I am now 54 years old, single and live with my sister Deborah, in Melbourne. I am in the fourth stage of Huntington's Disease.

I grew up in Sydney in a large family of five kids of which I was the eldest. My mum, Margaret, became symptomatic with HD in her early thirties. She was not diagnosed for a long time which meant the support and care she really needed was not forthcoming.

In the sixties and seventies, the five of us managed to grow up despite having a workaholic father and a mum who was very symptomatic; however, she went off to the office with Dad every day. It was Dad's way of keeping an eye on her.

Dad didn't believe in educating girls. As the eldest girl, I was told my future was not education but marriage and children. I put myself through Years 11 and 12 because Dad refused to 'waste' money on girls. After teaching education in Sydney, I moved to Canberra. My first teaching job was in Aboriginal education where I was posted with my partner to Minyerri, a two-teacher school in outback NT. We stayed two years and then went to another outback school and then moved to Darwin where I worked in a curriculum advisory unit as a Small Schools advisor.

I chose teaching, despite my father's objections, because it would give me an independent income. I hadn't thought through the long-term financial issues at that time, but after a couple of years of teaching, I took the opportunity to go from casual work to permanent full-time work which I knew would give me superannuation. As I moved through these different roles in the Department of Education, they always tried to persuade me to cash in my super and move from a Defined Benefit scheme to an Accumulated scheme, but I had a hunch that one day I would need the advantages that the DB scheme offered.

When I was about 20 and still working in Canberra, I was keen to find out what it was that Mum had. She had been in and out of psychiatric hospitals for many years, receiving shock treatment and spending hours strapped into her bed. I took her to a GP and pushed for a diagnosis. He insisted she was a manic depressive – which seemed to me to be no real explanation or diagnosis so I then went to the neurologist that Mum had seen in the hospital. They had done an ECG but he wouldn't tell me her diagnosis on the basis that it contravened the patient/doctor privilege, so I asked Mum for permission to get a copy and eventually it was forwarded to me in the mail. I took it to my local GP in Canberra and he read it and gave me a big hug. His wife had recently died of a neurological problem and he really sympathised.

I needed to find out our family history and one day I was going through Dad's old filing cabinet of papers and found a copy of my grandmother's autopsy and it stated 'Query HD'. My grandmother had spent the last 20 years of her life in a mental institution.

I needed to discuss this with my dad, Jack, but he believed this kind of information was not helpful and continued to try to hide it from me. When I think of this time I remember the debates I used to have with Dad about the role of nature versus nurture. I would argue, as a young school teacher of the sixties, nurture and Dad would argue nature and specifically genetics.

My job in Darwin required a lot of travelling in single engine aeroplanes visiting remote communities and their tiny schools. I enjoyed this enormously. Once we had moved to Darwin, I did my Masters degree through the University of New England. By this stage, Mum was living in a nursing home in Kempsey in NSW. This was close to one of my sisters, Vicky, who had taken on the role of carer for about twelve months before finally choosing this hospital.

I had chosen the particular Masters course because I could get a subsidy to visit my mother in this nursing home. It was at this time that a group in Adelaide was offering a genetic 'marker' test that might be able to tell me if I was carrying the gene, so I travelled annually to Adelaide to participate in this program. However, it wasn't definitive and it wasn't until the gene was discovered that I got the result, by which stage I was mildly symptomatic.

Through the final stages of uni and my early teaching roles, I had a partner who shared my passion for indigenous education but after thirteen years we separated. I hadn't had any kids because of the fear of HD, but on separating, he said that he felt cheated and had always wanted kids. After a few years being single again and back in Darwin I met my next partner, David. He had three kids who lived with their mother until the younger ones were in their early adolescence when they asked to move in with us. The eldest was independent by this stage so only two of the kids moved in. We had a lovely big house with four bedrooms which we had got to accommodate the kids on weekends and holidays. Now it was filled all the time.

