It's a ghastly disease that destroys lives and shows no mercy. Carmen Hall talks to families affected by Huntington's disease.
Antony Leyden has dozed off with his eyes half open.
His hands are crossed over his chest as his Casio watch flicks to 1.30pm. The sun is shining outside but he has his face turned away from the warmth illuminating from the window.
His legs are stretched straight on a single bed that resembles a wooden Japanese futon.
Yellowing, scuffed wallpaper contrasts against blue carpet, striped curtains, and a pale grey duvet cover dotted with white triangular designs. There are no photographs on the walls or personal items.
Dressed in "Hospital Property" blue flannelette pyjamas, black and neon yellow woollen socks and a nappy that bulges about his waist, the 53-year-old stirs at the sound of his mother's voice.
He lifts his head from the pillow and smiles.
His mother, Morva, greets him in soft monotones and plonks herself down on the bed. She touches him affectionately and talks about days gone by and finishing in second place playing 500 at her card group that morning.
''You were such a little rascal when you were young,'' she recalls.
But Tony is not interested in reminiscing about old times. Instead, in a crisp, clear voice he calls for the nurse. ''Can I have some water please?''
He refuses his mother's offer of help and she believes he just likes pretty women catering to his needs. He was always a ''boobs man''.
''I've got it sussed eh,'' he says, his brown eyes twinkling.
Tony insists visits are kept to 10 minutes or less. He shakily gets to his feet, lurching slightly, limbs moving involuntarily as he hugs his mother.
''I love you, Morva,'' he tells her.
''I love you too, Tony.''
Tony has Huntington's disease and is in a secure room in Tauranga Hospital's acute mental health ward.
He has been in the ward for 240 days.
This is where he will most likely die.
MORVA Leyden never knew the impact Huntington's disease and other tragedies would have on her life when she met her husband, David, in the late 1950s.
She had travelled to Invercargill with a girlfriend who introduced them and they ''were an item from then on''.
The couple moved back to Morva's hometown of Te Awamutu where they married. Children Laurence, Christina and Antony were born in quick succession.
The warning signs came early but, Morva says, it was hard to put a finger on what was wrong.
Her husband could never hold down a job and found it hard to cope.
He tried his hand at shearing ''but got the sack ... I even shed handed for him, even though I had only ever done office jobs but there was this thing all the time. It's hard work being a shearer and he was a bit of an intellectual snob''.
A change in vocation and a $6000 loan from Morva's mother allowed them to run their own sheep ''but once again that came to nothing and we lost all the money''.
Two more children followed with Fiona, and Diana who had down syndrome.
Diana ''was an absolute angel'' but tragedy struck when she died age 7 after complications with measles.
''Everyone loved little Diana and it broke all our hearts.''
To support the family, Morva returned to fulltime work for a chartered accountant in the office where she used to work before her marriage.
But by then her marriage was starting to fall apart.
David had started terrorising the family. Morva was most often the target of his rages but he had also started turning on their children.
''David had always been abusive and controlling but he was getting more and more violent,'' she says.
Afraid her eldest son, Laurence was in for a big beating she gave him $300 to start a new life in Christchurch. But tragedy was to strike again when Laurence lost an unexpected battle with cancer and died in 1983, at age 22.
Once Morva remembers pulling David off Tony over a disagreement which erupted during a game of chess.
''I could see what was coming ... and they were up against each other with the fisticuffs''
The crunch came when David started ''knocking me about even though I had kicked him out", she said.
''One minute he was all apologetic and sympathetic and then he would get really aggressive.''
''He said to me he had this dream we were in a canoe. I was sitting at one end, he was at the other and it started to break in the middle. He said we have got to repair our canoe.''
Her response? ''No David. I'm building another one.''
The Leydens did not realise David had Huntington's disease until his uncle was diagnosed - ''and then it clicked''.
