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

  • Parkinsons & post menopause

    Being in an intimate relationship is extremely important to me, and I am currently in a long-term relationship.

  • Relationship Therapists should be aware of Parkinson’s and Q10

    Being in an intimate relationship is very, very important to me, having the love and trust in place helps with the daily grind of Parkinson’s Disease.

  • Government Employee: Symptoms are physical & non physical

    What should employers know about young onset Parkinson’s?

    Should be aware of the variety of symptoms, both physical & non physical and a list of ways to "manage"/cater for these symptoms and where to gain and apply for Allied Health etc support to adjust working conditions to enable best performance outcomes for employee and employer.

    If you are currently working, how long have you been working with young onset Parkinson’s?

    I gave up working before retirement age

    If you are no longer working, how long did you continue to work after your diagnosis?

    Approximately 8 years

    Did you/do you feel supported by your employer/co-workers?

    I have always advocated & educated employees about my needs.

  • Employee: Symptoms are more than just shaking

    Employers should know about young onset Parkinson’s and that it’s not just shaking of hands.

  • Employee: It is a daily changing condition

    Employers should know about young onset Parkinson’s, and that it can be a changing condition daily.

  • Employee: I have worked full time for 10 years since my diagnosis

    Employers need to understand, and often do, that all people are individuals who have unique symptoms, rates of disease progression and responses to their condition.

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

Parkinson’s Australia National Conference

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