The Young Onset Parkinson’s Exchange (YOP-X) Project is in the development stages of creating an innovative app and other online resources to act as an information portal for those living with young onset Parkinson’s. Additionally, educational tools are being developed for NDIS contracted providers and other health professionals, to assist them to meet the needs of people living with young onset Parkinson’s, by raising awareness of the symptoms, issues and the treatments available that can enhance participation in family, work, social and recreational life.
Consultations are continuing with people living with young onset Parkinson’s across Australia, and have highlighted key areas of focus including:
- Employment and Legal Issues
- Exercise and Wellbeing
- Mental Health
- Referral Pathways
- Step-By-Step to Applying for the NDIS
- Supporting the Support People
An online platform has been launched for people with young onset Parkinson’s to upload video selfies for use in the development of the educational tools, and contributions are welcome at www.youngonsetparkinsons.org.au
Additionally, a range of national surveys specifically for people with young onset Parkinson’s have been developed.
The first survey is to capture the workforce experiences of people with young onset Parkinson’s, who often face a reduced capacity to work, or in some cases leave the workforce altogether. During initial consultations, employment was highlighted as a key area to consider for the App development, specifically how it could assist people with young onset Parkinson’s to stay in the workforce for longer. Research indicates that factors other than onset age and the duration of having young onset Parkinson’s influence loss of employment, and therefore developing targeted strategies could support people with young onset Parkinson’s to remain in employment for longer.
Workforce Survey for People With Young Onset Parkinson’s – http://ems.gs/3uUe0idcPsS
Following this, a relationship survey and partner survey has been released. During initial consultations for the Young Onset Parkinson’s Exchange (YOP-X) Project, relationship issues were highlighted as a key area to consider for the App development. Some people are doing Parkinson’s solo, some are in long-term relationships, and some met their partner following diagnosis. Changes in relationship responses and functioning that come with young onset Parkinson’s can be as a result of the condition itself, as well as the affects of medication or the impact of other factors such as fatigue or changes in partner roles.
Relationship Survey for People With Young Onset Parkinson’s – http://ems.gs/3uUe0bAcVJC
Partner Survey – http://ems.gs/3uUe0hhcVJO
For more information on the Young Onset Parkinson’s Exchange Project, or to find out how you can be involved, please contact Katie at Katie@parkinsonssa.org.au