For NDIS Staff


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. 

YOP-X 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 YOP-X education and information resources for NDIS staff, with more than one hundred individual stories and experiences collected. 

Featured Article

"I work 15hr shifts and sleep in the truck as I deliver all over the state. I am having problems with having to stop too many times and taking longer to complete certain tasks in the morning and late at night. I was diagnosed just over two years ago but had symptoms up to two to three years prior. It’s getting tougher by the day. I am still working but I’m not sure for how long. To start with my employer was supportive, but that changed when it started to slow my work on my off days..."

What would you like health professionals to know about young onset Parkinson's?

“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

Latest Articles

Employee: Awareness and equality in the workplace

I’d like employers to know that I’m different but I’m the SAME. I can’t but I CAN. I might appear slightly different and struggle with some tasks but with a few modifications in my work environment I CAN continue to deliver the SAME high standard of work.  Enabling this does

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Casual worker: Know about fatigue

Employers should know about the fatigue you suffer when you have young onset Parkinson’s. I am medically retired, and I worked for 1 year after my diagnosis. I did not feel supported by my employer/co-workers. The most debilitating issues with regards to my working capacity were slowness of movement, fatigue/lack

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Unemployed Carpenter: Parkinson’s is not laziness

Employers should know it is not laziness. You are doing your best and going as fast as you can. I continued to work for 6 months after my diagnosis. I did not really feel supported by my employer/co-workers. The most debilitating issues with regards to my working capacity were slowness

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Unemployed: Investigate the ups and downs

Employers need to take the time to investigate the ups and down of Parkinson’s Disease. It’s been a year since I was forced to resign from my work place due to having PD. It’s been hell because I am only 53. I was diagnosed 9 years ago, and I did

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Unemployed: I experienced agression and bullying

Employers should know that young onset Parkinson’s is very different to Parkinson’s diagnosed later in life, with many and varied symptoms. Not everyone is the same. The fatigue is probably the most significant symptom. Consideration needs to be given to making reasonable adjustments to work patterns and not look down

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Unemployed: Know about regular rest periods

Employers should know that regular rest periods assist people with young onset Parkinson’s to maintain their abilities. I left the work force six months prior to diagnosis, and I did not feel supported by my employer/co-workers to remain in my then position. The most debilitating issues with regards to my

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Cleaner: Parkinson’s is debilitating

Employers should know how debilitating young onset Parkinson’s can be. I worked for 6 months after my diagnosis. Doctor suspected much earlier and sought a Neurologist assessment. By the time I saw the Neurologist I had already left my employment. I did not feel supported by the employer. Some co-workers

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