Hi,  I am now a caregiver for a wonderful woman who has just been diagnosed with HD.  I have had great difficulty just finding someone who knows what HD is.  Every time I try to talk about it I first have to try to synopsize the disease so people can get a vague idea what the disease is.

She is and has been the love of my life and I feel as though I am losing her by inches. She seems unaware of the dimentia that is slowly taking her away.  Her personality is completely different.  She is apathetic and has a relitively flat affect.  She is still beautiful to me.  She has many facial ticks and is always on the move.  She has some involuntary movements in her fingers and toes, has in recent weeks slammed her elbows into the walls and such.  She has completely withdrawn from social situations, and is afraid of " getting lost".

I think I am just running on at the mouth because I am in hope someone knows what I am talking about.  I am gratefull that she seems very happy and gets pleasure out of simple things.  She laughs quite often, and tends to giggle at times.  I guess she could be in a less "euphoric" mood so I am grateful she seems happy.  It does make it difficult when I am feeling so sad and lonely not to have her to talk to anymore.  She seems unaware of her plight and jokes readily.  She doesn't seem to recognize my sadness.  I suppose I would rather have her as she is than angry and upset, but it leaves little outlet for my grief.

Thanks for listening

I am glad you found this page. Thank you for responding. Sometimes I wish I could gather everyone up that is suffering with this disease, whether it is as a caregiver, at risk, or not and having HD and make their pain go away. When I met my husband eleven years ago he thought that he had HD. I didn't believe it and married him anyway. One year after we were married he was diagnosed with HD. Our lifes continued to change. Knowing now what I know I would have married him anyway. He is the love of my life. It has been years of ups and downs. Not your typical issues although we had those, too. Over the past 6-7 months he has been trying to leave me. He does not want to hurt me anymore. He wants to set me free and for me to go on with my life. He moved out completely about five weeks ago. I worry about him. I miss him. But I try to respect what he has asked. If it were me that were sick he would never leave my side. I wish he wouldn't insist on me leaving his. It is a very difficult time. I talk with him 1-2 times a week and at this time see him a day or so each week. It is very difficult. We wish for only one thing. For life to be what is was. But in my sadness, I love him and am just thankful that I have had what we did for the past eleven years. It is a very difficult thing to accept each good moment and not not wish and want for more but I am working on that. I pray for him every day and I pray for all families that are affected with this horrible disease. Again thank you for posting and I wish you and your family well.      dar