A voice for rural and regional people living with Parkinson’s disease

Published 20 November 2020

A University of New England (UNE) duo have launched a national survey of remote Australians to build a better understanding of how they and their families are coping with the disease.

Researchers within UNE’s School of Psychology, Dr Deborah Apthorp and PhD candidate Alycia Messing, ultimately hope the information they gather will be used to help advance the early diagnosis and treatment of Parkinson's for all.

"People living in remote and rural Australia typically have difficulty accessing specialised medical care," said Dr Apthorp. "Those in the city have access to clinics and specialists, but country people have to travel vast distances to consult a specialist neurologist, often when they are already struggling with their mobility."

The survey will seek information about the prevalence of Parkinson's disease in rural and regional Australia, the specific needs of people living with the condition, their treatment options, and how it impacts their quality of life.

Parkinson's is the second most common neurological disease in Australia, affecting some 80,000 Australians. The number of people living with the disease is predicted to increase by 30-50% over the next decade and there is now concern that COVID-19 may increase the likelihood of a person developing it.

"One of the first symptoms of COVID is a loss of smell, and this is also a precursor to Parkinson's," Dr Apthorp said. "It is possible that we could see an increase in the incidence of Parkinson's disease and other neurological complications after COVID. It may be completely unrelated or it could be that having COVID makes you more at risk of developing Parkinson's."

The survey Alycia developed has been endorsed and supported by Parkinson's Australia (PA) and is the first national one of its kind.  PA chief executive officer Jodette Kotz said she is keenly aware of the dearth of resources available to people with the disease in rural and remote Australia.

"Research into the early identification and diagnosis of Parkinson's could help prevent some of the loss of dopamine cells in the brain and prevent the onset of symptoms such as motor dysfunction," Jodette said. "It could enable people to access treatment options earlier."

Alycia believes the research is especially timely.

"As well as the possible links to COVID, there is concern that people who may be experiencing early Parkinson's symptoms have not been visiting their doctors during the pandemic or can't get in to see their doctor," Alycia said. "People with Parkinson's are keen to see more research conducted. This survey gives those in more remote locations the opportunity to participate."

By sharing results with Parkinson's Australia, the researchers hope their work will inform future treatment. In the meantime, they are busy seeking additional funding to equip a van to use as a mobile research lab to travel out to rural and regional areas to work with people with Parkinson’s to study the progression of the disease.

Alycia hopes the survey will identify those people with Parkinson's disease interested in taking part in this monitoring over the next two years. "These are people with specific needs," she said."For me, the primary objective is to collect data that can be used directly to improve services in rural and regional areas."

And she doesn't have to look far for motivation. "My father has a neurological condition that requires regular assessments and he has to travel to access treatment," she said. "As he is often confined to a wheelchair, this is a huge undertaking for him and my mother. It is expensive and exposes them to situations that they are not always comfortable with."

Ultimately, Dr Apthorp hopes to improve the early diagnosis of Parkinson's. "By better understanding its progression, we might be able to slow the progress of the disease," she said. "Then we can tailor treatment more appropriately."

If anyone living with Parkinson's disease in rural and regional Australia and would like to share their story, they are invited to participate in the research by completing the survey or contacting Alycia Messing amessin2@myune.edu.au.

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