New app supporting Aussies living with young onset Parkinson’s disease

There is a widespread misconception that Parkinson’s Disease only affects older people, however, one in five of those afflicted actually experience symptoms before 50 years of age, who are classified as living with young onset Parkinson’s disease (YOPD).

Developed as a ‘living lab’ model, the Young Onset Parkinson’s Exchange, or YOP-X, is a free app that provides information and first hand knowledge and experiences of Australians living with YOPD.

The app assists not only people with YOPD, but also their primary support people, healthcare professionals, and National Disability Insurance Scheme (NDIS) providers.

Data has shown that YOPD has increased by 40 percent since 2014 in Australia, with one Australian diagnosed every three hours.

Cognitive Neuroscientist, Founder and Chief Executive Officer of the NeuroTech Institute, and member of the YOP-X project work party, Dr Fiona Kerr, says that the app will be a critical support tool for those living with 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,” explains Dr Kerr.

“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.”

The YOP-X app will support patients to take greater control of their lives while also promoting behavioural changes that can have a positive effect on living with Parkinson’s disease.

Research Lead at the Wellbeing and Resilience Centre at South Australian Health and Medical Research Institute (SAHMRI) and member of the YOP-X project working party, Joep van Agteren, says that there is a lack of available information around Parkinson’s which this app can assist with.

“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 Agteren.  

“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.”

Australians with YOPD have been vital in shaping the development of the YOP-X app tools and resources.

One patient, Todd, a former school principal in Adelaide, was diagnosed with YOPD at 35. He had initially put down his tremors to coffee and stress, however, the actual diagnosis was not easy to hear when he was in the prime of his life.

“An older person diagnosed with Parkinson’s Disease is in a very different stage of life compared to a person living with YOPD,” says Todd.

“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 was among other YOPD patients that were invited to participate in focus groups for the app, and helped direct development around how the app would look, the features it had, and how far the app would reach.

The app consists of six key pillars to form the foundation of the app 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.

Executive Director and Board Member of Parkinson’s South Australian and Northern Territory (PSANT), Olivia Nassaris, says the the great thing about the app is that is is relevant and useful to anyone living with Parkinson’s disease no matter their age, as well as people that are living 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,” says Ms Nassaris.

“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.”

To learn more about the YOP-X project, head to the Young Onset Parkinson’s Exchange website or download the app for free from the App Store for Apple devices or Google Play for Android devices.