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
My body temperature feels different since PD onset
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 4.5 years. I’m not very satisfied with the amount of sleep I’m getting but you get used to it somehow. I am averaging 3-4 hours
Average of 4 hours sleep each night
I was diagnosed with Young Onset Parkinson’s at the age of 48, and I have been living with the symptoms of young onset Parkinson’s for 3 years. I am not satisfied with the amount of sleep I’m getting. I am averaging 4 hours of sleep at night and 0.5 hours
Affected by misdiagnoses
I was diagnosed with young onset Parkinson’s at the age 54, but had misdiagnosed Parkinson’s symptoms for at least 5 years prior to this. It’s been 8 years since being diagnosed and another 5 years of misdiagnosis, but a review of medical history suggests that minor symptoms were present for
Insomnia affects my sleep
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 10 years. I am not satisfied with the amount of sleep I am getting. I am averaging 4 hours of sleep during the night and
Continence and fatigue barriers
1. How important is being in an intimate relationship to you?: Very2. Are you currently in an intimate relationship?: Yes3. If you are single, do you feel there are any barriers to you dating?: 4. Do you feel differently about intimacy than before you were diagnosed?: No5. Are you experiencing any
DBS treatment is helpful
Being in an intimate relationship is extremely important to me, non-negotiable. I am currently in an intimate relationship, and I feel differently about intimacy than before I was diagnosed. I am not experiencing any physical barriers to a satisfying intimate relationship. With regards to experiencing any emotional barriers to a
Hard to get into right frame of mind
Being in an intimate relationship is very important to me, and I am currently in an intimate relationship. I have become more aware of my need for intimacy as this has become an issue in our relationship. I am experiencing physical barriers to a satisfying intimate relationship. When I am
Experiencing loneliness
Being in an intimate relationship is very important to me, and I am currently not in an intimate relationship. I feel there are barriers to me dating, and I feel differently about intimacy than before I was diagnosed. I am experiencing physical barriers to a satisfying intimate relationship including erectile
Emotional intimacy more important than phyiscal intimacy
Being in an intimate relationship is not important for me for the immediate future, but long term it’s very important. I am not currently in an intimate relationship, and I do feel there are barriers to me dating including: Disclosure – when do I bring the topic up? Quality of future
