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
Unemployed nurse: YOP is tiring and overwhelming
Employers should know that the tiredness of having young onset Parkinson’s is overwhelming at times along with anxiety about your life as well as it being part of the disease. I continued to work for 7 years after diagnosis and I am no longer working. I felt supported by my
Employee: It’s like the elephant in the room
Employers should know that a staff member with YOPD can still contribute, and be a productive and valuable asset to any organisation. I have been working with young onset Parkinson’s for 6 years and I feel supported by my employer/co-workers. The most debilitating issues with regards to my working capacity
Unemployed labourer: Challenges help you grow
There are challenges to having young onset Parkinson’s, but everybody has challenges. What challenges you can help you to grow as a person. Everything is relative to each individual person and the situation they are in. I’m currently unemployed, but still looking for a job. After my diagnosis I have
Employee: YOP isn’t just physical symptoms
Young onset Parkinson’s isn’t just physical symptoms. Non-motor symptoms can be more detrimental to someone with YOPD. I have been working with young onset Parkinson’s for about 3 years and I’m still working. I haven’t told my employer and co-workers. The most debilitating issues with regards to my working capacity
Government worker: Everyone’s Parkinson’s is different
There are a few things employers should know about young onset Parkinson’s. A diagnosis of Parkinson’s does not mean the person with Parkinson’s is no longer of value to the employer. Don’t assume what is going on with the person with Parkinson’s, speak to them and get the facts. It’s
Retiree: Be aware of unpredictability and symptoms
Tasks required to be undertaken by the employee need to be assessed as ‘do-able’. If difficulty is experienced, the workspace and the way tasks are carried out may need to be modified. Management also need to be aware of the unpredictability and symptoms including on/off times, i.e. what is the
Employee: Employers should know everything about YOP
Employers should know everything about young onset Parkinson’s. I have been working with Parkinson’s for 3 years and I feel supported. I am the employer with young onset Parkinson’s, and the most debilitating issues with regards to my working capacity are tremor/Dyskinesia/Dystonia. Stressful times are the most difficult times. I
Chairperson: Managed Parkinson’s does not have to impact employment
Employers should know that Parkinson’s when managed does not necessarily have to impact employment. We encourage cancer and other disease patients to return to work, so why not make similar adjustments to people with PD. After diagnosis, I spent three years working full time, then part time casual contracting at
Employee: Dizziness and physical limitations
Employers should know about young onset Parkinson’s symptoms such as frequent severe dizziness, low blood pressure, chance of fainting when moving from low to high position, limitations due to tremors in hands and feet, balance issues, slowness and fatigue. I worked in a full time position for 1 year and
