 2024 NEC-RIG Research Engagement Day in Darlington. We invited people affected by Parkinson’s to hear about research from around the North East. We had an exciting programme of speakers to tell us all about their work in the laboratory, clinical trials and hospitals to better understand Parkinson's, provide better treatment and improve the quality of life of people affected by Parkinson's.
We had a wonderful and inspiring Keynote speech from Dr Lou Wiblin, Consultant Neurologist and movement disorders expert from South Tees NHS Trust. She talked about the amazing work being done in the Middlesbrough and Teesside Parkinson’s services, including the award winning PASU clinic (Parkinson’s and Advanced Systems Unit). This fantastic clinic has helped to improve the quality of care living in the region.
You can watch Dr Wiblin’s talk and questions from the audience on the video below:
Using technology to remotely personalise your medication routine
Emma Packer, PhD Student, Brain and Movement Research Group, Newcastle University
Typically, people with Parkinson’s take medication to improve their mobility and motor symptoms. For People with Parkinson’s, medication regimens tend to be very complex, and are typically adapted based on limited information. Emma discussed how she and her research group used digital health technology (e.g. smartwatch, smartphone, wrist and lower back sensor) to monitor 55 People with Parkinson’s in their everyday life. They also collected information on their medication intake times, mobility, and motor symptoms across seven consecutive days. Using the data collected, they found that following medication intake, individuals walked more quickly, and took fewer steps, but each step length was longer – highlighting the positive impact of medication in People with Parkinson’s. They also found that the technology was user-friendly with participants ‘forgetting’ that devices were being worn, but in future research, we need to make it easier to attach the lower back sensor.
The development of an online support package for carers: the iSupport-PD study
Annette Hand, Professor of Nursing, Northumbria University and Newcastle Hospitals NHS Foundation Trust
Professor Annette Hand talked about a website that is being developed to support care partners of people with Parkinson’s with changes to memory and thinking. This research trial aims to test and evaluate this website, to ensure it is engaging and relevant to all care partners. Unpaid care partners may provide care or support for a partner, friend, or family member with Parkinson’s. This care or support may include emotional or practical support as well as day to day living activities. Memory, thinking and behavioural issues, such as forgetting things, problems concentrating, repetitive activities or finding it difficult to make decisions are common symptoms experienced by people with Parkinson’s. Currently there is a lack of support for care partners of people with Parkinson’s and the memory, thinking and behavioural changes they may experience. An existing accredited digital support tool is being adapted to meet these specific needs.
Improving speech and swallowing for people with Parkinson’s
Sarah Fraser Specialist Speech and Language Therapist, Gateshead Health NHS Foundation Trust & Regional Clinical Lead for the Parkinson's Excellence Network, North East and Yorkshire
Sarah Fraser has been leading a quality improvement project in Gateshead with the aim of improving rapid and urgent access to speech and language therapy for people with Parkinson's presenting with swallowing problems (dysphagia), both during hospital admission and in the community. Interventions focus around early assessment and diagnosis of dysphagia, improving muscle strength and co-ordination for speech and swallowing through Expiratory Muscle Strength Training and also providing information to people with Parkinson’s and their cares to help manage their swallowing safely.
Mental health symptoms in Parkinson’s and other Lewy body conditions
Dr Laura Wright, Research Associate, Newcastle University
Laura Wright talked about her work looking into the changes in the brain that may underlie common mental health symptoms of Parkinson’s. People living with Parkinson’s can often experience mental health symptoms such as depression, anxiety and apathy. These symptoms can occur very early on, even before a diagnosis. They tend to be more common in people living with Parkinson’s and other Lewy body conditions than they do in other progressive conditions, such as Alzheimer’s dementia. Despite this, there is currently very limited understanding of what causes these symptoms. To address this, Laura’s research used functional magnetic resonance imaging (fMRI), a brain scanning technique that allows us to visualise activity in specific areas of the brain, to identify changes in brain activity that may contribute to mental health changes in people living with Parkinson’s. Her work identified a relationship between mood related symptoms and changes in connectivity between specific brain regions affected by Parkinson’s. This study is important, as identifying changes in the brain that can be targeted in future clinical trials aimed to alleviate these symptoms, which could improve the quality of life of people living with Parkinson’s.
