Arnold, sorry for what you are going through. That must be a terrible burden to keep this from your brother. It is my opinion that your brother has a right to know that HD is in the family. He does have a 50/50 chance. HDA affects are choices in life: marraige, childern, healthy style... There are things we can do, plus clinical trials... I think it is not fair for you to have to honor that promiby bluedaisy - Huntington's Disease Support Center
That is terrible. It is wrong, and incredibly sad. I'll pray for Tim: something needs to change. For all the HD awarness, we need more as to many docs. are not educated about this disease and only people lucky enough to live near a center of excellence actually get to recieve care from docs who know what they are doing (concerning HD). It's incredibly frightening when a middle school Englishby bluedaisy - Huntington's Disease Support Center
Sorry folks, I just read the article w/reference post on the lighthouse for this reason by Marsha Thanks for listening.by bluedaisy - Huntington's Disease Support Center
Trying to get my sis off Haldol!!! She was put on it due to some extreme behavior problems (taking off, yelling, argumentative) She has been on it for around 6 weeks and barely talks, constant tremors (her head is always vibrating), she is wide-eyed, doesn't seem to know whats going on, and just vacant!!!! Her doc says he wants to see the research about HD and haldol; does anyone have any gooby bluedaisy - Huntington's Disease Support Center
For me: from day the blood was drawn to day I got the results 4 weeks. For my sis: 6 weeks. I opted out of all the counseling stuff because I had finally gotten to the point of just having to know. My sis's doc didn't even mention genetic counseling. He didn't even send her to a neuro. Just a family doc who told her she needed to test and even tried to get her to test her kids! He didn't even givby bluedaisy - Huntington's Disease Support Center
I can't find the article, but at some point over the years I remember reading about a man from Canada that had inherited HD from both parents (2 mutant genes). He was an adult (so I guess you can survive, but we all can up to some point.... guess the word "survive" is subjective). The real significance is that this man, if he were to father a child, would be 100% passing on the mutant gby bluedaisy - Huntington's Disease Support Center
I believe it's in Jacksonville , Florida; second week of June????by bluedaisy - Huntington's Disease Support Center
I don't have any links to real research facts for you but I would say that OSA will mosy definately progress HD symptoms. I went to a neuro to get tested for HD because I was having the symptoms (and it is in the family). Turns out I do not have HD, but do have moderate-to-severe OSA. Since using the CPAP, many of my symptoms have improved. My neuro explained this way ( and logic follows-if yby bluedaisy - Huntington's Disease Support Center
So sorry to hear that... I will pray for your family...by bluedaisy - Huntington's Disease Support Center
I read that, but I don't really understand what they mean by contraindicated... Does anyone have experience with it?by bluedaisy - Huntington's Disease Support Center
Wondering what everyone thinks about the use of haldol for HD? My sis was supposed to start it months ago, but her psychiatrist said no. Well, after a few bad "episodes" and running offs, we got her neuro (who originally suggested Haldol) to get her a persription. Good news is that she is no longer fighting or taking off, but she sleeps most the time is like a zombie most of everyday...by bluedaisy - Huntington's Disease Support Center
Thank you for all the advice. Switching homes isn't really an option as everyone in the family is already taxed. Great aunt is caring for my sis's kids, dad has HD himself and while he is doing quite well: he just can't care for my sis as he believes any false information she tells him and he has cognitive decline that makes him not capable of making sure she takes her meds and keep track of herby bluedaisy - Huntington's Disease Support Center
Trying to figure out what stage of HD my sis is in and what to do... She had a mess up in medication while out of town. She was out for a day (sick, sleepy, etc..) Then 2 days later on the ride home she became agressive and verbally abusive in a gas station refusing to leave. Mom and step dad left her and called our dad to pick her up (which is what she wanted). She insisted that I come to talby bluedaisy - Huntington's Disease Support Center
Truly amazed right now! This is great news for my sister; and many many othersby bluedaisy - Huntington's Disease Support Center
Great comments and perspectives. It is amazing that we are able to have these debates. As more conditions and diseases become able to be tested for; more and more people will be having these debates. The topic of the thread is "help to understand choosing not to test." People are offering perspectives on why they are choosing not to test: completely answering the question. While most diby bluedaisy - Huntington's Disease Support Center
