Finding My Voice: Living and Advocating with Young Onset Parkinson’s
When I was diagnosed with Parkinson’s in 2011 at the age of 47, it felt like the ground had shifted beneath my feet. My husband and I were completely blindsided—we didn’t know what to expect, but we knew this wasn’t something we wanted. As a Registered Nurse working in a doctor’s surgery, I thought I had a pretty good handle on medical conditions. But the truth is, I had no real understanding of what living with Parkinson’s would look like.
In those early days, I turned to Google for answers while waiting for my next appointment with a neurologist—not ideal, I know. That’s when I stumbled across Shake It Up, a newly formed Parkinson’s research foundation. I reached out, got involved in fundraising, and began dipping my toes into advocacy.
At the time, one of the most frustrating things I kept hearing was: “Aren’t you too young to have Parkinson’s?” There was (and still is) a widespread misconception that Parkinson’s is an old person’s disease. I realised then that I wasn’t just managing a condition—I was also navigating a huge gap in public understanding.
I wasn’t planning to share my diagnosis at work, but one day a patient asked why I was limping. I gave a vague answer about a sore knee, but eventually I just said, “I have Parkinson’s.” She looked at me and said, “Oh, I’m sorry.” It caught me off guard. I didn’t want pity—I wanted people to understand.
Life moved on, and so did we. When my husband’s job took us overseas, I stubbornly refused to start on levodopa. Looking back, that was a mistake. I ended up injuring my foot, needing surgery, and developing a long-term issue that could’ve been avoided. When we returned to Australia—this time settling in Melbourne—I finally added Levodopa to my medications, and the difference was like night and day - I felt like my old self again.
That’s when things really began to change.
I connected with Parkinson’s Victoria (now Fight Parkinson’s) and started sharing my story. I have continued to actively work with them because I believe that someone living with Parkinson’s should have a seat at the table. When COVID hit, I channelled my energy into advocacy and fundraising. I joined the 27 for Parkinson’s challenge, walking every day for 27 days. I even added a twist—“27 Dresses”, inspired by the movie. It was a hit!
Over the years, I’ve worn many advocacy hats: I’ve been an ambassador for A Walk in the Park, hosted an online support group, run a Young Onset support group, served on the Board of Fight Parkinson’s, chaired the Engagement & Advisory Committee, acted as a consumer representative for the Walter Eliza Hall Institute (WEHI), chaired the Consumer Advisory Committee for Parkinson’s research, and contributed to a research team helping scientists and clinicians understand the real-life experience of living with Parkinson’s.
And now, I’m incredibly honoured to be the Australian Ambassador for the 7th World Parkinson Congress to be held from May 24 – 27, 2026 in Phoenix, Arizona.
WPC 2026 is not your typical medical conference. It’s a one-of-a-kind global gathering where people living with Parkinson’s, researchers, neurologists, health professionals, and caregivers come together. It’s a place to share stories, collaborate on research, and most importantly—be seen and heard.
Being a voice for young onset Parkinson’s is something I’m deeply passionate about. The public still doesn’t understand this disease well enough. Why isn’t Parkinson’s talked about the way we talk about motor-neuron disease (MND) or breast cancer? Why does it still feel invisible?
The truth is, most people don’t notice me. I don’t look “sick.” I’m not famous. I’m just an ordinary person living with Parkinson’s, but I am not alone, there are nearly 11 million “ordinary” people living with Parkinson’s globally. Perhaps we are “extraordinary”? Either way, I believe we need to raise our voices louder and make sure this condition is no longer dismissed or misunderstood.
There is hope. There’s incredible research happening all over the world, but I want to see even more collaboration. Imagine what we could achieve if scientists, doctors, and advocates worked together more closely. Parkinson’s is such an individual disease with so many variables, but we can make a difference through awareness, education, and unity.
So, if you’re thinking about attending WPC 2026—do it. It’s an amazing opportunity to learn, connect, and be part of a global movement. You’ll meet people at WPC who are doing incredible work and living boldly with Parkinson’s. Come find me, I’ll be there.
In the meantime, let’s raise our voices together and get Parkinson’s the attention it deserves.
Sheenagh Bottrell is a Registered Nurse. She was diagnosed with Parkinson's in 2011 and currently lives in Melbourne, Australia. Sheenagh has attended past WPC Congresses. She is currently WPC 2026 Ambassador.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not reflect the opinions or positions of the World Parkinson Coalition®