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This
is the 2nd extract from the book Huntington's and Me - A Guide for Young
People. The author Alison Gray is an experienced writer and researcher.
The author of 11 books, including Genes & Generations: Living with
Huntington's Disease. She has had a close involvement with the Huntington's
community for many years, having done research both in New Zealand and Australia.
The HD Association of Wellington, New Zealand has kindly consented to the
reproduction of the section 'Some Ways of Managing HD Behaviour", which
can be found in 'Tools to Help you Cope', Chapter 4. Also read 'An
ABC to Help you cope with HD' - Jerry & Nick
29 August
-02
Extract #2 : Some Ways
of Managing HD Behaviour
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Huntington's Disease and Me, A Guide for Young People
' ...a book for young people who live in a family where someone
has Huntington's Disease. It's also for young people who want to
know more about Huntington's Disease and how it may affect their
friends'
Author: Alison Gray
Published by: The Huntinton's Disease Association (Wellington) Inc.
August 2000
For enquiries about the book, please email:Dorothy Tortell dostor@attglobal.net
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Coping with your own feelings is one thing, coping with the daily
pressures of living in a family with HD is another. Because of the disease,
people with Huntington's disease often appear to be irrational, demanding
or selfish
Here are some suggestions for coping with temper tantrums inflexibility,
apathy, and frustration. It won't always be easy. If you lose it, forgive
yourself and try again and again.
- Stay clam
- Try a distraction or a diversion
- Ignore the outburst if you can't think of a positive response
- Take time out in another room or outside
- Try to avoid confrontation
- Walk away
If you can't understand what they're saying:
- Ask them to repeat what you don't understand
- Ask them to slow down
- Ask them to say the main word again
- Ask them to spell the word or write it down
- Ask them to show you what they want
- Use short sentences
- Be prepared to wait for a few minutes for a reply
- Ask questions so they can answer 'yes' or 'no'
- Make 'yes' and 'no' cards
- Don't pretend you understand when you don't
- Make a list or write things you want them to remember
- Remember it's the HD talking, not the person you love
Living with someone who has HD takes enormous patience and acceptance.
Staying connected is important. Making the most of the good days will
make it easier to manage the days when their behaviour tests you patience
to the limit. When you really don't feel you can cope, walk away. It's
easier said than done, but practice will help. Come back when you feel
better and try again. Or see if there's someone who can deal with the
situation with you or for you. Most of all, hang on in there and look
after yourself.
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The book is dedicated '....to all the young people from the Huntington's
Camps. Thank you for showing us that this book was needed'
The Chapters are:
1. Whats This Book About
2. Some Facts About HD
3. HD In Your Family
4. Tools to Help You Cope
5. Looking Ahead
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New Zealands experience:
National
Annual Camp for Young People From HD Families
The Huntington's Disease
Scene In New Zealand
To Dorothy Tortell
for taking time to facilitate the publication of these extracts
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