Overview
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
What would you like health professionals to know about young onset Parkinson's?
– 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
Heavy machine maintainer: We can still work unless it’s a safety risk
Employers should know that people with young onset Parkinson’s can still work unless there are cognitive issues leading to safety risks. I was just forced into retirement last year at age 58. I continued to work for 5 years after my diagnosis. I felt very much supported by my employer/co-workers,
Health worker: My environment is supportive
I work in health so people understand the condition and are supportive. I have been working for 6 months since my diagnosis and for at least 12 to 18 months with symptoms. I feel supported by my employer/co-workers. Allied health staff understand the condition which makes it much easier. The
Employee: We are productive, functional and valuable
Employers should know that employees affected by young onset Parkinson’s are still productive and functional, valuable and simply require some readjustment support and allowances made, some variation to roles perhaps, if symptoms progress, including working from home part of the time. I’m not working, and I continued to work for
Ex-Navy: Parkinson’s can be invisible and debilitating
Employers should know that the non-visible aspects of Parkinson’s Disease are just as debilitating as the visible ones. Not currently working and I didn’t continue to work after my diagnosis. Ex-Navy. The support from those I served with has been stellar. The support from the Navy itself has been average.
Mining industry worker: More funding and support for Parkinson’s required
Employers should know about the symptoms of young onset Parkinson’s and awareness on how to approach employees. I am no longer working. I was working between the ages of 50 to 60 with a form of parkinsonism, induced by incorrect diagnosis of Parkinson’s disease and prescription of Parkinson’s medication. I
Employee: I was forced into retirement
Employers should know about young onset Parkinson’s so that they can put into place changes to work stations and modify roles as required. Not force them to retire on the grounds of ill health as in my case. I am no longer working, and I worked for 2.5 years after
Nurse: I am still capable of doing the job
Employers should know that I am still very capable of doing the job, but shift work can add extra hurdles with increased fatigue. I am currently working. I have had symptoms for about two years but was diagnosed seven months ago. I work in the health care industry so have
Employee: We are still the same person, but with more assistance needed
Employers should know that people with young onset Parkinson’sare still the same person however we may need some assistance to be able to preform our job as before. It could be less hours or a change in duties. I have been working with young onset Parkinson’s for 3 years and
Employee: Know how to assist
Employers should know the possible affect of young onset Parkinson’s on workers and how to assist. I have worked for 5 years with young onset Parkinson’s. I am still working and hope to until I retire. I feel supported by my employer/co-workers. The most debilitating issues with regards to my
