Six years ago, Paula Argy (Argyropoulos) was confined to a wheelchair, grappling with the debilitating effects of Parkinson's Disease. Fast forward to 2024, and she confidently walked the runway at Australian Fashion Week, thanks to a groundbreaking drug trial for Vyalev.
At 53 years of age, Paula has been living with early onset Parkinson’s for 34 years, since she was just 19 years old. Her journey to the runway began with an unexpected phone call from Jordan Gogos, the Greek Australian multidisciplinary artist and founder of the fashion brand Iordanes Spyridon Gogos. Paula’s 22 year old daughter, Mary, had been working for Gogos, and their shared passion for fashion and art became the bridge to this opportunity.
“He’s a visionary, isn’t he,” Paula gushes about Gogos. “When I was younger, I was very much part of that mindset as well. I loved the fusion between art and fashion. As a teenager, that’s what I did. When my daughter Mary started working for Jordan, I thought this is my stuff all to a T, it’s all my worlds coming together – it’s so fun.”
When Jordan asked Paula to walk in his show, she was overjoyed. “I was screaming my head off yayyyyy!!”
Renowned for his innovative fashion approach, Gogos is known for selecting his models for their diversity and unique stories they represent, celebrating inclusivity and distinctiveness in his runway events.
“I want you to represent Parkinson’s, I want you to represent people with disabilities,” he told her, aware that Paula has been a vocal ambassador for Parkinson’s NSW for a very long time.
Despite the excitement, with her daughter working as the show’s Head of Design and Production, managing 44 models backstage, Paula found she had no time to dwell on her own nerves.
“Even though I was nervous to be walking the show on behalf of people with disabilities and Parkinson’s, my heart was bursting at the seams because my little girl was running all this, and she’s only 22! So I was more focused on her than I was on myself which is probably a good thing and what got me through!”
Paula’s dramatic transition out of the confines of the wheelchair all the way to strutting gracefully down the runway at Australian Fashion Week was made possible by Vyalev, a new drug that has significantly improved her condition.
Early Dreams and Challenges
Paula’s parents, goat herders who migrated from Greece to Australia, had a profound influence on her resilience and work ethic. Her father originated from Skopelos Island, while her mother came from Evia. Initially living in Kingsford for a brief time, the family settled in Manly, where they opened a quintessential Greek milk bar. “It was really different because there were no Greeks in Manly at all at that time,” Paula recalls.
Paula's love for fashion began early, fostered by her mother, who sent her to Saturday afternoon sewing classes – after Greek school of course. “I was sewing from the age of 13. I sewed all of my formal gear – I made everything!” she recalls.
Upon leaving high school Paula studied at Sydney’s White House Institute of Design, however despite her passion for fashion, her early dreams and studies were interrupted by the onset of her condition. “I didn’t finish it, because my symptoms started to get in in the way,” she explains.
After initially being misdiagnosed with a benign essential tremor, a doctor finally confirmed Paula had Parkinson’s when she was 29.
“I was married young at 23, my Big Fat Greek Wedding style,” she laughs. The tremors she experienced walking down the aisle during her wedding, causing her bouquet of tulips to shake as if it had a “100 mph motor in it” she initially dismissed as nerves.
“And then I was divorced 10 years later,” says Paula, who raised her daughters Mary and Greta from the ages of 3 and 1 on her own as a single mum after her marriage broke up, predominantly because her husband couldn’t cope as her disease progressed.
“After that I didn’t really have a relationship for a very long time because I just got sicker and sicker, and my focus was 100 percent on the kids.”
Almost two decades later, following in her fashionista mother’s footsteps, Paula’s extremely talented daughter Mary earned a full honours scholarship to University of Technology Sydney’s (UTS) textiles design and technology upon graduating high school. In her first year of study she applied for an internship with Jordan Gogos and started working with him on his first 2020 Fashion Week Show, followed by each successive show thereafter.
“Mary has the most amazing work ethic, she would stay back working almost every night. I don’t know if it’s the Greek in her or if they just worked together really well, but she was just really passionate about it,” Paula explains proudly. “She ended up collaborating with Jordan as an intern on a piece and her piece was bought by the National Gallery of Australia – so now it’s on display there at the moment. The next year she started working for him.”
The Reality of Parkinson’s Disease
Parkinson’s Disease affects more than 10 million people worldwide. While it’s often seen as a disease of older people, thousands of individuals under 65 live with young-onset Parkinson’s. This reality brings unique challenges, as younger people with Parkinson’s often need to conceal their diagnosis to maintain employment and face significant disruptions in their personal lives.
"While no one with Parkinson's sees it as a normal part of life, those diagnosed after age 65 can often approach it more philosophically," explained Chris Davis, the late Former President of Parkinson's NSW in 2012, before passing away in February 2022 after a long battle with the disease.
“For younger people, though, it can be like a bolt of lightning, striking at the heart of one’s existence. And the earlier it strikes, the bigger the shock. Dealing with Parkinson’s Disease is always hard but, for a younger person, doubly so: relationships can suffer; between partners; with children; and with peers.
"For someone of retirement age, stopping work is a normal step; often some wealth has been accumulated; and responsibilities have diminished. For people of working age, though, staying in employment as long as possible is important; money can create challenges; and responsibilities abound.
