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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 28-09-15, 03:13 PM   #1
Bell
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Join Date: Jun 2015
Posts: 19
Default First meeting with Guys last Friday - so confused :(

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
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Old 28-09-15, 05:14 PM   #2
Crystal
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Join Date: Sep 2015
Posts: 233
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

Hi Bell
Yes - being angry makes sense
Yes - being confused makes sense
Yes - being emotional makes sense - in fact all of your post makes perfect sense, to those of us of have been there! You are right, knowledge is power - the knowledge of HD in your husband's family and the choices (albeit monumental ones) that you can now make reg. a family of your own. You have that knowledge now (in our own case we were unaware HD was in the family until we had already had our own family.) Plenty of people on here to talk to when you need to, while you go through the process of deciding whether or not testing will be the right option eventually for you both.
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Old 28-09-15, 09:16 PM   #3
Bell
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Join Date: Jun 2015
Posts: 19
Default Re: First meeting with Guys last Friday - so confused :(

Hi Crystal,

Thank you, that means a lot. I've had nothing but lovely, supportive responses to all my posts so far. So nice to know this community is here. Thank you.
x
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Old 28-09-15, 10:23 PM   #4
Cupcake
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Join Date: Mar 2011
Location: East Anglia
Posts: 1,490
Default Re: First meeting with Guys last Friday - so confused :(

Yes,yes and yes to all your questions, emotions and worries. The box is open, the bomb ticking, and what to do is the question.

You have started in the right place, help at Guys to ponder through what is right for you both. It will help you support hubby, because you may end up with difference in opinion in what to do. There is no right, no wrong, but with a network of professionals, family and friends it is a good starting point. Don't forget if he has the test done there is always the option not to get the result at the last moment.

I am glad you have found some support on here, when I joined, hubby had been tested, the cat was out of the bag, and we were going down the slippery slope. The lovely friends on here, have been my rocks in times of despair, and I will always be truly grateful for the friendship, love and support they have given to me, in my darkest hours, they are my HD family, and are for life.
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Old 28-09-15, 10:53 PM   #5
Allan
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Location: Hastings, East Sussex, UK
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Default Re: First meeting with Guys last Friday - so confused :(

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Originally Posted by Bell View Post
I've had nothing but lovely, supportive responses to all my posts so far. So nice to know this community is here. Thank you.
x
Hi Bell

There are times when I just can't help myself - and this is one of those. There is also an HD community in France - and they do things a little differently. I visit it at least once a week for inspiration: DingDingDong ...... very creative, thinking outside the [medical] box sort of stuff.

.
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Old 28-09-15, 11:06 PM   #6
Melody
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Default Re: First meeting with Guys last Friday - so confused :(

Hi Bell,

Ditto everything said above. The counselling is tough, but they leave about a month between appointments for a reason, so you can work it all through and think about other questions you may need to ask. It is a tough journey, but worth all the preparation to get those results.

Wishing you all the best.

Take care. x
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Old 29-09-15, 07:26 AM   #7
banda
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Join Date: Apr 2014
Location: Consett, County Durham
Posts: 477
Default Re: First meeting with Guys last Friday - so confused :(

Can only concur with the comments made so far...we did not receive any counselling...hubby was already symptomatic and they just tested. I regret that ...not sure he does as he still prefers the head in the sand approach! But take advantage of it, the road is hard but sounds to me as though you are both able to talk about it all which can only be helpful. There are lots of questions, ifs ands and buts ... stay strong, take your time ... like many things the future course of action often becomes clear eventually. Take care.
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Old 29-09-15, 09:53 AM   #8
shiraz
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Default Re: First meeting with Guys last Friday - so confused :(

Hi Bell.....confusing and worrying times for you....and I am like you, knowledge is power...better the devil you know. Like Banda, my husband didn't have any counselling he just said do the test, but he had been symptomatic for many years and we just wanted an answer to why he was the way he was, so finding out was a "blessing". Yes, a blessing - because now help is at hand. I've been able to learn what hd is - I had never even heard of it - and so our life is better because I understand what is going on...and can change my ways to able to care for him. I guess at the end of the day as you are thinking of starting a family, having the test and the results can only be a good thing....
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Old 29-09-15, 03:18 PM   #9
gnl150362
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Join Date: Sep 2015
Posts: 3
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

It's quite ok to be angry with this. My wife has recently been diagnosed and we have recently found out that it was known to be in her family but no one passed on the information. Now 4 children and 7 grandchildren later we have the task of telling them and putting them through tests. Knowledge is all powerful but we didn't know it was in the family. A terribly hard decision to make and our thoughts are with you both.
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Old 30-09-15, 03:06 PM   #10
Bell
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Join Date: Jun 2015
Posts: 19
Default Re: First meeting with Guys last Friday - so confused :(

Thanks to everyone who replied, I am overwhelmed but not surprised :) It's such a comfort to know there are folks out there who get me and understand and can sympathise etc. Thank you, you're support is really appreciated.

Sending love to you all :)
x
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