The Huntington's Scene In  New Zealand

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Graham Taylor

Articles taken from the June 2004 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand

Emotional Support for Carers (2 articles)

by Puja Brunner, Carer Support Officer


What’s in a relationship?

Relationships are the basis of our lives. The dictionary defines relationship as connection, association, affiliation, rapport, bond and liaison. It is a way of connecting or being with’ rather than ‘doing to’. When we feel connected to something or someone, that connection gives us a purpose for living. In this way, it can be said that relationships give meaning to life.

Meaning and relationship are aspects of connectedness. Through them, our individual lives are seen as part of a larger whole, which in turn gives our lives its individuality. Jon Kabat-Zinn, who has worked with many patients at the University of Massachusetts Medical Centre, says in his book Full Catastrophe Living, “To my mind, connectedness may be what is most fundamental about the relationship of mind to physical and emotional health” (p. 221). We can imagine a hermit living in isolation, feeling connected to everything in nature and all people on the planet and not being affected by human concerns or suffering. But studies have shown that even stressful or negative connections with people may be better for our health than isolation, unless we know how to be happy alone which few of us do.

Physical touch is one of humanity’s most basic ways of connecting. But physical touch is not the only way in which to communicate our feelings. We make contact with each other through all our senses - eyes, ears, nose, tongues, bodies and minds. ‘These are our doors to connecting to each other and to the world. They can hold extraordinary  meaning when the contact is made with awareness rather than out of habit”. When touching is habitual it quickly changes from connectedness to disconnectedness or feelings of frustration. No one likes to be treated or touched mechanically (p.222).

In my experience in supporting carers, one of the most challenging relationships and connections is that of the carer and the caree. Relationship and connection fundamentally happens through love, kindness and acceptance. To encourage healing in relationships it helps to cultivate an awareness of our thoughts, feelings, speech, likes and dislikes, motives and goals - not only other people’s but also our own - as they happen. This awareness provides major clues about how you might be able to behave differently to achieve your aim more effectively. One good way to increase awareness is to keep a log of stressful communications for a week. Note the difficulty you are having, the person you are having it with, how it came about, what you really wanted from the person or situation, what the other person wanted from you, an awareness of what was actually happening and what came out of it, as well as how you were feeling at the time it was happening

(pp. 375-376). Note these items in a workbook. Just keeping track of stressful communications and your own thoughts, feelings and behaviour while they are happening can help you in becoming more assertive through being in touch with what you are actually feeling.

If you want to talk about this further please call the Commonwealth Carer Resource Centre on 1800 242 636   to speak to a Carer Support Officer

Kabat-Zinn, J. Full Catastrophe Living - using the wisdom of your body and mind to face stress, pain and illness. Delta, New York, 1990

Acknowledgements:             “Carers News”, the newsletter of Carers NSW Inc July 2003.

“Gateway” March/April 20047

Australian Huntington’s Disease Association (NSW) Inc

More Emotional Support for Carers

By Puja Brunner, Carer Support Officer


Taking time out

I often ask myself what is it that either makes me at ease or stresses me out? I can name things that stress me out, such as ‘too many things to attend to’, ‘not enough time for myself and too much that is expected of me’. I am most at ease when I’m OK with things as they are at this moment. When I am at ease don’t want anything to be different from what it is - I am at ease with myself; there’s nothing else that I need at that time. What brings on these moments for you? Is it listening to music, looking at a flower, having a massage or is meditation? Or, maybe meditation means all of these.

In a way, being at ease means taking time out. Turning of the autopilot: our habitual way of thinking, feeling and acting. It also means that the way we are relating to an activity, experience and to thoughts contributes to our either being at ease or getting stressed out. When we are on autopilot we are not aware of what is happening. When we are aware, we have more choices.

Consider that if I were to insult you, you would most likely choose to be offended. If I were to pay you a compliment you would most likely choose to be pleased or flattered. You may not be aware of the choice but think about it, it is still a choice, I could offend you and I could insult you and you could choose to not be offended I could pay you a compliment and you could choose to not let that flatter you either. Most of us cruise on autopilot, our reactions triggered by people and circumstances leading to predictable outcomes of behaviour.

Have you ever tried to step back for a moment to witness the choices you are making as you make them? For instance. I’ve started asking myself “What are the consequences of this choice that I’m making?” There is only one choice out of an infinity of choices available that will make me feel at ease. This awareness can be liberating; I’m in charge now. To me this is taking time out. Time out from habitual thought, feeling and behaviour.

Taking time out is a kind of meditation. Meditation to me is taking time out in the mind. Meditation is a way of being with difficulty rather than wanting to remove it. It is a way of welcoming and allowing both ‘negative’ and ‘positive’ experiences without judging them. It is all about having a different relationship to the difficulties and the pleasures that arise in life. Life without day and night, pleasure and pain is not real. But how I see, perceive, experience and am with these opposites makes the difference. Through this kind of awareness, our relationship to what’s going on changes; we get less caught up; are more at ease with what is.

Taking time out while caring means getting in touch with your moment-to-moment awareness. In doing so, you are drawing on your own deep capacity for relaxation and calmness, even at times when there are problems that must be faced and resolved.


“Carers News”~ the newsletter of Carers NSW Inc June 2003.

“Gateway” March April 2004 Australian Huntington’s Disease Association (NSW) Inc