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New support platform for young-onset Parkinson’s disease

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While 60 is the average age for diagnosis of Parkinson’s disease, it is a misconception that it only affects people in older age.
 
In fact, one in five Australians experience symptoms before the age of 50, with one person diagnosed with young-onset Parkinson’s disease (YOPD) every three hours.
 
‘We certainly recognise that there’s a significant minority of patients who will … first develop symptoms under the age of 50, probably about a quarter of patients,’ Dr Paul Silberstein, a specialist movement disorder Neurologist, told newsGP.
 
Though YOPD is diagnosed based on physical features of the conditions, Dr Silberstein says there has been a ‘big change in perception’ in appreciating the non-motor aspects of the disease – most notably the neuropsychiatric aspects.
 
‘The issues that younger-onset patients face can be very similar to those of older people, but sometimes the weighting of other factors like employment, relationships [and] concerns about the future may be a heavier burden,’ he said.
 
To help people better understand and navigate the condition, a new digital support platform developed with input from Australians living with YOPD has been launched.
 
An initiative of Parkinson’s Australia, the Young Onset Parkinson’s Exchange (YOP-X) is described as a ‘living lab’ model and features information and resources on:

• mental health and emotional wellbeing
• employment and legal issues
• sex, relationships and intimacy
• sleep, fatigue and maximising energy
• exercise and nutrition
• changing your brain.

Freely available in website and app form for patients and their carers, as well as healthcare professionals and National Disability Insurance Scheme (NDIS) contracted providers, Dr Silberstein, who is a member of the YOP-X project working party, says it is a critical support tool for those affected by the disease.
 
‘It’s really reflecting a true lived experience and, in some ways, it’s trying to address some of these unmet areas of need in terms of what concerns people with their Parkinson’s disease,’ he said.
 
‘[These] are issues that people worry about, ruminate about, think about, but may not necessarily come into the day-to-day medical contact.
 
‘It’s not intended to be, obviously, in any way a replacement for good, ongoing medical care, but something that supports that. It’s a self-efficacy platform that gives patients some additional tools to self-manage their Parkinson’s disease.’
 
In addition to assisting patients with day-to-day issues, Dr Silberstein says the app is also designed to be a starting point for patients developing an NDIS application.
 
It helps to consolidate everything that the NDIS needs to know about someone with YOPD, including a streamlined process to assist people to describe their worst day and a goal-setting tool to collect short-, medium- and long-term goals, which are key requirements of accessing NDIS funding.
 
‘[It] basically walks people through all the documentation that they might need for an NDIS application with a focus on Parkinson’s,’ Dr Silberstein said.
 
As well as being the first port of call for patients experiencing symptoms, Dr Silberstein says GPs also have an important role to play in supporting patients once they have a diagnosis.
 
‘We recognize, for example, that at least 50% of patients with Parkinson’s disease will have a major depression somewhere along their illness and, similarly, at least 50% of patients will have a diagnosable anxiety disorder,’ he said.
 
‘And it’s not just a reaction to the illness, but part of the biology of the condition, and with these non-motor aspects of Parkinson’s disease GPs are going to have a really big role in terms of helping patients; GPs are good at managing depression [and] anxiety – probably a lot better than neurologists for the most part.
 
‘[But] as part of that neuropsychiatric aspect … the website [is a way to] help people to be able to help themselves, and that self-efficacy and confidence is a big part of managing well with a chronic condition.’
 
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NDIS Parkinson’s disease YOPD

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