Young Onset Parkinson's
About 20 per cent of people with Parkinson's have symptoms before age 50 with many diagnosed in their 30s and 40s. The perception that Parkinson's affects only older people is wrong. A whilst there is debate about the age classification of young or early onset Parkinson's, it is generally regarded to be when the condition is diagnosed before the age of 50. People who have 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.
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​If people with younger onset Parkinson’s are to retain the best quality of life possible, they will benefit from becoming as knowledgeable as possible and involved in the management of their condition. Work with your doctor or neurologist to determine which medication is right for you and when. Carefully selected modern treatments for Parkinson’s mean that a person can continue to work and have a good quality of life for many years after diagnosis.
Having Parkinson's diagnosed early in life presents some unique challenges for the person with Parkinson's and their family and friends.
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You should be able to continue working with a diagnosis of Parkinson’s depending upon your symptoms and what you do for a living, although you may wish to change to more flexible work arrangements. But management of the condition is not only about medical treatment. Developing a career plan, and a backup plan may be worthwhile.
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Financial planning may be different and you may need to review your plans and develop options. There are many supports to help obtain financial advice and government support to alleviate financial stress.
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. There are online and in person support groups that provide a great forum to talk through ideas, issues and concerns. Call the Info Line 1800 644 189 for counselling, information and support.
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People with Young Onset Parkinson's have successfully raised families. Data on pregnancy is limited, and it is best to talk to your medical practitioner regarding family planning. Motor and non-motor symptoms can post challenges to parenting younger children, but a good network of people who can lend a hand can provide the help that is needed.
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Parkinson's Australia has recently launched the Young Onset Parkinson’s Exchange (YOP-X) App and website and both act as an information portal and resource hub supporting people with young onset Parkinson's, and provide a valuable workforce tool for NDIS staff. Developed as a living lab model, the experiences, ideas, knowledge and daily needs of people with young onset Parkinson’s have underpinned all App and website content, with more than one hundred individual stories and experiences shaping tools and resources. YOP-X also provides a fast track for people with young onset Parkinson's to collect and collate information relevant to their NDIS applications.
The video below provides an introduction to the app and how it can help you.
To find out more visit www.youngonsetparkinsons.org.au
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Were you diagnosed with Parkinson’s under the age of 65?
Are you experiencing pain?
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During national consultations undertaken for the Young Onset Parkinson’s Exchange (YOP-X) Project, pain experiences were highlighted as key areas to consider for further investigation. Studies show that pain is undiagnosed and poorly managed in people with Parkinson’s, and no studies in Australia or internationally have specifically looked at pain experiences for people diagnosed with Parkinson’s under the age of 65.
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Parkinson’s Australia is undertaking a National Pain Consultation for Young Onset Parkinson’s to gather a key set of information focusing on the types of pain, severity, frequency, location of pain, aggravating and easing factors and impact on quality of life for people with young onset Parkinson’s.
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To complete the online survey please click here Pain Survey
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For more information, please contact katie@parkinsonssa.org.au