How Parkinsons SA are maximising well-being every step of the way
Recently, The Mercedes-Benz Unley Long Lunch was held in support of Parkinson’s SA, and as a preview to the 2018 Adelaide Fashion Festival.
The money raised was over $15,000, which is a fantastic outcome, and Parkinson’s SA has more exciting news on the way, with the launch of the Brain X Body Fitness Studio on King William Road, which is opening later this year.
We wanted to take this opportunity to let you know a little bit more about Parkinson’s SA and what the organisation does each and every day to assist those living with Parkinsons to maximise their everyday life.
Parkinson’s is the second most common neurological condition, affecting over 8 000 people in South Australia. Parkinson’s South Australia estimates that up to 80,000 people in South Australia are directly impacted by Parkinson’s, they either have Parkinson’s, provide care to someone with Parkinson’s, have a family member or close friend affected by Parkinson’s. Around 20% of people with Parkinson’s are of working age often with young families.
Parkinson’s is a neurodegenerative condition with no cure. The World Health Organisation observes that Neurological disorders, such as Parkinson’s, are “one of the greatest threats to public health”.
People diagnosed with Parkinson’s have a complex range of movement related symptoms including tremor, muscle rigidity, poverty of movement and loss of normal posture with a tendency for falls. However, lesser known is the major impact on non-motor functions such as depression, anxiety, behavioural disturbances and cognitive impairment, sleep disorders, hallucinations, dementia, sensory deficits such as loss of smell and visual problems and impaired speech.
Olivia Nassaris, CEO of Parkinson’s said, ”Because of its chronic progressive nature, insidious onset, complicated and diverse motor and non-motor symptoms and limited management options Parkinson’s is one of the most challenging diseases.”
She continued, “We represent and support the 8000 people with Parkinson’s in SA. We are not only available for support at diagnosis and in the early stages, but throughout the progression of the condition.”
ABOUT PARKINSON’S SOUTH AUSTRALIA
Parkinson’s SA is a not for profit organisation that has provided support and information to people living with Parkinson’s and other movement disorders, their carers, family, the community and health professionals for over 30 years.
With a very small team of 7 part-time staff and supported by volunteers, Parkinson’s SA offers many informative and supportive workshops, courses and seminars for people with Parkinson’s, carers, family members and friends and health professionals.
Annie Tonkin, diagnosed with Parkinson’s in 2009, said, “When I was first diagnosed I went on medication and most of my symptoms disappeared and I thought – I can handle this by myself. But a few years later when things started to get more complicated I realised that I needed support…I needed Parkinson’s SA. The wonderful community at Parkinson’s SA has given me the information, support and social connections that I need to live well with Parkinson’s.”
As a not-for-profit, Parkinson’s SA relies heavily on donations and fundraising to survive. Many people mistakenly believe that we are funded wholly by the government but this is not the case. Parkinson’s SA generates about 65% of its own budget through fundraising, donations, applying for philanthropic grants and providing training services to other organisations.
We recently updated our mission: To maximise choice, independence and well-being for people affected by Parkinson’s or another movement disorder through support, education and advocacy.
Maximising choice Everyone’s journey with Parkinson’s is completely different. One person’s choices will be different to someone else. It might be that they choose to stay at home, or choose to live in an aged care facility, choose to go to a support group, or not to.
Maximising independence Parkinson’s SA is not a charity in the old sense of the word, we don’t do things for clients, we do things with clients – we are a support organisation. We encourage people to seek support when they need it, to educate about medication management, treatments, symptom management and we are here to provide that information.
Maximising well-being We assist clients to maximise well-being. It can be by doing something offered by Parkinson’s SA like an art class or carers support group or attending a yoga class. It could also be getting a medication regime right or reducing falls.
Whatever it is – choice, independence and well-being are at the heart of what Parkinson’s SA offers through support, education and advocacy.