My [Parkinson’s] Life
Having Parkinson’s is just one aspect of a person’s life story. We want to share more stories of the varied lives of people currently living with Parkinson’s.
Fran Hayes was the second of five children and spent her early years in Hoxton Park – then full of market gardens and dairy farms on the outskirts of Sydney.
“My father thought he’d have a go at dairy farming, but this was short-lived as government policy changes made it untenable for us to keep it up,” said Fran. “Dad ended up going back to work in town.
“It was a very free and enjoyable childhood. Then that area was rezoned light industrial, and my grandparents were starting to need care, so we moved to Rockdale.”
Fran attended Catholic girls’ schools at Liverpool, Hurstville, and Ashfield, and was the first in her family to go to university, studying social work at Sydney University.
“It was a very exciting and enjoyable time,” said Fran. “I met my partner of 48 years there. He had a teaching scholarship. I didn’t want to work in a hospital setting when I finished.
“I’d done an arts major in Government and had a real interest in politics. I was interested in community work; organising and advocating for people needing help.”
After graduation Fran worked in a number of community work positions and in 1977 began working as a volunteer for the newly formed Australian Social Welfare Union becoming the New South Wales delegate to the National Award Committee in a matter of weeks.
“I was encouraged and told I could do it,” says Fran. “Women were rare in union leadership positions back then.
“I was soon involved in the campaign to negotiate a national award. This took four formal hearings before going to the High Court in 1983. It was a unanimous decision in our favour and is now in textbooks – a real David and Goliath battle, because at the start we were a bunch of social workers knowing nothing about industrial relations.
“I had become the National Organiser and President and spent three very interesting years with the union. I learned so much. Unfortunately, the costs of fighting each court case led to disputes over how the union was spending its money. I had to get another job before the final victory.”
In 1981 Fran began as the first female training officer at the new Clyde Cameron College, the national training centre of the Trade Union Training Authority (TUTA).
“I loved the College” said Fran. “I met lots of wonderful people and was able to teach to my strengths.”
Fran worked for TUTA till 1988, when she had her daughter. Some of these years with TUTA were spent based in Sydney. Within this period, Fran also worked as an organiser with a public sector union for two years.
After a period of maternity leave, Fran worked in a NSW public sector policy position for three years. She returned to TUTA in 1992 and was there till its abolition by the newly elected Howard government in 1996.
Fran proceeded to establish her own business, Fran Hayes Workplace Solutions, assisting organisations to understand their legal rights and obligations in employment, which she continues to run today.
“In 2011 I realised I had developed a limp in my right leg,” she recalled. “I couldn’t work out what it was. A friend told me that there was something wrong with my right arm, I was holding it strangely.
“I went to a doctor I knew who said it was a side effect of some medication I was on. I wasn’t convinced and over the next couple of years saw a neurologist and had a lot of tests and scans done. I was told they were looking for Parkinson’s but didn’t think I had it.
“In the end it was diagnosed as Parkinson’s in early 2014. I asked what it meant and he told me it wasn’t fatal, but I had 15 years.”
With no experience of Parkinson’s, Fran began researching the condition and found the counselling service at Parkinson’s NSW.
“I had a phone counselling session with Shushann Movsessian, and she told me she thought I’d like the Ultimo Parkinson’s Support Group,” says Fran. “She said there were a lot of very intelligent professional people there, being close to Sydney University, so I joined.
“I also discovered Dance for Parkinson’s in Alexandria and started going weekly. That also became very important in my life.”
Fran soon made friends in the group and began assisting Chris Davis, the long-standing leader of the group, with aspects of his role. Fran phased into the Group Leader position when Chris was ready to retire from the role in 2019.
“Groups evolve as some people’s condition deteriorates and others pass away, but we still had 25 to 30 people at our meetings before COVID-19,” said Fran.
“Zoom meetings didn’t suit everyone and we lost some active members in the last year. We also had to move meeting locations twice. Now we only have half a dozen at face-face meetings, which makes it hard to get speakers.
“Because my condition has deteriorated I looked for someone to help out so I could step down. Some others are now willing to help. Parkinson’s NSW is helping us transition to monthly lunches at a café for social contact. Maybe new members will emerge from that.”
Fran says her partner and her family have been very supportive as her condition has progressed.
“I also have excellent friends, mostly ex-social workers,” she said. “I’m very well provided for. My doctor is currently telling me I should be getting a walker, but I’m sticking to a walking stick for now.
“It is hard to face up to deteriorating abilities – such as finding it difficult to put on my cardigan or find something in my handbag. I still want to wear nice clothes and jewellery and go to activities and be involved with things.
“But I could be a lot worse. I still have lots of things I’m involved in and projects to do.”