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: We are functional and have drive & passion for our work

    Employers should know that young onset Parkinson’s employees can still be just as functional and have as much drive and passion for their work as they always have.

  • Employee: Manager asked “What’s that?” in relation to Parkinson’s

    It would help for employers to learn what Parkinson’s is.

  • Employee: My manager didn’t believe me

    Employers should know that people with young onset Parkinson’s might be slower but we still want to work and feel useful.

  • Teacher: Reduced hours and modified environments help

    Employers should know that people with young onset Parkinson’s can still be employed (we don’t suddenly become incompetent) and how to modify work environments to accommodate specific needs.

  • Employee: Everyone is equal

    Employers should know that people with young onset Parkinson’s (or most of us) can do exactly the same as people without.

  • Government employee: No one person is the same

    Employers should know that Parkinson’s has many symptoms and no one person is same.

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

Parkinson’s Australia National Conference

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