Melbourne draftsman Geoff Constable was just 44 when he began to notice something was off with his balance.
The father-of-three recalls when walking he felt like he was drunk, and was more prone to falling over. As a result, he cut down on physical activity to prevent himself from getting injured.
Six years later, when he was 50, Geoff was finally diagnosed with young onset Parkinson's disease (YOPD).
He is not alone. In Australia, one person is diagnosed with YOPD every three hours.
Soon after his diagnosis, Geoff realised the importance of tailoring exercise to his ability, to help maintain his mobility and slow the progression of the disease. For him, being armed with the right information on how best to tackle his disease made a huge difference to his life.
Which is why Geoff, now 64, is getting behind the new YOP-X app. The app is a portal and resource hub designed to help people living with YOPD.
"The YOP-X app is a fantastic, easy-to-access resource designed to help with all of the aspects of daily life that a person living with Parkinson's Disease may need to negotiate," said Geoff.
"It offers evidence-based advice on what to expect with YOPD, and how best to manage the disease. It's important for those newly diagnosed with YOPD to understand that the disease doesn't need to dictate your life, but it's essential that they learn how to live with it."
Nowadays, Geoff spends six months of the year cycling, and the remaining six months training for the Oxfam Trailwalker - a 100km team-based trail walking event. He also enjoys Lego, and spends hours using the tiny bricks to improve his dexterity and finger mobility, which allows him to continue using a computer for his job.
While still needing to manage his own Parkinson's disease-related symptoms, including back pain, difficulty walking up and down stairs, forgetfulness and an altered sense of smell, Geoff is passionate about supporting others newly diagnosed with YOPD, to help them navigate their imminent journey with the disease.
He is one of around 100,000 people in Australia currently living with Parkinson's disease, with one in five experiencing symptoms before the age of 50.
While the free Young Onset Parkinson's Exchange (YOP-X) app is targeted at people who are diagnosed with the disease before they're 50, it is relevant to anyone living with Parkinson's.
Cognitive neuroscientist Fiona Kerr, who is also the founder and CEO of independent research body The NeuroTech Institute, was part of YOP-X working party. She said the app will prove a critical support tool for those affected by the disease.
"YOPD patients are in the prime of their lives - a time when they should be at their most productive, juggling competing demands, including employment, family and school commitments, sporting, and various social events and activities," Dr Kerr said.
"People living with YOPD must not only face times of debilitating motor impairment, but must also contend with non-motor symptoms, including anxiety, depression, apathy and sleep disorders that can substantially compromise their quality of life."
"The combination of support provided by the YOP-X app and medical care offers YOPD patients a holistic approach to addressing changes involving their work, relationships, sleep, physical ability and mental health," said Dr Kerr.
South Australian Health and Medical Research Institute's Joep van Agteren, who worked on the project, said the platform is designed to help patients make positive changes to their career, relationships, sleep, physical ability and mental health.
"Current data involving Australians living with Parkinson's under 65 years of age highlights a lack of information, education and understanding of the disease, its symptoms and progression, with a need for greater support and understanding to enhance social, community and economic participation," he said.
He said the app provides patients with easily accessible information pertaining to their disease including educational videos on various topics and exercises.
Geraldine Cardozo
Features Editor at The Senior.
Features Editor at The Senior.
