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 02-10-15, 12:40 PM   #21
Allan
Approved Member
 
Allan's Avatar
 
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,154
Default Re: First meeting with Guys last Friday - so confused :(

.
Hi everyone

Have a look at this [slide 10]: Juvenile Huntington’s Disease

This is the only reference I can find in the professional\medical\scientific literature:

JHD Symptoms Usually, one parent has HD

In childhood-onset HD, sometimes the child may develop symptoms before their affected parent.

So, it's almost like my son [CAG 56] and I [CAG 35]. He displays a whole range of JHD symptoms - but not seizures. Me, I'm just an angry old guy looking for social and domestic hd-solutions ...... with, hopefully, a laugh and some fun every day.

.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
Allan is offline   Reply With Quote
Old 02-10-15, 02:35 PM   #22
helen
HDA Moderator
 
Join Date: Mar 2007
Posts: 23
Default Re: First meeting with Guys last Friday - so confused :(

Dear Brenda,

I will send you a message.

Helen.
helen is offline   Reply With Quote
Old 03-10-15, 07:42 AM   #23
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 887
Default Re: First meeting with Guys last Friday - so confused :(

Oops Brenda......didn't mean to add to your friend's worries and spoil your weekend!! It was just that word "impossible" that struck me as odd/not quite right....but on the upside, your friend is relieved, and I hope she settles on a decision that is right for her regards testing .....
shiraz is offline   Reply With Quote
Old 06-10-15, 07:10 PM   #24
Gabby
Approved Member
 
Join Date: Jan 2015
Location: Berkshire
Posts: 371
Default Re: First meeting with Guys last Friday - so confused :(

Quote:
Originally Posted by Bell View Post
Hi everyone,

We had our first meeting at Guys on Friday to start discussions re: testing or not - my husband has HD in the family and is trying to decide if he gets tested or not. We'd like to start a family and time is running out for us!

The lady we saw was just lovely and we were there just under an hour but I am more confused than ever. It just suddenly seems so real and so scary. I feel as if we've opened a Pandora's box and now we can't close it again.

It was very emotional but so useful and has really made us both think and raised a lot of good questions for us both. It's also made us even closer and more of a team than ever!

I had to go to work afterwards (in hindsight I would have taken the day off) and my husband went and talked things over with his mum. I wished we could have spent the day together or maybe time to reflect ourselves was a good thing, I don't know.

It seems to have turned us upside down, we're both so confused. I'm not even sure why I'm posting here! I don't have any questions, I don't even think I'm looking for reassurance, just wanted to 'talk' to people who understood. No one knows about all this except the two of us and my mother in law - she's coming round for coffee on Thursday so I can talk to her too otherwise I think I'll go crazy.

I always thought I wanted my husband to be tested (I'm a big believer in knowledge is power), and he always wanted to remain ignorant but now we might have both changed out minds.

Anyway, I'm not sure I'm making much sense :) but thanks for reading this if you got so far. I'm so angry with this disease. Does that make sense??
x
knowledge is power is exactly what I thought too .. to know is to be prepared .. not sure anything can prepare you totally and as you can not "FIX" it ..it is hard to live with . My hubbie tested 7 years ago and we do not regret it . with HD in the family we felt we would always be living with the am I aren't I will I won't I and that was worse then the I am and when .. and of course the test could have been negative . My hubbie made the decision to test and i supported him, I never gave him my opinion I just said it was his choice . It was upsetting to get the positive result but we have had chance to organise, plan we don't save for a rainy day we make memories .
Others say I don't want to know i want to live my life without worrying about it and hopefully they do I can not answer that one .
good luck this is a horrible disease and yes it makes total sense to be angry !!

good luck and take care x
Gabby 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 07:25 PM.


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