A new digital platform to help young Australians living with an incurable movement disorder

More than 20,000 young Aussies (under the age of 50) living with an incurable movement disorder should take advantage of the launch of Australia’s first digital support platform today (Thursday, April 8, 2021), ahead of World Parkinson’s Day (Sunday, April 11, 2021). ).

Developed as a ‘living lab’ model, Young Onset Parkinson’s Exchange (YOP-X) is a free application and resource hub uniquely shaped from the knowledge and experience of Australians living with Young Onset Parkinson’s Disease (YOPD)).

Available to patients, their primary caregivers, healthcare professionals and NDIS contractors, 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 sufferers actually has symptoms before age 50, which are classified as people living with YOPD. In the last decade, the incidence of YOPD has increased by 40 percent, and one Australian is diagnosed every three hours.

According to the Cognitive Neuroscientist, founder and CEO of the NeuroTech Institute and a member of the working group for The Exchange On Parkinson’s eXchange (YOP-X) project, dr. Fiona Kerr of Adelaide, the YOP-X app will prove to be a key tool to support those affected by the disease.

Patients with YOPD are at the peak of their lives – an age when they should be in their productivity, juggling competitive demands, including employment, family and school commitments, sports, and various social events and activities. People living with YOPD have to deal not only with times of debilitating motor impairments, but they also have to deal with non-motor symptoms, including anxiety, depression, apathy, and sleep disorders that can significantly compromise their quality of life. The combination of support provided by the YOP-X app and medical care offers patients with YOPD a holistic approach to addressing changes that include their work, relationships, sleep, physical abilities, and mental health. “

Dr. Fiona Kerr, Cognitive Neuroscientist, Founder and CEO of the NeuroTech Institute

The YOP-X platform will allow patients with YOPD to take greater control of their lives while promoting positive behavioral change, explained Research Lead, Wellbeing & Resilience Center, South Australian Institute for Health and Medical Research (SAHMRI) and a member of YOP- Project Working Group X, Mr. Joep van Agteren, Adelaide.

“Current data on Australians living with Parkinson’s disease under the age of 65 highlight a lack of information, education and understanding of the disease, its symptoms and progression, with the need for greater support and understanding to improve social, societal and economic participation.

“YOP-X provides patients with easily accessible information related to their illness, videos on a variety of topics, including strategies to address their mental health and well-being, exercises designed to increase their strength and balance, and a range of educational videos by the therapist concerned. The app also offers self-assessment opportunities and issues instructions and reminders to help YOPD patients establish a routine in their daily lives and suppress apathy from the past, ”said Mr. van Agteren.

After initially ignoring his shivering, attributing them to too much coffee and stress, the father of two and former school principal, Todd, 39, of Adelaide, was diagnosed with YOPD which changed his life at the age of 35.

“It is not easy to hear that you have been diagnosed with a disease that is usually considered an” old person’s disease “, especially when you are in your prime.

“An elderly person diagnosed with Parkinson’s disease is at a very different stage of life compared to a person living with YOPD. Trying to find information on how the disease could affect my children and family, as well as the significant financial implications I had to face, was very difficult, ”Todd said.

“The YOP-X app, which brings all this information together, will become a resource for people who have YOPD. It will further inform this community of patients about their local Parkinson’s disease organizations and encourage users to seek support. “

Todd, along with other YOPD patients, has played a vital role in shaping the development of tools and resources for the YOP-X application.

“I was invited to participate in the focus group of the YOP-X application, it was very special for me. We were a group of patients living with YOPD on a daily basis who were tasked with guiding what this app would look like, its features, and how far it would go, ”Todd said.

The six key pillars form the basis of all information and resources associated with the YOP-X application, including mental health and emotional well-being; employment and legal; sex, relationships and intimacy; sleep, fatigue and energy maximization; exercise and diet; and change your brain.

According to the CEO and board member, Parkinson’s South Australia and Northern Territory (PSANT), Olivia Nassaris, Adelaide, the information contained in the app is relevant and can be used by anyone living with Parkinson’s disease (regardless of their age), as well as those who are struggling with other neurological disorders or movement disorders.

Features of the YOP-X app and website also include the Australian – National Disability Insurance Program (NDIS) wallet, which provides an effective way to bring together everything NDIS needs to know about someone living with YOPD to consider NDIS application. YOP-X also equips healthcare professionals and service providers contracted with NDIS with the knowledge they need to better meet and optimally meet the needs of their clients living with neurological degenerative conditions. “

Olivia Nassaris, CEO and board member, PSANT