Howard, while I don't know you, I feel as if I do from your posts. You are a kind, loving father and a wonderful advocate for your daughter. I am so very sorry that you have experienced this. Thank you for having the courage to share this story. I think you are amazing and I wish you the very best. I would be willing to help you.by eve - Huntington's Disease Support Center
Everyone is affected a bit differently, but there are some common themes. Not always, but frequently some of the first symptoms seem to be irritability/mood swings. Sorry to hear about what you're going through. This is a great place for support. I also read over old posts (you can also use the search button).by eve - Huntington's Disease Support Center
I wish I could help you, but I know nothing about this. I thought I'd make a post to bump this back up to the top in hopes someone else will have some info.by eve - Huntington's Disease Support Center
Very interesting!by eve - Huntington's Disease Support Center
This would be upsetting. Glad to see you can be rational about it and understand it's the disease, not your husband.by eve - Huntington's Disease Support Center
Thanks for letting us know. It seems shocking seeing how he was doing such great work helping humanity, but got caught up in some really terrible decissions. What a tragedy all around.by eve - Huntington's Disease Support Center
It would be great if he could find someone to talk to such as maybe a therapist to help him work thru these feelings. I think you have the right idea especially trying to get him to see that he may have regrets if he closes down emotionally.by eve - Huntington's Disease Support Center
Similar scenarios have been posted here about head trauma causing the rapid onset of HD symptoms. I'm really sorry this happened to your husband. Thanks for cautioning us about this. Take care.by eve - Huntington's Disease Support Center
I am not connecting the dots. Was he involved in HD research? Really a shame how a person with a brilliant mind capable of such good makes a terrible evil decission such as this.by eve - Huntington's Disease Support Center
It may be lower (although this is not usually the case, but it has happened), the same or higher. Usually when inherited from the mother it stays around the same is what I think I've read. Most of the research about juvenile HD says that CAG counts that dramatically increase in children are when it's inherited from the father (called anticipation). But juvenile HD is not that common. There sby eve - Huntington's Disease Support Center
Would it be ealier to get into one that a little higher or a little lower? Maybe go to the car dealer and just try having him get in and out of some different height levels to see what style might suite him best.by eve - Huntington's Disease Support Center
Let us know how it goes for you, Tellieby eve - Huntington's Disease Support Center
I'm sure this has got to really hurt when you've had to cut some people out of your life, but it sounds like the right decission. I guess I can understand how people might have the attitude of, "I want to remember this person a certain way," so they stop coming. But why don't they hold onto the old memories and also make new ones? Also, I suppose some people are uncomfortable thinkiby eve - Huntington's Disease Support Center
My FIL didn't have much of any chorea (towards the end of his life he would shuffle his feet when he sat and he also would move his fingers/hands a bit). Use the search feature of this site. I think this was recently discussed. Marsha posted something about 1 in 8 pHD's don't have chorea. Also it can be common for the motor symptoms to come later.by eve - Huntington's Disease Support Center
I'm sorry I don't know the answers to many of your questions, but I have read about people who suddenly develop a foreign accent. It's not common, but according to this article there is at least one case where it was associated with severe migraine. Very sorry to hear about your symptoms. I hope others can answer your other questions.by eve - Huntington's Disease Support Center
I think the spinal tap is optional. You don't have to do anything you don't feel comfortable with. It's kind of a newly introduced test (they didn't used to include it) and I know there's a reason why they're doing it (don't know why...you'll have to ask and then weigh any info benefits to them versus if there's any risk to you as to whether or not you want to do this part of the study).by eve - Huntington's Disease Support Center
I will have to deal with this some day (not now because we have other behavioral problems that we are trying to work on). Here on some things that look good to me: Or maybe try searching this site for how some others have approached this. Have you tried the search forum option? That might give you more good ideas. Sorry to hear of what you're going through.by eve - Huntington's Disease Support Center
PS I don't know why my post has a Miss You sign! I didn't think I put that in, but if so it wasn't intentional!by eve - Huntington's Disease Support Center
Thanks Marsha! So it sounds as if it's a smooth pursuit-tracking problem. That would be really irritating to have that problem.by eve - Huntington's Disease Support Center
I'm curious about the eye movement abnormalities. Would it be a problem with convergnece or gaze position or nystagmus or just what is going on?by eve - Huntington's Disease Support Center
I know it's considered against protocal (some say unethical) to test a minor. My at risk son has ADHD and autism and probably some defiant disorder characteristics. It is likely that his actions/symtoms are not related to HD, but it is also possible that they may be. I would like to have him tested because I might then feel better able to steer clear of some of the drugs that may not be the beby eve - Huntington's Disease Support Center
This is a reputable article that probably is nothing new to anyone (it's dated April of 2004). But I think it's worth pointing out because I can remember reading that some people have said that if pHD people didn't have children, the disease would be gone. This article explains how that is not possible nor true due to mutations/expansions. I just thought I'd post it to help educate thoseby eve - Huntington's Disease Support Center
Thanks Marsha. You put this confusing issue into words that make sense. I too think that the CAG sometimes clouds the issues especially if that is the primary thing physicians are looking at. I like how this study pointed out that the average wait to get a diagnosis was 9 years...that is really sad and hopefully this will change so kids can get help earlier. I am having a dilema because myby eve - Huntington's Disease Support Center
According to this article, children could be symptomatic for JHD with CAG's between 45 and 58. It is interesting because there are adults with those numbers (the lower ones for sure) that aren't symptomatic. I know the CAG count is just sort of a guide... itdoesn't always mean anything...meaning someone could be a 36,37,38 or 39 and develop symptoms or not. And you could have 2 people with iby eve - Huntington's Disease Support Center
This is good news. Thanks Steve!by eve - Huntington's Disease Support Center
This is a very complex topic. It is true that it's difficult to know what exactly each pHD's level of involvement will be. Many people do not become violent and thus as Patty C points out this can be a good example to teach children empathy if they are symptomatic. But on the other hand, violence is never ok no matter what the cause. The urge to procreate is very strong in most of us humansby eve - Huntington's Disease Support Center
We found out when my son was very young and his grandfather was having a lot of problems around age 70+. There was no know history before that. It's interesting because he had been to a neurologist several time who never suspected. His own primary doctor also never mentioned anything. It was a doctor seeing him for something unrelated that first mentioned HD could be his problems.by eve - Huntington's Disease Support Center
I'm no expert, but from my limited experience of being on this site for a couple years, I'd say "no" in answer to your question. The CAG count has certainly been found to be an indicator coorelated to possible onset, but there are many stories of people with the same count who have hugely different onset times. I believe one reason is diet, exercise and who knows what else. People inby eve - Huntington's Disease Support Center
SSRI is an abreviation for medication known as Selective Serotonin Reuptake Inhibitor (explains how it works) that is usually used for mental health issues. Here's more about it:by eve - Huntington's Disease Support Center