I was working at the NT University in Indigenous Education which I enjoyed very much. I loved multicultural Darwin and enjoyed both the indigenous and non-indigenous people working in this area – teacher education and direct teaching.

I had now been working in education for nearly 20 years and the HD symptoms were beginning to show. I had picked up my PhD a couple of times but put it down as I found the discipline and intense academic skills required just too hard. So, as compensation, David and I had a holiday in Europe. I had travelled quite extensively as a young woman both around Australia and overseas and I wanted one last trip before the symptoms dictated this would not be possible. I was planning to go into retirement and started to consider moving from Darwin to kinder climates. HD was giving me a sense of being hot all the time and I needed to find a kinder place for living with HD. After a few years of consideration, we selected a beautiful home in Mullumbimby, NSW which had four bedrooms, a beautiful garden and a granny flat out the back that had a proper disabled bathroom. So we had plenty of room for the kids and a magical, huge garden. I organised home help which was increased over the next seven years that I lived there.

All the kids moved down into the area and visited frequently. I thought this would be the home I would die in and I settled into a routine of gardening, going to markets and reading.

The HD continued to progress and my attachment to my home, the kids and my new friends was of great comfort to me. However, it was all to change when my partner decided that living with someone unable to be intimate was no relationship at all. One of the medications I had been taking was Prozac which had left me with no libido. I had suggested he find someone to have sex with as I couldn't do it anymore. For a number of years we had had a reduced sex life and this had led to enormous strains in our relationship. He did take my advice; however, he also fell in love and this reduced his care for me as his relationship with his new love grew. Over the next six months, I was constantly asking him to leave but he resisted – he was worried about losing his access to my assets and my pension when I died. It took a couple of years for this to come to a climax and when he left to spend a week with his new love, I rang my sister to come and get me.

I had tried counselling and mediation and the constant stress over these two years saw me deteriorate quite rapidly. I suffered terribly during this time trying to end the relationship with him but unable to physically remove him. I visited the HD clinic to get assistance and we both sought counselling. They advised adjusting my medications and waiting a few months and that worked in terms of being able to sleep and no longer crying all the time. I had now stopped begging him to leave. His attitude had become less and less caring. He spent less and less time with me and had become cruel, argumentative and controlling. He'd leave for weeks at a time – with people dropping in to check on me. I couldn't handle this so then I rang my sister, Deborah.

So I left my beautiful home taking all my essentials, such as my scooter and my beautiful carer dog, Khali. Deborah lives in Melbourne where the climate is much better for me and the stresses of life are now eased. The biggest stress now is dealing with not being able to do stuff – walking and playing with my gorgeous little niece, Eleanor. My medications are now reduced and I am not tearful or stressed any more.

We built a nice big room and a disabled bathroom and I get home help and assistance with cleaning. I am still really enjoying movies and reading, walking my dog – I go out in the scooter with her every morning. I also bought a great Jallopy that has a motorised lift on the back for getting the scooter in. We go down to the park and the beach for morning outings.

We've had lots of visitors over the Christmas period – the kids and their partners, my ex's second wife and other relatives and friends. I had an important talk with the kids – taking them through why I had to leave their father and not wanting to have to sell my home and how I had received less and less care from him so it was time to move on.

Deb does lots of washing and cleaning and plays babysitter to me too much. When I look back on my life, the great pleasures have and continue to be the kids – being there for most of their lives and their continued love and support. I also treasure the memories of all of my travels both within Australia and overseas.

On one occasion Deb and my sister, Vicky, who now lives in the same nursing home our mum was in, and I went to Bali for a two-week holiday. Bali has always been very special to me and we had a great time.

The hardest thing in my life has been the separation; a disputed settlement and all that that involved including having to spend hours at the doctor's being assessed to prove my mental competency as even that was being challenged.

But life has been good and I am one of the lucky ones with family and friends continuing to be involved in my shrinking world. The constant progression of the disease is a challenge every day. Showering and any activity require enormous attention and energy but we get through, and even smile and have a drink or two.