‘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.
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 Redfern 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 surgery, but I still wake him up at 3am. He never makes me feel like it's a problem. Everything's quiet and so we just lie there and talk.
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