Barbara was the youngest of nine. Her mother burnt the house down when she was about two and a half years old, which led to her being fostered out to Wollongong. Barb had other siblings, but she was the only one who was fostered out because she was a baby.

She had had no contact with her biological family, until one day when she was fifteen years old, her father and sister came to see her. Barb didn't want a bar of it and told them that she wanted to stay with her mum and dad. Her foster parents were in their late forties when they took her in, and had five children of their own. They were lovely people and treated her like their own daughter – they were beautiful to her.

Barb and I met at a dance in 1961. We were engaged two years later on her 21st birthday and married the following year. We moved down to Melbourne in 1972 with three children. We decided to come here because of work opportunities, but the first three weeks we were here we thought we had done the wrong thing. I worked a lot of shift work – up to seven day shifts. Barb fitted in pretty well with everyone, and although she had a lot of responsibility looking after the boys, she brought them up beautifully. They were all into sports basketball, touch football and cricket. She did a great job of it. In the school holidays, Barbara used to take the boys up to both her mother's place and my mother's in Woolongong on the bus. Family holidays were great; we used to get around a lot.

We had four boys – one was born in Victoria and the rest in Wollongong. Our first son, Grant, was born in 1965. We lost him on 30 June, 1999. One day, he asked us to pay a bill, and when we came back we found him on the back lawn. He'd left notes, but they didn't make much sense. Dr Chiu said he didn't have HD, but there were some signs. Our second son, Mark, has three beautiful girls and lives in Wagga. He likes to play a lot of football and was actually asked to go to the Hawthorn Football Club when he was fourteen. They're all pretty natural at their sport. Mark was the type of person who would draw other people to him. They were both like their parents – into their sport and the people around them.

HD is a terrible illness. You don't know how it's going to affect you. I did a lot of reading after we got word in 1979. We found out that Barb's biological mother and sister had it, and that her mother was put into a home with HD. Both have died now. Barb is 63 years old. She doesn't know anything about her other siblings.

We got told that we should see Dr Chiu back in 1979, and Barb and her friend went along to the appointment. When she came home, she told me that she had a 50/50 chance of getting HD. Twenty years later, after the loss of our first son, we went to see Dr Chiu again and he said that he had already told Barb in '79 that she had HD. I knew before that though and had read up on it a fair bit. Although there were no real visual signs, the first things that happened was that the beds didn't get made and the meals didn't get cooked. And that just wasn't Barb. She was always well organised. The kids didn't really notice the changes, as she didn't get the movements until later on. The organisational skills dropped off and she used to blame me for things. She's really an easygoing sort of person, so that was difficult to adjust to.

None of the other boys have been tested. They don't want to. Scott is talking about it now, but gets a bit of a shock every time he sees his mother because she gets worse every time. He's been a bit jumpy at work – they've put a lot of responsibly on him. He got a bit uptight about that, so he tried some counselling. They told him he should get tested, but he's still unsure.

In 1994, my workplace gave me the option of an early retirement, but they didn't want me to go, and instead wanted me to train a new graduate. I wanted to look after my wife though. It was hard looking after Barb when I was working, as things were getting more and more difficult at home. It's not like she wasn't able to do things, she just couldn't bring herself to do things. More and more things ended up on my lap. After I finally retired, I did a four-day course with the Brain Foundation. They had all sorts of people there doing the course; medical professionals, counsellors and doctors. It helped me understand things with Barbara a lot more. You don't get so anxious about it. When things would come up, I could understand it more and not take it so personally. That's not easy though. When someone starts to accuse you of things you're not doing, it's hard not to take it personally.

When Barb was pregnant with Grant, she used to carry a bucket around because of the morning sickness. I'll never forget the day he was born. It was a Saturday, and election time. I came home from work and she said, 'I'm ready to go to hospital, but you'd better go and vote first. ' She had the baby about nine pm that night. I can't remember who won the election. Barb loved gardening and we built a nice home at Frankston. When I first retired we bought a caravan with my long service leave money. We used to go up north in the winter months. The past three years we haven't been able to do that – it just got too much for her. People there were lovely to her. One fellow came out to us and told us he lives in Victor Harbour in SA, and to come and see him and his family any time. It was a nice thought. We probably couldn't manage it though.

Barbara was always a modest person, so now she's got to put up with me dressing her and undressing her. She has to take it all in her stride. The district nurses come in and they all think she's beautiful. Barbara's mobility isn't too good at the moment. She used to walk down to the shops, but can't do that any more. She's in a wheelchair now. Medication has stopped most of her movements, but it's contributed to her putting on a lot of weight. Her sense of balance has also gone and you need to pull her up when she's sitting. But other than that, she's as beautiful as she was back then. She's still got that nice way about her and she just loves the kids. We would like to visit the grandchildren more often, but now that she is the way she is, we just don't get up there as often. It's just too hard in someone else's house showering and dressing her, for example. She often asks about one of the grandkids, Chloe's her name, as her short-term memory isn't too good. Her long-term memory is better than mine, though. Her personality is still there – nice and strong. The girls down at the bread shop all remember her and still ask how Barb is. She sits in the car now, but people often come out and say hello to her.

I've got a lot of people to thank who have guided me in the right direction like the Frankston council, Jan from the Huntington's Disease Association and the Mt Eliza district nurses. Jan organised Barbara to have respite in our own home for three hours on a Thursday and Tuesday. District nurses come over to assist Barb with showering and dressing. They come nice and early for her, as she likes to be up and ready as soon as she gets up. She's been getting looked after pretty well.

And me, I try to cope as best I can. I go shopping, see a mate, or go down to the beach. I lost my mother just last year. She was 84 years old. She thought the world of Barbara. I talk to Jan on the phone for a bit sometimes. There's not one person that I could complain about. You've got to appreciate the time you have. I did a carer's course once, which became a bit emotional. We shared our stories with the other people, and that was a bit hard. My son Adam's girlfriend Mel, came around on my birthday once with a card. She said, 'Read it Mr O. ' It said, 'You've got a three-hour pass'. That was the nicest birthday present I could get. I went out for three hours while she looked after Barb. You see a lot of good things in people. Most people go out of their way to help you.

My final work is the easy part. Seeing her the way she is and knowing that she's not going to get any better is the hard part. The way I look at it, is if it were the other way around, she would be there for me. When you love someone, it's natural to look out for them. I worry about the boys, especially when they get a bit uptight and nervous. I was worried about Grant before he took his own life. He used to blame other people for things they weren't doing. It was a bit hard to take. I told him that he needed to get a bit of help. He got some help where he was working, but I don't think it was enough. A week or fortnight after that, he took his own life. It was four days before his 34th birthday. His birthday was a difficult day. Your family is the most important thing in your life and you appreciate it more and more as you go along. If I had to do it all again, I would do it all the same way.

All the boys are lovely to their mother and you can tell that she still loves the family so much. Barb likes to go for drives, and we go most mornings. She likes her milkshakes and a piece of fish for lunch. I try to take things a day at a time. I thought she was beautiful the first time I met her, and I still think she's beautiful now.