Speaking Out ~ Living With HD

HD & Me: A Guide For Young People
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"HD and Me: A Guide For Young People"
written by Alison Gray

This book provides the latest information about HD and offers strategies for coping with immediate and long-term challenges. It is soundly based on the experiences of young people themselves. Some have just learned that HD is in their family, others are considering predictive testing. Some have already experienced the sad loss of a parent.

How To Order

HD & Me books can be directly ordered from New Zealand International HD Association or you can send an email request to Elaine Bradely gebrad@xtra.co.nz. New Zealand Website: http://www.huntington-assoc.com/books.html

Description of this book:

The following are excerpts from the book "HD and Me: A Guide For Young People" written by Alison Gray that was published August 2000 by the HD Association (Wellington), Inc. (see below). 

As the book says, the "quotes from young people appear throughout this book and speak far louder than any text."    Below are just two of the many quotes from the young people in this book.  
 
HD And Me

HD to me means a lot of things.
 
It means pain and suffering for something that a "normal" 17 year-old shouldn't even have to know about.  I hurt  because I watch my father whom I love and care about, suffer from an illness that he didn't ask for.

HD is terrifying.  It scares me because I don't want to be 'different".   I am an independent person and the last thing I want is people looking after me.   I also see it as terrifyingbecause it's the thing I hate and fear the most in my life.  It is the thing that I have to confront every day and that scares me.

On the other hand, HD means strength and hope.  Because of this thing I have to face and cope with, because of the pain and suffering, I am a stronger, more courageous person.  I have that to be thankful for.

I find hope inside my strength because it makes me see the positive side of this condition.  I also find hope in the new technology as it shows me that if I do find myself  with HD it might not be as bad as it seems today.

Sara

What We Don't Like About HD

~ From Young People In HD Families:

  • Thinking why us, why not someone else?
  • Worrying about what other people think.
  • Watching loved ones deteriorate.
  • Feeling you may be next.
  • Not knowing how long you have got to live.
  • Thinking you haven't done a good job.
  • Having to explain it to somebody else.
  • Thinking no one understands.
  • Having to carry on when somebody stares.
  • Not knowing what's going on.
  • Having secrets from family members and friends.
  • Why does she say so many horrible hurtful things?
 
Other Excerpts From This Book:
 
Now we talk about some ways to take care of yourself, to help you cope with your own feelings, with your parent or other people in your family who have HD, with your friends and the rest of the outside world.
 
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.
HUNTINGTON'S AND ME -A GUIDE FOR YOUNG PEOPLE
by Alison Gray with drawings by Bronnie Webb published by the Huntington's Disease Association (Wellington) Inc.
 
"Huntington's Disease is a family disease. When someone in the family has it, everyone becomes involved - parents, grandparents, aunties and uncles, sons and daughters. Everybody's lives change. Young people have to come to terms with the fact that their mother or father or grandparent is not like most other people. They have a condition that is incurable, gets progress-ively worse and can be passed on through the generations.
 
Young people affected by Huntington's need to have correct and up to date information as early as possible - they want to know the truth and this must be provided in such way that it is informative and factual, as well as supportive. With predictive testing available to those eighteen and over, the young must have this information early so they have time to consider the implications of testing, not only on themselves, but also on their family and friends.

This book provides the latest information about HD and offers strategies for coping with immediate and long-term challenges. It is soundly based on the experiences of young people themselves. Some have just learned that HD is in their family, others are considering predictive testing. Some have already experienced the sad loss of a parent.

The book shows that the experience of coping with HD is not all negative. Young people in HD families gain strength and courage. They learn to face the present and the future with love, acceptance, compassion and hope. This book is an essential guide for that journey - for both young people and adults.

The book  has 58 pages.  If you prefer you can order this book directly from New Zealand [click here->]  International HD Association (IAH) or you can send an email request to: E.Bradley~c/o Wellington HD Association
Book Index

What This Book Is About

Some Facts About HD
    Why is it called HD
    How Do people get HD
    What does HD do
    What the scientist are doing-the hope  
    page!

HD In Your Family
    Why is HD so scary

Tools To Help You Cope
    An ABC to help you cope with HD
    Some Ways of managing HD behavior

Looking Ahead
    What about predictive testing?
    An ending - but not the end
    Where to go for help (lists HD associations
    all over)

The book has quotes, poems and stories from those whose ages range from 8 to 22 .  This is a book for young people who live in a family where someone has Huntington's disease.  It  is also for young people who want to know more about the disease and how it may affect their friend(s).