It breaks my heart hearing all your stories. I was not even told that the man I love was in the first stage of HD. Instead, there were multitude of lies, one on the top of another, on the top of another. We lost so much, too much....Too much for a loving heart to bear...And never told why...

Only once he mentioned that his brother died from something called "korea" or something like that, some kind of skin disease that is in family. That was it. I googled it and there was nothing under skin diseases, just some genetic movement disorder under "chorea". Of course it could not be that, he would of tell me if it was...

My sweetheart, love of my life, lost me just before the time when he would be needing me the most. Will there be anyone for him when he needs the most loving care? The show of strenght and power will be all gone. All lies, all pretense, all 'make-believe' will be gone too. Will money be able to buy it? What will become of the man I love? Will anyone care for him? Where will he go to hide? Will anyone be there for him? The one woman who loves him in sickness and in health is gone from his life, devastated by the abuse.

And all that was needed to make sense of the upside down world we lived in were two words - Huntington's Disease - and I would of stay and love him and take care of him for years to come. In love and understanding. Instead, he is roaming around for the any and every momentary escape from suffering, never telling the truth to no one. Never believing that someone might truly love him in sickness as well as in health, in weakness as well as in strenght. Never trusting anyone. Never trusting God. Alone, so utterly alone. The saddest, most devastating truth.

There are no more words left. Just an overwhelming loss. For both of us.

Hi Hana, so sorry to hear your story. Sadly there is a lot of personal loss with hd. Was it just his parents that were lying? Or did your husband know he had hd and was lying too? Or maybe he didn't even know himself. Does he know now that he has hd? I do get upset when there are lies and secrecy about hd, i think with the truth, at least you know what your battle is. I'm glad you found the forum

Hi Hana-

I am so sorry things didn't work out. You sound like a wonderful gal. There may be lack of truth or sometimes the illness manifests itself in ways that the patient is not able to communicate correctly. As far as the abuse, etc. many times the patient is controlled by the illness and
cannot help it to an extent, however, there are so many medications that can help control those issues and let the person live a much more
normal life. It sounds like it would have made a tremendous difference in your lives and for that I am so sorry.

I just want to say that I feel so bad for you having to go through that and it was not good that you were not told the truth. However, I do believe that is because many of us that are affected by HD are afraid to tell the truth. THis is due to the uneducated people in our society who judge us or reject us. I wonder if this man just was so desperate to have someone love him and to have someone in his life and was afraid you would leave him. Still no excuse and yes he should have been truthful but it is just another reality in the HD world.

I myself found it hard for many years as people constantly judged me for trying to live my life- having kids, getting married, etc. I come from a very small town and I remember when I was as young as 15 and had a crush on a boy and hearing his mother told him to stay away from me because of the disease being in the family. I will never forget that-even now at 40 - i still remember those feelings. I sheltered my children from HD due to this- I never ever wanted them to have to live that.

Anyhow, just thought I would explain why HD is sometimes a secret but I really wish it didnt have to be.