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 > New Members

New Members Introduce yourself, and get to know how the HDA Message Board works

Reply
 
Thread Tools Display Modes
Old 03-08-12, 07:35 PM   #1
Bella
Approved Member
 
Join Date: Aug 2012
Location: South East
Posts: 30
Default Hi

Hello : )

A brief description of my situation follows...

Found out my Dad is HD positive back in February and unfortunatley he is having symptoms now. I'm not very close to him and never really lived with him except for weekend visits when I was younger. It was still hard to hear that he's ill. I haven't seen him in a while and now I may not see him again. Him being positive obviously puts me in the 50/50 camp - arghhh!

I have good days and bad days - some days I'm on top of it and remain optimistic about the promising research that's going on. Other days I find it hard to get anything done... but those are usually the days when I'm feeling upset about my Dad too, as well as my own risk. I don't know how long he has left or exactly how bad his symptoms are. I understand he started showing symptoms a few years ago, but they were mild. It's in the past year that they have become more severe.

I really feel for everyone having to go through this. I wasn't expecting to hear it and was completely shocked when I found out. I think I went into denial for a few weeks. My heart honestly goes out to all affected by HD. I hope one day there will be a treatment and maybe even a permanent cure.

Ok, that wasn't very brief, sorry!

Olympics swimming final about to start, better go....

Bella x
Bella is offline   Reply With Quote
Old 04-08-12, 09:36 AM   #2
Paula
Approved Member
 
Join Date: Aug 2012
Posts: 9
Default Re: Hi bella

Quote:
Originally Posted by Bella View Post
Hello : )
Hello bella,

My name is Paula (36) and I just want to say that my heart goes out to you.
I have just started getting involved with hd information and taking my head out of the sand!
I met my partner 3 years ago, we are getting married next year. When things were getting serious he said that his mum had hd and that he had a 50% chance of getting hd too. I passed it off and put it to the bak of my mind. I met his mum and thought things weren't too bad. Then over the next couple of years I noticed a rapid deterioration in her symptoms. She was tested when she was 40 and then quite quickly diagnosed as the symptoms appeared. Obviously I wasn't around at that time. She is now about to turn 60 and is in a care facility. She does not have a partner. My partner is convinced he has hd too. And I can certainly tick the boxes for most of the early symptoms, but also a lot of the symptoms could be due to other factors in his life. But then again that could just be me living in hope. He has two sisters who live abroad so really the care of his mum falls to us, but he is in a lot of denial I think, so recently I have grabbed it my the horns and decided to get stuck in with it. It's a scary disease isn't it? And it totally bewilders me about how bad it is. But I have to face it!!! We also have a 14 month old son together, so I have to think of him too.
Sorry for ranting on!
I have only just joined the forum but already I know it is going to help and I met the regional care advisor and she was great. And I am starting to get my head around that there is a lot of help and support out there!!!!

Take care

Paula
A brief description of my situation follows...

Found out my Dad is HD positive back in February and unfortunatley he is having symptoms now. I'm not very close to him and never really lived with him except for weekend visits when I was younger. It was still hard to hear that he's ill. I haven't seen him in a while and now I may not see him again. Him being positive obviously puts me in the 50/50 camp - arghhh!

I have good days and bad days - some days I'm on top of it and remain optimistic about the promising research that's going on. Other days I find it hard to get anything done... but those are usually the days when I'm feeling upset about my Dad too, as well as my own risk. I don't know how long he has left or exactly how bad his symptoms are. I understand he started showing symptoms a few years ago, but they were mild. It's in the past year that they have become more severe.

I really feel for everyone having to go through this. I wasn't expecting to hear it and was completely shocked when I found out. I think I went into denial for a few weeks. My heart honestly goes out to all affected by HD. I hope one day there will be a treatment and maybe even a permanent cure.

Ok, that wasn't very brief, sorry!

Olympics swimming final about to start, better go....

Bella x
I have put my reply at the top of yours, as you can tell I am still getting used to this!
Paula is offline   Reply With Quote
Old 04-08-12, 11:48 AM   #3
battersea
Approved Member
 
Join Date: Aug 2010
Location: Kent
Posts: 402
Default Re: Hi

Hi Bella
Welcome to the board, you will find lots of support here.
S x
battersea is offline   Reply With Quote
Old 04-08-12, 02:21 PM   #4
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,381
Default Re: Hi

Hi Bella,

Welcome to Messy Board.
__________________
I tried.
Trish is offline   Reply With Quote
Old 06-08-12, 02:33 PM   #5
Bella
Approved Member
 
Join Date: Aug 2012
Location: South East
Posts: 30
Default Re: Hi bella

Quote:
Originally Posted by Paula View Post
I have put my reply at the top of yours, as you can tell I am still getting used to this!
Hi Paula, thanks for replying.

HD definately is a 'head in the sand' kind of subject, so I'm sure you're not alone in that! It's also frustrating to hear people going on and getting stressed about trivial things, when you feel you're carrying a whole different kind of stress on your shoulders.

Sorry to hear it's so tough caring for your partner's mum. Then there's the worry your partner may have it too. IF he does, at least there may be a bit more light at the end of the tunnel. The research is amazing... I have a read about the progress from time to time to try and reassure myself. I don't have a lot of money at the mo, but when (when!) I have more I want to make a monthly donation to research. The bills can wait (no, I'm kidding!)

There is a lot of support out there and I think it's better to talk. It's all very well talking to people that aren't at risk, but I don't think they quite get it. I have basically been accussed of using my risk factor as a weapon... someone said that I get upset about it when it suits me! It usually hits me in waves and they said that to me during a 'wave'. I'll be ok and not too worried for a few days, but then I start thinking of worst outcome and get upset. Like on Saturday for example... Saturday wasn't a good day.

I hope you, your partner and your son are still finding happiness in everyday. This kind of thing can make you realise that everyday is special. Alongside the worry and pain, is a different kind of appreciation for life, perhaps? You've got to look for positives or you just get swamped.

Bella x
Bella is offline   Reply With Quote
Old 09-08-12, 11:35 AM   #6
Bella
Approved Member
 
Join Date: Aug 2012
Location: South East
Posts: 30
Default Re: Hi

Thanks, battersea, Trish and jacqueline for your replies too.

Told some other people about my situation yesterday. They were understanding but everyone is so full of opinions about what I (or one) should do. I don't want to go and get tested just because someone thinks I should. Personally, I don't feel not being tested equals not taking responsibility. There are pros and cons to both.... I'm not sure how well I'd deal with it if I came back positive. However, I am VERY reassured by current research and it really looks like there may be a breakthrough in the next decade or so. Let's hope so, eh? Sorry, just thought I'd mention that whilst here.

Thoughts are with you all : )
Bella 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 07:17 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