Mike, Thanks for checking on us. We had his appt last Friday. We had a wonderful experience. The nurse, other therapists and staff, and Dr Sung were all great. He really took his time to answer our questions. He is helping us with my hisband's anxiety and depression and we just started new meds for that. Then we will start Xenazine soon. For us, just seeing a staff that knows about thby Kristine - Huntington's Disease Support Center
Barb, Thanks for reminding me to scroll through ALL the messages. LOL It was interesting to read about your clinic. I will definitely be assertive and ask the questions I want answers to. I will post an update after we go to the clinic.by Kristine - Huntington's Disease Support Center
Mike, Dr Sung is who we will see also. I'm going into it with an open mind. Our current doctors are clueless about this disease and just keep throwing meds at Rob. At the very least, this clinic can't be any worse. And hopefully we will gain some insight into what we can do. Thanks for your input.by Kristine - Huntington's Disease Support Center
Very good information. Thank you!by Kristine - Huntington's Disease Support Center
Mike, now I'm curious. What was your experience?by Kristine - Huntington's Disease Support Center
I already sent you the request. At least I hope it was you. LOLby Kristine - Huntington's Disease Support Center
Yes, I'd love to know the medicine. He takes Ambien. His doctor prescribed Lenesta but insurance won't cover it. Do you have a Facebook?by Kristine - Huntington's Disease Support Center
Liz, I'm glad you have a good clinic now. I'm so excited for our March 6 appt. I just read through your other post. Wow! It's been tough couple of years for you. Thankfully Rob is pretty mellow. He gets stressed and can't handle changes, but he doesn't have outbursts. We have 12 year old boy/girl twins. We don't have to worry about HD with them. We used donor sperm and IVF to have thby Kristine - Huntington's Disease Support Center
I am so excited! We live in an area where we are so alone in this disease. Our neurologist just always says, "Yes. It sucks. And things will just get worse." Our primary doctor said, "You're my first HD patient. You know more about the disease than me." I got through all of the red tape and got my husband an appt at the HD clinic at UAB in Birmingham, AL. We will finallyby Kristine - Huntington's Disease Support Center
Once again I have to say we are living parallel lives. I deal with the same. Our kids have a field trip at school in a couple months going to New Orleans. We live on the Alabama Gulf Coast. When I told Rob that I was thinking of going with them, he freaked out. Obviously I won't be going. I can do short trips in town to the store, but that's about it. He doesn't talk on the phone anymore becauseby Kristine - Huntington's Disease Support Center
Liz, It sounds like we are living identical lives. My DH's cag score is 48. He was diagnosed 5 years ago and had recently started progressing quicker. Mostly mental with some balance and coordination issues. I just quit my job to stay home with him. He has panic attacks when left alone. He is always cold now too. His hands are always freezing. He has been losing weight in the past 6 monthsby Kristine - Huntington's Disease Support Center
Liz, My DH has made excuses, too, for his problems. He even blamed his Zoloft and took himself off. When he still couldn't poop, I convinced him that it wasn't the Zoloft and he just started back on it. Yes, peeing is an issue, too. He tried every medicine out there and finally found Vesicare helps. The Urologist even did an ultrasound of his bladder. Vesicare is VERY expensive but it helpby Kristine - Huntington's Disease Support Center
Is it normal to battle chronic constipation in HD? My husband is at a point in his disease where he is requiring more help. Mentally he is having a harder time processing things. He is stumbling more, too. He has been battling severe constipation for several months. I'm thinking this is a part of the disease because of muscle control. Any input?by Kristine - Huntington's Disease Support Center
I guess I should introduce myself. I'm Kristine. My husband has HD. He was diagnosed in 2010 with a CAG of 48. We knew long before the official diagnosis though. We have 12 year old twins who are not at risk. We knew the risks all along and chose to do IVF with donor sperm to have children. My husband has been on disability for many years and hasn't worked. He has always done things in the housby Kristine - Huntington's Disease Support Center
I can't even begin to tell you how much these words hit so close to home. From all of you. There are so many days when we go through our daily lives feeling like nobody else GETS it, and then I read this and I just know that we are not alone.by Kristine - Huntington's Disease Support Center
After trying several different kinds, my husband is on Viibryd. It works well, but is expensive.by Kristine - Huntington's Disease Support Center
Your post hits so clost to home. I wish there was the perfect answer for you. Something concrete to tell you that this is what you should do. But there isn't. Each of us has our own experiences, some may be harder than others. Some have had the blessing (or curse, depending of how you look at it) of knowing about the disease from the beginning, and some have not. Yet, here we all are in a sby Kristine - Huntington's Disease Support Center
My husband also suffers from the extreme jerking leg movements in his sleep. It's so bad that I have to put a body pillow between us so I don't get kicked. In fact, his entire body stiffens and jerks. He won't take the Xenazine so I can't tell you if that helps or not.by Kristine - Huntington's Disease Support Center
I could have written your post. You are absolutely not alone. I, too, am the wife of a PHD husband. I have twins that will be 9 years old this weekend. We are watching him change before our eyes. He was diagnosed a year ago with a CAG of 47, but his symptoms started several years ago. Most of what we are dealing with are emotional outbursts, mood swings, etc. I'm going to be honest, the maby Kristine - Huntington's Disease Support Center
Hope4 and Hope2, That is exactly what we do, too. Our (almost 9 year old) twins know that a lot of their Daddy's outbursts or temper problems are HIS issues and not theirs. Of course, that doesn't give them a free pass to run over him and not respect him, but it does mean that when he loses his temper and starts to yell about something that is so trivial in life, I have taught them to just tuby Kristine - Huntington's Disease Support Center
Not only have I seen the movie and loved it, but I have a friend who's daughter has FA. We compare stories all the time about how similar FA is to HD.by Kristine - Huntington's Disease Support Center
Well, I'm going to post on this one. My husband has HD, 39 years old, CAG of 47, symptomatic for several years. We always knew he was at risk because it ran in his family so strongly. We made the conscious choice to use donor sperm and IVF to have children even before he was symptomatic or tested positive. Back then, when he saw a genetic counselor, the counselor strongly suggested testing ifby Kristine - Huntington's Disease Support Center
Howard, may I ask how are your daughter's movements when not on the medicine? My husband's chorea movements are still somewhat mild right now and only seem to get worse when stressed, tired, frustrated, etc. He is 39 yrs old and has a CAG of 47 and has been symptomatic for several years. Since is chorea movements are so mild (for the most part), he is worried about potential side effects of theby Kristine - Huntington's Disease Support Center
What about Xenazine? My husband was just presribed this medicine and we just got it approved through insurance, but he is afraid to take it for fear of the side effects. Anybody familiar with it on here?by Kristine - Huntington's Disease Support Center
I'm sorry that I can't offer you any answers either. I just wanted to lend you some support. I do understand the ache of wanting a child. When my husband and I decided to have children and we knew that he was at risk (VERY at risk considering how much HD there was in his family), then we made the choice to do IVF using donor sperm. Looking at our 8 year old twins now, and also knowing now thaby Kristine - Huntington's Disease Support Center
I've been a lurker for some time and thought that I'd introduce myself. My name is Kristine and my husband is Rob. We've been married for 17 years and have two very beautiful children, 8 year old boy/girl twins. Although we have known for quite some time due to symptoms, we just got the confirmation of Huntington's Disease today. My husband tested positive at age 38 and has a CAG score of 47.by Kristine - Huntington's Disease Support Center