Exploring and understanding the scope and value of the Parkinson’s Nurse in the UK (The USP Project)
Parkinson’s Nurse Specialists (PNS) have been in post for 30 years, however, there is limited evidence to show their effectiveness. More information is needed to provide an evidence base for Parkinson’s nurses.
We want to understand the role and scope of these specialist nurses, the similarities and differences between the different models of nursing and how they impact on the lives of people with Parkinson’s and their loved ones.
The study is supported by funding from Parkinson’s UK.
Want to take part?
If you would like to take part in this research, please the website below. Depending on whether you are a specialist nurse, a person with Parkinson’s or a family member or carer of a person with Parkinson’s, there will be information about what taking part in this study will involve.
Moderate to severe dysarthria makes face-to-face communication challenging. Voice activated technologies, like Google Assistant, are extremely useful, but difficult to use.
Project Euphonia is ‘training’ Google Assistant to understand dysarthric speech and ‘translate’ it as it is spoken. The words are then displayed on a smartphone or AAC. This allows some people to keep talking for longer at the same speed – and to be understood.
If you know someone with dysarthria who can record 29 or more phrases, or for more information, contact firstname.lastname@example.org, call 07898 721278, or click here.
This survey is investigating the quality of care received by people with Parkinson’s who experience eating, drinking and swallowing difficulties, when admitted to hospital.
Please complete this survey if you or a relative/somebody you care for has Parkinson’s and has experienced eating, drinking and swallowing difficulties whilst admitted to hospital.
Find out more here: https://www.ncepod.org.uk/Dysphagia.html
Motor Symptoms and Perceived Well-being in Parkinson’s Disease
Although greater insights about non-motor symptoms in PD have occurred over the last couple of decades, motor symptoms remain the diagnostic signature for PD. The cardinal signs of PD include: resting tremor, rigidity, bradykinesia (slow movement), postural instability (balance problems), and walking/gait problems. Although these symptoms in isolation or in combination are defining clinical PD symptoms, they can vary greatly from individual to individual – as it relates to how symptoms may be present and in terms of their intensity, frequency, and progression, and how the symptoms may impact quality of life.
Although there have been improvements in the management of motor symptoms, it remains of great importance to continue research focused on understanding the experience of motor symptoms through the eyes and voice of the person with PD so we can improve treatment approaches. Further, it is important to assess the presence of motor symptoms within specific subgroups, including, but not limited to, tremor predominant subgroups and axial-rigid (stiffness and changes in coordination stability) predominant subgroups in relation to age and disease duration, and to evaluate the impact of these symptoms, whether individually or combined, on quality of life.
All Parkinson’s Movement and The Cure Parkinson’s Trust surveys are fully anonymised.
Everyone with Parkinson’s has their own combination of symptoms – and this impacts research and clinical trials. It therefore helps define Parkinson’s from your perspectives.
We need your help, please try and answer as many questions as you possibly can. Your views, opinions and experiences will shape research.