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

  • Nurse: I am still capable of doing the job

    Employers should know that I am still very capable of doing the job, but shift work can add extra hurdles with increased fatigue.

  • Employee: We are still the same person, but with more assistance needed

    Employers should know that people with young onset Parkinson’sare still the same person however we may need some assistance to be able to preform our job as before.

  • Employee: Know how to assist

    Employers should know the possible affect of young onset Parkinson’s on workers and how to assist.

  • Unemployed nurse: YOP is tiring and overwhelming

    Employers should know that the tiredness of having young onset Parkinson’s is overwhelming at times along with anxiety about your life as well as it being part of the disease.

  • Employee: It’s like the elephant in the room

    Employers should know that a staff member with YOPD can still contribute, and be a productive and valuable asset to any organisation.

  • Unemployed labourer: Challenges help you grow

    There are challenges to having young onset Parkinson’s, but everybody has challenges.

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

Parkinson’s Australia National Conference

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