Researchers from SAHMRI’s Wellbeing and Resilience Centre, in partnership with The NeuroTech Institute and Parkinson’s Australia, have developed an app to help the 20,000 Australians aged less than 50 who are living with Young Onset Parkinson’s Disease.
Developed as a ‘living lab’ model, the Young Onset Parkinson’s Exchange (YOP-X) is a free-to-download app and resource hub uniquely shaped by the first-hand knowledge and experiences of Australians living with Young Onset Parkinson’s Disease (YOPD).
Despite the widespread misconception that Parkinson’s Disease only affects older people, one in five of those afflicted experience symptoms before 50 years of age. Over the past decade the incidence of YOPD has increased by 40 per cent, with one Australian diagnosed every three hours.
Cognitive Neuroscientist Dr Fiona Kerr, the Founder and CEO of The NeuroTech Institute, says the app will prove a critical support tool for those affected by the disease.
“People with YOPD are in the prime of their lives,” she said.
“It’s a time when they should be at their most productive, juggling competing demands including employment, family and school commitments, sporting and various social events and activities.
“People living with YOPD must not only face times of debilitating motor impairment but must also contend with non-motor symptoms such as anxiety, depression, apathy and sleep disorders that can substantially compromise their quality of life.
“The combination of support provided by the YOP-X app and medical care offers people with YOPD a holistic approach to addressing changes involving their work, relationships, sleep, physical ability and mental health.”
Joep van Agteren, the Research Lead at SAHMRI’s Wellbeing & Resilience Centre says the YOP-X platform will allow users to take greater control of their lives while also promoting positive behavioural change.
“Current data involving Australians living with Parkinson’s under 65 years of age highlight a lack of information, education and understanding of the disease, its symptoms and progression, with a need for greater support and understanding to enhance social, community and economic participation,” he said.
“YOP-X provides people with easily accessible information about their disease, videos on various topics, strategies to address their mental health and wellbeing, exercises designed to increase their strength and balance and a series of educational videos by a Relationship Therapist.
“The app also offers self-assessment capabilities and issues prompts and reminders to help users establish routine in their daily lives, helping them to push past apathy,” Mr van Agteren said.
After initially disregarding his tremors, attributing them to too much coffee and stress, father-to-two and former school principal Todd Murfitt received a life-changing diagnosis of YOPD at the age of 35.
“It's not easy to hear you've been diagnosed with what is commonly considered an ‘old person's disease’, especially when you're in the prime of your life,” he said.
“An older person diagnosed with Parkinson's Disease is in a very different stage of life compared to a person living with YOPD. Trying to find information on how the disease might impact my children and family, and the substantial financial implications I was set to face, was very difficult.
“The YOP-X app, which pulls all of this information together into the one place, will become a go-to resource for people with YOPD. It will further inform this community about their local Parkinson's Disease organisations and encourage users to reach out for support.”
Todd and others living with YOPD played a vital role in shaping the development of the YOP-X app tools and resources.
“Being invited to participate in the YOP-X app focus group was very special to me. We were a group of people living each day with YOPD who were tasked with directing what this app would look like, its features, and how far it would reach,” he said.
Six key pillars form the foundation of all the YOP-X app-related information and resources including mental health and emotional wellbeing; employment and legal; sex, relationships and intimacy; sleep, fatigue and maximising energy; exercise and nutrition; and changing your brain.
According to Executive Director & Board Member of Parkinson’s South Australia & Northern Territory (PSANT), Olivia Nassaris, information contained in the app is both relevant to, and can be used by anyone living with, Parkinson’s Disease irrespective of their age, as well as those contending with other neurological or movement disorders.
“Features of the YOP-X App and website include an Australian-first too – the National Disability Insurance Scheme (NDIS) Wallet – which provides an efficient way to consolidate everything the NDIS needs to know about someone living with YOPD, to consider an NDIS application,” she said
“YOP-X also equips healthcare professionals and NDIS-contracted providers with the knowledge they require to better meet, and optimally fulfil, the needs of their clients living with neurological degenerative conditions.”