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
Private conversations with someone you can be open with is important
I think being in an intimate relationship is important to everyone, for a lot of reasons. I find having PD makes it hard to be confident to put yourself out there and have the other person judge what PD is, based on pre conceived ideas of what PD means. I
My sex drive is higher than my partner’s
Being in an intimate relationship is important to me. I am currently in an intimate relationship and I do not feel differently about intimacy than before I was diagnosed. Mornings are better than evenings as I’m less tired. My increased sex drive is offset by reduced sex drive in post
Parkinson’s is a difficult fact for myself and my family
Being in an intimate relationship was once very important to me. Post diagnosis and increased symptoms it has fallen down the priority list. I am currently in an intimate relationship, and I feel differently about intimacy than before I was diagnosed. I feel more like a dependent than an intimate
My partner is reluctant to discuss my condition
Being in an intimate relationship is reasonably important to me. I’m married and we haven’t had a very intimate relationship for many years, even before getting Parkinson’s. I don’t really feel differently about intimacy than before I was diagnosed. Physical barriers I am experiencing to a satisfying intimate relationship include
Knowing your triggers & getting friends to understand
Being in an intimate relationship is very important to me, and I am currently in an intimate relationship. I do feel differently about intimacy than before I was diagnosed. Spontaneity with movement is restricted. I am experiencing physical barriers to a satisfying intimate relationship, like easy movement. I am experiencing
Coping with shame
Being in an intimate relationship is very important to me. I am currently in an intimate relationship, and I do feel different about intimacy than before I was diagnosed. There is shame. I am experiencing both physical and emotional barriers to a satisfying intimate relationship. I have not undertaken any
Parkinsons & post menopause
Being in an intimate relationship is extremely important to me, and I am currently in a long-term relationship. I do feel differently about intimacy than before I was diagnosed. I am experiencing physical barriers to a satisfying intimate relationship. I am in extreme pain and am unable to wear make-up,
Relationship Therapists should be aware of Parkinson’s and Q10
Being in an intimate relationship is very, very important to me, having the love and trust in place helps with the daily grind of Parkinson’s Disease. I am currently in an intimate relationship. I feel differently about intimacy than before I was diagnosed. Many of the non-visible symptoms put up
Government Employee: Symptoms are physical & non physical
What should employers know about young onset Parkinson’s? Should be aware of the variety of symptoms, both physical & non physical and a list of ways to “manage”/cater for these symptoms and where to gain and apply for Allied Health etc support to adjust working conditions to enable best performance
