Dad passed away yesterday morning peacefully. I truly feel that he lived life to its fullest up until the bitter end. He had such a positive attitude and even enjoyed his one year stay at the nursing home. He became very close to his favorite nurses and they even cried when they saw him over the last couple days because they knew it was over. They enjoyed him as well and treated him like famiby tmccullough - Huntington's Disease Support Center
I've lingered on this board a lot but only posted a couple times. I come from a large family with HD - my father has hd and so far 9 of us have tested and 8 are positive - I am so far the only negative but have 4 siblings who haven't tested. My dad is in his last days of HD as he has pneumonia and I don't think he'll make it this time around. For those who are living with HD on a daily basis,by tmccullough - Huntington's Disease Support Center
My dad's CAG is 39 and he showed symptoms at 67. My sister who turns 42 today has a CAG of 44 and has been symptomatic since 35 or so. My sister who is 43 has a CAG of 42 and has been symptomatic since 35 or so. My oldest sister's CAG is 40 and she is 57 and been showing symptoms when she was in her early 40's. I have a brother who is 45 with a CAG of 36 and the COE says he may never show symby tmccullough - Huntington's Disease Support Center
It's been successfully tried in patients who have severe depression when drugs are unsuccessful. My sister is 42 and the worst part of HD for her is her psychotic tendencies and depression. She's tried about every mix of meds that don't seem to work. The implant which in the past had been used for Parkinson's patients was recently used in a trial study with depression and they are ecstatic witby tmccullough - Huntington's Disease Support Center
Thanks Dave. Her neurologist is evidently wanting her to have the surgery because she is so resistant to any medicines she has tried for depresssion. I did google it and now it all makes sense. Thanks again.by tmccullough - Huntington's Disease Support Center
Hello all. My sister says that her neurologist referred her to a COE to get some type of surgical implant in her brain with an implant also in her chest. When I asked my father's neurologist about it today, he said it's actually not a new device (just new to treating HD chorea) and that it's been used for years to treat Parkinson's and MS. Her insurance won't cover it so I wondered if anyone hby tmccullough - Huntington's Disease Support Center
Michelle, Congratulations on your negative result. I know what you're going through with carrying the "survivor's guilt" as some call it. I have 12 siblings and so far 9 have tested and I am the only negative as well. I tested over 2 years ago and I thank God every day that he spared me and my children from HD although I carry this feeling all the time about the rest of my familyby tmccullough - Huntington's Disease Support Center
I waited for about 2 years watching my other siblings all coming back positive. My oldest daughter was getting to the point of dating so I decided to test with my husband's support. We never told a soul ahead of time because that is how I wanted it. I wanted to be able to deal with it on my own first for a little while before I would tell family members. Well, to my absolute surprise, I was nby tmccullough - Huntington's Disease Support Center
I took my dad to his neurologist yesterday to get him off Haldol once and for all and he mentioned Tetrabenazine but told me that it still is not FDA approved and available through Canada but his insurance won't pay for it. He said the medicine would probably cost $200 - $300 a month through Canada. Let me know if you hear anything different. Thanks for the post!by tmccullough - Huntington's Disease Support Center
Congratulations Teej! My sister is 41 with a CAG of 44 and not doing good at all. I'm so happy for you - I remember when I got my negative result - it was the heaviest burden I've ever carried in my life for those couple years. I'll keep your sister in my prayers.by tmccullough - Huntington's Disease Support Center
Hello Kristine. I agree with Ron. Talk to your mother - I think you will be surprised in the long run of the outcome. I also tested negative in 2005 and have 12 siblings (9 have tested and I'm the only negative). I also have 4 daughters so I can understand the guilt that I'm sure your mother harbored in her soul that someday her children could suffer like she has. Email me anytime if you nby tmccullough - Huntington's Disease Support Center
Melissa My thoughts on what you are going through. I know that symptoms can vary based on your CAG count but I am the second to the youngest of 13 children in my family. I am 40 and tested negative (so far the only negative in the family). I have seen several different counts in my family with varying symptoms but my brother who is 45 with a CAG of 40 is still not showing symptoms. He doesby tmccullough - Huntington's Disease Support Center
Eric I don't think his chorea needed medicated but the doctor did. His neurologist said that it is definitely not the HD that is making him sleep. He said it is the medicines because even though he is on relatively low doses of each medicine, when you combine them, they can make you zombie-ish... is that a word? I love adding to the english language. Anyway, thanks for the input about Tereby tmccullough - Huntington's Disease Support Center
Eric I'm calling his neurologist today to get him switched to Risperdal or something other than Haldol. Can you explain to me what Center of Excellence is exactly - it may help my other younger siblings as they progress with HD. Thanks. Reneeby tmccullough - Huntington's Disease Support Center
Dave Thanks for the info. on Risperdal. I will mention it to his neurologist when I call him today. We have to do something. I just returned from 10 days in Disney and Mom said he pretty much slept while I was away. I know HD is bad but who wants to sleep all the time. Reneeby tmccullough - Huntington's Disease Support Center
Pat Thanks for the info. I'm calling his neurologist today to see if he can switch his meds. This sleeping is crazy - it's like he's just existing and that's all. Reneeby tmccullough - Huntington's Disease Support Center
blackcat We took Dad off of the Ativan so it doesn't seem to be the culprit. I would say it is boredom except that it is such a deep sleep that he is in like he is drugged up and his blank face seem like it's medicine. Thanks for all your help. Reneeby tmccullough - Huntington's Disease Support Center
Shar Thanks for the info. on Haldol. I am calling the neurologist today to see if he can wean him off and put him on something else. This message board has been so very helpful to me. Thanks again.by tmccullough - Huntington's Disease Support Center
Jimmy Sorry for the slow response - I just returned from 10 days in Disney World. The doc prescribed it for his chorea - he's a neurologist. He seems to know a lot about Huntington's for being located in a small town. Thanks for the response. Reneeby tmccullough - Huntington's Disease Support Center
Dave, Thanks for your help. I feel like I am the only person in my family who can help as I am the only negative so far. It's tough, I have 4 daughters of my own and a very understanding hubby who supports me so I don't have to work. I agree that he shouldn't be sleeping around the clock and have to be woke up for meals. When he is woke up, he looks drugged. It's terrible to watch. I leaby tmccullough - Huntington's Disease Support Center
Stacey, Thanks for the nice welcome. I'm not sure about how advanced he is. We live in a small town and lack of doctors is an issue. At one time, we took him twice a year to Johns Hopkins in Baltimore to their HD center and they were amazed how well he was doing with a CAG of 40. He just gave up his license in January - I think he sensed it was time to. He had some chorea until he went onby tmccullough - Huntington's Disease Support Center
Thanks for the post. Dad's chorea isn't bad at all. His anxiety level is always high but I know that comes with HD as I have other siblings showing the same symptoms. My concern is that he has to be woke up for meals. He doesn't arouse much at all even though he sleeps in the living room with the tv on, telephone, people visiting, etc. I hope his neurologist suggests something else that mighby tmccullough - Huntington's Disease Support Center
Thanks. I will be taking him again to his neurologist soon and will ask him about the abilify. Maybe it will help. His chorea isn't bad at all - I guess because of the Haldol but he is so tired of sleeping - he always looks drugged up. I don't know. Maybe its not the haldol. We will see. Thanks again.by tmccullough - Huntington's Disease Support Center
Relatively new to the HDAC. I read a lot on here but never post much. I am in a real dilemma and need some help. My dad is 76 with HD and his neurologist has him on effexor, haldol, and ativan. For the last 4 or 5 months, he has been a zombie, literally sleeping around the clock except for when my mother wakes him up to eat meals. The family doctor says its the HD, Neurologist says it is Atiby tmccullough - Huntington's Disease Support Center
Hi. My name is Renee. I am 40 years old and from a large HD family. I have 12 siblings (6 have tested positive and 1 negative - me.) My father is 76 and has HD cag repeat of 40 and in mid to late stages. Johns Hopkins is currently doing a longitudinal study on our family because they are a research hospital, have a nice HD department, and they are interested in very large families such as minby tmccullough - Huntington's Disease Support Center
Doreen... I noticed that you have a mother with HD and 13 siblings. I found this interesting as I come from a large family as well. My dad has HD and I have 12 siblings (had a brother die at birth) and I've tested negative. Greetings - I'd be interested in talking to you sometime.by tmccullough - Huntington's Disease Support Center