“I had always wanted a tattoo,” Lyn Paunovic told the group of 50+ people packed into the Christie Downs baseball club. “But a tattoo needs to mean something.”

In front of the ageing crowd, she feels a little embarrassed to admit it—or to remove her cardigan and show off her inked upper arm. At 65 years old, Lyn finally had a good enough reason for a design. When she wears sleeveless tops, you will see a swallow. It represents healing and hope. Underneath the bird is a vine with little flowers and thorns, symbolising how she has good days and bad. At the end of the vine is a tulip, the international symbol of Parkinson’s disease.

Looking back, Parkinson’s has been a part of Lyn’s life long before her diagnosis. She was an aged care worker for more than 15 years and cared for many patients with Parkinson’s. She thought she knew the condition. But it’s not something you want to recognise in yourself.

Her earliest symptoms were easy to rationalise. She was always tired, but who isn’t these days? She started forgetting things and she’d lose a word here and there from her vocabulary. Later, a tremor in her right hand would wake her from sleep. Her handwriting deteriorated from neat script to an illegible scrawl.

She visited the GP multiple times over the next seven months. She continued working but stopped taking notes during meetings so no one would notice her tremor. She tucked her arms under the table and tried to act naturally. At an Aberfoyle Park low care facility, Lyn needed to walk down a long corridor to reach her client. She kept veering to the left, crashing her shoulder against the wall. “It felt like walking on cobblestones,” she recalled. An overwhelming sense of panic set in.

She received a referral and visited the neurologist. The first thing he asked Lyn to do was walk up and down the corridor outside his office. He took one look at her attempt and said, “You’ve got Parkinson’s.”

The day after she was diagnosed, Lyn was scheduled to visit a man with Parkinson’s for work – one of her regulars, Martin. Lyn used to do Martin’s washing and make sure he’d eaten lunch before he jumped in his car and drove to the local golf course. It had been a while since Lyn had seen him last.

Martin had become housebound. His Parkinson’s had progressed –he was fed medication through an infusion cassette and fitted with a catheter. Seeing him was terrifying. Lyn cried the whole way home, thinking, “This is going to happen to me.”

She resisted the diagnosis and put off telling people. The hardest was telling her adult children; her son Matthew and daughter Lisa. She was still in shock herself. The first few years were difficult; Lyn and her husband Tolley didn’t know what to expect.

She was on medication which helped her speech and memory and eased the tremor.  But a full day helping her clients wore her out to the point where she couldn’t remember getting home at the end of the day. Lyn and Tolley did what everyone else does when they need a break. They went on a holiday: a cruise. When they returned home, Lyn didn’t go back to the job she loved.

Lyn learnt Parkinson’s is linked to stress. The more stress Lyn experienced, the worst her symptoms became. Parkinson’s affects different people in different ways. It doesn’t follow a pattern. There’s currently no cure but it can be reasonably managed – with work. 

Lyn’s condition is mild to moderate. Still, she needs to take her tablets five times a day, at the right time. “A lot of people look at me and say, ‘You don’t look like you have Parkinson’s.’ That’s upsetting. They don’t see what I’m going through every day,” Lyn says. She needs to look after herself with exercise, keeping her mind engaged to keep her stress levels low.

She learnt a lot of this through her Onkaparinga Parkinson’s SA support group. When she first attended, the group was small. Still, she appreciated being able to speak with other people in a similar situation. A natural carer and fierce advocate, Lyn wanted to see more people find the sense of community she did within her support group. It wasn’t without a lot of hard work and long hours, but Lyn helped the group grow from just a handful of people to more than 50 members. Adding to her endless list of tasks as the group’s secretary, she now also needed to find a new meeting room. A clubhouse, a home, for this community.

The group means a lot to Lyn, she was happy to give back in any way she could. They helped inspire her to be more proactive about finding ways to manage her Parkinson’s. This attitude is what led her to Flinders University, where she first met biomedical engineer Dr David Hobbs and Orby.

Lyn helped David with some initial utility testing of the Orby gaming controller. Orby was initially designed for children with cerebral palsy. But as Lyn’s adult hands rested on Orby’s dome-shaped controller, it became clear that people with Parkinson’s could also enjoy the benefits of Orby.

Physical therapy is important to Lyn – like many people with Parkinson’s, she needs to make sure she continues using her right hand, even with the tremor. Cognition and memory training is another core part of therapy and management of Parkinson’s symptoms. Orby could help with both.

For Lyn, using the device was like feeling her Parkinson’s fade away entirely. After a few minutes, she was absorbed by the game. She understood how her grandson could forget she’s in the room when he plays a game.

David is running trials to test the effectiveness of Orby for people with Parkinson’s. He explains, “if the gaming catalogue works, it might actually have a positive influence on their cognition function. The positive influence is it could improve it or it could stop the decline and preserve the current state.”

Lyn would have liked to take Orby home with her and share him to help other friends with Parkinson’s. She can see how Orby could fit into her life and be another part of the puzzle as she describes it– the different pieces you put together to make up your life. And while that’s not possible yet, David is working with Novita on commercialisation. Learn more about the future of Orby.

When telling friends about her tattoo, Lyn wants to explain, “it’s not that I’m praising Parkinson’s but it’s just that it’s a part of my life.” Parkinson’s has pushed her to take risks, stand up in front of crowds, advocate for people who need to be heard and get the tattoos she always wanted (she has three now and is happily planning her fourth).

She’s met interesting people and made new friends. She takes care of her body and mind in new ways. Lyn calls herself a ‘Parky’ – it’s a way of forming her own definition of Parkinson’s in her life. Lyn won’t let Parkinson’s change her, “I don’t want to be my Parkinson’s. I just want to be myself, with Parkinson’s.”