Huntington's Disease

[livingwith]

My name is Tonya, I am a mother of 3 little girls, I have a husband and I am a full time nurse. My husband’s family has Huntington’s disease. His dad has it and his grandfather died with it. Also, a couple of his aunts and uncles have it. My husband is bi-polar which I know is a sign but his sister whom is bi-polar also has tested negative for Huntington’s. So, does he have it?
I don’t know, he hasn’t been tested. It’s scarry to think about what we suspect ma...Read the full article

[Habu]

Tonya,
I too am a nurse and the mother of two, wonderful young boys, who I am currently raising as a single mom. I found out that their father has Huntington'g Disease (HD) in August of 2006 and our lives have changed dramatically since then. We divorced November of 2007, though we are still in constant contact with each other. His HD has progressed to the point that he barely resembles the man that I married 10 years ago, which makes interacting with him at times very difficult. Of course, the HD changes progress slowly and so, as I look back over the years, it is hard to say when I really "lost" my husband. My husband had been a gentle and very capable father to our boys for a long time but, most unfortunately, that changed as his symptoms progressed. He became very moody and unpredictable and even, on two occasions, went too far disciplining our boys. This made my decision to relieve him of his full-time fathering duties much easier. He lives in a small apartment now and states that he feels much happier because he can do what he wants. He appears less moody too, which is better for all of us. My boys and I pray for him before every meal and I think that has helped us to cope. The man that I married was family-centered. Over the years he became addicted to pornography on-line and with Direct TV and made many poor financial decisions, which he later couldn't explain. Like you, I stayed because I loved him and because I believed it was best for my boys and me (forgiveness is a good virtue to nurture right?). As a nurse, I know too well the course this disease takes and so my position is to "do no harm." That is, I will support my ex-husband as well as I can as he struggles to live as well as he can in light of this disease and the changes it creates. I couldn't stay married to him, though I believe I have honored him through our divorce and friendship now. I want only goodness for him but I have to keep myself and my boys safe. I have chosen to speak openly with my boys and have told them that their dad has Huntington's Disease and that his mind is not always "feeling good." They are 8 and 9-years-old and understand a lot. His behavior has changed so much that I felt they needed to begingto form an understanding of why it had changed, while preserving the love and respect their father deserves.

This is just some of my story. I don't know if it helps. I cannot tell you if your husbands symptoms are a result of HD or not. Further, no one can judge you for staying or leaving your husband. I just know that for me I had to ensure my own mental health and the safety of my children.

Today, I strive to give my children the best life possible, as a single mother, who does not receive child support, this isn't an easy struggle but it is certainly a worthy one. Of course, my greatest fear is for my boys. I don't do well with the thought of them facing this disease and so I just pray (daily) that God will give me the strength to endure whatever lies ahead for us.