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 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

  • It’s hard work but I keep fighting

    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 20 years.

  • Trialling red light therapy

    I was diagnosed with Young Onset Parkinson’s at the age of 53, and I have been living with the symptoms of young onset Parkinson’s for 4.5 years.

  • Trying melatonin

    I was diagnosed with Young Onset Parkinson’s at the age of 51, and I have been living with the symptoms of young onset Parkinson’s for 7 years.

  • Cramping and muscle stiffness are major factors in my lack of sleep

    I was diagnosed with Young Onset Parkinson’s at the age of 30, and I have been living with the symptoms of young onset Parkinson’s for 10 years.

  • 40 year old not satisfied with sleep

    I was diagnosed with Young Onset Parkinson’s at the age of 40, and I have been living with the symptoms of young onset Parkinson’s for 6 years.

  • Lack of energy and exhaustion in morning

    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 14 years.

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Parkinson’s Australia National Conference

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