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13 Dec 2017

Issue 101, June 2008

Having been involved with the struggle to have a dedicated HD unit in the greater Wellington area for about twenty years, and then the reality of Amaryllis house in 2004, was a dream come true for me! This article from The Dominion Post about Mark Baker now living and enjoying life in Amaryllis House, and his wife Anne now free of the day to day care of Mark was a truly wonderful story.

Amaryllis House is working and working well for twelve Huntington's families. Wow!

Graeme Bradley

Home is Where the Help Is

Imagine living in a house where all your flatmates are suffering from the same incurable condition. Rebecca Palmer finds there's a warm welcome at a Lower Hutt Home for people with Huntington's disease.

Big-screen TV to himself, personal ensuite, three cooked meals, plus morning and afternoon tea, a loving wife… Some might say Mark Baker has everything a man could want.

But Mark also has Huntington's disease, and shares his life with 12 other sufferers in various stages of the progressive neurological condition. Sitting in the lounge outside his homely bedroom are people who can no longer feed themselves.

He lives in Lower Hutt's Amaryllis House - the only dedicated home for Huntington's sufferers in New Zealand.

Moving in 18 months ago meant leaving the family home he shared with his wife, Anne, to live with people in more advanced stages of the disease.

By then, Mark, 51, was already intimate with Huntington's terrible progression - his mother and two brothers had died from it. "That's something you've got to put in the back of your mind and get on with life," he says.

He enjoys his new environment: I came here and in time I felt the friendliness of the residents. It's like being in a family.

"Here, you're safe. You feel secure."

Before he moved in, he had spent hours every day alone. "He was sitting at home on his own all day while I was at work." Anne says. "There was only so much I could do while I was at work, apart from worry every five minutes."

The disease had taken its toll on the couple over the years. Mark had suffered from mood swings and began withdrawing socially as he found it hard to participate in conversations.

Now Anne gets peace of mind from knowing he is cared for by people who know the disease inside out. "It's more than just a physical disease. It manifests itself in different ways, at different times for different people. The staff here understand it."

The house is open to family members 24-7, so Anne can go in as she pleases.

"It's a huge thing to hand someone over into care. But it gives me some normality in my life. We're just so lucky to have this place.

Mark adds: "There should be more."

Huntington's is caused by the genetically programmed degeneration of neurons in certain areas of the brain. It is an inherited disorder that, over time, destroys a person's mental and physical functioning. It causes uncontrolled movements, loss of intellectual ability, and emotional disturbance. The children of people who have it have a 50/50 chance of inheriting the gene that causes it.

Death is usually caused by complications such as choking, infections and pneumonia.

Mark learned his mother had the disease when he was 14. Two years later, she moved to Porirua Hospital for good. "I was confused, angry, and I missed by Mum."

When she died in 1988, the family donated her brain to the Neurological Foundation Human Brain Bank at Auckland University, which used brains for research.

His brothers also had Huntington's, dying within weeks of each other in 2006. Both were in their fifties. One lived at Amaryllis House, the other in a residential care facility for people with disabilities.

Both of their brains have been donated to the brain bank, too, and Mark and Anne recently completed the paperwork for his brain to be donated eventually.

Mark didn't find out he had Huntington's till he was 40, when he took the predictive test that reveals whether someone carries the gene.

"He just had a few health problems. Thinking there was something wrong but not knowing was causing a huge amount of anxiety," Anne says.

Their three daughters, in their late teens and early 20s, have not been tested. "They don't want to do that at this stage," she says.

"They are all doing well in their respective fields. They are just living their lives."

Mark's employers, International Game Technology, were supportive of his condition and made changes to enable him to keep working. He switched from being a driver to a technician for gaming machines. In 1999, he completed a polytechnic course, despite having some of the early symptoms of Huntington's

Eventually, his workmates started to notice that something wasn't quite right. He was getting clumsy, had an unsteady gait and occasionally had speech problems.

His condition was explained to his workmates at a meeting. "It was all out in the open." Anne says.

His hours were gradually reduced as his health deteriorated. Eventually, he had to give up the job.

Mark describes the changes in a poem he wrote:

It's like your memory is like a grandfather clock that has a cog missing.
It looks great on the outside, but it misses a minute one day and so on…..
Nobody notices at first but you do.
You find solutions to your problems, make adjustments to compensate.
You fool everyone, until the problem gets too big.
In your mind you have the answers for everything
But you can't get them out in time, or in order,
So they are wasted.

Amaryllis House opened in 2004 - the first of its kind in the country. It is run by NZCare, which won the contract from the Health Ministry. A recent review found it provides a high-quality service that gives residents as much control as possible over their own lives. It has extremely low staff turnover.

It is a source of pride among staff that no patients have been admitted to a psychiatric unit since it opened.

Staff and residents clearly have a close relationship. The house was designed with small lounges in each wing, but they have not been popular. "The residents like to be in the main lounge where everything is happening, where the staff are." Manager Margaret Simmons says.

Care manager Anne Edwards says Mark arrived with "huge anxieties" and initially needed anti-anxiety medication. "But as time has gone on, the medication has been reduced down to nothing." He has also given up smoking.

He will probably live there the rest of his life. "You don't have to leave here when you're very sick. It's a home for life.' Says Dorothy Tortell, a Huntington's disease social worker who pushed for Amaryllis House to be opened.

Several people have died since the unit opened. In each case their family members wanted them to die in the house and it was arranged.

"The residents do stay here whatever level they are at." Margaret says.

"There was talk originally of having different stages in different wings. We said no. Imaging saying to someone, 'You're sick, you're going into the next wing'."

Staff also feel the loss of residents deeply, she says. "We are all grieving in our way when we lose a resident."

Mark leads an active life at the house. "Most times there's something on, something organised," he says. For instance, he and other residents went to see the International Arts Festival play Lifeboat. The entire house shut down on Friday so residents and staff could go to a restaurant for lunch.

In between those special events, Mark plays tenpin bowling in the recreation room, goes for walks, watches sports games, sends his daughters text messages and goes swimming. He has even recorded CDs, helped by a music therapist, and enjoys singing golden oldies for "Amaryllis Idol"

"He's just such a positive person, he keeps himself going," Anne says.

The couple went out to lunch last week to celebrate their 30th wedding anniversary, and Mark goes home once a fortnight and on special occasions. "But he's always happy to come back here [to Amaryllis]," Anne says. "He sleeps better in his own bed."

She has seen dramatic improvements since he moved in. "When Mark first went in to Amaryllis he was partly dependent and now he is mostly independent - a huge achievement for someone with Huntington's disease.

"I would hate to see Mark if he had been stuck in an old peoples place."

He had the ongoing love and support from his family, she says. "The time we have now is quality time. Before, we had lots of time together but it was not quality.

"Obviously there's no place like home but this is pretty good."

Special-needs support house unique in national network

Amaryllis House is the only dedicated residential unit for people with Huntington's disease in the country and can accommodate up to 14 people.

It is one of about 1650 facilities funded by the Health Ministry that provide residential support for people with physical, intellectual and sensory disabilities.

Health and disability national services directorate business support manager David Chrisp says Amaryllis is "quite unique" because it is a facility created to meet specialised needs. But the ministry does fund other specialist services, including those for people with intellectual disabilities or autism who have high behavioural support needs.

He says Amaryllis House received positive feedback during a routine audit last year. The ministry has also received a copy of a recent review but has not yet analysed the findings.

The ministry is considering carrying out further work on residential services for people with disabilities, including those with neurological conditions such as Huntington's

Acknowledgement: The Dominion Post, Monday, 17 March 2008

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