A word with... Christine Jeyachandran

A story of incredible resilience, discovering one's voice and making an impact

A word with... Christine Jeyachandran

A story of incredible resilience, discovering one's voice and making an impact

Christine Jeyachandran, a dedicated advocate and health consumer representative, is passionate about raising awareness about Parkinson’s disease and improving the care available for those affected.

Her journey as an advocate began when she was appointed an ambassador for the 2023 World Parkinson’s Congress. This role allowed her to connect with the Parkinson’s community, raise awareness, and push for better services and support systems.

Join us as she tells HCNSW’s Julia Brockhausen her story of incredible resilience, discovering her voice and making an impact.

A young woman in a nice blue dress on a grey background.

What was the experience of being diagnosed with Parkinson’s like?

It all began with small signs—like dropping things. I remember dropping a set of mugs one day, and my husband said, “That’s unusual. Let’s talk to the doctor.”

We visited the doctor, who conducted tests to rule out various possibilities. He eventually referred me to a neurologist, though he wasn’t entirely sure what the issue might be. We needed to travel to the capital of Pery, Lima to see a specialist.

The neurologist immediately recognised it as Parkinson’s. It’s unusual to receive such a quick diagnosis, especially if you are young.

What happened next?

Of course, we turned to Google for answers, which was overwhelming. Initially, it was a huge challenge because Parkinson’s isn’t a condition where you’re bedridden—you’re encouraged to keep living a “normal” life. Over time, I learned that exercise was essential.

By the fourth year, my condition had worsened. I started falling—often to my face—because my arms weren’t quick enough to break the fall. Walking became difficult; my feet dragged, and I lost coordination. One moment that hit me was at a kid’s birthday party that I attended with my children. A clown was leading action songs, and I realised I couldn’t lift my arms to follow along. It was a wake-up call.

What steps did you take to manage your condition after that realisation?

That moment made me realise I needed to take action. I joined an adult gymnastics class run by my children’s gymnastics coach. It was daunting – I knew how tough he was on the kids – but he encouraged me to try.

It was incredibly challenging. I wasn’t used to physical activity and was far behind everyone else in the class. But the coach and other participants were so encouraging. Over time, I started to push through the difficulty, and I began to see progress.

Being in Peru was a big reason I started gymnastics. If I had been in Australia, I might have opted for something more traditional – like a Parkinson’s exercise group that is often geared towards older people. Those groups are wonderful and incredibly helpful, but I felt I needed something different.

Firstly, I had to improve my mobility, range of movement, flexibility, and strength before I could try to do handstands or other gymnastics exercises. It was very hard, but gradually, I began to enjoy it. Recently, I became injured, so I need to be careful.

The process of regaining movement and coordination through gymnastics has been incredibly empowering. It’s also allowed me to show others that they can find ways to keep moving – whether it is through something as challenging as gymnastics or simply finding an activity they love.

The picture shows Christine sitting at a desk working on a laptop.
A woman standing behind a lectern speaking into a microphone to several men seated on a table
A woman speaking into a microphone to a crowd of people.

Who or what was instrumental in helping you take on this challenge?
It was a combination of my coach in Peru, the group I trained with, and my family and community. My coach was excellent—he was tough but very encouraging. My classmates were incredibly supportive. They held me accountable, and I knew I’d be missed if I didn’t show up.

We trained for two hours a day, three times a week, which was a serious commitment. I don’t train as much now, but those sessions gave me the foundation to keep pushing myself. They also showed me the importance of a supportive community in achieving your goals.

I even created a video about my journey for the World Parkinson’s Congress, and it was shortlisted as a finalist. Attending the Congress was a turning point for me. Physiotherapists, attendees, and others told me how inspiring my story was. Their encouragement gave me the confidence to keep going and push my limits.

Did attending the Congress open your eyes about becoming a voice for Parkinson’s patients everywhere?

Yes, it was. The Congress was held in Japan, so I dropped my family off in Australia and travelled alone to Japan just three days later. It was a big step for me, but it was incredibly invigorating.

At the Congress, I met so many inspiring people, including young peer advocates for Parkinson’s. Until then, I hadn’t met anyone my age living with Parkinson’s, so it was a powerful moment of connection. Seeing how hard they worked in their communities and how dedicated they were to raising awareness really encouraged me.

By that time, I had already started reaching out to my community in Peru, where I was living. I realised that there was very little understanding of Parkinson’s and the benefits of exercise. I began organising a support group and speaking at events for the Parkinson’s Association in Lima, the capital.

How has your journey shaped your outlook on living with Parkinson’s?

Since that time, my attitude has been to keep moving forward. Parkinson’s is tough, but I’ve learned that with determination and support, I can achieve things I never thought possible. Gymnastics, for example, has become a fun and empowering way to manage my condition.

