common misconception about Parkinson's is that it only
affects older people. Although more prevalent in people
in their 60's and older, Parkinson's can affect adults
of any age. It is estimated that nearly 1 in 5 people
living with Parkinson's were diagnosed when they were
still of working age (Access Economics Report 2007). This
figure is probably under representative of people living
with Young Onset Parkinson's (YOP) as many of these people
are hidden in the community.
challenges faced by people living with YOP will be different
to those diagnosed of retirement age. Younger people are
still working, travelling, developing relationships and
for some people, wanting to start families of their own.
For these people, a diagnosis of YOP throws many questions
and uncertainties about the future.
younger people with a diagnosis of Parkinson's still remain
active in employment, leisure activities and in the community.
Support from family, friends, employers will impact greatly
on this. The information relevant to people living with
YOP will vary greatly as younger people engage in a variety
of lifestyles their circumstances will differ significantly
from one person to another.
YOP the focus is not just about learning to live with
Parkinson's, the focus is on living well with
this condition (Fyffe 2010).
people with Young Onset Parkinson's (YOP)
There is a social group especially
for people living with Young Onset Parkinson’s and their partners called Young At Park (Y@P). The group
strives to provide a welcoming, friendly and relaxed environment for people to
meet others, share information and provide support to each other.
The Y@P website aims to improve the connectedness between members by providing a
message board, and connections to social media; as well as the latest
information about Y@P events and other news items which are particularly
relevant to younger people living with Parkinson’s.
Why not visit the Y@P website now: http://yap.org.au
is a growing worldwide movement looking at improving support
for people diagnosed with YOP. In the UK and USA there
are now organisations specifically reaching out to YOP
and in recent years there are also YOP conferences, chat
sites, blogs and online forums.
Victoria is committed to supporting people living with
YOP. In mid 2009, a nationwide project looking into providing
support for YOP was commissioned and the 'Living with
Young Onset Parkinson's' report was launched in Canberra
to a parliamentary breakfast in March 2010. This report
is now being used as a lobbying tool for improved funding
and resources for YOP. It is being used by state-based
Parkinson's organisations as a tool for developing appropriate
support options to those living with YOP.
following reports can be downloaded below: