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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 03-10-15, 11:23 PM   #1
Sarah1989
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Join Date: Oct 2015
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Default Just need to say this.

Hi everyone,
I'm new to this group. And right now im so glad I made the decision to post here.
My partner and I have been together for 5 years. Three years ago he told me his mum had been tested positive for HD. Which of course puts him at risk.
I remember when he told me, so clearly, and since then I have struggled so much to come to terms with the dreadful possibility.
Sometimes I just cry about it. Which is what I was doing when I decided to write this post. Because I feel like Im only going to get better at dealing with it if I talk about it. I do talk to my partner about it from time to time, but I hate to bring it up and feel so selfish if I try to tell him how frightened it makes me. After all, it isn't me at risk.
I also feel that as time goes on I'm struggling more and more with the possibility. I think perhaps it's because I turned 26 recently and it dawned on me that staying with my partner means commiting to this possibility. And everything that comes with it.
It's puts strain on our relationship too. Not on his end, but on mine. Sometimes I panic and subconsciously come up with reasons to leave him. Which I know is an awful thing to do, but thats what fear does sometimes.
Sometimes I forget about the possibility. Then I remember again and I'm frightened again.
I love him with all my heart and I don't want our lives to go this way.
Perhaps I'm being melodramatic, but I'm being completely honest.
I know there are others out there in our position and I would love to hear from you!
X
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Old 04-10-15, 08:44 AM   #2
shiraz
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Default Re: Just need to say this.

Hi Sarah
I lived with my husband displaying various symptoms and being incredibly paranoid and downright hurtful for several years and I often think a more confident woman would have kicked him out or just packed her bags herself and gone!! But maybe it was coz I love the bones of the man and knew there had to be something seriously wrong. So....its easier to cope with things now I know what I am up against and I look at it this way: Any of us could be struck down with a dehabilitating illness - if you love someone you'll stay and take care of them. In an ideal world....

But, we are all different, you are only young and no doubt wanting children, so you will have that worry aswell. Maybe the answer for you is to see if your husband will get tested and then the result you get might help you make your decision. We had many good years together and now my duty is to care for him as I hope he would me - but, I'm much older whereas you have your whole life ahead of you and know what hd is, whereas I was ignorant of it. It is not an easy life, not a normal married partnership, so your worries and tears are quite understandable. I should add that I still love him with all my heart - it is the hd I loathe. Whatever you decide - x.
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Old 04-10-15, 10:19 AM   #3
banda
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Default Re: Just need to say this.

Thinking of you...welcome to the mb ... there are lots of lovely people here to help and support. I too am older and I married hubby 25 years ago. We were both ignorant of hd until his father was diagnosed some years later. Hubby is hd+ .... would things have been different if we had known all those years ago...I don't really know but hope not. I am glad we have had those years together, so many good times with fun, laughter, family and friends. Now I am his main carer and it isn't all plain sailing but as Shiraz says I still love the man, it's the hd I hate. I take the view that this is the card we have been dealt...others lose their partners/spouses to other diseases/accidents etc I guess the difference for us is we know. Take care xx
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Old 04-10-15, 08:43 PM   #4
Melody
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Default Re: Just need to say this.

Hi Sarah and welcome.

I think Banda and Shiraz have summed it up from my perspective. But you are very young and you are right to question everything when it can affect the rest of your life.

Would I have married hubby if I knew HD was in the picture.............If I am honest I really don't know. The first we heard was after being married for years and had 3 children. His Mum was never diagnosed, it was an uncle.

You really need to have a heart to heart with your boyfriend, tell him all of your fears and listen to his as I am sure he has many. Living at risk isn't easy.

Obviously if he tested you would know what the future has in store for good or bad, but it's not for everyone and it must be his decision.

Wishing you all the best.

Take care. x
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Old 04-10-15, 10:53 PM   #5
Cupcake
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Default Re: Just need to say this.

Hi Sarah

Welcome to the message board. I can't add much to the other replies, but we are here for you to offload. I married my hubby 30 years ago, we did not know about HD, we have two sons not tested, but at risk similar age to your partner. They don't want to test at the moment, and may continue to bury their heads in the sand, they have seen the route of depression my hubby experienced once he was diagnosed. They are both adamant though if they have a family, they wil make sure the gene is not passed on, which some of the younger members on here can inform you about better than me.

Would I have stayed if I had known? Don't know, but I do know I loved my hubby with all my heart, to the end of the world and back, there were difficult times, but it was all worth it. It is scary, but so is life, my hubby died in the end of multiple myeloma, started to get poorly April, finally diagnosed in June and died Sept, none of us know what is around the corner, and I am a great believer when your number is up, your time is up.

Take care x
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Old 10-10-15, 01:05 AM   #6
Gabby
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Default Re: Just need to say this.

