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
It’s hard work but I keep fighting
I was diagnosed with Young Onset Parkinson’s at the age of 43, and I have been living with the symptoms of young onset Parkinson’s for 20 years. I am extremely dissatisfied with the amount of sleep I am getting. I am averaging 3-4 hours sleep at night if I’m lucky
Trialling red light therapy
I was diagnosed with Young Onset Parkinson’s at the age of 53, and I have been living with the symptoms of young onset Parkinson’s for 4.5 years. The amount of sleep I am getting is ok, and I normally get 6+ hours, but it can be inconsistent. I am trialling
Trying melatonin
I was diagnosed with Young Onset Parkinson’s at the age of 51, and I have been living with the symptoms of young onset Parkinson’s for 7 years. I am not satisfied with the amount of sleep I am getting, and I am averaging 4-5 hours at night, and 1 hour
Cramping and muscle stiffness are major factors in my lack of sleep
I was diagnosed with Young Onset Parkinson’s at the age of 30, 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, and I am averaging 3-4 hours at night and 2 hours
40 year old not satisfied with sleep
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 6 years. I am not satisfied at all with the amount of sleep I am getting. I am averaging 2 hours of sleep at night
Lack of energy and exhaustion in morning
I was diagnosed with Young Onset Parkinson’s at the age of 45, and I have been living with the symptoms of young onset Parkinson’s for 14 years. I would prefer greater ease of getting to sleep, as this can take several hours and would also prefer to wake with energy
Intermittent daytime sleeping
I was diagnosed with Young Onset Parkinson’s at the age of 36, and I have been living with the symptoms of young onset Parkinson’s for 6+ years. I am getting rest, but not quality sleep. I am averaging 4 – 6 hours of sleep at night, however I am regularly
Unsatisfied with sleep levels
I was diagnosed with Young Onset Parkinson’s at the age of 45, and I have been living with the symptoms of young onset Parkinson’s for 9 years. I am not satisfied with the amount of sleep I am getting. I am averaging 6 hours of sleep at night and I
My sleep patterns sometimes affect my partner
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 8 years. The amount of sleep I am getting is ok. I am averaging 8 hours of sleep at night and I am not sleeping
