At one point, I knew I just wasn't feeling like myself. My sister, who had talked to my doctor, spoke to me. That's how I was diagnosed.

The hardest thing for me when I was diagnosed was that I was left to my own devices to find out more about the disease. Then I got my gene test result which was scary. You had to wait six to eight weeks, and then I had the name of a disease that I hadn't heard of before. After I got my result, I came and saw a worker at AHDA. I got some books and fact sheets that confirmed all the symptoms and I could see myself – I thought, 'That's me!'

No one in my family had heard of it before. Mum could have carried the disease because she was very bad tempered – that was the only sign that perhaps she had the gene. She died of cancer aged 53. One of my sisters has had predictive testing and is gene negative, but my other sister doesn't want to have the test.

I hope that I'm the only one in my family who will have it and it won't touch my nieces and nephews. I feel blessed to be the only one in the family to have it. I'm fortunate that I don't have children. I don't have to worry about passing it onto them. Other people lose all their family. I'm lucky that I have my sister as support – she often takes me shopping or brings me cakes. It's painful to see your past slip away though – all your skills and abilities you had when working are gone, and people no longer treat you normally.

It's a rare disease because there are not many people with it. People are not able to describe how I feel or how other people feel if they don't know the disease. Also, because the disease is different for everyone, it's hard for others to understand it. It feels like once you have it, people who don't know about it, place you in the 'too hard' basket. You have to make people aware that the disease is alive and kicking.

One thing about the disease that's difficult is the loneliness. One day I walked up the street and these guys in there twenties watched me. Because I appeared a bit drunk in the way I walked, they thought I was an easy target. They called out things like, 'You spastic' then they bashed me up and stole my wallet. I couldn't do anything to defend myself; it was like my feet were glued to the ground. That still hurts in my heart. I didn't think to run away – it was too late. I was annoyed I couldn't look after myself. When I was younger, I used to play footy and knew how to look after myself. I found that frustrating. I did nothing to provoke them, but I was vulnerable and couldn't make decisions. I called my sister shortly after that and she took me to the police station.

HD has affected my confidence, but it has also helped me to become a stronger person. It's called 'living'. Some people take their lives – I don't want to do that. I felt like doing 'that' once. When I had a fight with my sister, I thought, 'I'll get you back', but then I talked myself into thinking, it's not gonna solve anything. That's the easy, cowardly way out.

Now I'm happy. I want to be remembered. I want my family to love me and be with me. We all have goals, but it's all about whether you can aim to live your life to the fullest. I think this disease has affected me differently. I'm not saying I'm the best person in the world, but I tell myself that I should put myself up a bit higher, take away the negative and do the best I can.