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The world’s fastest-growing neurological disease increasingly affecting younger people

Young Onset Parkinson’s Exchange National Working Group members pictured in Melbourne.

Young Onset Parkinson’s Exchange National Working Group members pictured in Melbourne. Photo: Parkinson's Australia

At various times over the past 34 years, Paula Argy has been hissed at as a ‘meth addict’, been ridiculed for being “too drunk”, or scolded by people for using a disabled car park. At her 40th birthday party at a NSW winery, a waiter told her they would serve her no further alcohol.

“They basically told me I’d had enough. I appeared unstable on my feet, they said,” Paula recalls. “I’d had one glass of champagne.”

Paula was not drunk. Nor has she ever been a drug user. She has Parkinson’s disease and has done since she was 19. It was yet another moment in her life where the lack of public understanding of, and empathy for, a younger person living with Parkinson’s fuelled an embarrassing loss of dignity.

Paula, now 53, is one of the estimated 30,000 younger people (20s to 50s) in Australia living with Parkinson’s – people who routinely suffer from the assumption that Parkinson’s is a condition that afflicts only older Australians and known symptoms such as tremor and motor dysfunction and lesser known symptoms like depression and anxiety.

Parkinson's Australia

Paula Argy, 53, with daughters Greta, 24, (left) and Mary, 21, (right). Photo: Parkinson’s Australia

That assumption that young people can’t, and don’t, get Parkinson’s presents a different set of challenges for those younger people, says CEO of Parkinson’s Australia, Olivia Nassaris.

“People living with Young Onset Parkinson’s (YOP) are different because, for example, they are still in the workforce, many of them are still paying off mortgages, but their capacity to earn can be severely compromised,” Olivia explains. “They are raising children or looking to get pregnant. They are single and dating, which then presents issues around intimacy and sex.

“They also have to deal with many non-motor symptoms people can’t see: depression, anxiety, apathy, fatigue. These can make it hard to keep a full-time job and can require employers to make changes to accommodate that person. All while people firmly believe the myth that young people don’t get Parkinson’s.”

YOPX App

Parkinson’s Australia has launched the Young Onset Parkinson’s Exchange (YOPX). Photo: Parkinson’s Australia

To battle the prejudices and increase understanding of YOP by providing more resources for carers, employers and people with YOP – particularly guiding them through the dizzying maze of the National Disability Insurance Scheme (NDIS) – Parkinson’s Australia has launched the Young Onset Parkinson’s Exchange (YOPX) – a website and app which Olivia has described as “an absolute game-changer” for people with YOP.

“Most of the information out there is designed for an over-65s audience,” Olivia explains.

“But the YOPX has been designed by, and for, younger people [living with Parkinson’s] and isn’t available anywhere else. While the info is quite specific, it’s also perfect for a mainstream audience to better understand Parkinson’s and the particular challenges that younger people face.”

The app is a gold mine of information, with resources to empower people living with YOP to modify their lifestyles, treat and manage their Parkinson’s; to boost the understanding of symptoms and impacts for NDIS staff, allied health professionals, carers, family and partners; and a step-by-step guide to help young people navigate the often-complex process of applications or reassessment processes with the NDIS.

Only 2000 people living with Parkinson’s under the age of 64 have NDIS plans, which is shocking for a neurological, degenerative disease with debilitating symptoms and no cure. Parkinson’s Australia encourages people with Young Onset Parkinson’s to use the NDIS feature of the app to assist them to apply for the scheme.

Paula Argy was on the working group that devised the app and wishes she and her family and friends had access to such a rich source of information when she began her journey 34 years ago.

“I pretty much lost everything – Parkinson’s cost me my marriage, my job, and my house … back then, there was nothing – no support, no information for younger people with the disease.

“I can’t help thinking how very different my life might have been if something like the YOPX had been around then.”

Download the YOPX app at the App Store here, or on the Google Play Store here.

For more information about Parkinson’s or on Young Onset Parkinson’s go to www.Parkinsons.org.au and/or www.youngonsetparkinsons.org.au

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