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
I only get enough sleep with sleeping pills
I was diagnosed with Young Onset Parkinson’s at the age of 44, and I have been living with the symptoms of young onset Parkinson’s for 7 years. I don’t get enough sleep. I am averaging 4 hours of sleep at night and I don’t sleep during the day because I
Sleep patterns have deteriorated
I was diagnosed with Young Onset Parkinson’s at the age of 46, and I have been living with the symptoms of young onset Parkinson’s for 13 years. I am not at all satisfied with the amount of sleep I am getting. I am averaging 5-6 hours of broken sleep at
Feeling like I am missing out on sleep
I was diagnosed with Young Onset Parkinson’s at the age of 47, and I have been living with the symptoms of young onset Parkinson’s for 11 years. I know I’m not getting enough sleep and I am averaging 6 hours of sleep at night. I don’t sleep during the day.
7 hours sleep + CPAP machine
I was diagnosed with Young Onset Parkinson’s at the age of 52, and I have been living with the symptoms of young onset Parkinson’s for 15 years. I am not satisfied with the amount of sleep I am getting. I average 7 hours sleep at night and 1 hour of
6 hours average sleep, but lacking deep restorative sleep
I was diagnosed with Young Onset Parkinson’s at the age of 37, and I have been living with the symptoms of young onset Parkinson’s for 14 years. I am moderately satisfied with the amount of sleep I am getting. I am averaging 6 hours sleep per night but lacking in
No strategies have been helpful so far
I was diagnosed with Young Onset Parkinson’s at the age of 49, and I have been living with the symptoms of young onset Parkinson’s since my 30s. I am not at all satisfied with the amount of sleep I am getting. I average 4 hours of sleep at night and
Head heaviness
I was diagnosed with Young Onset Parkinson’s at the age of 46, and I have been living with the symptoms of young onset Parkinson’s for 4 years. I am not satisfied with the amount of sleep I am getting. I am averaging 3-4 hours sleep at night, and 2 hours
I have to sleep in a seperate bed to prevent disturbing my partner
I was diagnosed with Young Onset Parkinson’s at the age of 40, and I have been living with the symptoms of young onset Parkinson’s for 20 years. I am not satisfied at all with the amount of sleep I am getting. I am unsatisfied, very unsatisfied. l sleep in 2
Not satisfied with sleep levels
I was diagnosed with Young Onset Parkinson’s at the age of 44, and I have been living with the symptoms of young onset Parkinson’s for 10 years. I am not satisfied with the amount of sleep I am getting. I am averaging 2.5 hours of sleep at night and no
