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

  • My body temperature feels different since PD onset

    I was diagnosed with Young Onset Parkinson’s at the age of 46, and I have been living with the symptoms of young onset Parkinson’s for 4.5 years.

  • Average of 4 hours sleep each night

    I was diagnosed with Young Onset Parkinson’s at the age of 48, and I have been living with the symptoms of young onset Parkinson’s for 3 years.

  • Affected by misdiagnoses

    I was diagnosed with young onset Parkinson’s at the age 54, but had misdiagnosed Parkinson's symptoms for at least 5 years prior to this.

  • Insomnia affects my sleep

    I was diagnosed with Young Onset Parkinson’s at the age of 43, and I have been living with the symptoms of young onset Parkinson’s for 10 years.

  • Continence and fatigue barriers

    1.

  • DBS treatment is helpful

    Being in an intimate relationship is extremely important to me, non-negotiable.

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

Parkinson’s Australia National Conference

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