It is important that the NDIS staff and other health professionals meet the needs of clients living with young onset Parkinson’s. To do this, they need to understand the condition, symptoms, issues and the treatments available that enable them to continue to participate in family, work, social and recreational life.

YOPX works to enhance AHPs & 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

  • Intermittent daytime sleeping

    I was diagnosed with Young Onset Parkinson’s at the age of 36, and I have been living with the symptoms of young onset Parkinson’s for 6+ years.

  • Unsatisfied with sleep levels

    I was diagnosed with Young Onset Parkinson’s at the age of 45, and I have been living with the symptoms of young onset Parkinson’s for 9 years.

  • My sleep patterns sometimes affect my partner

    I was diagnosed with Young Onset Parkinson’s at the age of 44, and I have been living with the symptoms of young onset Parkinson’s for 8 years.

  • I only get enough sleep with sleeping pills

    I was diagnosed with Young Onset Parkinson’s at the age of 44, and I have been living with the symptoms of young onset Parkinson’s for 7 years.

  • Sleep patterns have deteriorated

    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 13 years.

  • Feeling like I am missing out on sleep

    I was diagnosed with Young Onset Parkinson’s at the age of 47, and I have been living with the symptoms of young onset Parkinson’s for 11 years.

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Parkinson’s Australia National Conference

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