Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > Testing, or at risk

Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

Reply
 
Thread Tools Display Modes
Old 16-06-10, 06:04 PM   #1
Little_bo_peep
Approved Member
 
Join Date: Jun 2010
Posts: 20
Default Cross with the universe

Well, I've had my HD+ confirmation for 3 years and have pretty much got on with it.

I always told myself (as a coping mechanism) that I would be fine with my diagnosis as long as neither of my brothers have the gene. Turns out one does and one doesn;t. I am gutted for everyone. My HD- brother feels guilty cause we have the gene. My HD+ brother feels awful cause of his diagnosis.

I'm not convinced that as a sibling unit we can deal with this. Tried to get my brother to speak to a regional advisor but he's not interested. Argh!!!

None of us can talk to any one else in the family because they don't know we've had the test (mum still not tested).

Normally, I'm a glass half full person but at the moment my glass is half empty and there's a big flipping fly floating about on the top of me beer too!!!

Well, I just needed that out of my system. It's either rant, or cry!

Thank you. x
Little_bo_peep is offline   Reply With Quote
Old 17-06-10, 02:08 AM   #2
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Cross with the universe

Quote:
Originally Posted by Little_bo_peep View Post
Well, I've had my HD+ confirmation for 3 years and have pretty much got on with it.

I always told myself (as a coping mechanism) that I would be fine with my diagnosis as long as neither of my brothers have the gene. Turns out one does and one doesn;t. I am gutted for everyone. My HD- brother feels guilty cause we have the gene. My HD+ brother feels awful cause of his diagnosis.

I'm not convinced that as a sibling unit we can deal with this. Tried to get my brother to speak to a regional advisor but he's not interested. Argh!!!

None of us can talk to any one else in the family because they don't know we've had the test (mum still not tested).

Normally, I'm a glass half full person but at the moment my glass is half empty and there's a big flipping fly floating about on the top of me beer too!!!

Well, I just needed that out of my system. It's either rant, or cry!

Thank you. x
Hun,


Sending a huge HUG (((((HUGS))))

You are being the big sis role (let's face it ... rnen will often be children in relationship to sisters and I have three brothers - two olders but they need me lol)
You sound like a surviver though who will manage to beat the odds whilst trying to help your immediate family.

Trish now expects to take the flack from the male sector lol but you are doing the big sis/maternal thing and that's the way it is

That said....

They would want you to be supported too and I hope you can find time to focus on the support YOU need .
__________________
I tried.
Trish is offline   Reply With Quote
Old 17-06-10, 09:41 AM   #3
telibeli
Approved Member
 
Join Date: Jun 2009
Location: Lincs
Posts: 483
Default Re: Cross with the universe

It's an incredibly frustrating situation. Reflecting on my own situation, I was like I'd been hit by a rocket. The need to get everyone into my way of thinking was so powerfull. It's my sis who is HD+. Still don't know about our brother. We've only really known about HD for 20 months. Sis was diagnosed 8 months now. But we have known for a few years something was not right. My dad was awful. For ages he was insistant that a good night sleep would perform miracles. It was like banging my head against a brick wall. I hated speaking to him about it at times because he just appeared to have this ability to ignore the obvious. I used to feel so frustrated and angry with him I couldn't even look at him. Then sometimes her partner is an a***. I want to grab him by the scruff of the neck and make him TALK! Please! I wanted to do everything there and then. I could not have been told I was being too over bearing. But I was. I am still but I have really calmed down. I just went into panic mode. It's difficult understanding that people deal with it in their own way when their way is very different form your own.
They will come round. But as you know, it's so much information to take on. And there are not many pleasant things to distract you from the awful and inevitable reality. And men are so different. They don't wear there emotions on their sleeves. I do. They don't feel the need to talk endlessy about their feelings. I do.
With us things are now moving a slower pace. I am moving at a slower pace. I still get agitated but I feel so much more mellow. As frustrating as it is, allow them time. Allow yourself time too. And a note to myself, there are other things to talk about. When that happens, so much more gets said.
Hope you're seeing that glass half full really soon. And get the thing topped up.
__________________
Don't wait for the storm clouds to pass, learn to dance in the rain.
telibeli is offline   Reply With Quote
Old 17-06-10, 12:41 PM   #4
just1moreperson
Approved Member
 
Join Date: Sep 2007
Location: England
Posts: 3,390
Send a message via Yahoo to just1moreperson
Default Re: Cross with the universe

Quote:
Originally Posted by Little_bo_peep View Post
Well, I've had my HD+ confirmation for 3 years and have pretty much got on with it.

I always told myself (as a coping mechanism) that I would be fine with my diagnosis as long as neither of my brothers have the gene. Turns out one does and one doesn;t. I am gutted for everyone. My HD- brother feels guilty cause we have the gene. My HD+ brother feels awful cause of his diagnosis.

I'm not convinced that as a sibling unit we can deal with this. Tried to get my brother to speak to a regional advisor but he's not interested. Argh!!!

None of us can talk to any one else in the family because they don't know we've had the test (mum still not tested).

Normally, I'm a glass half full person but at the moment my glass is half empty and there's a big flipping fly floating about on the top of me beer too!!!

Well, I just needed that out of my system. It's either rant, or cry!

Thank you. x
That's a very awkward situation, are all your siblings now tested? What's happening with your mother, is she symptomatic but in denial? Or not symptomatic?

Tc, Matt.
just1moreperson is offline   Reply With Quote
Old 17-06-10, 09:52 PM   #5
Little_bo_peep
Approved Member
 
Join Date: Jun 2010
Posts: 20
Default Re: Cross with the universe

Quote:
Originally Posted by just1moreperson View Post
That's a very awkward situation, are all your siblings now tested? What's happening with your mother, is she symptomatic but in denial? Or not symptomatic?

Tc, Matt.
Yerp! Thats me and my 2 brothers done. My mother infuriates me endlessly. She says ridiculous things like "nan isn't as bad as she makes out" and just totally has any disregard for the situation. She is definately symptommatic and has been for a while. But at the same time, I don't want to excuse any behaviour that she makes a conscious choice to display when she is nasty etc.

It's very tricky sometimes and drives us all up the wall!!!

I want to make my brother see some sort of sense. When I got tested I was getting married (never made it up the aisle) and decided to get sterilised, which I had thought about for in excess of 5 years prior. He has known 48 hours that he is positive and is half way up the doctors to get the snip. I have suggested he talks to a regional care advisor to help everything get straight in his head....... Its just infuriating!!
Little_bo_peep is offline   Reply With Quote
Old 17-06-10, 11:07 PM   #6
just1moreperson
Approved Member
 
Join Date: Sep 2007
Location: England
Posts: 3,390
Send a message via Yahoo to just1moreperson
Default Re: Cross with the universe

It's a terrible position that only HD seems to be able to create within a family. Your brother is being rash perhaps, you're right, he should take some time and think about things. How old is your mother?

Tc, Matt.
just1moreperson is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 06:39 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA