It is important that the NDIS staff and other health professionals meet the needs of clients living with young onset Parkinson’s. To do this, they need to understand the condition, symptoms, issues and the treatments available that enable them to continue to participate in family, work, social and recreational life.

YOPX works to enhance AHPs & NDIS staff access to education and information about young onset Parkinson’s.

Developed as a living lab model, the experiences, ideas, knowledge and daily needs of people with young onset Parkinson’s have underpinned YOPX education and information resources for NDIS staff, with more than one hundred individual stories and experiences collected.

What would you like health professionals to know about young onset Parkinson’s?

Mother and daughter by a window

I would like health professionals to listen to each story. They are all different.

– Person with young onset Parkinson’s

The information you have shared is brilliant and provides our Local Area Coordinators with great information when supporting people living with YOPD. I found the experiences very useful to assist NDIS support staff as it highlights personal life experience which is invaluable. Reading the experiences was like standing in the shoes of someone living with Young onset Parkinson’s.

– James Barker,
NDIS Participant Liaison Officer

Young woman and man sitting in front of an iMac, smiling to the camera

YOP tell their stories

  • Employee: Awareness and equality in the workplace

    I’d like employers to know that I’m different but I’m the SAME.

  • Casual worker: Know about fatigue

    Employers should know about the fatigue you suffer when you have young onset Parkinson’s.

  • Unemployed Carpenter: Parkinson’s is not laziness

    Employers should know it is not laziness.

  • Unemployed Carpenter: We can still contribute in other capacities

    Employers should know that people with Parkinson's can still contribute in some capacity depending of course on what type of employment they work at and how bad the Parkinson's effects the individual.

  • Unemployed: Investigate the ups and downs

    Employers need to take the time to investigate the ups and down of Parkinson’s Disease.

  • Unemployed: I experienced agression and bullying

    Employers should know that young onset Parkinson’s is very different to Parkinson’s diagnosed later in life, with many and varied symptoms.

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Parkinson’s Australia National Conference

6-8 April 2025, National Convention Centre Canberra, ACT