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

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Old 14-08-18, 08:46 PM   #1
butterflygirl2017
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Default Concerns for My Boyfriend and our future

Hello, im just posting in the hope of some much needed advice if im honest, my boyfriend has bsen dignosed with Huntingsons and im always there to support him, even though i know theres nothing i can do to change it and make it better for him or take it away :( im just really worried about him as he does talk to me about it and knows im always there whenever he needs me, as i always tell him and show him i am, im just really concerned about him as he has recently been dignosed with depression, and he is refusing to get any help about it and i think he would really benefit from councelling as he oviously has this going on and the depression aswell as other stuff like his dad not been well :(. He is the type that will hold it all in and im really worried about him as if he doesnt get help he isnt gonna feel any better :( just worse and i worry the depression will take over and he wont get to enjoy and do things while he can as it stops him from wanting to and is always there. What should i do as i dont want to look pushy but i do love him and care about him and worry about him.
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Old 15-08-18, 04:20 PM   #2
Gabby
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Default Re: Concerns for My Boyfriend and our future

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Originally Posted by butterflygirl2017 View Post
Hello, im just posting in the hope of some much needed advice if im honest, my boyfriend has bsen dignosed with Huntingsons and im always there to support him, even though i know theres nothing i can do to change it and make it better for him or take it away :( im just really worried about him as he does talk to me about it and knows im always there whenever he needs me, as i always tell him and show him i am, im just really concerned about him as he has recently been dignosed with depression, and he is refusing to get any help about it and i think he would really benefit from councelling as he oviously has this going on and the depression aswell as other stuff like his dad not been well :(. He is the type that will hold it all in and im really worried about him as if he doesnt get help he isnt gonna feel any better :( just worse and i worry the depression will take over and he wont get to enjoy and do things while he can as it stops him from wanting to and is always there. What should i do as i dont want to look pushy but i do love him and care about him and worry about him.



Hi Butterfygirl2017 so sorry I completely get where you are coming from , it is very difficult to get someone to talk or go to counselling if they don't want to though . Will he go to GP does he / will he take antidepressants ? is he in contact with someone in the same situation . My hubbie saw a psychologist for a short time he was "helping with her research " is what it was sold to him as rather than help for him .
others may have other suggestions .
hope you can get him to seek help.
take care

Gabbyx
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Old 15-08-18, 06:44 PM   #3
butterflygirl2017
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Default Re: Concerns for My Boyfriend and our future

Hi Gabby :), i just want him to get the help he needs as he has been the Gp and they have mentioned councelling and leaflets and stuff, but all he says to me is im as good as i can be atm i will keep it in mind which i know he only says to fob me of the idea :(, he doesnt take anything for it, which is another reason why i know he would benefit from councelling.
But i can see it taking over sometimes like he doesnt want to meet up and stuff and i just worry that it will destory the happy times together and make him not enjoy doing things and stuff he usually would and will take over whats of his life before the symptoms show :(. Should i offer to go councelling with him? I dont know what else to do i always let him know im there and stuff and talk to him but my bf doesnt really let stuff out much which worries me
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Old 15-08-18, 07:05 PM   #4
Gabby
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Default Re: Concerns for My Boyfriend and our future

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Originally Posted by butterflygirl2017 View Post
Hi Gabby :), i just want him to get the help he needs as he has been the Gp and they have mentioned councelling and leaflets and stuff, but all he says to me is im as good as i can be atm i will keep it in mind which i know he only says to fob me of the idea :(, he doesnt take anything for it, which is another reason why i know he would benefit from councelling.
But i can see it taking over sometimes like he doesnt want to meet up and stuff and i just worry that it will destory the happy times together and make him not enjoy doing things and stuff he usually would and will take over whats of his life before the symptoms show :(. Should i offer to go councelling with him? I dont know what else to do i always let him know im there and stuff and talk to him but my bf doesnt really let stuff out much which worries me
Anything is worth a try do you have support group near by sorry Im not sure of ages and Location .


Gabby x
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Old 15-08-18, 08:26 PM   #5
butterflygirl2017
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Default Re: Concerns for My Boyfriend and our future

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Anything is worth a try do you have support group near by sorry Im not sure of ages and Location .


