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

YOPX works to enhance 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: YOP isn’t just physical symptoms

    Young onset Parkinson’s isn’t just physical symptoms.

  • Government worker: Everyone’s Parkinson’s is different

    There are a few things employers should know about young onset Parkinson’s.

    A diagnosis of Parkinson's does not mean the person with Parkinson’s is no longer of value to the employer.

  • Retiree: Be aware of unpredictability and symptoms

    Tasks required to be undertaken by the employee need to be assessed as 'do-able'.

  • Employee: Employers should know everything about YOP

    Employers should know everything about young onset Parkinson’s.

  • Chairperson: Managed Parkinson’s does not have to impact employment

    Employers should know that Parkinson's when managed does not necessarily have to impact employment.

  • Employee: Dizziness and physical limitations

    Employers should know about young onset Parkinson’s symptoms such as frequent severe dizziness, low blood pressure, chance of fainting when moving from low to high position, limitations due to tremors in hands and feet, balance issues, slowness and fatigue.

Atmospheric, out of focus image of a convention in progress.

Parkinson’s Australia National Conference

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