Understanding the relationship between Parkinson's physical and non-motor symptoms
Philip Hodgson Specialist Physiotherapist, Tees Esk and Wear Valleys NHS Foundation Trust
Philip Hodgson carried out an online survey to investigate whether individuals perceive a connection between physical and psychological symptoms in Parkinson’s. A UK-wide survey of 251 people with Parkinson’s and 61 family/carers was conducted. The survey focused on reporting both diagnosed and undiagnosed psychological symptoms and the impact of these symptoms. Results have shown that a large proportion of people with Parkinson’s reported at least one diagnosed or undiagnosed psychological symptom, such as anxiety and depression. This work concluded that people with Parkinson’s and their carers perceive an interaction between physical and psychological symptoms in Parkinson's. Psychological symptoms frequently start before a Parkinson's diagnosis and are often under-recognised. Improved awareness of the potential link between physical and psychological symptoms may help to improve assessment, and onward referral to other specialists to enhance care.
Can attention and emotion recognition tests help make it easier to tell the difference between Progressive Supranuclear Palsy and Parkinson’s?
Dr Alexis Cheviet Research Associate, University of Durham
Dr Cheviot talked about his project which aims to measure attention and memory in people with progressive supranuclear palsy (PSP) or Parkinson’s. Previous research has suggested that people with PSP have problems with understanding the relationship between vision and location, and short-term memory, that people with Parkinson’s do not experience. The current study is extending this research by comparing a group of people with PSP with a group of people with Parkinson’s, and a group of similarly-aged people who have no neurological disease. He is using a range of tests that measure attention, emotion, memory, and vision.
Keep On Keep Up for Parkinson’s Disease exercise study
Dr Gill Barry Associate Professor, Northumbria University
Dr Barry discussed her work with Keep on Keep Up (KOKU), an NHS approved digital health programme. This has previously been designed to engage older people in safe and effective balance, strength and falls prevention exercises. The aim of this study was to explore the acceptability and usability of the KOKU digital health programme for people with Parkinson’s. Balance problems are common in people with Parkinson's, contributing to walking difficulties, reduced independence, and increased falls risk. Balance training can be effective; however, the exercises alone are often considered monotonous for people to perform. This tablet device aimed to deliver engaging exercises to improve balance, strength and fitness. KOKU starts with simple chair-based exercises (e.g. foot tapping) and progresses to incorporate both physical and thinking tasks. KOKU is designed to support self-management through strength and balance exercises delivered on a mobile tablet device. The study is funded by Parkinson’s UK and onto the final phase to pilot the new version of Keep on Keep Up for Parkinson’s (KOKU4PD) which has been co-designed by people with Parkinson’s, Clinicians and App developers. The aim of the app is to encourage strength and balance in people with Parkinson’s in a home based setting.
Improving care of people with Parkinson's admitted to hospital
Florence Gerakios, Clinical Trials Associate & PhD Student, Newcastle University
Florence Gerakios talked about her work on on the DELIRIUM-PD study, which aims to improve the recognition of delirium in people with Parkinson’s admitted to hospital. Delirium is a serious but often treatable condition that can suddenly start in someone who is unwell. People with delirium may appear confused, experience hallucinations, have difficulty following conversations or be unusually sleepy. These features can also occur in people with Parkinson’s, making delirium more difficult to identify. In the first study of its kind, Florence found 2 out of 3 of people with Parkinson’s experienced a delirium compared to 1 out of 3 in older adults without Parkinson’s. People with Parkinson’s and delirium were also more likely to need professional assistance, such as a stay in a care home or 24-hour home care, compared to those who did not have delirium. Therefore, it is vital that we develop ways of identifying delirium in Parkinson’s. Flo is now looking at how we can help healthcare staff better recognise delirium in people with Parkinson’s admitted to hospital as part of her PhD.
Finally, we would like to give a huge thank you to everyone who was involved in organising, speaking and helping the day run smoothly!
Darlington Parkinson’s Research Day
Thursday 7th November 2024 | Darlington Mowden Park Rugby Club
Photgraphs and video courtesy of David Newton
