I think HD is a "me" sort of disease. And most all people are "me" centric anyway. Myself included. I think you have to sort out the "me" stuff before you can tackle everyone else's needs. Sort of get your base and integrate internal thoughts with those around you. Some do that more successfully than others. But to think about yourself first seems a pretty standard human trait... even for those who actions are the opposite. I am sure they realize the selfless action will impact "me" in some way even if they later choose to ignore that. I agree jl that youth and it's lack of life experience makes for different thinking than those of us who predate dirt.

C'mon, Eric! Admit that "me-centric" thinking is much more prevalent in the male world.

Admit it!

lol, i'm not going to enter the male vs. female debate on "me" centric. But I did get a good couple of laughs from the above posts. Thanks guys.

And BigMac that was very well written. Thanks.

Hi Chef, welcome.

I don't post very often anymore but I read the forum a lot.

I, too, am at risk. I have chosen not to test. I agree with people that make the point that you can make informed decsions, etc if you knew but I choose to not know because, well, my life is pretty good as it is right now.

I am recently married, and I found when I was dating, that my at risk status was something that I always brought up within a couple of months. It became a great judge of character for getting to know who I was dealing with. A few guys said "so?" with no emotion (aka I don't really give a damn cause I'm only here for a good time now) and some guys said "I could never live if something happened to you" (aka too weak to be the right person for me). Obviously my spouse, who I waited until I found the right person, was concerned and felt he could love me even through the worst of times, if that was to be our fate.

I know that a new relationship is all about "future-tripping" but it is also about commitment. If you don't find someone that would love you if you were to become fat, bald, sickly, disabled, poor, or whatever... we'll then maybe its just not your time my friend. Good things come to those who wait. I promise it's true.

Great post, Tracie!

First, don't let anyone convince you to test before you are ready. If you want to wait for your sole mate. Do so...the support is greatly needed.

Second, you said "Right now, we are at the point where we are beginning to really open up to each other. Talking about our past secrets." Now is the time to tell her. If you don't and she thinks you have told her everything, she may leave you because of the secrets, not because of HD. As my husband calls it, HD is the elephant hiding in the corner that no one seems to be able to see. It will jump out at you when you least expect it.

My husband told me when we had been together for only about 6 months. We were much younger than you....16/17. I had a couple of thoughts in my head...I'll never end up marrying this guy and if I do, he won't have it anyway. So much for those thoughts, but I was glad he told me right away.

Best of luck. You've come to the right place for support.



Edited 1 time(s). Last edit at 07/01/2008 09:27AM by Sally.

Thanks JL!!

Hi Chef,
I haven't posted in a while either, but to let you know, my husband told me about HD from the start of our relationship. He was a wonderful man, so I took the risk and married him.
Although I am separated now, I do not regret marrying him. I have a set of twins that are two and we left for safety reasons. My husband and I still keep in close contact. I still try to "caregive" from afar when I need to do that.
I think this is one of those decisions that you have to use your intuition with....hmmmm do men have built in intuition? And stating that have I started another thread war????

Here is my experience.. My now husband told me within the first few weeks of our relationship. He told me his mother had hd. I had no clue what that meant, but I looked it up.. It really did not scare me away.. I fell in love with him, not really ever talking much about the subject. He is at risk for Hd. There are problems , I feel are related to Hd, that have come up . He takes suppliments, and sometimes we talk about Hd. I am glad for all the wonderful times I have had with him. I know that Hd, will someday take him completely from me. Right now is what I live for. Our days are good and some are bad and stressful. I do love him, and would not trade him for a non at risk person. He is who he is. I myself and taking a risk, but he is worth it.
I think and this is only me talking, and I would never tell you what to do, But I am glad he told me. I knew going into this and I think that helps when I have a difficult day.. at least I know why.

Thanks everyone for their continued support and sharing of stories.

My girlfriend left on Tuesday for a two week trip to France for her sisters wedding. Thank goodness for skype. But anyways, when she gets back we are going to have a long talk about our family and our family story.

I know I am probably making a LOT bigger deal out of this then I should be. But after looking into her eyes before she boarded the plane, I know both of us care a great deal about each other, and all this worry would be about nothing.

Thanks again all!!

Every relationship should be based in truth. If it based on deception or omission it won't work. That's not just an HD thing, it's across the board. There is too soon to tell someone and too late. Once you are hoping for commitment is the right time.

I think I am in a slightly different place on this one. This is a pretty heavy burden for someone in their 20s!! I remember when I first found out my mother had HD, I was 30 and I felt like I got kicked in the gut. It was an awful time. I also worried about how it would impact my career or if my friends found out. I never told anyone my mom had HD, I just said it was a neurological disease and we didn't know what it was. The ironic part is that I got my phD working on neurodegeneration, never did I think it would be so personal for me.

Now that I am 41, my views are different and I live my life to the fullest. My husband and I had been married for 7 years when we found out, and it took us about another 5 or so to work through it. I still don't think he has accepted it, and I see how it has been an incredible weight on his shoulder (we have been married 17 yrs). The hardest part to accept is that this is something that can't be "fixed".

Don't get me wrong, when I found out my mom had HD I did address the implications for me and my family. I ended up getting tested 3 months after finding out. I am HD+ (CAG 43) but.. I am very proactive in how I approach HD - excercise, supplements, positive attitude and trying to live my life every day as if it was my last. I am symptom free still but who knows....

I guess I'm running on a bit. My point is - you are so young and you should be enjoying life and your new relationship. You will know when it is the right time to tell her. She should know before you get married - especially if you plan on having children. We found out about my mom three weeks after I had our daughter. We still worry about her, and when it is the right time to tell her. She is only 11 - We give her fish oil every day and hope for the best. I want her to have a normal childhood. We'll tell her, but we don't know when exactly. Luckily we have an 8 yr old son who is HD- (tested in utero) who will help her if it ever gets to that point.

i told my husband about 2-3 months into the relationship. I had already made up my mind though to be tested when I chose to have children. i knew when i was 16 yrs old that i could never pass this on and if i wanted to have children then this was a sacrifies i need to do to give the best for my children. I tested pos last yr. I am 27 and we are enjoying life to the fullest. its kinda crazy i actually have a better look on life and now enjoy more of teh small things. Hubby and I are still waiting to have kids but he's with me through thick and thin.. if she has real feeling for you then she will stay around to see how things develop in your relationship. oh you should tell her.. she has the right to know and you dont want to start a relationship on lies... good luck.. let us know how it goes..violet