Digital resource launched for Aussies with Young Onset Parkinson's

A free-to-download app and resource hub will help to support the 20,000+ young Australians (aged <50 years) living with Young Onset Parkinson’s disease (YOPD).

Developed as a ‘living lab’ model, the Young Onset Parkinson’s Exchange (YOP-X) has been shaped by the first-hand knowledge and experiences of Australians living with YOPD.

Available to patients, carers, healthcare professionals and NDIS-contracted providers, the YOP-X app can now be downloaded for free from the App Store or Google Play.

Despite the widespread misconception that Parkinson’s disease only affects older people, one in five of those afflicted actually experience symptoms before 50 years of age, and are classified as living with YOPD. The incidence of YOPD has increased by 40% over the past decade, with one Australian diagnosed every three hours.^1–3

Cognitive neuroscientist Dr Fiona Kerr, founder and CEO of The NeuroTech Institute and member of the YOP-X project working party, said the YOP-X app will prove a critical support tool for those affected by the disease.

“YOPD patients are in the prime of their lives — 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, including 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 YOPD patients a holistic approach to addressing changes involving their work, relationships, sleep, physical ability and mental health,” Dr Kerr said.

The YOP-X platform will allow YOPD patients to take greater control of their lives, while also promoting positive behavioural change. That’s according to Joep van Agteren, Research Lead, Wellbeing and Resilience Centre, South Australian Health & Medical Research Institute (SAHMRI) and member of the YOP-X project working party.

“Current data involving Australians living with Parkinson’s under 65 years of age highlights 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,” van Agteren said.

“YOP-X provides patients with easily accessible information pertaining to their disease, videos on various topics, including 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 YOPD patients establish routine in their daily lives, and to push past apathy.”

After initially disregarding his tremors, attributing them to too much coffee and stress, Adelaide father-of-two and former school principal Todd, 39, received a life-changing diagnosis of YOPD at age 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,” Todd 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 of patients about their local Parkinson’s disease organisations, and encourage users to reach out for support.”

Todd, together with other YOPD patients, 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 patients living each day with YOPD, who were tasked with directing what this app would look like, its features and how far it would reach,” Todd said.

Six key pillars form the foundation of the YOP-X app, 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 Olivia Nassaris, Executive Director and board member of Parkinson’s South Australia & Northern Territory (PSANT), 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, providing an efficient way to consolidate everything the NDIS needs to know about someone living with YOPD, to consider an NDIS application,” Nassaris 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.”

References

1. Shake it Up Australia Foundation. About Parkinson's. [cited March 2021]; Available from: https://shakeitup.org.au/understanding-parkinsons/.
2. Parkinson's Australia. Young Onset Parkinson's. [cited March 2021]; Available from: https://www.parkinsons.org.au/young-onset-parkinson-s.
3. Deloitte. Living with Parkinson's Disease - Challenges and positive steps for the future. 2011 [cited March 2021]; Available from: https://www2.deloitte.com/au/en/pages/economics/articles/living-with-parkinsons-disease.html.

Top image credit: ©stock.adobe.com/au/viperagp