My Life With Parkinson’s
Tea Showers, Tremors and Not Losing the Plot. Parkinson’s is caused by the gradual loss of dopamine-producing cells in the brain. Dopamine controls movement, mood, and motor function.
“Nic, you’ve got Parkinson’s,” said my oncologist.
Not my neurologist. Not my GP. My oncologist.
If you’re wondering why a cancer specialist was the one diagnosing me with a neurological disorder, you’re not alone. I sat there, trying to work out if he was joking. He wasn’t.
In hindsight, the signs had been stacking up for years—but none of them made sense in isolation. Frozen shoulder? Blamed it on swimming. Wee leaks? Chalked up to post-baby pelvic floor fun. Hands locking up? Must be carpal tunnel. I even had surgery for that. Didn’t help.
Then came the choking—sitting mid-meal, suddenly forgetting how to swallow. The tests said I was fine. I wasn’t. My walk got stiffer, slower. But I’d had breast reconstruction surgery—made sense to pin it on that.
When lesions showed up on my sternum, I was back under oncology, just in case the cancer was back. It wasn’t. But by then, one leg had started subtly trembling, just enough to make me doubt myself.
People at work started asking if I was alright.
“You just look a bit… fed up.”
Turns out I wasn’t fed up. I had facial masking, one of the lesser-known Parkinson’s symptoms. Your face stops showing emotion properly. Mine had defaulted to a permanent “mildly irritated” expression.
Meanwhile, typing became a chore. The tremor was growing stronger, and my hands weren’t keeping up. I switched to voice dictation—which is fine, unless you’ve got an accent or try saying the word “neurologist” without it morphing into “new roll of gist.”
Mentally, things were unravelling. I’ve always been a bit of a worrier, but this was next-level. Catastrophising. Sleeplessness. Anxiety. And still working full-time. Because that’s what you do, right?
So when I sat in Mike’s office at 46 and reeled off my symptoms like a shopping list, he just nodded, checked for cogwheeling in my arms, and gave me the answer I didn’t see coming.
Parkinson’s.
And just like that, everything made sense.
For those who like to explain illnesses they don’t have to people who do: no, kale didn’t cause my Parkinson’s. Neither did a lack of celery juice.
Parkinson’s is caused by the gradual loss of dopamine-producing cells in the brain. Dopamine controls movement, mood, and motor function. Without enough of it, things start short-circuiting. You shake. You slow down. You lose control of the everyday things most people never think twice about.
At one of my talks, a woman who called herself a “nutritionist” told me eating kale was probably to blame. When I asked her what she thought Parkinson’s was, she described multiple sclerosis in great detail. Bless her.
I explained the actual science. She blinked. Then offered to add me to her Facebook group.
Living with Parkinson’s is unpredictable. Some mornings I wake up and I’m fine. Other days, the tremor kicks off before I’ve made it to the kettle.
Exercise has become a non-negotiable. I walk, swim or cycle every day. Not the triathlon distances of my 20s and 30s—those are long gone—but I still show up. Even on the days where the apathy rolls in and my body says, “Why bother?”
I’ve had to adapt. I wear flat shoes now. Ditch the buttons. Everything zips. I sleep in satin pyjamas so I can literally roll out of bed. Sexy? No. Effective? Absolutely.
Working from home has been a lifeline. No awkward handshakes, no questions about why I look like I’m frowning all the time. I still do full-time hours—it just happens on Parkinson’s time. Weekends, evenings, in bursts. The work gets done, and it keeps my brain sharp.
The fatigue is real. But so is the purpose. And the small wins. Like making it through a Zoom call without accidentally smacking my headset off my head. (It’s happened.)
Recently, I got medical clearance to go scuba diving again. Thought it was off the cards for good. But I’ve been diving—with my son, no less. Underwater, the tremor disappears. I’m weightless. Free. Present.
I know there’ll come a time when Parkinson’s takes more. That’s not negativity—it’s reality. But right now? I can still do these things.
So I do. Every chance I get.
I’ve started sharing more about life with Parkinson’s—plus the heart transplant, life after cancer, and the grief after the death of my daughter—on my website.
If you’ve made it this far, come visit. I’m building a space to talk honestly about living through hard things—with a bit of humour, a lot of grit, and a refusal to give up the craic.
👉 Visit nicrussell.co.nz
👉 Stay in the loop for the launch of my memoir
Nic is a writer, speaker and reluctant expert in staying upright while living with Parkinson’s, a heart transplant, and life after cancer. She’s the author of the upcoming memoir Bollix: When Life Isn’t All It’s Craic’d Up To Be, where she tells her story with sharp honesty and a strong cup of humour. When she’s not working, swimming, or spilling tea (literally), she’s figuring out how to live fully in the mess—and helping others do the same.
📍 Based in Auckland
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