I haven't posted in a while.. but this thread is very compelling. I tend to lean toward the PGD and preventative measures. If I had known I was at risk for HD prior to having children: I'm sure I would have done things differently. I spent some time terrified of testing because I couldn't live with the fact that I had passed this on to my children. I ended up testing for them, because I wanted tby bluedaisy - Huntington's Disease Support Center
I live in Michigan. Our county is small town USA. I would think it would be in my favor except the case worker is quite found of the ex and his wife. The DHS and CPS have recently (few months ago..) went through an underhall mandated by the state. They now outsource the case workers to a private company. The current case worker has not been with us the entire time. In fact, since the new company'by bluedaisy - Huntington's Disease Support Center
Yeah, my sis will have visitation rights we are sure of that. The issue is the ex and his wife have bullied my sis for 10 years about the oldest leadin from taking the oldest, then pushing for less time, and now taking it all away. They have put very bad thoughts about my sis into the mind of the oldest. They have no compassion for HD and the effects it has on a person. The oldest is living thinby bluedaisy - Huntington's Disease Support Center
Thank you Isa for your thoughts and Salamander for your advice. Sometimes it's hard to see your own situation objectively. I am afraid of doing something wrong or saying the wrong thing (something that would make the court view me negatively)... I also want to maintain a good relationship with my sis's ex and his wife as they have already cut-off most of my family from seeing the oldest daughtby bluedaisy - Huntington's Disease Support Center
It is difficult sharing test results with family. I did not want to share mine (even though it was neg.). I was afraid of the implications. I didn't want my sis to resent me or my brother (he's untested). I felt very guilty. I feared my mom would think why not me..., instead of my sis etc... It was hard to accept good news while seeing my family suffer. I can't imagine what you are going throuby bluedaisy - Huntington's Disease Support Center
I think it is a general range for the "average" person with HD. In any average there is a wide variance. I'd have to agree with ConcernedPartner: the higher the CAG = faster the disease progresses. JHD patients have very little time and older adults have more time. Put that together and you average 15-20, while some may have more and many have much less. There is also the varianceby bluedaisy - Huntington's Disease Support Center
Isa, how are you doing? Not the best result, but still an optimistic future. I hope you are doing okayby bluedaisy - Huntington's Disease Support Center
My grandpa (who had hd, although it was a secret) had head injury and all of a sudden had severe symptoms. My sis's went from midly symptommatic to severe in 1 yr. She has had no head injury... She is just starting Haldol as well, it will be interesting to see if it helps her. Also, she just saw a speech pathologist for swallowing issue as well (she chokes all the time) the pathologist said sby bluedaisy - Huntington's Disease Support Center
An inspiring life story! What a testament to living with HD. Thinking of your family and praying for Greg as he deals with his loss.by bluedaisy - Huntington's Disease Support Center
MRO, you are not a bad apple. You have a very strong (valid) opinion about HD given to you from true life experiences and addressed an issue about the possibility for human error. (Honestly, this is an issue I worry about with my test: there is a possibility that there was a mistake: maybe even a blood mix-up... the possibility is there...) Thank you for your honesty. Second, I have found that opby bluedaisy - Huntington's Disease Support Center
I need to know whether I should get an attorney for myself as I am trying to gain custody of my two nieces. Background: After a year of court dates it appears that my sister and her current husband (seperated) will be losing custody of their children. It's sad, but please realize my sister is the best mom I have ever known: she has been rapidly kicked in the ass by HD. In one year she has lostby bluedaisy - Huntington's Disease Support Center
I know a couple in MI and some in other states have. If you click on the opencongress link above it will take you to page and as soon as you enter your zipcode it will generate a list of your local senators and say whether they have voted for, voted against, or haven't voted yet. You don't have to fill out the entire form to see your senators. If you choose to send a letter; fill out the formby bluedaisy - Huntington's Disease Support Center
So sad. A terrible situation. Your first priority is your kids though. I know you know this: you can't allow your children to be put in danger. Right now he is dangerous. Not his "fault." He is suffering to, but you can't add to that suffering by allowing your whole family to be compromised. Think back to when your bf is/was totally rational... would he want your kids to be in a situatiby bluedaisy - Huntington's Disease Support Center