Morva says after they separated David ended up in Auckland and spent two years living under bridges with street kids beating him up. He was finally put into a rest home in Epsom where he died aged 69, in 2008.
But Huntington's was to haunt the Leyden family. The gene had passed on to two of their children, Christina and Tony.
CHRISTINA Leyden lived her life to the fullest - and in vehement denial about her 2009 Huntington's diagnosis.
But on August 4 last year, she died at Tauranga Hospital in its Mental Health Services for Older People after a 10-day admission.
It was a shock for Morva, who donated her daughter's brain to Huntington's research, but she was grateful to have been there with her daughter at the end.
''It was very peaceful. I held her hand. I told her I loved her.''
Younger daughter Fiona Leyden, who lives in Te Awamutu, says Huntington's ''eats away at the brain'' and ''is a really evil, cruel disease''.
It destroyed her brother and sister.
''I lost them many years ago. It was horrendous to see them deteriorate and become these shells of who they were.
''Christina has worked three jobs at once including one at a hospital, renovated houses and travelled the world. She had all of these grand adventures and was quite capable. But the last time I saw her before she died she was just like a 6-month-old baby lying in bed.'
'All she could say was I love you, I love you, I love you.''
Meanwhile, Tony was a boiler maker and welder who built his own Chevy car and was known as a social person with a wicked sense of humour.
It is also quite common, says Fiona, for siblings who don't have Huntington's to have survivor guilt.
''I do. I have a lot of survivor guilt because I had a cardiac arrest that should have killed me and I've friends that have died so there is that. I can't complain about my heart condition because at least I don't have Huntington's.''
Fiona realises eventually she will be Morva's last-surviving child - a concept she finds hard to put into words.
''It's so sad. No one should have to bury their children and, as a mother myself, I can't comprehend how Morva has coped the way she has. She is an incredibly strong woman."
SITTING at her coffee table in a bright purple jumper and white vest, Morva says
she has down days.
The Papamoa Village Park resident and house-proud caravan owner says, ''Yes I have days when I just tuck my tail in and slink inside here and read a book.''
The 79-year-old is on anti-depressants, ''which is very much against my philosophy because I thought I should be managing this myself''.
''I have always managed to do 'it' myself.''
''I have always been the strong one and I just get sick of being the strong one at times.''
She also believed in getting on with it.
''Life is life and we have to get on and do what we can do the best of our ability.
''If I didn't think that I'd go nuts.''
Morva moved to the seaside suburb from Christchurch in 2009 and has fond memories of when her parents owned three houses on Papamoa Beach Rd.
''In the 1960s and 1970s we'd take the children over for holidays. I so wish we still had at least one of those properties now.''
The shift was like a homecoming for the Leydens as Christina returned from Australia to join Tony and her mother and they came to terms with the disease that would kill them.
''I don't regret being here. I don't regret selling my beautiful unit in Christchurch because this is were I want to be.''
Back at the acute mental health ward, Morva thinks the visit with Tony has gone well.
''He's doped up to the eyeballs but at least he is calm,'' she says.
Tears are quickly brushed away with her hand as she talks about trauma and grief.
''It is really heartbreaking coming here and watching Tony deteriorate. Everyone is here for a purpose and I do believe my purpose is to see my children's souls through and that is my job.''
She worries about her son losing his battle with Huntington's and his looming death.
''I'd just like Tony's last days to have more quality of life ... to get out of here. He should not be in the mental health ward.''
The carer husband
JANE Osborne can't talk. She's in a wheelchair and has to be fed through a tube in her stomach. Her head jerks involuntarily and swivels left to right.
But Jane can laugh. And she can clap along at church and shout out her version of Amen.
The 61-year-old was diagnosed with Huntington's in 2005 and her husband, Cliff, has been her main carer since 2008.
They met and fell in love in England at an Institute of Technology where they were both studying for MBAs. Cliff married ''this gorgeous lady two years later''.
