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Hope Dignity Awareness
Huntington’s Victoria is the leading specialist service that supports individuals impacted by Huntington’s disease.

Chronicles of Kylie: Introduction

Hi there, my name is Kylie (or champagne Kylie to my friends).

For over twenty years, I was a high school English and History teacher in both Melbourne and Sydney. I am passionate about education and teaching and had the opportunity to work with thousands of amazing students. I’ve also been lucky enough to travel to wonderful places all around the world including Italy, Greece, Morocco and I even managed to live in Japan for 12 months.

I didn’t realise at the time, but my childhood was quite complicated. I have early memories of trying to talk to my Pop while he was sitting on the front porch but he was unable to communicate with me. It was almost as if his tongue was tied. I would later find out that this was because of a disease called Huntington’s disease.

My father and I never once had a conversation about Huntington’s disease. Understandably, like a lot of the Huntington’s Community, he was in denial about what he was experiencing. He had the ability of walking slowly taken away from him, first needing the use of a wheelchair before becoming totally confined to a bed. During this time he was no longer able to speak or communicate with others in a meaningful way. His hands could no longer form a clenched fist to grip a spoon, or a knife or fork or lift a drink to his mouth. He needed assistance from others to help him eat thickened foods and drinks with a spoon, three times a day. He could not use a phone, or send an email, or update his Facebook. He could not change the TV or radio station when he wanted to.

Unfortunately I also lost the genetic lottery and inherited the disease. The disease that took my father is the reality that I will face one day.  

Two years ago, I was medically retired, after being diagnosed as symptomatic. There is currently no cure for this killer disease. It slowly kills both your body and your spirit. This was absolutely devastating news to me. It has stopped me from doing the thing that I loved most.  This has been a massive blow for me. I lost my sense of purpose and my identity.

Fortunately for me I posses a good sense of humour that helps me to deal with things and a have a positive outlook on life. But, it is all of the little things that frustrate me the most. Being unable to drive as much, not being able to walk downstairs with things in my hands because there’s a chance I will fall. I have to hold onto the banister when I go downstairs. I also have to use a keep cup when I have a hot drink to stop from spilling or burning myself.

I use a wide range of Alternative therapies that could help to keep me in good health for as long as possible. I also walk my dogs and their waggy tails bring me joy. I spend time with friends and family. Exercise such as Zumba put my involuntary movements to good use and that is why I have been chosen as the ambassador of the upcoming Dance Fitness for Huntington’s awareness event.

I now exhibit involuntary movements when I walk and sit. Sometimes my eyes twitch a little bit or like I have a facial tick… I have been refused entry to bars and asked to leave because they assume that I am intoxicated, when I am not. They don’t ask me they just assume. I have had to ask to see the manager to explain myself.

To all of you out there, I ask you to speak on my behalf. Please help me in my quest to raise understanding and awareness about this debilitating disease. Help to create a society that is inclusive, not exclusive and a society that displays compassion and empathy for others like me.

Not only will I be taking part in Dance Fitness for Huntington’s, but I will be writing a series of blogs for Huntington’s Victoria called the Chronicles of Kylie in which I will be sharing my experience with HD and providing advice for those impacted by HD. Keep an eye out on the Huntington’s Victoria website and Facebook for my next blog post!


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