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.
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
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
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
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
Employers should know that people with Parkinson’s can still contribute in some capacity depending of course on what type of employment they work at and how bad the Parkinson’s effects the individual. I haven’t been working for at least 2 years, and I continued to work for a couple of
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
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
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
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
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