As a teen, my hands began to tremble. It took decades to find out why

When I was young, I remember my father’s hands shaking at breakfast as he cut the top off a boiled egg and gave me the white end to scoop out and eat with a spoon. I didn’t judge his tremor; I imagined it was a sign of how busy he was, racing against the clock that sat on the wall above the fridge before he kissed us goodbye and drove to work. My own hands began to shake when I was 13, at the time my father died suddenly from a cause unrelated to his shaking.

The above memory appears in my recently published book about living with an elusive neurological condition that took me more than 40 years to discover: a movement disorder called dystonia. In my family’s case, the condition is almost certainly genetic. For those predisposed, its onset is often induced by trauma and stress – of which my father and later, I, had our share.

My decades-long journey with the debilitating hand tremors worsened with age, making it hard for me to eat or drink without visibly shaking. This was compounded by painful neck spasms that struck suddenly in my late 20s, while working in Canberra as a political correspondent for The Age newspaper. A head tremor then developed in my 40s. None of the many doctors and health professionals I consulted suspected my symptoms were related. The closest diagnosis I received was for a condition called essential tremor, for which I was told little could be done.

None of the many doctors I consulted could tell me what was wrong.Credit: iStock

In social situations, I tried, often unsuccessfully, to mask my difficulties to avoid the attention they attracted. Fearing I’d be negatively judged, I’d sit on my hands and say no to drinks of water in job interviews or meetings, or avoid work lunches with people I didn’t know. This could make me seem secretive, as if I had a hidden agenda. People began to ask if I had Parkinson’s disease or multiple sclerosis. Essential tremor didn’t seem dramatic enough. Why is an otherwise seemingly healthy, successful person unable to hold a cup of tea steady with one hand?

Tremors of the body affect more than 800,000 Australians and dystonia is the third-most-common movement disorder after Parkinson’s and essential tremor. My diagnosis came after years of uncertainty. It was in 2019, a balmy January night at dinner with friends and neighbours from our apartment building. On a penthouse balcony overlooking Sydney Harbour, I was going for an olive and a biscuit with cheese. One of our hosts, Kit, a cheerful woman with a direct manner and a no-nonsense strut, said she’d often noticed that my hands shook.

Understanding her condition brought on a flood of emotion for Sonya Voumard.Credit: Hugh Stewart

“Thought you had MS,” she said in her Welsh accent. Her partner Liz, a doctor of radiology who worked at St Vincent’s Hospital, had a more accurate clinical grasp, guessing it was essential tremor. A glass of wine, and then another, fixed it. But only temporarily. Liz gave me the name of a leading Australian neurologist.

So, it was in May of that year that I entered the St Vincent’s clinic rooms of the man who, finally, would give me answers to the mystery that had snagged me in ways big and small. I sat alone in the waiting room fearing what news the next hour would bring.

Dr Stephen Tisch was tall with dark hair and an athletic build; he wore glasses and radiated great warmth as he swept me into his office, moved and spoke quickly before giving me physical tasks to seek out my tremor.

“This is an example of my handwriting,” I wrote on a scrap of paper. The right side of my body formed a particular angle as I went to the page, he noted. So did my father’s, I told him. Tisch sat opposite me and gave me a pen on which to, slowly, put a lid, beginning with my hands held apart and out front. There it was. My hands not only shook as I struggled to make the two ends meet, they fluttered up and down. Tisch’s face lit up at my case’s apparent textbook nature. Not just essential tremor. Dystonic tremor. Mild to moderate.

A crucial detail of my life stole into my known world the day I met Tisch. And, like a journo late to a big story, I was desperately playing catch-up. Spooling back over decades, I tried to piece together the tell-tale signs of this genetic imperfection I’d brushed aside until I no longer could. I walked out of those rooms with my body in overdrive, my mind a blur. In my clenched, right hand was a script for nerve pain medication.

Pent-up emotions erupted into tears as I walked through the hospital-precinct fringe, where the competition for suffering was so stiff no one noticed mine. Because crying in public – when it’s me doing it – is one of my pet hates. Dystonia: the word was ringing in my head. I now had a name and an explanation for my bodily tremors. And I couldn’t wait to tell the world.

Writing deeply personal stories can be nerve-racking. You reveal so much about your own vulnerabilities, ditching privacy in the quest to share something universal. There must, you think, be others out there like me. Several dystonia sufferers have contacted me directly to thank me for writing my book and to report stories and histories similar to mine – and to tell me I’d made them feel less alone. We are all part of a community of movement disorder sufferers who spill our drinks, find swimming therapeutic and whose black humour includes wishing each other “happy shaking”.

Tremor, A Movement Disorder in a Disordered World (Finlay Lloyd) by Sonya Voumard is out now.

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