YOUNG ONSET PARKINSON'S

What is Young Onset

There is a common misconception that Parkinson's affects only older people.  This is wrong: approximately 20% of people with Parkinson's are of working age, and of these, many are diagnosed in their 30's and 40's.   Those diagnosed before the age of 50 are generally referred to as having Young Onset Parkinson's  or Early Onset Parkinson's.

Young Onset presents different challenges

Having Parkinson's diagnosed early in life presents some unique challenges for the person with Parkinson's and their family and friends. They face the challenges of Parkinson's at a time in their lives when family and financial affairs are most demanding. People who experience young onset are likely to live with Parkinson's for a much longer period of time than those who get the condition later in life.  Many  continue in the workforce but over time some find that they need to change to more flexible work arrangements and ultimately to give up work earlier than they would have liked. 

 

Managing Young Onset

With carefully selected modern treatments for Parkinson's a person can continue to work and have a good quality of life for many years after diagnosis.  Many newly diagnosed younger people will show few, if any, symptoms once treatment has started but over time treatments may become less effective and need to be changed.

 

However, management of the condition is not only about medical treatment. To retain the best quality of life possible, people will benefit from becoming as knowledgeable as possible and being actively involved in the management of the condition.

Young Onset Parkinson's eXchange (YOP-X)

In April 2021 Parkinson's Australia and Parkinson's South Australia released the YOP-X app.  This is a world first: a comprehensive resource hub designed to support individuals living with YOPD as well as the primary support people (carers) and health professionals who play a vital role in caring for them.

The app is discussed in this video:

 

 

 

 

For full detail and download instructions please see www.youngonsetparkinsons.org.au.

More information

We recommend the following Michael J Fox Foundation article including video.

Support groups

Life may be at its most stressful as you approach your 40s and 50s and young patients often need someone with whom they can talk about their problems and worries. Sometimes it is difficult for a partner or carer to understand, so there can also be benefit from talking to others in a similar situation.

 

Parkinson's ACT supports an informal group of its Young Onset members. See Support Groups.  You can also call the Info Line 1800 644 189 for counselling, information and support.