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Digital platform supporting young Aussies with Parkinson’s Disease

Just in time for World Parkinson’s Day on Sunday 11 April 2021, an Australian-first digital support platform, the Young Onset Parkinson’s Exchange (YOP-X) app, has been launched and is set to provide critical support to those affected by the disease.

Developed as a ‘living lab’ model, the YOP-X app is free to download from the App Store or Google Play and offers a resource hub that is uniquely shaped by the first-hand knowledge and experiences of Australians living with Young Onset Parkinson’s Disease (YOPD).

The YOP-X app is available to patients, their primary support people (carers), healthcare professionals and NDIS-contracted providers.

“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, sport, and various social events and activities,” says Cognitive Neuroscientist, Founder and CEO, The NeuroTech Institute, and member of The Young Onset Parkinson’s eXchange (YOP-X) project working party, Dr Fiona Kerr.

“People living with YOPD must not only face times of debilitating motor impairment, but must also content 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.”

According to Research Lead, Wellbeing & Resilience Centre, South Australian Health & Medical Research Institute (SAHMRI), and member of the YOP-X project working party, Mr Joep van Agteren, the YOP-X app will allow YOPD patients 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 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,” says Mr van Aateren.

“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.”

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.
  • Changing your brain.

According to Executive Director & Board Member, 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, providing an efficient way to consolidate everything the NDIS needs to know about someone living with YOPD, to consider an NDIS application.

“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,” says Ms Nassaris.

To learn more about the YOP-X project, head to youngonsetparkinsons.org.au or download the app for free from the App Store for Apple devices or Google Play for Android devices.