In Greek families, it is often expected that the children will care for their ageing parents. What is less common is for grandchildren to take on this role.
In her twenties, Greek Cypriot Olivia Nassaris became her yiayia Despina’s “end-of-life carer” after she was diagnosed with Parkinson’s.
They shared a name and had a special bond.
“We suited each other and because I was a granddaughter, it meant that, I could do things like wash, brush and style her hair like she likes and do all those women to women kind of things,” said Olivia Nassaris to Neos Kosmos.
“We used to just love spending time together.”
Caring for her grandmother seemed a natural choice for Nassaris, and her brother did the same for their papou when he became ill.
Reflecting on everything she’s learned Nassaris realises how little was known about Parkinson’s when her yiayia got diagnosed.
In February, she was appointed CEO of Parkinson’s Australia after years of involvement with the Parkinson’s community.
“I would like to raise awareness about all the different symptoms of Parkinson’s because I don’t think that people do understand how complex the condition is and how it can influence someone’s life.”
To this day, Olivia’s yiayia continues to be the “driving force” behind her efforts in supporting those affected by Parkinson’s.
“Everything that I do in terms of Parkinson’s advocacy, I always feel like it has a deeper meaning and that I have a deeper connection.”
“National Advocacy. Connection. Awareness”
Parkinson’s Australia serves as the national advocacy body for the Parkinson’s community, providing support to individuals living with Parkinson’s, their families, caregivers, researchers, and healthcare professionals.
“National advocacy, connection, and awareness are Parkinson’s Australia’s three promises to the Parkinson’s community,” said the CEO who prefers the title “National advocate and Changemaker”.
Nassaris previously served as CEO of Parkinson’s SA, ACT, and NT for nine years, gaining valuable insight into the needs of people with Parkinson’s.
Now as CEO of Parkinson’s Australia, she advocates at “a more systemic level,” focusing on issues like the Aged Care Act exposure draft.
She ensures policies meet individual needs, including those with My Aged Care and Commonwealth Home Support Programme (CHSP) packages, and oversees NDIS reviews.
Investing in life experiences
Nassaris’s dedication to helping others extend beyond Australia.
In 2007, she faced the dilemma of figuring out what to do with the money from her voluntary redundancy.
Instead of using it towards “a deposit for an apartment,” as many might, she instead volunteered in Rio De Janeiro.
“I wasn’t the kind of person that could just go on holidays. I wanted to choose a place where I could volunteer,” she said.
Nassaris sought a location where the locals “didn’t speak English” so she could be “forced to learn another language.”
Rio de Janeiro in Brazil “just met all those requirements.”
There, she ran a non-profit organisation, which ran projects in the impoverished months in favelas, taught English, worked on domestic violence programs, and sports for children.
She then ran a community centre for children in the favelas with an NGO called Iko Poran.
Soon she was leading the organisation as its director, placing volunteers from around the world in projects, who got to experience “the real side of Rio.”
Back home
In 2012 Nassaris left Rio de Janeiro founding herself back in Adelaide, and was soon a mother.
She began to work at Parkinson’s SA, and “everything fell into place.” It was “a natural synergy,” she said.
“It was just serendipitous. I felt like it was matching all my experience working in non for profit (organisations) and all of that together, what I’ve been doing in Brazil together with a little bit of serendipity from knowing about Parkinson’s from yiayia […]”
“I thought this is where I can make my mark, this is where I can use my expertise.”
Despite not having an educational background strongly linked to her career path, Nassaris’s work history reflects her dedication to making a positive difference in the lives of others.
Known and lesser-known symptoms of Parkinson’s Disease
Parkinson’s Disease (PD) “is the second largest neurological condition in the world,” says Nassaris. It impacts on motor and non-motor functions.
It is linked to a lack of dopamine, a key-neurotransmitter for “movement” but also “motivation, mood, reward and learning.”
The most “well known” motor symptoms include tremor, shuffling when walking, sudden, involuntary inability to move (freezing of gait).
Nassaris says that lesser known are “non-motor symptoms” such as depression, anxiety, apathy, along with sensory deficits such as loss of smell, sleep disorders, incontinence (involuntary loss of urine) and constipation.
PD gets worse gradually over time, and while there is currently no cure, she said “some amazing organisations across the world are doing research into a lot of different areas,” offering hope for potential treatments.
Breaking down barriers
Nassaris says that living with Parkinson’s, especially in older age, requires “higher levels of care” in the home, due to the disease’s neurodegenerative nature, which differs “from ageing and frailty.”
She says people with Parkinson’s, including those with young onset, could benefit from more support through the National Disability Insurance Scheme (NDIS) or My Aged Care (MAC).
She said those living with PD, in regional, rural, and remote areas struggle accessing healthcare due to a shortage of nearby doctors and health professionals.
“There is a workforce issue that we know exists and especially in those regional areas and sometimes even in metro areas.”
According to Nassaris “navigating systems like MyAged Care or NDIS” can be particularly challenging for culturally diverse communities, such as the Greek community, where English is not their first language.
“That is one of the things that Parkinson’s Australia would like to focus on, how can we break down those barriers for people that are trying to connect with support services.”
Throughout her involvement with Parkinson’s advocacy, she has learned that “the Parkinson’s community is a warm and accepting community.”
“People who have been given a diagnosis of a condition that has no cure, show wonderful strengths and resilience. I’m very honoured that I can be a part of that.”
A natural synergy
Nassaris has held many roles in welfare and social justice, including at the National Tertiary Education Union and the NSW Nurses and Midwives Association, and she is currently pursuing a Master of Business Administration.
As CEO of Parkinson’s Australia Nassaris she wants “to influence federal health and social policies that will have an impact on people living with Parkinson’s, their families and carers.”
“I would like for Parkinson’s Australia to be the source of truth for education and information for people to help manage the disease and live well with Parkinson’s.”
Driven by her passion, she counts herself among those “who love their work.”
“I am absolutely one of those people that gets to get up every day and do something that I absolutely love and that I have an emotional attachment to.”