“Because the majority of Parkinson’s sufferers are older, services and facilities tend to fall into the aged care basket. This can be galling for younger people who don’t feel as though they fit into that category.”
As an ambassador for Parkinson’s NSW, Paula’s focus is on making people aware that young people can get Parkinson’s. She has been involved in numerous television campaigns and awareness initiatives, appearing on The Morning Show, The Project, and SBS campaigns, among others, to raise awareness about young-onset Parkinson’s and the new treatment options available.
“People don’t understand especially when I was much, much younger, that someone so young can get Parkinson’s. So they get confused and ask questions like 'Are you cold?' or, 'Are you nervous?'” says Paula.
“It’s the fastest growing neurological disorder in the world,” she says. “I get so many people contacting me saying ‘I’m 43’ or ‘I’m 38.’ Younger people are coming out of the woodwork, whereas Parkinson’s in mostly associated with an older person.”
In her work, Paula has also played a significant role in a working group which has developed the Young Onset Parkinson's Exchange (YOPX) app, an information exchange centre for young people with Parkinson’s. The app provides essential resources on topics such as pregnancy, relationships, and drug trials, offering a lifeline to those navigating the complexities of living with the disease.
"The YOPX app is a tool that connects young people with Parkinson's to the resources and support they need. It's about creating a community and ensuring no one feels alone in their journey," Paula explains.
"Despite being the world's fastest growing neurological disorder , Parkinson's doesn't really get the funding, the exposure, the awareness that needs to be there. So I just keep plugging away to get the support people need."
The Miracle Drug: Vyalev
Three years ago, Paula began a drug trial for Vyalev, which marked a turning point in her life. “I basically went from a wheelchair to moving 20,000 steps a day,” she says.
AbbieVie's Vyalev, a continuous, subcutaneous infusion treatment, delivers a stable supply of levodopa and carbidopa, crucial for managing motor symptoms in advanced Parkinson’s Disease. The first new treatment for advanced Parkinson’s disease in a decade, it brings a much needed new non-surgical option to patients who seek options when managing their disease.
Currently available in Canada, Vyalev “gives hope to people with Parkinson’s that they will have access to more options to help manage their disease even in the advanced stages,” says Karen Lee, PhD, president and CEO of Parkinson’s Canada.
“I basically got my life back because of this trial. It’s been incredible,” says Paula.
“It’s like a little insulin pump, so the medication goes directly into the bloodstream 24 hours a day, preventing any periods of fluctuation,” she explains.
The trial's success has led to the drug’s approval by the Therapeutic Goods Administration (TGA), and it is currently awaiting Pharmaceutical Benefits Scheme (PBS) approval to make it affordable for Australians.
“Once it came out in the press that I was doing the trial, a lot of people contacted me asking how they can get it, when it will be available,” says Paula. “It’s a big thing in the Parkinson’s World to have this treatment that’s non-invasive.
“The next steps for me would have been a nine hour open brain surgery – and none of my family nor myself wanted that. Risks involved can include suffering from stroke, or losing your voice. Can you imagine me losing my voice?” laughs the vivacious mother of two.
From Advocacy and Awareness to Walking the Runway
In her role an ambassador for Parkinson’s Disease, Paula’s invitation by Jordan Gogos to walk in his Australian Fashion Week show was not only a highlight but a touchstone of just how far she has come since beginning the Vyalev drug trial, especially given where she was just six years ago.
“Obviously I went through a tough period where I didn’t feel the greatest —the past five or ten years were particularly challenging. I stopped dressing up and wearing makeup, and even gave away all my jewellery to my daughters, Mary and Greta,” Paula reflects. “I felt like I had lost all hope for the future. But once I started the trial, I began to take care of myself again, and my forte for fashion was reignited.
“So, when Jordan asked me to participate, it felt like all of my dreams were coming true. I felt so special and important and so seen and so mattered. For me representing people with Parkinson’s and disabilities as well as older women at the age of 53, a single mum – it was just amazing.
“Vogue released a backstage Fashion Week compilation video, and there I was in it at the end. It’s just unbelievable to see myself onstage, I still can’t believe I did it!” she exclaims.
“Often those of us with disabilities are not seen, we are not heard – we’re often just ignored,” Paula says. “It’s just really special to have that recognition.”
Despite the personal challenges she has faced over past decades, Paula’s commitment to giving back to the community extends beyond her ambassadorship for Parkinson’s NSW. She also volunteers for additional community initiatives including the annual Sydney Writers’ Festival and OneMeal, a charitable organisation dedicated to helping the underprivileged and homeless, highlighting her commitment to compassion and support.
“I felt like a lot of my soul and self-esteem was crushed with my diagnosis so I wanted to help in areas that I had always loved. It’s just voluntary but it feeds my soul. I love it and I feel like I’ve achieved a sense of fulfilment that I lost after I had to give up my career all of those years ago because of my health,” Paula shares.
“I don’t know if it’s the Greek thing in me, but you’ve got to give back. I’ve had all of this support from the community, support from my family and you can’t always take, take, take.
“I want to show my girls that we have to help each other in this world and show compassion and kindness.”
Read also: The Alchemist: Iordanes Spyridon Gogos at AFW ‘24
Stay updated with the latest news from Greece and around the world on greekcitytimes.com.
Contact our newsroom to share your updates, stories, photos, or videos. Follow GCT on Google News and Apple News.
