The
Huntington's Scene In New Zealand |
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| HD National Youth Camp Comments From the Campers |
Huntington’s Disease is a cow of a disease. It affects so many people in so many ways, physically and mentally. One of the hardest things for me to do is sit and watch how other people deal with it, when often I have gone through the same experience. That really hurts me and makes me want to cry-lots. I love having these camps without them I think we would have an even worse time dealing with the issues that the monsters throw at us. I have learnt so much from these camps that thank you sounds so tiny in comparison to what people like Dorothy and Ann-Marie have done for us. They helped me realise the truths and the rumours about HD and special ways to deal with all the horror that we see going on in our homes.
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LIFE WITH HUNTINGTON'S UnknownYou were given green grass, You were given a picture, You were given a life,
BUT.......But the grass was gone, And the picture destroyed, And the life had a horrible disease,
Huntington’s. A slow painful disease that tears you apart.
WHAT I REMEMBER...All I can remember about my mum who died of HD when I was 10 was that she was always sick. I don’t remember when she would be able to walk around and do normal things like my friend’s mums. I don’t think I ever knew what HD was before I came to the camp.The smell of tobacco always reminds me of my mum - it’s a pity she won’t be able to light her own, one day.
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H.U.N.T.I.N.G.T.O.N.S. Y.O.U.T.H. C.A.M.P. Jamie Boyle.
Horribe affliction Utterly devestating No known cure Time Consuming Internally Stressed No hope Generation aftergeneration There is always grief Outwardly immobile No way out Sickening Year after year Our time is now Unity Together we can win Help Can get it out in the open All together now Make new friends Planning for the future Salute to the heroes------------------------------------------------------------------------------------------
WHY Joanne Delcata, aged 14.
Why, Why does Huntington’s effect the people who are so kind, people who are so loving and generous and why does it happen at all.
I thought I knew and understood HD and took all the information I had been told in. But obviously I haven’t and I need to learn more about it so that I can have the strength to tell people about it, what it does to the brain and why the people who suffer do stuff so slow and can’t do two things at once.
My Dad has Huntington’s Disease and one day in the next ten years or so my dad will pass away.
Someday I want to be able to tell people and not have to cry, but when I’m depressed all I can really do is cry and sigh.
My Dad and everyone that suffers with HD don’t deserve this disease, they should have a chance to live like the rest of us people who don’t have HD.
Lately I have been thinking about HD a lot and it’s dragging me down.
I would like to say this to my dad, I love you dad, I always will, through worse and worse still I will help you get through, I just wanted you to know that you will always be in my heart and hopefully we will never part
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LIVE LIFE TO THE MAX!! Anonymous
No matter whatever happens to me,
whether I get Huntington’s or not
I’m going to live life to the max.
And when my Dad dies I’m not going to be depressed for the rest of my life,
because he’ll always be in my heart,
and I know that he lived his life to the max.
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OTHER COMMENTS "...But it got clearer at these camps - where you can talk to other people with the same problems as you do. It really helped me to come to camp and listen to others talk about the times when it has been hard.".............."...Anyone with Huntington’s may not be alive in sight after death but we will always remember them. I have learnt that no matter who you are or how you act you will always be you. Knowing that there are always people to talk to helps a lot. Huntington’s draws attention to the affected person and the closest person.
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THE CAMPS Damien Jackson Looking back on the memory of the camp we shared,
‘Neath the stars above
For a moment all the world was right
How could I have known
we’d ever say ‘goodbye’
and I’m glad I didn’t know the way it all would end nor the way it all would go.
My life has certainly been changed
I couldn’t miss the pain that I would have felt to have missed the Camp.
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From the Kids by Adam, Paul and Sara Morre
"Wee-eee!! This is neat fun going down the big rapids."
This is just one of the things we did. We did all sorts of other things. It was great thing for me going to the HD Camp. It gave me a big chance to express the way that I cope and how well I know Huntington’s Disease. It was also excellent to catch up with all of my great friends and meet as many people as I could. This was the best HD Camp I have been to. Expressing the way I feel about HD means that I can learn how to cope with HD by talking it out with the group and the other people that didn’t know much about it; we could tell them so that they could learn too................ADAM 10 years old.
From the 19-23rd of April me and 34 other campers experienced the best Huntington’s Camp for 5 years. With plenty of activities, free time, discussion on HD, friendly people, and good memories this camp is the one that will never be forgotten. The accommodation and the food were exceptional and you couldn’t ask for anytyhing better from the camp leaders. The environment was great and I hope that everyone from this years camp and more new people all come next year. Well, that’s about it for my summary of the camp. I’d just like to give a special thanks to the Wellington Huntington’s Association, Nelson MS Society, and everyone who made this camp possible................PAUL 12 years old.
This year HD Camp was the best yet. Everyone was more supportive and helpful. It helped me so much and without it I would have been lost. I have so many friends, old and new, and after this camp I have realised just how special they are. The camps have helped me to cope better, and they make me realise that I’m not alone and that there’s always someone to help. To all those who made it a reality, thankyou so much for the opportunity to go..............................................SARA 15 years old.
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UNDERSTANDING, PATIENCE & DEALING WITH PROBLEMS
By unknown (male)I’ve really never understood about Huntington’s Disease. But ever since I have come to the camps I have learnt so much. I live with it everyday. Sometimes I get so stressed out that I can’t cope. I tend to just bottle all my feelings up and take it out on someone else, which I realise is not the way to go about it. But it just happens. I lost a relationship over it, like this. I would get stressed out with having to live with someone with Huntingtons, I would bottle it all up. My girlfriend didn’t know this and the littlest thing would just snap me and I would just go mad and that is how I lost a one year relationship over a period of 3 months with this happening all the time. So I thought about it and I have decided that I am not going to bottle it up anymore.
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WHY HUNTINGTON’S IS THE WORSE PART OF MY LIFE Jenny Taylor
It stole away my mum from a young age
It made the roles change
I have to look at mum and try not to cry - I want to be brave for her
I have no female rolemodel in my life
I want the real caring, loving mum I use to have
I am terrified of losing the person I love the most in the world
It makes me feel that mum is slowly slipping out of reach
I know I can’t fix this - I can’t make a cure
I am scared of putting my partner through what my dad has been through
I hate having this death note over my head everytime I get depressed, shake or drop things
It scares me.
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