The Huntington's Scene In  New Zealand

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Graham Taylor

Create a Good Environment for Communicating

* Communicate in a quiet room ( preferably with the TV and radio turned off )

* Limit the number of visitors to two. Only one person should attempt to engage in conversation with the person.

* Face the person and sit close by.

* Encourage the person to communicate in whatever way possible: words, gestures, facial expression, pointing of the finger or gameplaying.

* Recognise, acknowledge and reinforce the person’s communication gains.

* Do not engage the person in conversation while he/she is doing something else.

Be Sensitive to Limitations

* Respecct the person’s privacy.

* Inform the person of the surroundings

* Be aware of fatigue.

* Encourage the person’s independence.

* Keep the person occupied but with minimal pressure.

Hints for You as a Speaker

* Talk slowly and distincly.

* Don’t shout or add too much inflection.

* Use appropriate language - short, simple sentences and familiar words.

* Give instructions one step at a time; await an acknowledgement on the part of the person before proceeding.

* Accompany the message with gestures, facial expressions, pointing, and visual aids ( where appropriate ).

* If message is not understood, repeat it once or communicate in a different way.

* Verify that your message is understood. Aphasics might pretend they understand when, in fact, they don’t.

* Even if you know the person’s comprehension is severely impaired, it is important to continue talking for the purposes of stimulation. Vocal tone is often understood, even if speech is not. "You’re looking nice today" spoken with "smiling eyes" and appropriate inflection, can mean a great deal.

Hints for You as a Listener

* Want to listen: Most problems can be overcome by having the right attitude.

* Act like a good listener: Be alert, lean forward, let your face radiate interest.

* Listen to understand:: Do not listen for the sake of listening; listen to gain a real understanding of what is being said.

* React: Be generous with your applause, with nods, smiles and comments.

* Stop talking: You can’t listen while you are talking. Communicate; do not take turns talking.

* Empathize with the other person: Try to put yourself in the place of the person to see what he/she is trying to get across.

* Ask questions: When you don’t understand, ask. But do not ask embarrassing questions.

* Concentrate on what the person is attempting to communicate: Focus your attention on what the person is trying to communicate to you and his/her feelings. Body language helps tremendously.

* Smile: When appropriate.

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Taken from ‘Gateway’ the newsletter of the Australian Huntington’s Disease Association (NSW)Inc. July 1998 issue.

Acknowledments: ‘Horizon’ No 89, Summer 1998,the Huntington Society of Canada.

Adapted with permission from the Orientation Handbook for Volunteers, St Josephs Auxiliary Hospital,Edmonton.

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