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Nichole ‘Shakey Nan’

I have had ET all my life, 54 years of progression has now led to full body tremors for me. ET is very hereditary in my family, both of my Parents, my younger Brother and all 4 of my Children have ET, thankfully theirs haven’t progressed like mine have.

The embarrassment of my tremors controlled my life for a lot of years until I decided to take control back by starting Shakey Nan on social media and raising awareness for ET. I am now so proud and honoured to be Shakey Nan, helping ETers all over the world to feel not so alone and learn how to live with ET a little easier. 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.

Shaneen

I live in Melbourne. I’m an editor and content person.

I learned I had ET over 30 years ago. My parents noticed during debating comps and recitals that my hands shook noticeably. So, we saw the GP, who referred me to a neurologist.

I shake when I lift a glass, write or hold something in front of me. And it’s worse when I’m rushed, stressed or tired.

My ET isn’t severe. But it is frustrating and it’s noticeable enough for people to say things like: ‘Don’t be nervous!’, ‘What are you on?’, ‘Big night?’, ‘Are you upset?’

Stefan

I’m Stefan, 33, and I live in the Macedon Ranges area of Victoria. I was born in Melbourne but have been living here for the past seven years.

I was officially diagnosed with Essential Tremor in January 2025. Looking back, I first noticed small tremors in my hands in my early 20s, but I didn’t think much of it at the time and put it down to things like gym fatigue. As I moved into my mid to late 20s, I started noticing it more when holding drinks or other objects. I mentioned it to a couple of GPs, but it was attributed to stress and anxiety, so I didn’t pursue it further.

Now in my early 30s and working as a chef — after previously running my own restaurant and still operating a catering business — I began to notice the tremors impacting my work more clearly. Tasks like holding dough tubs, typing on my phone, making pizzas, writing, pouring drinks, and even carrying items became more difficult. Working in hospitality requires speed and precision under pressure, and I could feel my body starting to struggle with some of those demands. That’s when I decided to investigate it properly, and two neurologists confirmed the diagnosis of Essential Tremor.

Since then, I’ve had to reassess how I approach my career. For my safety and wellbeing, I’ve stepped back from working full-time in the kitchen and am focusing more on the management and operational side of hospitality.

I try to stay positive and keep things in perspective, although there are certainly days where I wonder what the future may hold and how the tremor might progress. Being part of a group like this means a lot, and I’m glad to contribute to supporting others living with Essential Tremor.

Joan

I am a retired accountant and I currently live on the beautiful Queensland Sunshine Coast.

I was diagnosed with ET in 2012. However I had been living with tremors for many years before I was formally diagnosed.  My ET is familial and was inherited through my Mother’s family line, I remember my grandmother and one of my uncles having “the shakes” when I was a child. My mother’s tremors were so bad that she was unable to care for herself in the last few years of her life.  At least six other members of my immediate family also have ET.

I worked in my profession up until 2 years ago when I retired. However, I still do some voluntary work for charities and not-for-profit organisations. My other interests are lawn bowls, line dancing, gardening, and I also play a keyboard and ukulele.  I still manage to do most things. However, I find it difficult to cook and eat at times and never trust me to carry a plate or cup!

Like most other ET sufferers, I would love to see a cure for ET as quickly as possible so that our future generations don’t have to learn to live with ET like we have had to.

Maddie

I was formally diagnosed with ET a year ago but have lived with symptoms 10+ years at least.

I live in the beautiful Northern Rivers region and, when I’m not hiking, rowing or swimming, I’m usually cooking – and using my sharp knives very carefully!

I work as a health economist, which means I research, analyse and quantify how we can better allocate resources to improve treatment and care for people with certain diseases in Australia. A big part of my job is speaking with patients, clinicians and advocates (like ET Australia) to learn about the disease and the challenges people face. I now find myself on the other side of the table – having a common neurological movement disorder that has very poor awareness, little policy support and no cure.

I’m hoping to create change for other young people with ET by increasing awareness and research investment to build our understanding of ET and how it is best treated. In Australia, we have many options to improve care and treatment for diseases, but it needs to start with better awareness and policy/funding support.

Nadine

I live in the ‘Naturally Cool’ Macedon Ranges, about an hour from Melbourne.

Writing has been central to my work as a journalist and publicist so not recognising my own signature and making a mess of birthday cards has been a cruel blow since reaching my mid-fifties.

My shaky hands became a conversation topic at lunch after tennis around 2005. I used to joke as I precariously handed out teacups and plates of sandwiches, but it stopped being funny when the shakes didn’t go away, and the fear of having a serious disease steered me to my first neurology appointment.

It was a bit like winning the lottery with a lost ticket to have Parkinson’s Disease ruled out within minutes and shortly after being diagnosed with ET. I mostly ignored it because it didn’t really interfere with my day. Then with each passing year I struggled increasingly to do everyday things like cutting paper, doing up a button, and using a paintbrush.

Many of the glasses I have dropped in my lifetime are a consequence of ET, and this is easy to sleep with at night. Much harder to live with are the misunderstandings and assumptions that my shaky hands have prompted, particularly in workplaces, and this is an ongoing challenge that I hope to help others overcome.

Grace

I’ve been living with essential tremor since I was diagnosed at 13, after my parents first noticed a tremor while I was holding cutlery at brunch. At the time, I worried that ET might limit what I could do, but over the years I’ve learned that while ET is part of my life, and will always be a part of my life, it doesn’t define what I’m capable of.

With the support of my neurologist and effective medication, I’ve continued to pursue my goals and maintain an active lifestyle. I recently completed dual degrees in law and science at university, having lived and worked overseas in Japan whilst I studied. I now work in a fast-paced government policy and legal role, enjoying travel, recreational running, and dinner with friends on the weekends.

Living with ET from a young age — including learning to advocate for myself throughout school and university — has shaped my perspective and motivates me to help ensure that young people with tremor feel confident pursuing the things they enjoy.

I joined the Advisory Group because I’m passionate about improving awareness and support for people living with ET. For many of us, information and support have largely come from overseas organisations, so seeing Australian-focused resources being developed feels like an important and meaningful step forward. I’m looking forward to contributing to initiatives that increase awareness, and ultimately help improve outcomes for those living with essential tremor.

Christine

Support Group Leader — GV Essential Tremor Group

I was born with Essential Tremor, diagnosed at 17, now 66.

For the first 50 years, the tremor was severe in my non-dominant (left) hand and mild in dominant (right) hand, so I was able to work as a library technician. Upon reaching 50, the tremors in my right hand caught up with the left, making everything I did with my hands more difficult. Anxiety and stress is a trigger in making the tremors worse, as well as illness. These days I have tremors in my hands, arms, shoulders, legs and inside. I haven’t let Essential Tremor stop me doing things I love to do. Earlier in my life, I tried to hide it – the anxiety around it left me nervous and afraid to speak up. Now I spread awareness as much as I can, as confidence grows and anxiety lessens.

Since 2014 I have been a support group leader for International Essential Tremor Foundation, and give awareness talks for Probus Rotary and community groups and Medical practices.