You too can go see the Center of Excellence Staff on your own...My daugher and son went with me once to learn where and to meet the folks so they could in future go back and discuss anything.

Please get help with this situation, so you are clear about your decision. You do have a powerful carrot to hold out, your part in making another baby...

Apple

Hi G,

It sounds like you are doing the right thing in finding out more about your situation and considering your wife's feelings. This is a VERY sensitive issue and she may or may not be ready to really dive into it. But you do need to keep talking to her and loving her, even when she seems irrational. (Sounds like you're doing that. ) I was in her shoes a few years ago, at risk & wanting kids. Its not an easy place to be. Leaning on each other right now will help you both.

I want to give you a great resource about PGD. I went through the process and now have 6 month old HD Free twin girls! I did it after testing gene + but you can also do non-disclosed PGD if she chooses not to test.

Here is the link:
[www.hdfreewithpgd.com]

You or your wife can also email me if you have any questions. stacybrook@aol.com

I applaud you for not wanting to put more kids at risk! Best of luck to you with this very difficult decision.
Stacy

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Edited 1 time(s). Last edit at 02/10/2008 07:50PM by G.

It sounds like you both are being very smart about this whole process. That's great. It's not so easy to keep a clear head at times like these.

Do you know her dad's CAG? That may help you with your decision. Not that it would be the same for her but I think I remember reading that usually family members CAGs are quite similar.

Also, please be sure you REALLY examine the PGD route before you take it. It seems like a great solution until you really delve into it and see some of the not-so-evident outcomes that are possible. I don't want to start a debate, this is just a suggestion. I have seen Stacy's posts and been to her website and while it is wonderful that this was the right choice for her family it is not the choice for everyone. The website is very one-sided so please be sure to research other resources too.

My spouse and I have been through the PGD decision making process and so I feel I can speak to this point. I am happy to talk with you privately about it and our decision if you want to.

And I liked the Mars/Venus thing...isn't that the truth!

MICHELLE, thank you for your wonderfully articulated explanation of how you choose to live. You said the words I have been searching for. I admire you and your family for your ideals.

Fred,
I really enjoyed your post, i am an avid gamer and i hope... my husband catches my sympyoms as you did. It is a worry to me, as it is so insidious.I know my huisband soo well, third wedding anniversary today! But we have been best mates for a long time.
G, i have two great at risk kids.. i can't help you make a decision. Only you and you wife can know, but even without HD, it can be a difficult one. I hope you both make the decision best for yourselves. Only you both and family will play it out. I hope you both make good one and even if you don't... isn't life like that... we will still be here. Best of luck.

Kev,
I have not been able to get that information, my wife isn't very interested in knowing.
G

Hi G,
I was delighted at your reference to Mars/Venus! Self-help books can be so annoying but there was certainly a golden nugget in that one, about the different way men and women communicate. Your wife is lucky that you have that in the back of your mind!
Im a woman at risk and feel very strongly about pgd, if that is the name of the procedure you can use to make sure your fetus does not have HD. I know little about it, so keep that in mind...
But that possibility wasnt available when I had my two teenagers. If it was, and seeing how HD is playing out in our family now, I would absolutely go for it. Seeing a loved one develop HD is heartbreaking and if there's a way it could die out in my children's generation and help them avoid being at risk I would try to do that any way I could.
You have your own family situation and your wife's feelings which will guide you in your decision, though, so it may not be so straightforward in your case, I understand.
The other thing I relate to so well in your post is your struggle with your wife's ambivalence about testing.
My at-risk relatives have a wide variety of stances on acknowledging their status, ranging from denial and the head in the sand approach, to wanting to know but then not being able to talk about it once diagnosed, to needing to talk about it (the last one's me, could you guess?).
So it's forced me to accept that each person's way of dealing with it is the best way we know how, and what we can cope with now, and not expect them to feel or react like I do.
It's been painful for me and means I can feel alone and isolated with my worries, which is maybe how you feel too sometimes. My husband cant always engage with my anxiety either, and that's hard. But Ive drawn strength from the people on this forum and I hope you find it useful too.
Good luck on your journey and best wishes,
Fleur

G,

Speaking of crossing bridges and pre-planning, you should now be buying all the insurance you think you will ever need. This branch of your decision tree is not dependent on anything else and can be completed now.

As usual, I agree totally with Dave, on this point.

I can't stress the importance. Make sure that you have STD and LTD (Short and Long Term Disability).

And probably Long Term Care.

Address this issue proactively, rather than reactively - and check the "pre-existing condition" clauses.

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Edited 1 time(s). Last edit at 02/10/2008 07:55PM by G.

I have always lived life to the fullest, G.

It's my best advice to EVERYONE!