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

  • Heavy machine maintainer: We can still work unless it’s a safety risk

    Employers should know that people with young onset Parkinson’s can still work unless there are cognitive issues leading to safety risks.

  • Health worker: My environment is supportive

    I work in health so people understand the condition and are supportive.

  • Employee: We are productive, functional and valuable

    Employers should know that employees affected by young onset Parkinson’s are still productive and functional, valuable and simply require some readjustment support and allowances made, some variation to roles perhaps, if symptoms progress, including working from home part of the time.

  • Ex-Navy: Parkinson’s can be invisible and debilitating

    Employers should know that the non-visible aspects of Parkinson’s Disease are just as debilitating as the visible ones.

  • Mining industry worker: More funding and support for Parkinson’s required

    Employers should know about the symptoms of young onset Parkinson’s and awareness on how to approach employees.

  • Employee: I was forced into retirement

    Employers should know about young onset Parkinson’s so that they can put into place changes to work stations and modify roles as required.

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

Parkinson’s Australia National Conference

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