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
Medications made it worse
Regarding the importance of being in an intimate relationship to me, I am married, but no longer sleep in same room with my husband. I go to bed too late and then take a while to settle…it’s sad but that’s life. I am not currently in an intimate relationship, and
Leg cramping and restlessness
Being in an intimate relationship is important to me, and I am currently in an intimate relationship. I do not feel differently about intimacy than before I was diagnosed. I am experiencing physical barriers to a satisfying intimate relationship. My legs cramp and are restless. I am not experiencing any
Intimacy is better than ever despite setbacks
Being in an intimate relationship is a real blessing, having constant love and not feeling alone in this. I am currently in an intimate relationship and I do feel differently about intimacy than before I was diagnosed. It is better.I am not experiencing any physical barriers to a satisfying intimate
Parkinson’s makes me feel uncomfortable meeting people
Being in an intimate relationship is very important to me, and I am not currently in an intimate relationship. Regarding barriers to barriers to dating, Parkinson’s symptoms have become obvious and I am uncomfortable meeting new people. I do feel differently about intimacy than before I was diagnosed. I am
Emotional barriers to an intimate relationship
Being in an intimate relationship is very important to me, even after 35 years of marriage. I am currently in an intimate relationship, and I feel somewhat differently about intimacy than before I was diagnosed. I am experiencing physical barriers to a satisfying intimate relationship including the almost constant tremor
Difficulties introducing Parkinson’s while dating
Intimacy has always been very important for me, and currently I am in an intimate relationship. I was single at the time of my diagnosis, which was a very depressing time for me and I definitely did not feel very attractive. After some counselling, I started to feel better about
No time for myself leads to resentment
Being in an intimate relationship is very important to me. I am currently in an intimate relationship, and I feel differently about intimacy than before I was diagnosed. Too tired to care. I am experiencing physical barriers to a satisfying intimate relationship. Orgasm has no intensity. I am experiencing emotional
Parkinson’s creates barriers when dating
I’d like it to be important to me to be in an intimate relationship. Currently I’m not in an intimate relationship and the PD is creating barriers to me dating. I feel differently about intimacy than before I was diagnosed. I am experiencing physical barriers to a satisfying intimate relationship including
Intimate relationships are not important to me
Being in an intimate relationship is not at at all important to me, and I am not currently in an intimate relationship. I feel there are barriers to me dating. When to tell a new partner that you have Parkinson’s and what that can mean in the long term is