Jane, he says, is clever and intelligent with a BSc in Physiology from the University of St Andrews and she was a high-flying business executive in England who started out with the Ford Motor Company.
Today the couple are enjoying themselves at a cafe outing with the Tauranga Huntington's Support Group, which meets fortnightly for friendship and support.
Cliff has put a bib around Jane's neck and is preparing to thicken a coffee so he can give her a few spoonfuls.
He will also occasionally give her blue vein cheese to give her tastebuds a zing and says if it was not for the feeding tube Jane would already be dead because she cannot swallow.
Jane knew she had a 50/50 chance of inheriting the gene from her father but the couple just decided to "get on with it" and dealt with the disease positively.
''She has been a pleasure to look after and she has this wonderful sense of humour,'' Cliff says.
''Jane is still the same to me, not in the physical sense as she can't get up and go to the toilet by herself but she has still got her intellect.''
The health system had, in Cliff's view, been fantastic by providing 30 hours of support a week so he had some time to himself.
He was also entitled to 24 days respite care a year and he had started taking Jane to Cedar Manor so she could familiarise herself with the surroundings and staff.
''I want them to get to know Jane for the far-off future when she needs to go there.''
The couple have two children, Kate and Michael, and Cliff says Huntington's has pulled the family tighter together.
Jane and Cliff are also so relieved that the Huntington's genetic 50/50 cycle was broken when they made the decision to have their babies genetically tested as one-month embryos.
''They have a great empathy for their mother and are caring kids.''
The carer kids
DIANE Anderson struggles to sit still in her chair. She can't stop twitching.
Her speech is slurred but she has a cunning wit and likes to cut to the chase.
Her father had Huntington's disease and died at 65.
''He was a violent man and he broke my sister's nose when she was 15. Mum divorced him and I was the youngest out of five.''
Her son, Roy Duncan, has driven her to the Tauranga Huntington's Support Group and places a cup of coffee and brownie on the table.
He has picked his mother up from his sister, Melanie Rundell, who is her primary caregiver. Diane lives in a two-bedroom flat on her property and the siblings try to share responsibility with Roy taking her on weekend outings.
The rest-home situation did not work for 64-year-old Diane, says Roy, and there have been stints in the mental health unit.
''For most part people in rest homes can entertain and look after themselves. It's not a care unit really."
Diane did not like the mental health unit.
''I visited regularly,'' Roy says. ''There were people in there completely out of it and they have them all in the same place.''
His sister, Melanie, tells the Bay of Plenty Times Weekend over the phone, that seven years ago her mother could still drive and had a part-time job as a librarian at Merivale Primary School.
All she could do now ''is feed herself, go to the toilet and put herself to bed''.
Watching someone go more and more downhill was ''overwhelming and depressing''.
''It takes a big toll but I prefer to focus on the positive. It's a place where she gets to see her grandchildren every day at home. We just really try to include her in everyday activities where we can.''
Diane's measure of a good day and happiness was watching TV, getting something to eat and being warm.
Melanie does not like to think about what the future holds fort her mother.
''It makes your heart sink. I have got a 2-year-old and an almost 7-year-old and I'm studying social work. I've got my own busy life so I think you just focus on being busy and not the issues.''
What will be will be, Melanie says.
- Huntington's disease is an incurable, hereditary brain disorder
- Adult-onset Huntington disease usually appears in a person's 30s or 40s.
- Nerve cells become damaged, causing various parts of the brain to deteriorate.
- It affects movement, behaviour and cognition and the ability to walk, think, reason, talk and swallow.
- Each child born to a parent with Huntington disease has a 50 per cent chance of sharing the same fate.
- Eventually a person with Huntington's will require fulltime care.
- About one in every 10,000 people has Huntington's.
- But one in every 1,000 are touched by Huntington's whether at risk, as a caregiver, family member or friend.
Common causes of death:
- Pneumonia or other infections
- Injuries related to falls
- Complications related to the inability to swallow