World Parkinson’s Day

World Parkinson’s Day

By Erin Archer

 

Every 45 minutes an Australian is diagnosed with Parkinson’s, a complex neurodegenerative disease that impacts more than 80,000 people around the country.

Parkinson’s affects people both physically and mentally, in ways of tremors and slowness in movement, but there are also other symptoms that come with the disease, like depression, anxiety, memory loss and loss of speech.

The Shake It Up Campaign is a partner of Parkinson’s Australia, and it’s CEO Clyde Campbell said the condition is a whole body disease, and that there is not just one type of Parkinson’s.

Mr Campbell was diagnosed with Parkinson’s disease at the age of 44, after experiencing shaking in his hands whilst doing a work presentation.

It came on quite quickly for Mr Campbell, but he said it had progressed relatively slowly in the 8 years following his diagnoses.

CEO of Parkinson’s Australia Steve Sant, said it’s the psychological symptoms which are often unknown to most people, and it’s why World Parkinson’s Day is so important.

This year is the second time the international community has come together to promote awareness on a bigger scale, with the use of the hashtag #UniteForParkinsons on social media websites.

“What we’re trying to do is raise awareness, to let people know what Parkinson’s is and what it isn’t, and to really advocate the government for better investment in research, better services and better care for people living with Parkinson’s,” said Mr Sant.

Parkinson’s costs more than $10 billion per annum to the Australian economy, but despite this government funding for the disease is minimal and support networks often have to rely on donations from the public and philanthropic organisations.

Mr Sant said more government involvement into better care and support for people affected by the condition will bring those costs down.

“It is an investment, there is a return on their investment, but they really need to step up and do that in the next 12 months,” he said. 

Mr Campbell agreed that there is a challenge to be able to get the level of support that other illnesses get, and he said it could come down to breaking the stereotypes that come with disease.

“We do need to change the perception of Parkinson’s being one of an old person’s disease, when 20 percent of people who are diagnosed are under 50,” he said.

 

Treatment

Professor Simon Lewis, of the University of Sydney’s Brain and Mind Centre told the ABC, that Parkinson’s disease symptoms can vary between people, which can make it difficult to treat.

“Some people have lots of tremors, some people have no tremor at all, and then you add in things like mood disturbance, sleep disturbance, problems with psychosis and dementia.”

“It’s a moving target, and we have to be very good at recognising what our patients need,” he said.

With no known cause or cure, Parkinson’s disease can arrive in an instant and at any time, but a glimmer of hope exists for sufferers, according to a piece published by the Medical Journal of Australia recently.

Professor Lewis is the author of that piece and he spoke to the ABC about Parkinson’s disease trials that are currently occurring in Australia.

Those interested in participating in the trials, can go visit the Australian New Zealand Clinical Trials Registry website, to find out what is available.

“This is actually some real hope, rather than hype,” Professor Lewis told the ABC.

In his piece for the MJA, he said pursuing effective treatments to slow, stop or reverse Parkinson’s disease are accelerating globally.

“While our understanding of Parkinson disease has been growing inexorably, this has only served to reveal its ever-increasing complexity,” Professor Lewis wrote.

“We’ve revealed several clues about the underlying neuropathology of this disease, including epidemiological factors, genetic factors and preclinical biomarkers.

“We are also becoming increasingly aware about the role of specific cellular and more widespread processes implicated in Parkinson disease.”

Professor Lewis told the ABC, that it’s always important to be optimistic when it comes to  Parkinson’s disease research.

“It’s a terrible thing to say that there’s never been a better time to have Parkinson’s, but the fact of the matter is, we are now in a position where we are able to get patients involved in trials going forwards,” he said.

 

Get Involved

Parkinson’s Australia is a major support network for those with the disease, and offer specialised services, counselling, and nursing care, with the aim of providing better quality of life.

They also advocate for more investment in research and more services to support people living with Parkinson’s.

CEO Steve Sant encouraged people to use the hashtag #UniteForParkinsons on social media websites including Twitter and Facebook today on World Parkinson’s Day, to help raise awareness of the condition.

He also said people can go to their local state Parkinson’s organisations to make donations, or visit the Parkinson’s Australia website to find out more information about the disease, and what they can do to help.

Shake It Up CEO, Clyde Campbell said today is all about Pause For Parkinson’s, which is an initiative that encourages people to stop and reflect about the condition whilst gathering with friends and family.  

 

Visit these links for more information on World Parkinson’s Day and the Shake It Up Campaign:

About author

earche04
earche04 66 posts

Erin joined the NRN team straight after graduating from a Bachelor of Communications (Journalism) at Charles Sturt University in 2016.

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