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GUEST BLOG: Parkinson’s NSW CEO, Miriam Dixon

23 January 2013

Miriam Dixon - CEO.jpgHi, I’m Miriam Dixon, CEO of Parkinson’s NSW. I am pleased to join you as a guest blogger and share thoughts and information on Parkinson’s disease in Australia.

Some people may have heard of someone who has Parkinson’s disease (PD) – celebrities including Michael J. Fox and Muhammad Ali often spring to mind. What many people aren’t aware of is; how many Australian’s are diagnosed with Parkinson’s; that it’s the most common neurodegenerative disease after Alzheimer’s disease;* or the impact it has on those living with the condition and their loved ones.

Every day 30 people are diagnosed with Parkinson’s disease. Better funding for treatment options and investment in finding a cure is critical for patients now and in the future.

It is estimated that more than 64,000 Australians live with PD.* While the average age of diagnosis is approximately 65, increasingly, people as young as 30 years are being diagnosed with with the disease.* It is estimated that in 2011, there were more than 2,000 Australian’s aged in their 30s and 40s living with PD.* 

PD is a complex, progressive and degenerative neurological disorder that causes loss of control over body movements. People can experience rigidity (stiffness or inflexibility of the limbs and joints), slowness of movement, tremor and impaired balance and coordination. Symptoms arise when a small region of the brain called the substantia nigra pars compacta (SNc) degenerates. Brain cells in this area die, depriving the brain of the chemical dopamine.

As Parkinson’s progresses, routine daily activities like bathing, dressing or eating without assistance from others, become difficult or impossible.* The disabling effects of PD may cause many patients to become unwilling or unable to venture outside their homes to work, shop, eat or socialise – everyday activties that more people take for granted.

Sadly, the cause of PD is largely unknown, and there is currently no known cure. Fortunately, there are treatment options available including medication and deep brain stimulation – which are designed to reduce the disabling effects of PD, however we as a community (of patients, supporter, clinicians and organisations) need to ensure that everyone who needs access to these therapies can get access and aren’t denied due to lack of funding.

In addition to treatment; counselling and support play an important role in the comfort and care for those living with PD, which is a focus for Parkinson’s NSW and similar non-profit, community-based organisations. Formed in 1979, Parkinson’s NSW aim to provide information, counselling and support as well as act as an advocate to increase awareness of the condition and investment toward accessing treatment and finding a cure. As an example, we’re proud to offer support to over 400 patients and carers that call our Infoline each month.

Like other non-profit organisations, Parkinson’s NSW rely on support from the community to maintain services. There are a number of ways, those interested, can support the efforts of Parkinson’s support groups in each state including; fundraising, volunteering and participating in events like Australia’s Unity Walk. In 2013, Australia’s Unity Walk will be in its sixth year! We hope you will join us, keep an eye out for details early next year.

Thanks for the opportunity to spread the word about Parkinson’s disease. Please share this blog with your family and friends so they too can understand the impact it has on fellow Aussies. If you would like to learn more about PD and/or Parkinson’s NSW connect with us online at www.parkinsonsnsw.org.au and via facebook and twitter @ParkinsonsNSW.

Miriam

High Res blue

Special thanks to Miriam Dixon, CEO Parkinson’s NSW for being our first ‘guest blogger’ on 97waterloord.wordpress.com.

To hear the stories of people living with Parkinson’s disease and their experience receiving deep brain stimulation visit Medtronic.com.au.

*References available upon request. 

 
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