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

  • Hard to get into right frame of mind

    Being in an intimate relationship is very important to me, and I am currently in an intimate relationship.

  • Experiencing loneliness

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

  • Emotional intimacy more important than phyiscal intimacy

    Being in an intimate relationship is not important for me for the immediate future, but long term it's very important.

  • Medications made it worse

    Regarding the importance of being in an intimate relationship to me, I am married, but no longer sleep in same room with my husband.

  • Leg cramping and restlessness

    Being in an intimate relationship is important to me, and I am currently in an intimate relationship.

  • Intimacy is better than ever despite setbacks

    Being in an intimate relationship is a real blessing, having constant love and not feeling alone in this.

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

Parkinson’s Australia National Conference

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