‘Why wait?’ Emma and Martin bonded over their early-onset Parkinson’s

Both Emma Tinkler, 49, a former travel agent, and Martin Ostrowski, 50, a former marine scientist, have early-onset Parkinson’s disease. They met doing advocacy work and have been dating for almost a year.

Martin Ostrowski and Emma Tinkler. “We’d both had a really shitty time with our disease before we met and now appreciate good times,” says Tinkler.Credit: Dominic Lorrimer

Emma: I’d known Martin for a week when I asked him to come to a neurology appointment with me in May last year. It’s always good to have another pair of ears when you see a specialist. He agreed without hesitation. They always ask about your bowel movements at these appointments, but I felt totally comfortable discussing that in front of him.

It evolved from there. A month or so later, he texted me saying he was coming to my apartment via a patisserie. I messaged back, “That’s talking dirty.” Silence. I thought, “Oh god, I’ve gone too far too early.” Then he texted back, “Yes, 50 shades of caramelisation.” It was on. He made us a shared Spotify playlist and said “I love you” after two weeks. Which might freak some people out, but it didn’t bother me at all. We’d both had a really shitty time with our disease before we met and now appreciate good times. We thought, why wait?

No couple ever knows what’s around the corner, but having Parkinson’s brings up a lot of what-ifs. I try not to think about it too much because I can go to a dark place. One night early on, we were cuddling in bed when I thought about us together as old people and started to cry. People with late-stage Parkinson’s have a higher chance of developing dementia and I was picturing two old, lost
people. What would happen to us? Martin kept his cool; he just said, “I’ve got you.”

‘We never get the shits with each other about this stuff because we know how it feels.’

Emma Tinkler

There are bad days but also bad hours; it can change in minutes. If my gait is slow or it feels as if my body’s tightening from the inside and I don’t have the bandwidth for a proper conversation while I’m dealing with symptoms, Martin totally gets it. I was having a bad time on New Year’s Eve. We were leaving in 15 minutes to go to a party when I told him I didn’t think I’d be able to get there because my meds weren’t kicking in and I felt as if I had weights on my wrists and ankles. He said, “OK, let’s just stay in bed.”

We never get the shits with each other about this stuff because we know how it feels. If I need something from downstairs, I’ll say, “Are your legs working better than mine? Can you grab my phone?” Or when he’s having difficulty putting his socks on – one of the symptoms is a loss of dexterity in your fingers – I help him. He found it difficult to receive help at first because he’s been so independent.

Together, we’re trying to raise awareness of how many younger people get Parkinson’s [April is Parkinson’s Awareness Month]. It’s the fastest-growing neurological condition in the world. Before we met, Martin had deep brain stimulation (DBS) surgery; you’re actually awake for part of it. Although it’s changed his life, it still scares me to think about, but he just says, “You’ll know when you’re ready.”

Sleep can be an issue for people with Parkinson’s. His has improved since the surgery, but I still wake him up at 3am. He never makes me feel like it’s a problem. Everything’s quiet, so we just lie there and talk.

Tinkler and Ostrowski: “I liked spending time with her … And it seemed as if everything I liked, she liked,” says Ostrowski.Credit: Dominic Lorrimer

Martin: I remember meeting Emma. We were on a Parkinson’s panel – I’d been diagnosed in 2016, she in 2021 – and someone in the audience asked her a question. She was sitting next to me, so I handed her the microphone. Her eyes caught mine and something in me changed: I knew I’d found a kindred spirit.

About 10 to 20 per cent of people who have Parkinson’s are under 50, so we’re unusual. I wanted to hear her story, so we met up a week later. I was struck by how bright and bubbly she is. We were talking about the upside of having Parkinson’s, and there are advantages if you know where to look. Probably the main thing is you get to reassess the way you’ve structured your life and what’s important to you. You realise how much time you’ve wasted on things that don’t matter.

‘I hadn’t really thought that I’d have an intimate future with anyone; my motor functions had gotten quite bad.’

Martin Ostrowski

After that, Emma sent me a link to a podcast she’d been on talking about the disease. It was pretty revealing: she spoke about her past and some of the things she was worried about in the future, like whether she’d be able to be there for her two daughters, who are 11 and 14, as she got older. Listening to it, I felt sad – daughters need their mum – but I also wanted to be a support to her, have her back.

I liked spending time with her; we’ve both had to retire so we were free during the day. And it seemed as if everything I liked, she liked. There were these weird coincidences. On our second meeting, I brought her a croissant from my local bakery and she brought me one from hers. It took a few weeks before I felt a romantic connection; I hadn’t really thought that I’d have an intimate future with anyone because I’d gotten quite bad with my motor functions. I’d become almost rigid and be unable to speak or move, which really restricted my capacity to leave the house. I was only having four to six good hours a day.

Now, thanks to the deep brain stimulation surgery, I’m more stable, whereas Emma’s more up and down. We’ve had moments where she gets “stuck” – freezing of gait is a common symptom; it feels as if your feet are stuck in cement and you can’t move. We’ll be on a train and have to miss the station. Or she’ll grab my arm and tell me what pace to walk at. When I’m sick, she can be a bit bossy. I don’t like having things done for me, whereas Emma’s used to organising her girls; she goes into parenting mode, whereas I like to do things, such as getting dressed, myself, at my own pace. It’s important to me to preserve my dignity.

When we’re together, it doesn’t feel as if we have Parkinson’s; we don’t forget, exactly, but we’re comfortable. Before DBS and Emma, I worried about the future, but I don’t now because my symptoms have stabilised and I’m confident the medical technology is going to keep up with the progression of the disease. I’m fairly sure that I’ve got another 10 to 20 years. Look at me! She gives me life – and courage.

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