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Young Onset Parkinson's

 

A 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.

The 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.

Most 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.

For YOP the focus is not just about learning to live with Parkinson's, the focus is on living well with this condition (Fyffe 2010).

 

Supporting 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


 

There 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.

Parkinson's 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.

The following reports can be downloaded below:

 

Parkinson's 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 overseas.

 


Resources

 

Websites

The American Parkinson's Disease Association (APDA) in the USA has a Young Onset Parkinson's website dedicated to resources for people diagnosed with Parkinsons -

The 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 -

Webcasts

The 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:

Chat forums
Parkinson's Forum UK
PD Junction
 *these are internationally based forums which are not associated with Parkinson's Victoria in any way
Support Groups

In 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 Geelong.

Visit the Young@Park webpage in this site for more information


Personal stories

TRACEY AND JORDAN

Tracey 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.

 

Now Jordan is 17 years, both he and Tracey write about their challenges and insights into living with Parkinson's.

Read Tracey's story

 

"I 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"

Read Jordan's story

"I 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"

 

 


Inaugural Young Onset Parkinson's conference 2010              Proudly supported by

 

On 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.

This 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 sessions.

The 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. Read more about Tom Isaacs here. Tom's presentation had everyone laughing in stitches right throughout and was educational and highly entertaining. Read 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:

Plenary Sessions

The Essence of Health - Dr. Craig Hassed, Monash University

Parkinson's Research Update - Professor Julie Andersen, Buck Institute, USA

Parkinson's Treatment Update - Victor McConvey, Parkinson's Victoria

Break Out Session One

Deep Brain Stimulation Q and A - Mary Jones and panellists Shane Murphy and Marja van der Torren

Planning for the Future - Kerry Wilson and Roshell Ebert from Outlook Financial Services

Relationships and Intimacy - Catherine Watson and Victor McConvey, Parkinson's Victoria

Session for Carers - Kate Cleaves from Carers Victoria

Break Out Session Two

Tai Chi - Pauline Gardner, Southern Health
Relaxation and Meditation - Louise Cooper from the Anxiety Recovery Centre
Art and Creativity - Anne Atkin, Painting with Parkinson's

 

Exercise and Stretching - Judith Baillie, Cabrini Elsternwick

Apart 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.

Parkinson's Victoria would like to acknowledge and thank Medtronic for their generous support of the event

 

If 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 catherine@parkinsons-vic.org.au

 

Photos from the inaugural National Young Onset Parkinson's Conference 2010

Friday night Welcome Reception

Some of the interstate attendees meet from Tasmania, Northern Territory and Queensland

Meeting and mingling at the Welcome Reception
Video link-up to London to hear Mr Tom Isaacs, co-founder of the Cure Parkinson's Trust, give his entertaining presentation Main Conference Day - attendees listening to plenary sessions Karyn Spilberg (right) introducting Professor Julie Andersen who presented a wonderful research update
Break-out session - Art and Creativity. Lots of laughs were had while playing with colour and exploring our creative sides Break-out session - Relaxation and Meditation. Louise Cooper takes the group through a Mindfulness exercise Break-out session - Exercise and Stretching. Judith shows the group some exercises to try at home

 

 

 

 

 

 

 

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