Support network launched for Australians with essential tremor

It is the most common movement disorder in the world, but until now, Australians with essential tremor (ET) lacked a support network to advocate for their health and wellbeing.

Essential Tremor Australia was launched on Friday last week to drive change for the more than 300,000 Australians living with the condition.

ET is an action or movement tremor that most commonly occurs while performing activities such as eating, drinking, writing, typing, brushing teeth or shaving, or when the hands are in an outstretched position (postural tremor).

This is unlike Parkinson’s, which is a resting tremor that occurs when muscles are relaxed – for example, a hand trembles when the arm is resting in the lap – and often subsides during intentional movement.

Nichole Wilton – AKA “Shakey Nan” to her grand-daughter – has been documenting her life as an “ET-er” online for nearly five years

“I’m so excited to help launch Essential Tremor Australia to raise awareness and to help ET-ers around Australia learn how to live with this that little bit better and have information out there for them,” she said.

“It’s the most common movement disorder in the world – why isn’t it known?”

ET can start at any age of life. When it arises, people and doctors often dismiss it as “nerves” or “anxiety”. People often isolate themselves because of the stigma, and children with the condition are often subjected to bullying.

“I was bullied at school because of my shakes, I was an easy target for the bullies and I didn’t know what it was,” Ms Wilton said.

“When I was in my twenties I went to doctors and they dismissed it. As an adult people often accuse me of being on drugs or having alcohol withdrawals – it’s not easy to deal with that kind of judgement on a daily basis.

“We need Essential Tremor Australia so that other people with ET, especially children, don’t have to go through what I went through and can learn how to live well with ET.”

Olivia Nassaris, who is also chief executive officer of Parkinson’s Australia, has responded to Ms Wilton’s story of suffering by establishing Essential Tremor Australia.

“We’re launching Essential Tremor Australia today to support and connect the more than 300,000 Australians living with essential tremor,” Ms Nassaris said.

“One of the most important things for people living with an incurable condition is connection with your community – knowing there are other people out there going through what you are.”

Australians with ET previously did not have a place to go for up-to-date information and support.

“We don’t want people to `Dr Google’ their condition. We have created a resource where people can go to learn about managing symptoms, the diagnostic process, options for treatment and the hacks for living well from people like Nichole. Essential Tremor Australia aims to bring hope to people living with the condition,” Ms Nassaris said.

“We want politicians, doctors, other health professionals, educators, employers to learn about essential tremor so that we can reduce the stigma that exists in the community.

“We want to raise awareness and education in the community so that people know: it’s not nerves, it’s not drugs or alcohol addiction – it’s essential tremor.” For more information, head to essentialtremor.org.au