Wow you are getting a huge spectrum of opinions; I guess that is good!

As someone who's tested positive, I have a newly-found respect for the idea of NOT testing. But I still don't think I personally would have been able to find even temporary peace with the 50/50 status; I could not get it out of my mind; therefore I needed to test, to move past it, even if the results were bad. Over a year later, I'm realizing I had felt "OK" but it's really taken til now to feel "good" again.

But I also want to add (from perhaps a slightly biased opinion), that I disagree that HD and its path are "for sure". My test result paper actually said that I have a 99% chance of developing the disease; it did not say 100%. I don't know what accounts for the 1% other than that you just don't know FOR SURE until it happens. I don't know if it takes into account a couple people I've heard of (here, thru Marsha's notes from a recent convention) who've lived into old age with the HD gene and no symptoms (they suspect another modifying gene was overriding the HD gene). And that was before they had supplements and such that are available to us now, or could be available within 5-10yrs and just may help either explain or even expand that "1%".

Realistically I believe HD will probably affect my health negatively, and my husband and I have tried to prepare for the worst in a number of ways, but I do not believe my path will be the same as others in my family. It's already different because of the knowledge & understanding that my husband and I have today, and the knowledge & understanding that's out there and always increasing.

Ally, I just saw your message after returning to this bulletin board after a long absence. At 65, married 43 of those years to a woman with HD, I'll give you my perspective on your future should you stay with your man that long.

My wife's mother began exhibiting symptoms of HD about the time that my wife and I were married. We had heard nothing of this running in the family, although I later found three previous generations of HD sufferers. My wife and I watched her mother deteriorate at home and nursing home for 15 years. My wife's father had a heart attack while he was caring for her at home.

My wife was diagnosed with HD in 1990. The course of the illness for her is incredibly slow, but inexorable. She was driving until about 2002, when fender benders convinced us that it was time to turn in her license. She was walking competently until 2006, when a bathtub fall caused brain damage and confined her to a wheelchair. She has needed full-time caregivers since then, principally me, though I have professional caregivers come in daily for four hours. Other than HD, she is in excellent physical health. Medication has eliminated chorea, but her speech is nearly impossible to understand, she has difficulty swallowing, and cannot stand unassisted. With proper care, and barring pneumonia or accidents, she could easily live 10 or 15 years more (she's 65 next month).

The most devastating change, to me, was not the physical but the emotional. Some HD sufferers get mean and violent, but my wife was the opposite. She lost all emotion and all capacity to love. This happened early on, soon after she was diagnosed. She didn't cry at her father's death or at our daughter's wedding. More importantly, to me, is that she stopped any physical or verbal expression of love to me.

Will all of this happen to you if you marry your guy? I don't know. I do know that if I were in your position, I'd want to know the chances that my future spouse had HD. He may disagree, and there are many valid emotional reasons not to be tested. It's his choice whether to be tested. But if I were you, it would be a deal-breaker if he declined, and I'd walk away.

My wife and I had 20 wonderful years together, more than a decade of emotional upheaval, and now are living holy hell. I guess you know where I'd come down if the test was positive.

WdWilson3 - Your post really struck me about your wife being so unemotional . . . is she on any meds? I know Ray had a period of outbursts and irratibility, as well as apathy, but once he was put on an anti-depressant that totally changed! He recently passed away, but the 3-4 years preceding his death, he was so lovable and although he couldn't really produce tears, he'd get choked up and you could tell he was overwhelmed with emotion. He always wanted to hug us and tell us he loved us . . . at our son's graduation, he just kept kind of yelling out, because he was so excited when they called Joey's name to go get his diploma (he had the whole place in tears!). I know everyone with HD is so different, but I'm just wondering if meds would help . . . my thoughts are with you! I know it's a tough road, but it sounds like your wife is very lucky to have you!!

Wdwilson3 - wow - your post really struck me too. I started another string on this forum about HD+ fathers and daughters because my husband has HD and is so completely emotionally absent that I am so worried about how it will affect my daughter (son also, but they seem to have a better relationship). Other's responded on that post with similar complaints regarding the absence of emotion. A couple of people said that meds helped them. My husband has no emotion, no love, no caring, nothing. His other HD symptoms are very minor - still functions at a very high level at work, physically he is doing great. He is unable to have an emotional connection. I feel like I am living a nightmare because I don't want to break up our family but I don't know if I can go on like this. Everything was ok in this area until the last few years.

Thanks for your thoughts, mjdelcon and hope2. Yes, my wife takes anti-depressants, mainly to stabilize her mood. Would another drug work better? I have no idea. The absence of emotion, starting as it did even before her diagnosis, makes me think that it's one of the fundamental ways that HD works in her, and restoring it would be very difficult. I did see your other post, hope2, and your husband seems much like my wife. I hope you can get him to a skilled doctor who will get him a drug that will help. I enjoy passion, and I miss it, and don't think that I'll experience it with my wife again, but that doesn't mean that we can't be tender and caring to one another. She knows what I'm going through, and I know what she's going through. After a while, we became comfortable with that. A lot of talk (and some shouting) went on before we reached that point.

Several years ago I attended a symposium on HD held at the University of California's San Francisco campus, and one of the speakers presented a literature review of the psychological aspects of HD. Her presentation highlighted that loss of emotion was a relatively common effect of the illness. I can't tell you how relieved I was after hearing her presentation and speaking with her -- until then I thought it was my wife rejecting me for other reasons. (God knows there are other things to reject me for, but that's beside the point...)

Again, thanks for your caring thoughts.