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:
Victoria is continuing to develop and implement resources
to better inform and support people living with YOP. Below
are some current YOP resources from both Australia and
American Parkinson's Disease Association (APDA)
in the USA has a Young Onset Parkinson's website
dedicated to resources for people diagnosed with
Parkinson's Disease Society (UK) also has a dedicated
page on their website for information and resources
especially for younger people living with Parkinson's
APDA together with the National Parkinson's Foundation
(USA) recently held their first Young Onset Conference
. Several of the sessions have been made into
webcasts which can be viewed by clicking on the
following link below:
are internationally based forums which are not associated
with Parkinson's Victoria in any way
Victoria the 'Young@Park' group is a group of
people with YOP and their families who meet up
socially every few months usually at a restaurant
or pub. There is a group based in Melbourne and
webpage in this site for more information
and Jordan are mother and son who share their stories
of living with Parkinson's with us. Tracey was diagnosed
with Young Onset Parkinson's when she was in her
20's. Tracey's son Jordan was born after her diagnosis
so he has always known his mum with Parkinson's.
Jordan is 17 years, both he and Tracey write about
their challenges and insights into living with Parkinson's.
had a lot questions which were not always answered
because there were no answers. Why was I so lucky
to have Parkinson's when it is associated with
over 50's? What are the chances that my son Jordan
could get it? What would my future be like? Unfortunately,
there were no answers again because there is not
enough information for young people who have Parkinson's"
have never really found my mum having Parkinson's
disease difficult to live with as I've grown up
with it and I just don't worry about it. I put
up with it and think of all the other people who
are far worse off"
Young Onset Parkinson's conference 2010
Proudly supported by
November 12 and 13th 2010, Parkinson's Victoria, with
the support of Parkinson's Australia, held the inaugural
Young Onset Parkinson's conference in Melbourne.
event was attended by 100 people who listened to a mix
of high calibre international and national speakers, and
participated in a range of informative and fun break-out
Friday night programme featured a Welcome Reception to
give attendees the opportunity to meet others in a relaxed
setting. The highlight of the evening was a presentation
from Mr. Tom Isaacs in London via videoconference. Tom
was diagnosed with Parkinson's at 27 years old and is
an inspiration with all his fundrasing and awareness raising
work - including co-founding the Cure Parkinson's Trust.
more about Tom Isaacs here. Tom's presentation had
everyone laughing in stitches right throughout and was
educational and highly entertaining.
Tom Isaacs Top 25 Tips for Parkinson's here.
On the Saturday, the main conference day, attendees were
able to hear presentations on the following topics:
Essence of Health - Dr. Craig Hassed, Monash University
Research Update - Professor Julie Andersen, Buck Institute,
Treatment Update - Victor McConvey, Parkinson's Victoria
Out Session One
Brain Stimulation Q and A - Mary Jones and panellists
Shane Murphy and Marja van der Torren
for the Future - Kerry Wilson and Roshell Ebert from Outlook
and Intimacy - Catherine Watson and Victor McConvey,
for Carers - Kate Cleaves from Carers Victoria
Out Session Two
Chi - Pauline Gardner, Southern Health
and Meditation - Louise Cooper from the Anxiety Recovery
and Creativity - Anne Atkin, Painting with Parkinson's
and Stretching - Judith Baillie, Cabrini Elsternwick
from the information presented on the day, the conference
offered a wonderful opportunity for attendees to meet
other people living with Young Onset Parkinson's and their
partners with many people agreeing to maintain contact
with each other post-event. It is this face to face networking
that provides such reassurance and comfort to people.
Victoria would like to acknowledge and thank Medtronic
for their generous support of the event.
you would like to be added to the Young Onset Parkinson's
contact list in order to be informed of news and other
initiatives, please contact Catherine at Parkinson's Victoria
on (03)9551 1122 or email firstname.lastname@example.org