Huntington's Disease

[livingwith]

My husband has Hd [Huntington’s Disease]. Life has been a nightmare for my son and myself.My son is very depressed,he is 26 and he turned to drugs in the last year.He is in treatment now,but he is struggleling.I don’t know if it’s HD and he doesn’t want to be tested. I’m trying to get him on SSD or SSI.Drs.don’t seem to understand how distressed I feel.He is my only child, and now I understand why God was not answering my pray for more children.
I’m tryi...Read the full article

[littlemiracles]

I am in a similar situation. My husband also has HD and we have 3 children, ages 16, 13 &2. I know that other people don't understand what we are going through, not only the hell our spouses put us through, but being scared to death that our children may have also inherited this awful disease. My older kids are very angry over the whole situation, but mostly because their dad is almost impossible to live with. I'm not sure that they understand that they may also have HD and I want to wait until they are older to tell them. I am extremely angry that we were never told that it was in the family. We just found out 4 months ago.

[fulltimemom]

I feel for you and do understand. my husband has just recently been diagnosed, following years of abuse, the severe breakup of our family - 4 children & fractured lives my children and I have experienced from my husband's controlling, raging behaviors and sick domination under him which i can now see was partly his deterioration into the effects of the disease - a disease which I had never even heard of before this year. First I would encourage you to take 10 minutes here and there throughout your day to care for yourself. Taking care of yourself helps to stop the cycle of endless hopelessness and frustrations in seeing how this disease in a husband can cripple every family member. Worry never solved any problem, but action does & that first action has to be you taking time to care for yourself, because no one else will. It may be time to just breath in fresh air outside - or to take a hot shower, hide away with a bbok or magazine to read something that uplifts your spirits and gives you a bit of normal thinking outside the stranglehold of worry - maybe just fixing yourself a cup of tea and sitting to drink it with solitude can give you a moment of care for yourself that gives you strength to go the next hour. And when you feel better by taking care of some of your own simple needs, you can make better decisions in dealing with constant combativeness, verbal abuse, arguing and nonsense talk from the spouse who has Huntingtons and better help your son in the process. Your son will be strengthened in simply seeing you take control of taking better care of yourself. My kids have told me that one single thing (seeing me take care of myself) gave them hope of change for our family. It also in some way showed them that living under my husband's abusive behavior was not the only way to live and that treating oneself with love and care set an example of how people are supposed to behave. Nothing is as worrisome as when our children are suffering, I do understand. I know for my own son who suffered most, I chose to constantly tell him I loved him, no matter what - through drug use, depression and even a suicide attempt - I stayed by his side, sometimes up all night with him & told him I loved him and we would some how get through this. It kept him alive when his dad was so secretly abusive to him that he didn't want me or anyone to know the horrible things he suffered at his dad's hand. Love your son & tell him how important he is to you. Our kids (no matter how old or young) need to know they are worth their Mother's unconditional love. When I told my son how valued he was to me, how I wanted the best for him and would stick with him through everything he and our family had to go through, it gave him the will to live. Telling your son how much he means to you is free (it doesn't cost a dime) and you can do it when your husband is not around if you need to. It is hard to get out from under abuse from a husband when the abuse is classified as Huntingtons disease related. It is equally as hard to know what behaviors are the disease and what is simply a husband with Huntingtons' being an abusive person by choice and personality. Days and nights filled with constant turmoil and arguing, senseless conflict, confusing talk, frayed emotions, shattered feelings and the growing physical symptoms you witness of the disease is a nightmare for a wife and the kids. I suppose it could also be for a husband whose wife has Huntingtons and the situation reversed. I don't know because I have only experienced being a mother & wife, experiencing what my husband & his disease has done to our entire family. He always acted to others in public that he was a good husband and dad, had a respectable, well paid profession and was well-thought of in the community. About 6 years ago however, his behaviors became less controlled in public and people in the community began to make excuses to not have him involved in things as simple as school events- things like fund-raisers. Little did people know what we lived with behind closed doors for many many years. He was a drug addict in a business suit, trying to self - medicate for many years, he contracted every single sexually transmitted disease known due to risky behaviors and infidelity when he traveled, and he was a prolific user of alcohol with prescription meds (bottles stashed in the pantry and clothes closets). He was active in our church, yet I found out after the fact that he'd sexually harrassed several teen girls and 5 different women whom I considered long time, close friends at different times over the years, one of whom he nearly raped and she was afraid to tell anyone, because of his standing in the church and that she feared no one would believe her and she was embarressed for me to find out. Now that he has the full-blown physical symptoms of Huntington's and has had multiple strokes and heart attacks and heart procedures, he is angry all the time. He lives with another relative, because i cannot care for him and my children both. (He lunged at me & tried to choke me to death one time when I would not agree to him being hurtful toward one of our children and that was a final blow to what I knew I could put up with.) I will never allow myself to be abused anymore - Huntington's or not. I am sad for the life Huntington's stole from me - I barely recall the man i fell in love with who would have never treated me back in the first years I was married to him, then the way he grew to over the years. But I accept it and have decided I have to do the best I can for my children and for myself. He certainly did abuse us all and felt he had every entitlement to, even though he did not, disease or no disease. I want my children to be tested in time when we can handle the next step of our family ordeal. I want how we deal with them having this disease better than living a life of unknowns like it was with my husband - I encourage you to help yourself by taking care of yourself, a little bit here and a little bit there. Love your son. My prayers are with you, as they are with all the women who are dealing with and have dealt with this.