Gabby x
He is part of his own private group on facebook, we are in north west and are both 22
:) x
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Old 16-08-18, 09:11 AM   #6
Gabby
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Default Re: Concerns for My Boyfriend and our future

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Originally Posted by butterflygirl2017 View Post
He is part of his own private group on facebook, we are in north west and are both 22
:) x
Have you looked up Hdyo the HD youth organisation they have. Lot of useful information and.amps for your age group
https://en.hdyo.org x
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Old 16-08-18, 11:53 AM   #7
Allan
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Default Re: Concerns for My Boyfriend and our future

.
Hi Butterflygirl

I’ve just read all of your posts and see that Trish and Gabby are the main responders to your concerns. I am really surprised that no one else has come to your aid. When we’re all in a bit of a state, communication with others (often people you don’t know, like here) is often the best way to sort a few things out.

As your boyfriend's involved in a private facebook group why not suggest that he joins the more open HD groups such as:

Huntington's Disease UK

Huntingtons Disease Support Group (no apostrophe)

Huntington’s Disease Support Group - mainly USA.

Also, as Gabby has indicated, the HD Youth Organization might be a really good place for both of you.

Best wishes …


Just for others reading this, these are Butterflygirl’s posts:

Concerns for My Boyfriend and our future posted on 14/08/2018 has had 128 views but only replies from 1 person.

Concerns for Someone i love posted on 04/06/2017 has had 746 views but only replies from 2 people.

My Best Friend..just been dignosed posted on 04/03/2017 has had 1,688 views but only replies from 1 person.

In total these 3 posts have had 2562 views but only replies from 3 people, that’s an 0.12 response rate. C’mon people - fingers and thumbs on keyboards and let’s have some heartfelt responses and practical advice.

Butterfly girl is hanging on in there and with a few warm, comforting words … confidence grows.

.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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Old 16-08-18, 08:24 PM   #8
butterflygirl2017
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Default Re: Concerns for My Boyfriend and our future

Quote:
Originally Posted by Gabby View Post
Have you looked up Hdyo the HD youth organisation they have. Lot of useful information and.amps for your age group
https://en.hdyo.org x
Thank you Gabby, ive had a look and that website is very helpful and helps me look into the different things in HD thank you so much :) x
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Old 16-08-18, 08:27 PM   #9
butterflygirl2017
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Join Date: Mar 2017
Posts: 11
Default Re: Concerns for My Boyfriend and our future

Quote:
Originally Posted by Allan View Post
.
Hi Butterflygirl

I’ve just read all of your posts and see that Trish and Gabby are the main responders to your concerns. I am really surprised that no one else has come to your aid. When we’re all in a bit of a state, communication with others (often people you don’t know, like here) is often the best way to sort a few things out.

As your boyfriend's involved in a private facebook group why not suggest that he joins the more open HD groups such as:

Huntington's Disease UK

Huntingtons Disease Support Group (no apostrophe)

Huntington’s Disease Support Group - mainly USA.

Also, as Gabby has indicated, the HD Youth Organization might be a really good place for both of you.

Best wishes …


Just for others reading this, these are Butterflygirl’s posts:

Concerns for My Boyfriend and our future posted on 14/08/2018 has had 128 views but only replies from 1 person.

Concerns for Someone i love posted on 04/06/2017 has had 746 views but only replies from 2 people.

My Best Friend..just been dignosed posted on 04/03/2017 has had 1,688 views but only replies from 1 person.

In total these 3 posts have had 2562 views but only replies from 3 people, that’s an 0.12 response rate. C’mon people - fingers and thumbs on keyboards and let’s have some heartfelt responses and practical advice.

Butterfly girl is hanging on in there and with a few warm, comforting words … confidence grows.

.
Thanks for them links Alan :) Your right and it does help to talk to people about it as i didnt know anything about it so i joined this message board in the hope of learning more and to help support my boyfriend through all of this and our relationship. Im just really worried it will push us away as he wont except help and thinks he knows best all the time. I try to be strong for him but it does affect me more than i ley on oviously i dont tell him that as i dont wanna seem selfish. I just worry about him all the time thanks for all ur help muvh appriciated :)
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Old 18-08-18, 10:03 PM   #10
Gabby
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Default Re: Concerns for My Boyfriend and our future

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Thank you Gabby, ive had a look and that website is very helpful and helps me look into the different things in HD thank you so much :) x
glad it helped x
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