When the shaking starts, community matters most

For Nichole, it started with embarrassment. The tremors had been there her whole life – 54 years of shaking hands, a trembling voice, a body that drew attention in ways she never wanted. Like many people living with Essential Tremor (ET), she spent decades trying to manage not just the condition itself, but the shame that shadowed it.

“The embarrassment of my tremors controlled my life for a lot of years,” she says. “Until I decided to take control back.”

Nichole – known online as “Shakey Nan” – started sharing her story on social media, and something unexpected happened. People found her. Thousands of them. ETers, as she calls them, from across Australia and around the world who had been carrying the same invisible weight: often without a name for what they were experiencing, and often without a single person in their corner.

That isolation is a defining feature of Essential Tremor. It affects more than 300,000 Australians – making it one of the most common movement disorders in the country – yet it remains widely misunderstood. ET causes involuntary shaking in the hands, arms, head, voice and other parts of the body, and can affect people of any age. It is often hereditary. Nichole’s parents, her brother and all four of her children live with it too.

ET is routinely mistaken for anxiety or dismissed as “just nerves,” and clear pathways to diagnosis and support are hard to find. In rural and regional communities, where access to specialist care is already stretched and distances to the nearest neurologist can span hundreds of kilometres, that gap feels even wider.

When I first encountered the scale of this community – and the complete absence of any organisation speaking for it in Australia – I was stunned. More than 300,000 people, and no dedicated advocacy body to support them. I reached out to Nichole directly and asked: is there a need? Her answer was an immediate and resounding, “Yes.”

And so, Essential Tremor Australia was born.

Established in late 2025, Essential Tremor Australia is the country’s first advocacy body for people living with ET. Built alongside a Lived Experience Advisory Group, neurologists and allied health professionals, the organisation champions awareness, connection and support – from the first signs of tremor through to navigating daily life with dignity and confidence. We advocate for better recognition of ET within the health system, improved care pathways, and access to the information and tools that help people thrive, wherever they live in Australia.

For people in rural and regional areas, that means resources available online – peer connection and reliable clinical information that doesn’t require a four-hour round trip to access.

Nichole puts it simply: “I know it is a hard way to live, but once we find our way to do things with our shaky hands, you’ll be surprised what you can do. Please don’t give up.”

This October, the community takes its next step. On the 24^th, Essential Tremor Australia hosts its Inaugural National Conference in Sydney – the first dedicated national gathering for the Australian ET community. The day brings together leading clinical experts, allied health professionals and a lived experience panel to explore the latest in ET care, treatment options and practical strategies for everyday life. The conference welcomes people living with ET, their families, carers and healthcare workers. For a community that has waited a long time to be seen, this conference is more than an event. It is a beginning.

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