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

  • Parkinson’s makes me feel uncomfortable meeting people

    Being in an intimate relationship is very important to me, and I am not currently in an intimate relationship.

  • Emotional barriers to an intimate relationship

    Being in an intimate relationship is very important to me, even after 35 years of marriage.

  • Difficulties introducing Parkinson’s while dating

    Intimacy has always been very important for me, and currently I am in an intimate relationship.

  • No time for myself leads to resentment

    Being in an intimate relationship is very important to me.

  • Parkinson’s creates barriers when dating

    I’d like it to be important to me to be in an intimate relationship.

  • Intimate relationships are not important to me

    Being in an intimate relationship is not at at all important to me, and I am not currently in an intimate relationship.

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

Parkinson’s Australia National Conference

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