Meeting others in the Parkinson’s community has also been incredibly motivating. Their stories, along with the encouragement I’ve received, continue to remind me that I can keep pushing and achieving more.

10 people, including Christine, are standing in a row, smiling at the camera.

Can you tell us a bit more about the support group you started in Peru?

I started a support group in my local city of Arequipa. The goal was to connect people with Parkinson’s, share resources, and raise awareness. Later, I expanded the initiative into an international group across Latin America.

Through that network, I realised how little was known about the needs of people with Parkinson’s in the region. This inspired me to take on a research project to better understand those needs.

What did the research focus on, and what role did you play?

The research focused on the experiences of people with Parkinson’s in Latin America, particularly around diagnosis and access to healthcare. Many people struggle to accept their diagnosis, and it’s often hard for them to transition into being active patients who engage in exercise or therapy.

The project started when a doctor who participated in my group approached me about collaborating on research. I told him my vision: to scientifically establish the needs of people with Parkinson’s in Latin America. There was plenty of anecdotal evidence, but I wanted data to support our efforts.

Initially, it was going to be a small report, but it grew into a full scientific paper. My role expanded as the project developed. Now, I am the lead author. I led the project with guidance from the team and my university supervisors in Australia who were very helpful. The paper is now in peer review, and we’re waiting for it to be published.

How has your lived experience shaped your work as a researcher and advocate?

My lived experience has been central to everything I do. It’s given me insight into what people with Parkinson’s face every day, from the challenges of diagnosis to the importance of staying active. I’ve tried to use my experiences to inspire others and to advocate for better services and support.

Whether it’s through gymnastics, starting support groups, or engaging in research, my goal has always been to show people with Parkinson’s that they’re not alone—and that they can take control of their journey in meaningful ways.

It’s great that the Peruvian support group is still active. Looking back, what would you say was the most rewarding part of your work there?

The connection with the people. Knowing that I could make even a small difference in their lives, was immensely rewarding. The friendships I formed and the trust they placed in me were really special. I still talk to all these people regularly and send resources and webinar links.

It sounds like you’ve made a lasting impact. How have your experiences in Peru shaped the way you approach your work here in Australia?

I think my time in Peru made me very resourceful. Over there, you had to work with very limited resources, so I learned to be creative and focus on what people truly needed. It also taught me the importance of empathy and understanding cultural differences. That experience has been invaluable in my work here, especially when working with multicultural communities. I’ve also realised how important it is to keep fighting for systemic changes, even when progress feels slow.

2 women and a men stand in front of a Peruvian Parkinson's organisation banner.

You mentioned earlier that you’re planning something for World Parkinson’s Day. Could you tell me more about that?

Yes! I’m working on organising an awareness campaign that highlights the importance of exercise for people with Parkinson’s. I want to focus on the practical, everyday benefits and share stories of people who have transformed their health through movement. I’m passionate about spreading the message that exercise is such a powerful tool, and not enough people with Parkinson’s are aware of how much it can help.

You’ve spoken a lot about the challenges people face, both here and in Peru accessing and navigating healthcare. What do you think could be done to make services more accessible?

I think it starts with providing people with proper navigation support. Whether it’s in Australia or Peru, people often don’t know what they’re entitled to or where to begin. In Australia, there’s funding and resources available, but the system can be so complex that it feels inaccessible.

We need to simplify these processes and offer personalised guidance for patients. Also, raising awareness among healthcare professionals about the specific needs of Parkinson’s patients would make a big difference. In Peru, the focus needs to be on providing more basic services and education about the disease.

That’s a powerful call to action. If you could share one message with healthcare professionals about Parkinson’s, what would it be?

I’d tell them to look beyond just prescribing medication. Parkinson’s is so much more than that – it’s about mental health, physical activity, community support, and understanding the whole person.

Small interventions, like encouraging exercise or connecting patients with support groups, can have a huge impact on their quality of life. Listen to your patients; they often know what they need but might not have the tools or confidence to express it.

2 women, one in a wheelchair and the other behind her, are standing in front of a sign.

Thank you so much for sharing your story and insights, Christine. It’s been incredibly inspiring to hear about your journey. I look forward to seeing the incredible work you’ll continue to do.

Thank you, Julia. It’s been a pleasure speaking with you. And I hope this conversation encourages more people to get involved and advocate for change. Together, we can make a real difference.

How to follow Christine’s work:

Blog: https://handstandforparkinsons.com

Youtube: https://www.youtube.com/c/ChristineJeya

 

For more information about Parkinson’s and the community in NSW, you can also check out Parkinsons NSW (A HCNSW Voting member organisation)

 

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