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 10-02-16, 10:40 AM   #1
Elsie
Approved Member
 
Join Date: Jan 2016
Posts: 9
Default Hello

Hi Everyone,

My partner has tested positive for the HD gene. He has no symptoms. Or maybe he does? He's very moody and becoming more and more distant and fickle. Perhaps it's me. Hard to tell. He's been quite critical lately. I'm not sure if it's just life or HD. He's known his status for a while.

What a shock HD is though. So scary for everyone to absorb. Such an unknown. Hope I can support him through this. If he wants me to.

Anyway, lovely to meet you all.

Elsie xx
Elsie is offline   Reply With Quote
Old 10-02-16, 04:56 PM   #2
Gabby
Approved Member
 
Join Date: Jan 2015
Location: Berkshire
Posts: 368
Default Re: Hello

Quote:
Originally Posted by Elsie View Post
Hi Everyone,

My partner has tested positive for the HD gene. He has no symptoms. Or maybe he does? He's very moody and becoming more and more distant and fickle. Perhaps it's me. Hard to tell. He's been quite critical lately. I'm not sure if it's just life or HD. He's known his status for a while.

What a shock HD is though. So scary for everyone to absorb. Such an unknown. Hope I can support him through this. If he wants me to.

Anyway, lovely to meet you all.

Elsie xx


Nice to meet you Elsie,
my husband tested positive 8 years ago and become symptomatic ( as defined by neurologist ) about 2 years ago Ie he had some flicky movements . From the time he was tested and also die to the loss of his mother form HD he suffered depression so mood swings and struggled with work he went on antidepressants almost straight away . He is a very private person and finds it hard to talk about feelings . We have talked and i have managed to work round the down times . Luckily we also have good times and have made lots of memories . We discussed things he would like to do before he got too ill to do them and have tried to do those . Im not saying its easy changes in medication , have kept things at bay and he is seeing a psychologist . Memory and apathy are the hardest issues but i don't put any pressure on though do encourage him . I have taken of the running of everything am his personal secretary , and chauffeur to all appointments like most carers .

Hope that helps in some small way
good luck
Gabby
Gabby is offline   Reply With Quote
Old 10-02-16, 06:46 PM   #3
Crystal
Approved Member
 
Join Date: Sep 2015
Posts: 235
Default Re: Hello

Quote:
Originally Posted by Elsie View Post
Hi Everyone,

My partner has tested positive for the HD gene. He has no symptoms. Or maybe he does? He's very moody and becoming more and more distant and fickle. Perhaps it's me. Hard to tell. He's been quite critical lately. I'm not sure if it's just life or HD. He's known his status for a while.

What a shock HD is though. So scary for everyone to absorb. Such an unknown. Hope I can support him through this. If he wants me to.

Anyway, lovely to meet you all.

Elsie xx
Welcome to the message board Elsie and sorry to read of your partner's positive test for HD. Hoping you will be able to share your thoughts and concerns and receive any information and support from others on here who understand.
Crystal is offline   Reply With Quote
Old 11-02-16, 12:43 PM   #4
Elsie
Approved Member
 
Join Date: Jan 2016
Posts: 9
Default Re: Hello

Thank you both for your reply, it means a lot.
To be honest, I think he's coming to terms with it. But he doesn't say much. He feels disconnected though. It must be so frightening. I can't imagine what he must be going through. But yes, making memories is very important - if I can get him to want to do things. He doesn't see the point really. Everything is getting to him and I just stand there and watch, not knowing what to do
Elsie is offline   Reply With Quote
Old 11-02-16, 01:58 PM   #5
Elsie
Approved Member
 
Join Date: Jan 2016
Posts: 9
Default Re: Hello

Thanks both.

I think I'm just waiting for stuff to happen. A bit like when you are waiting for test results, now we know, I'm linking everything to HD. Things happen from mid-30's right? It could be life, but he seems to be 'disconnected' sometimes and easily annoyed which isn't like him at all. I just don't know how to support. Trying not to mention HD really as I don't want to keep reminding him (as if I need to) but I am wondering if that's it.

