Huntington's Scene In New Zealand
|Articles taken from the March 2001 Huntington's News. The Quarterly Newsletter of the Huntington's Disease Associations of New Zealand|
THE WAY FORWARD
We are all walking on a road - the road forward to our future and the road behind us, our past. Our past has an impact on what our future holds for us, and what we will do in the future.
The participants were asked to map out the way forward on our road we called the Positive Road.
They did this by answering three questions:
What does HD mean to me?
Love, frustration, broken hearts.
It fills my everyday - my thoughts and causes great anguish. I hate it.
Hurt, suffering, choices, watching loved ones deteriorate.
Families full of unnecessary pain.
Movements, unsteadiness, unable to make decisions, not able to do more than one thing at a time.
Always feel loved.
Loneliness, confusion, great friends, strength.
Strong people, broken hearts, bravery.
Life, family, love, taking risks, sticking together, Camp.
Sadness, stress, anger, results, the end.
An impossible challenge.
Difficulties for everyone involved.
HD is a barrier I need to pass for my future goals to be defined.
Whether I have the HD gene or not.
What are your dreams? What are your goals?
To be happy, to do whatever I can.
To live a normal life with or without HD.
I would like to grow up and get married, become a pilot and have children.
Become a lawyer, get a degree in performing arts, not get HD.
My dreams are to be a musician, movie director/actor, chef, builder and my goals are to defeat HD and to reach my dreams.
To be successful in whatever career I choose and to be in a steady relationship.
For my brother not to have HD.
Travel, be happy.
To live my life happily ever after.
Complete a nappy course, set up a place of my own and give up smoking.
Archaeology, painting, family (one day), experience the world, Europe, support my family .
Big white wedding, children, travel, successful well paid job, no HD in me.
To get a negative result, to find an understanding, supportive partner, to hear of a cure for HD, to have children free of the burden that we have had to carry.
To be the best husband and father I can and create a home at which family and friends feel welcome.
To find a cure.
How will you take HD into account in moving towards your
If I get HD, do all I can and have as much fun as I can.
Won't bring myself down worrying about HD, work hard, have fun, live life to the fullest.
To carry on with or without HD.
Rising above the challenge and then looking forward to the future.
I won't take HD into account, I'll just achieve my goals whether I have or not have HD, except in the case of having a family.
If I have HD, I have HD. If I don't, I don't. I just have to work
hard to achieve what is possible for me.
HD will only make me stronger.
To play my cards whatever I have been dealt to the best of my ability. Accept what I am handed and relish it!
I'm going at full speed and I'm not going to let HD hold me back. Although it is there every day,worrying about family members.
Be accepting, dedicated, as strong as possible, positive and keep myself informed.
Never give up, be the best I can.
To be as different as I want and don't care what anybody has to say that is negative.
Due to being adopted I will take HD into account - I will try to be there for my mum for support and to help my dad and make him feel loved and as comfortable as much as I possibly can.
by Joanne Delicata
Life need not be complicated,
Life need not be grim,
We can live it wracked with worry,
Or we can live it on a whim;
Life need not be simple
As we ourselves may care to take it,
If we accept the hand we're dealt,
Then there is no need to fake it;
We can choose to live it happy,
We can choose to live it sad,
We can choose to see the good things,
Or we can dwell upon the bad;
So make lemonade with lemons,
And see the sun at every turn,
Imagine rainbows in your pockets,
And you'll have grins and smiles to burn!!!
More THOUGHTS FROM THE CAMP
Some folks dream of the wonders they'll do
Before their time on this planet is through
And some just don't have anything planned
They hide their hopes and their heads in the sand
Now I don't say who is wrong, who is right
But if by chance you are here for the night
Then all I need is an hour or two to tell the tale of a dreamer like you
We all dream a lot, some are lucky, some are not
If you think it, want it, dream it
Then it's real, you are what you feel
But all that I say can be told another way in a story of a boy whose dreams came true and it could be you.
I get up everyday and have to smile
When all I wanna do is cry
I have to have a big brave face
When all I want to do is frown
I don't wanna cope no more
I just don't wanna know
Life was good but went real bad
People walk so easily in out of my life
They turn their backs in a second
Without a doubt in their mind
Well f.... those bloody people
I don't really care those out there that LOVE ME always show they care.
I'm happy to be here with people who care
I can't believe how much we share
Our knowledge and feelings are so much the same
But I wish that I could find some BASTARD to blame.
I'm happy to be here with people who care
ON CLIMBING UP MOUNT TONGARIRO
Today had to be one of the most exhausting days I have ever had.
Although it was exhausting, it was also exhilarating at the same time and it was worth every ounce of energy.
Not a lot of people can say they walked to the top of Tongariro.
We all stuck together and gave each other heaps of encouragement.
I think that is extremely special and hard to come by.
WELL DONE EVERYBODY
Love from Rowan
Reaching the top
Rowan and Sarah R