what is it, and how does it affect people who have it?

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.

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.

“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.