Did you guys get counselling together at any point to help? I'm worried he'll decide to go it alone and then have to deal with stuff himself and go downhill. Trying to be here for him but feeling like I don't know what to do.

xx
Elsie is offline   Reply With Quote
Old 11-02-16, 08:10 PM   #6
Gabby
Approved Member
 
Join Date: Jan 2015
Location: Berkshire
Posts: 368
Default Re: Hello

Quote:
Originally Posted by Elsie View Post
Thanks both.

I think I'm just waiting for stuff to happen. A bit like when you are waiting for test results, now we know, I'm linking everything to HD. Things happen from mid-30's right? It could be life, but he seems to be 'disconnected' sometimes and easily annoyed which isn't like him at all. I just don't know how to support. Trying not to mention HD really as I don't want to keep reminding him (as if I need to) but I am wondering if that's it.

Did you guys get counselling together at any point to help? I'm worried he'll decide to go it alone and then have to deal with stuff himself and go downhill. Trying to be here for him but feeling like I don't know what to do.

xx
Hi Elise we Didn't have any counselling together other than prior to the test just had doctors appointments just being there .. keeping things calm trying to be normal. if he is open to discussion then fine but don't push it . we avoided all things HD for about 5 years prior to physical symptoms /diagnosis of being symptomatic. Is he on antidepressants ?

Gabby x
Gabby is offline   Reply With Quote
Old 12-02-16, 06:01 PM   #7
Elsie
Approved Member
 
Join Date: Jan 2016
Posts: 9
Default Re: Hello

Hi Gabby
No he's not. He says he doesn't feel depressed or thinks he needs them.
Blowing hot and cold is really hard but it looks like the norm in HD.
Elsie xx
Elsie is offline   Reply With Quote
Old 12-02-16, 11:01 PM   #8
Melody
Approved Member
 
Join Date: Jun 2014
Location: South East
Posts: 341
Default Re: Hello

Hi Elsie,

My hubby tested positive back in 2010, but with the benefit of hindsight, he was showing psychological signs for years before that. You ask if it starts in the 30's.... Not necessarily, family history can be an indicator, so can his CAG count. Were you told that? Sadly with all things HD there are no hard and fast rules, but there are indicators.

Hubby had follow up appoiontments with the genetics people and they were on hand re phone calls following diagnosis... Have you been referred elsewhere since the Test?

All I can say is, nothing will change overnight... Try to live as you did before and support him if and when he needs it. Don't overdo it though... My hubby hated that.

Wishing you all the best.

Take care. x
Melody is offline   Reply With Quote
Old 13-02-16, 12:47 PM   #9
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Hello

Hi Elsie

Love the name. My mum was called Elsie

Welcome to Messy Board. My hubby (Steve) had HD hence my involvement.
__________________
I tried.
Trish is offline   Reply With Quote
Old 13-02-16, 11:48 PM   #10
toosh
Approved Member
 
Join Date: Jun 2011
Location: North East
Posts: 570
Default Re: Hello

Quote:
Originally Posted by Elsie View Post
Hi Everyone,

My partner has tested positive for the HD gene. He has no symptoms. Or maybe he does? He's very moody and becoming more and more distant and fickle. Perhaps it's me. Hard to tell. He's been quite critical lately. I'm not sure if it's just life or HD. He's known his status for a while.

What a shock HD is though. So scary for everyone to absorb. Such an unknown. Hope I can support him through this. If he wants me to.

Anyway, lovely to meet you all.

Elsie xx
Hi Elsie

Welcome

My hubby has HD. Diagnosed Feb 2014, was showing some symptoms, slight movements, memory lods but the worst was struggling to sleep. He literally hardly slept for 1 year. I really don't know how he carried on at times. CAG repeat 42

Went downhill fairly rapidly after diagnosis, anxiety, depression, OCD. He is 59 now. Everything is affected but its the personality changes that I find the most difficult to deal with. He says he's not depressed but he is. Like your partner he is very " deep" won't talk about his feelings which really frustrates me.

Keep your chin up xx
toosh 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 10:15 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