Quote:
Originally Posted by Sarah1989 View Post
Hi everyone,
I'm new to this group. And right now im so glad I made the decision to post here.
My partner and I have been together for 5 years. Three years ago he told me his mum had been tested positive for HD. Which of course puts him at risk.
I remember when he told me, so clearly, and since then I have struggled so much to come to terms with the dreadful possibility.
Sometimes I just cry about it. Which is what I was doing when I decided to write this post. Because I feel like Im only going to get better at dealing with it if I talk about it. I do talk to my partner about it from time to time, but I hate to bring it up and feel so selfish if I try to tell him how frightened it makes me. After all, it isn't me at risk.
I also feel that as time goes on I'm struggling more and more with the possibility. I think perhaps it's because I turned 26 recently and it dawned on me that staying with my partner means commiting to this possibility. And everything that comes with it.
It's puts strain on our relationship too. Not on his end, but on mine. Sometimes I panic and subconsciously come up with reasons to leave him. Which I know is an awful thing to do, but thats what fear does sometimes.
Sometimes I forget about the possibility. Then I remember again and I'm frightened again.
I love him with all my heart and I don't want our lives to go this way.
Perhaps I'm being melodramatic, but I'm being completely honest.
I know there are others out there in our position and I would love to hear from you!
X
I met my hubbie of 5 years 11 years ago 4 yesrs into our relationship his mum was diagnosed with HD he then took test which was positive i was heartbroken he was positive and still is most of the time i dread what is to come but couldn't live my life without him so we married 5 years ago he is now symptomatic early stages i dont think there is a choice when you live someone but that may change i dont know i will do my best to be there for him if i can but who knows i take each day anx make memories good luck excuse grammar and capitalisation on phone and fat fingers lol
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Old 10-10-15, 07:39 AM   #7
Tom B
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Join Date: Oct 2015
Location: Norfolk
Posts: 22
Default Re: Just need to say this.

How Sarah,

First off, let me assure you you are not being melodramatic. We knew my wife had been at risk for over a year and every day since has held its own drama. Thankfully she tested negative just over a week ago, so things worked out well for us in the end. Even so, life is still very emotional.

I'm assuming (I know we shouldn't assume anything) that your fears include the possibility of your future children being at risk? That in itself can cause you so much emotional turmoil. We have two great kids, my daughter is a year younger than you, and the thought of both her and her brother being at risk devastated my wife. We both agreed if we had known my wife was at risk before she was pregnant we would have thought very hard before having children.

From what I read in your post, I think you are handling this pretty well for someone in your position. Every day I tried to push the fear to the back of my mind, one day you can have a positive outlook, the next day youR world caves in around you. I think the feelings you are having at the moment are quite normal for a person in this situation. Obviously if your partner was tested the outcome of the test would help you make an informed decision on your future, but that is his choice, and his choice alone. I had no input on my wife's decision to be tested, albeit if she had decided not to, I would have discussed it with my children, as they both look forward to having a family in the future. As it turned out, I had to have that conversation with them anyway before my wife is tested. That was a tough one.

There's an old saying if you stood in a circle full with six other people and you placed your problems in the middle of the circle and you had the choice of choosing anyone of those problems, you most probably would choose your own. There's maybe someone in a better position than you, but there is definitely always someone always worse off! Knowing this helped my wife and I got through a terrible 14 months in our lives, during which we prepared ourselves for the worst, or at least I like to think we did, thankfully we'll never know.

Don't beat yourself up about this, it really is something that would knock the toughest person sideways. Obviously, you have to make the decision that is best for you when it comes see your relationship, the same way your partner has to make his decision about being tested.

I hope I don't sound like Yoda here, but I learnt from an early age that the most precious thing in life is time, you can borrow money, but you can't borrow time. So don't waste it beating yourself up! This is a big upset in your life, you have some tough decisions to make but you'll get there, believe me!

I wish you and your partner health and happiness, take care.

Tom
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Old 16-10-15, 08:16 AM   #8
toosh
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Join Date: Jun 2011
Location: North East
Posts: 570
Default Re: Just need to say this.

Quote:
Originally Posted by Sarah1989 View Post
Hi everyone,
I'm new to this group. And right now im so glad I made the decision to post here.
My partner and I have been together for 5 years. Three years ago he told me his mum had been tested positive for HD. Which of course puts him at risk.
I remember when he told me, so clearly, and since then I have struggled so much to come to terms with the dreadful possibility.
Sometimes I just cry about it. Which is what I was doing when I decided to write this post. Because I feel like Im only going to get better at dealing with it if I talk about it. I do talk to my partner about it from time to time, but I hate to bring it up and feel so selfish if try to tell him how frightened it makes me. After all, it isn't me at risk.
I also feel that as time goes on I'm struggling more and more with the possibility. I think perhaps it's because I turned 26 recently and it dawned on me that staying with my partner means commiting to this possibility. And everything that comes with it.
It's puts strain on our relationship too. Not on his end, but on mine. Sometimes I panic and subconsciously come up with reasons to leave him. Which I know is an awful thing to do, but thats what fear does sometimes.
Sometimes I forget about the possibility. Then I remember again and I'm frightened again.
I love him with all my heart and I don't want our lives to go this way.
Perhaps I'm being melodramatic, but I'm being completely honest.
I know there are others out there in our position and I would love to hear from you!
X
Hi Sarah

Welcome to the board. I had already married my husbsnd before ee found out his mother had HD and he was at risk.
We did not have children at this point so decided he should hsve a vasectomy ( no PGD or CVS) Actually no world wide web either so not much information on HD available.
We decided to live our lives to the absolute max. He didn't test positive until Feb 2014 he was symptomatic by then.
I think what I am trying to say is HD has played a positive roll in our lives,
Good Luck
Toosh
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