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 02-12-13, 05:04 PM   #1
gokeen
Approved Member
 
Join Date: Apr 2013
Posts: 3
Default gokeen

Hi again, all happening so quickly, only just found out dad has HD. Brother and sister have just received positive results, mine is clear.... But not feeling good, almost guilty. Dad is deteriorating now rapidly before our eyes and I am feeling helpless and lost, not sure where or who to turn to, don't want to burden my amazing brother and sister as they are adjusting to their news. I just need to say out loud how I am feeling, I realise reading some of your messages how lucky I am, so sorry to moan. Hope someone is listening, take care all of you out there x
gokeen is offline   Reply With Quote
Old 03-12-13, 10:26 AM   #2
battersea
Approved Member
 
Join Date: Aug 2010
Location: Kent
Posts: 402
Default Re: gokeen

Welcome to the board, I am so glad that you are clear of HD your self but can imagine your feelings of guilt as both your brother and sister have the gene. You will find a lot of comfort here, even though it is quite quiet at the mo.
We found my husband had the HD gene over 3 years ago, it is a tremendous shock isn't it. Looking back he had been having symptoms for quite a while, we didn't know it was in the family.

Take care
S x
battersea is offline   Reply With Quote
Old 03-12-13, 12:11 PM   #3
angecornwall
Approved Member
 
Join Date: Sep 2009
Location: Cornwall
Posts: 276
Default Re: gokeen

Quote:
Originally Posted by gokeen View Post
Hi again, all happening so quickly, only just found out dad has HD. Brother and sister have just received positive results, mine is clear.... But not feeling good, almost guilty. Dad is deteriorating now rapidly before our eyes and I am feeling helpless and lost, not sure where or who to turn to, don't want to burden my amazing brother and sister as they are adjusting to their news. I just need to say out loud how I am feeling, I realise reading some of your messages how lucky I am, so sorry to moan. Hope someone is listening, take care all of you out there x
hi gokeen, sorry to hear your news and please just take one step at a time... each day at a time.... and get as much support as you can... have you been in touch with your RCA (Regional Care Adviser) who will be able to give you lots of support and point you in the right direction of starting to deal with all the complications.... my father died of HD just under two years ago, I'm at risk and so is my brother... we have grown up family and grandchildren and haven't tested (yet!!!).... we didn't know it was in the family until February 09 when Dad had his diagnosis.....xxx please take care xx
angecornwall is offline   Reply With Quote
Old 03-12-13, 04:02 PM   #4
gokeen
Approved Member
 
Join Date: Apr 2013
Posts: 3
Default Re: gokeen

Quote:
Originally Posted by angecornwall View Post
hi gokeen, sorry to hear your news and please just take one step at a time... each day at a time.... and get as much support as you can... have you been in touch with your RCA (Regional Care Adviser) who will be able to give you lots of support and point you in the right direction of starting to deal with all the complications.... my father died of HD just under two years ago, I'm at risk and so is my brother... we have grown up family and grandchildren and haven't tested (yet!!!).... we didn't know it was in the family until February 09 when Dad had his diagnosis.....xxx please take care xx
Thank you for your kind words, we had never heard of huntington's until dad was diagnosed, 2 years ago. Of course we all new something wasn't right but it was never picked up. My brother who is now 50 has had the symptoms for a long time and is much worse than our dad, he says it's like looking in the mirror! Trying to keep positive and look at all the good things we have, but the feeling of despair comes in waves and it's difficult to explain to anyone who is not affected. Will take you advise one day at a time, best wishes to you and your family take care xx
gokeen is offline   Reply With Quote
Old 03-12-13, 09:40 PM   #5
angecornwall
Approved Member
 
Join Date: Sep 2009
Location: Cornwall
Posts: 276
Default Re: gokeen

Quote:
Originally Posted by gokeen View Post
Thank you for your kind words, we had never heard of huntington's until dad was diagnosed, 2 years ago. Of course we all new something wasn't right but it was never picked up. My brother who is now 50 has had the symptoms for a long time and is much worse than our dad, he says it's like looking in the mirror! Trying to keep positive and look at all the good things we have, but the feeling of despair comes in waves and it's difficult to explain to anyone who is not affected. Will take you advise one day at a time, best wishes to you and your family take care xx
thanks as well gokeen.... at least we can come on here and vent off !!!! :)
angecornwall is offline   Reply With Quote
Old 24-07-14, 08:15 PM   #6
BB
Approved Member
 
Join Date: Jul 2014
Location: st neots
Posts: 104
Default Re: gokeen

hi gokeen welcome,
glad you had good results, but realise how you must all be feeling, with everything you are all going through, hopefully the much needed support can start here x
BB 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 08:37 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