Huntington's Disease

[livingwith]

My father has Huntington’s and it has been very hard on my mother, sister and me. His personality is so controlling, it is like living under a dictator. He controlled every aspect of our lives, from who we could talk to, listening to our phone calls, and even opening our mail. He expects perfection from me, and it is so hard because nothing I do seems good enough for him. We had to run away several time because he was abusive. We had to go back every time though because he can not care for...Read the full article

[Arlene]

I just recently found out that my husband has HD. As you said it is difficult to watch someone go through the changes that are caused by this disease. You are doing the right thing though. GO ON WITH YOUR LIFE. I also recommend that you don't have the test. My mother in law had the disease now my husband. It seems that after he found out for sure that he has the disease our whole life has changed. He had some of the symptoms before the test but how it seems as if he has given up. We have 3 children and I tell them the same thing I am telling you. DONT GET TESTED. It is a fact of life that we are all going to die from something at some time. Live your life to the fullest. Make the most of it. As for your father being abusive! I don't know if he is seeing a doctor or on any medications? Maybe he needs to be or something or perhaps if he is on anything it is not the right dosage. You do need a support group. May I suggest speaking with a minister or someone with the State Social Services Department where your located. I hope this advise helps. Hang in there!! Your right your father does love you!!!

Arlene

[moore]

i read these two stories early, very early, this morning. could'nt sleep again ,worrying about my four beautiful healthy children, and my six beautiful and healthy grandchildren. i found out a few months ago that i inherited that '' GODAWFUL'' omg i have so many worse words i could use to discribe this horrific disease! my momma has it, she got it from her momma , and she got it from her daddy, don't know who he got it from. we lost alot of older aunts and uncles too. i'm scared to death....but i believe that ignorance is NOT bliss..just ignorant. i do believe that knowledge is power. God how i wish we had known about this thirty-five years ago, i might not have given birth so willy-nilly, i just wanted children, and they are my heart and soul! i believe in getting tested. it's hidious, and i can hardly believe my own words coming out of my mouth.it's shocking, and frightening and ALL of that. but we have information now, we can make some wiser choices now, but PLEASE think about your possible offspring. i HATE how i feel,but DEAR LORD IN HEAVEN i gave it to them.and i'm so damn mad i could just implode. and my eyes are swollen from crying, i can't stop the tears. i DO NOT want my kids and grankids to have to watch me go that way, it sucks. omg, i just wanted to tell you that I think you should get tested, and how deaply sorry i am for your dad, and the rest of you.it sucks,i know

[SSC1655]

My dad was also diagnosed with Huntington's; I was 13 when he was. It seemed like he progressed pretty quickly. It was really rough on my mom, sister and I as well. However, the worst of it was when he became violent, so I totally understand. Being the oldest, I would always interfere when he was getting on my sister, which nearly put me in the hospital many times. My sister and I would beg my mom to put him in a home, because we HATED being at our own home. I put off going to college because I refused to leave my mom and sister behind. My mom finally put him in a nursing home and now I am also at school many states away.

All I can say is that you need to find someone to talk to. Here I am about 5 years later, and I just got married this summer. I realized through the emotional toll a wedding takes just how much baggage I have been carrying around about my dad. I am seeing a counselor now, and love it! It so freeing to get so much that I had stuffed away out in the open. For so long I have held onto feelings of guilt, anger, hurt, frustration, rejection, ect. All those ugly emotions make you an ugly person.

I know what its like to feel alone (I almost flunked out my second semester because I was so depressed about everything back home), please don't just "get over it." Find someone to talk to, anyone. Even if you have to pay someone (like I did =) Also, many college campuses offer counseling for free, you should check it out!