We're having our first appointment at the COE tomorrow (well, later today, actually). I can't sleep.

I don't know how I'm going to sleep the nights leading up to our getting our results, if I'm struggling so much even now! :-(

My husband keeps mentioning to me the "symptoms" he's having, and I try so hard to be comforting and supportive, but honestly I don't know what to even say. Usually, I try to say, "Oh, I have that, too. Anyone could have that. We won't know until we get the results." It's hard to say without shaking in fear, though. I try not to show my fear, but I think he knows me better than I know myself, and I can't really hide it. The poor guy. How terrible, to try to get support from your "support person," and she just buckles because she's so scared herself. :-( Often, all I can do is open my arms and give him a hug, because opening my mouth doesn't seem to lead to anything helpful.

He says he has involuntary movements. I ask him what they feel like, and he says that he'll be sitting there, and suddenly his arm or leg will move. I can't understand what that feels like. I do know, though, that sometimes I move a body part without thinking about it. I wouldn't consider this an involuntary movement, so much as just an unconscious one. I wonder whether he's maybe experiencing the same thing . . . ?
And is just hyper-sensitive to it, because, well . . . he's thinking about it so much? I hope so.

We visited with his parents (hubby, me, and baby) on New Year's Eve. You all would be proud of me! I promised my husband (and myself) that I would be civil, and that I would make my best effort to be kind. And I was! I didn't feel like being nice, that's for sure, but I discovered that it feels no worse to be kind than it feels to be angry and bitter. So, why not be kind?

I'm not sure how much of this I've disclosed on here, but, for a long time, my MIL said that she didn't know the risk was 50/50, which is why she never told us about HD. I never believed it, since she'd had power of attorney over her mother, had attended every appointment with her mother's neurologist, had spent ample time at the COE, etc. She has since admitted (after it came out that the doctor told her, years ago, about the 50/50 risk) that she was lying about not knowing, and that in fact she'd known all along that the risk was 50/50 and didn't tell her children because she wanted them to marry, have kids, etc. Her husband (my FIL) knew, too, and didn't tell us, for the same reason. We can't chalk up HIS refusal to disclose, and encouragement of us to have children in spite of the risk, to HD-related impairment, can we?

The sense that an injustice was done to my husband and me, and to our child, and to everyone on my side of the family who loves us and our son, is huge. My parents are grieving, knowing that their grandson (and son-in-law) are at-risk and their daughter is hurting enormously. My brother is hurting. My husband and I are, of course, hurting enormously. The in-laws, though . . . they say they wanted us to have children in spite of the risk. They got what they wanted. It seems so unfair for them to "benefit," having gotten what they wanted, while everyone else is in pain. For them to benefit from the decision they made that caused us all to be in pain.

Anyway, that visit's now over, and I'm going to try to put it out of my mind until I have to summon the strength to feign genuine kindness again for the next time.

Hoping tomorrow's appointment goes okay. It seems that, generally, the first appointment involves paperwork and a confirmation of family history. That shouldn't be too involved, since my MIL is a patient, and my husband's grandmother was a patient. I'm hoping that, perhaps, we can get a bit more accomplished at our first visit--perhaps combining the tasks of appointments 1 and 2 into the same visit.

My biggest fear is that my husband will test positive with a repeat of like, 48, suggesting that he should be significantly symptomatic already, and is actually doing better than one would expect, given his repeat. Then, we'll feel like we're truly on "borrowed time," and we might find that we can't help but live with an "any day now" mentality. (And, of course, that would spell pretty bad news for our son, if he's inherited the gene.)

I was feeling better over the past few days, which, I think, was partially attributable to having read the good research news. I don't know exactly what happened recently to have turned things around. Maybe I'm just having a "moment." My anxiety is pretty bad, and I've been crying a lot, today.

I'm just so scared for our son. I would do anything to take the risk away from him. I wish I could 'trade genes' with him!

I guess I could just use some encouragement this evening (morning!) Pretty down.

I understand your pain and fear but there are just some things in life that we can't control and life is so hard for people living with and without this disease. My grandparents hid the family history from their children and when it was exposed...it tore several relationships apart...and some permanently. For days when I struggle with the why's and what ifs I try to but things in perspective...I think of my friends who have stuggled with cancer, or lost a child, or haven't been able to have children....or my cousin who has also just recently been diagnoised with another rare disease....she is eleven years old and has lost her ability to walk. Then there is a boy in my daughters class who just lost his mother. Tradgic events happen everyday to the nicest of people....we have no control over that. We do have a choice to how we react .....and I believe that even under these heartbreaking circumstances we emerge standing much stronger than we thought we could, even if it takes some time. Focus on one day. Take one day at a time.If you need to take medication to help you...do so. Put your love and focus in your child now and everyday. Enjoy him....and get what help you need for yourself, so you can be the best wife and mother you can be.

I went through the testing process this past summer, and I totally understand your concerns and your husbands fear that he is having symptoms... I swear I had uncontrolled movements in the weeks we waited for my results. By the time I got the results I was certain I was positive.... and guess what I was negative!
I know realize that my symptoms were caused by the stress I was under....after the good news my symptoms went away...
My testing process went very easily, I had a consult with the genetic doctor (via video link as I am 3 hours away from the hospital that has geneticists). They sent me the forms to take for blood work, and then about 4 weeks later I got the results. They called me as soon as they got the news, as they knew how scared I was, I'm sure if the results were different they would have arranged a meeting, as that is what I was told to expect.. I even called back a week later to make sure I heard them right...the counsellor was great to talk to. Soon after I received information in the mail, explaining that I was negative, etc... and it took until I read the information to truly sink in that I was safe and my children were safe..... I am hoping you get the news that I was so fortunate to receive... keep us posted and thanks for sharing

I hope everything went well.... I hang on to the fact that I don't know and enjoying everyday that I don't know...and I hang on to if I do know...at least we have time... my husband could have been taken away already and he is not...so I have this precious time right now and even if he shows symptoms... at least I have him with me rather than not with me...

I try to hang on to the positive and see every aspect as "not that bad" - it is hard to do and I am not good at this all the time.

I see there are so many other diseases (lukemia, cancer, down syndrome, parkinsons etc) that can be worse or strike younger and each day we have is a gift to not take for granted. Even other events in life can be worse---losing a child, stroke, car accident that paralyzes you, severe sport injury, or any other severe injury.

I have had "my biggest fear" moments..and I have tried (again not so easy) to turn that biggest fear as not such a big fear...if I don't make a big deal and give that fear attention ...it won't be my biggest fear...for the longest time my biggest fear ( and it has broken me down to my knees) was ...what if I spend all this money (sell our house live with family downsize) and invitro doesn't work or it works but I have a miscarriage.... it was one of my biggest fears...but you know what? SO what if it doesn't work or I miss-carry---It was not meant to be and there is something else for me....maybe have kids... hope for a cure/treatment and pray for courage for my kids and myself to understand... and I may be blessed with a wonderful child with HD that I would NEVER have had if invirto worked.... and if my child asks why I didn't do invirtro... I would say if I did ... you would not be here becasuse that is how the invirto process works.

As mentioned before it is NOT an easy decision to make .... once you know HD runs in the family and everyone must make their own diffcult decision that is perfect for them and meant for them...we are all different and have our own lives to live and must concentrate on our life and not on what others have and their life...because you never live your own life.

I wish you the best through this process and pray for your family to have peace.