HD Australia

Hi everyone well im very new here , i actully found this website as im holding a charity ball for Hd(dedicated to my mum) in april and a lady from Hd Victoria told me about this site. its really really good.

Well what can i say, im 23 years old and live in melbourne. my grandma passed away a few years ago from hd, she got it alter in life.
my poor mum is 51 and is in the last stages of Hd and lives in a home(arthur preston). my auntie is 53 and has just been tested, has the gene but showing no symptoms just now.

i am the middle child of 2 other sisters and none of us have been tested yet. i really dont no what i should do when it comes to testing, i keep thinking i would rather live my life with that chance you no.i keep telling myself i wont get it.

anyway just thought i would introduce myself.




Jess

Hi Jess - welcome to the forum. I'm sorry about your mum and your grandmother.

I think it's a very personal choice whether to be tested or not, and to know the right time if you do choose to be tested. Some people can't live with the uncertainty of not knowing one way or the other, others would rather hope that they haven't got it - everyone is different.

That's wonderful that you are organising a charity ball for HD dedicated to your mum - she is very fortunate to have such a caring, loving and generous daughter.

It sounds like your mum is in the best place for people with HD and under the best HD doctor in Dr Churchyard.

We look forward to hearing more from you on the forum. If you have any questions, just ask, and we'll try to answer them. Or if you have information to share on HD or your family - we are all ready to listen and learn. If you've read our posts you probably know a little bit about our "forum family" members - we're all here to help and support one another as best we can.

Good luck with the ball - let us know how the organising is going.

Take care,
sonnie xx

Hi Jess,

So your Mum is in Arthur Preston - thats where my husband will likely end up as I think his name is on a list and if the Dr thinks he is ready to go in he can. It sounds a wonderful place from what I've heard, are you happy with the care there?

The ball is a lovely idea in honour of your Mum, where are you holding it?

As Sonnie says the decision of testing is the choice of the individual and how much you can handle at the time. When the time is right you will know, the not knowing is awful but finding out is not a pleasant thing to go through either. If you aren't planning marriage and children and want to live life as though you won't ever get this disease then go for it.

I am sure you will find a lot of useful information on the forum here, and make a lot of friends.

Buddybird

Hi Jess,

Welcome to the forum, you've found the right place.

I can't really answer your question, the decision if and when to get tested is very personal.

I've been tested myself but have not gone back to get the results, I found that 'whether to get tested or not' consumed my life at one stage and so I decided to start the testing process. Now the results are available and I have no desire to actually receive them. From reading other posts, some people decide to get tested and find the process extremely long and just can't wait to find out, it's just comes down to what you feel is right for you. Others like me went through the process of testing and then didn't actually get the result until much late.

A good friend told me that when it gets to a stage that your life is consumed daily by these thoughts it's a good time to think about starting the testing process.

Good luck with the ball, its sounds like a fantastic idea.
Mel

Hi Jess,

Welcome to the forum .

What a lovely idea, having a charity ball dedicated to your mum!

As the others have said, getting tested is a very personal choice, what's right for someone else might not be for you.  I have been through the testing process and found that I tested positive for the gene.  Honestly, while it seems like a bad result, I think for me it was the right thing to do, as the stress of not knowing was worse for my well-being than getting a positive result.

Good luck with whatever you decide to do.

Cheers,

Tania

Hey Jess lovely to meet you and welcome to the forum!
I put your flyer up in the fundraiser section, it looks fantastic! I wish i lived in Melbourne and could come!
I hope its a huge success i know how much work goes into fundraisers...so I hope all the planning is coming along smoothly  

Sorry to hear you mums so unwell, my mums in the late stages too...it can be pretty tough ...but doing positive things to help the HD community helps me cope...

I tested two years back now and im gene negative, my three brothers are gene positive....i did an article  for Marie Claire magazine, which you can read on the forum somewhere....its a tough decision to make, and a roller coaster ride...i remember thinking when my brothers were finding out "why on earth would you want to give up the chance you dont have it and find out!???"   but i came to a place where knowing was easier than the torture of not knowing. So everyone takes there own time with the decision, and it  sounds like your staying positive with your thoughts, which is awesome!

Great to meet you
Michelle x

Thanks for the flyer Michelle, I emailed this to Dr C's secretary to put up somewhere in the clinics as our next visit is on the 14th which is too late for me to take it in. She is only too happy to do this for you.

I hope this is ok with Jess. If they print it out and put it up on noticeboards at the other clinics they might get people from those areas going.

I tried emailing to Huntington's Vic and the email returned so I am not too sure what is happening there.


Buddybird

Hi Jess,
My name is Amy, Im 20 and young single mother and Carer of 3 wonderful children.
Ive recently found out i have HD, which i got from my mother.
I cant say i wasnt shocked when i found out,cause i was. I guess deep down i kind of knew in a way, You know when you know theres something wrong but cant put your finger on it.

I had days where i thought it wouldnt end, days when i though my world was falling down But i pulled through it. I have alot of support, a wonderful Boyfriend,who speaks only the truth. A grandmother who told me to get myself together, to put it bluntly & a Best friend who has been my body guard,she protects me from the real world i guess.

Ive pulled through, Ive never been stronger!
Looking at starting fundraiser of my own. Trying to find out how i go about it..
Im getting there.

To be completly honest with you, if it wasnt for my daughter i wouldnt of found out. In the state of mind i was, still am alittle bit a stubborn girl.
As of now though, Id rather know. Atleast know i know i can do as much as i can to help push for a cure!
I want to find a cure, so if that be the chance i pass it onto my daughter she will have a chance to live her life to the fullest,with the right medication,or the cure to help her and the next generation of HD.
As scarey as it is, I go about my day as i would of before. Only now im stronger because ive felt the pain.

I wouldnt change anything.





Amy
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