I've been on that site for 2 years now, how can I find you there?by VRE - Huntington's Disease Support Center
Yes if he is in the gray area he could pass a higher CAG to his offspring. It's call Genetic Anticipation. He may be in the clear, but be a carrier. Just one more crappy thing about this crappy disease!by VRE - Huntington's Disease Support Center
My husbands uncle seems to have a touch of what you are seeing. He has HD, but has decided he doesn't-he disowns his kids (2 of whom are HD +-1 symptomatic in a group home, the other asymptomatic) He gets angry with everyone, shoots off disturbing emails to everyone in his contacts, has been rude and abusive to spouses (exes now) calls them filthy names, and claims to be a Christian and beratesby VRE - Huntington's Disease Support Center
Things that slide easily are best, if she is having chocking problems, you could take some baked potatoes, puddings, really soft meats with gravies, apple sauce, pastas. My husband was given a liquid "thickener" to add to juices and things, so they like seem to do better with a little texture-not too watery. My husband has trouble with chicken in particular or dry meats. you could tby VRE - Huntington's Disease Support Center
I hope you will do as you say, for your sake, your childs sake and Mr. H's sake. He has enough to deal with with HD, disappointing you will just be another thing he can not handle. Sorry, but this one isn't one you can fight, HD most always gets it's way and you have an at risk child to think about. Wish you luck too.by VRE - Huntington's Disease Support Center
He may be dealing with violent outbursts, which may make him isolated from friends his age. Most kids in his boat probably don't want to bring any friends to his house, if she is like that. He most likely has all the house hold responsibilities if his Dad is ill. So he could be doing all the laundry, cooking, cleaning. lawn, trash... She may have balance issues and uncontrolled movements whiby VRE - Huntington's Disease Support Center
I think it varies, but what I have seen (and heard of) seems the moods and reasoning and such are the first and the physical later. My husband has had the anxiety for about 8 years, then came the irritability and swallowing difficulty the last couple of years and now severe chorea and balance issues.by VRE - Huntington's Disease Support Center
YAY-we have moments like that in with my husband too. I am so happy when he doesn't avoid those kind of events, even when I know it is hard for him. Means a lot to us doesn't it?by VRE - Huntington's Disease Support Center
Well, mostly it's me (no HD) walking on the back of my husband's (HD+)heels from behind, but that's just us, I guess.by VRE - Huntington's Disease Support Center
I agree Donna, it is so hard to just grieve! You feel like you are in a whirl wind and sometimes I was just so hurt and angry at him that I just couldn't look past that to the bigger picture. We are losing them. The real them. I know in my heart, that HE wouldn't want to act the way he was acting. He NEVER in 22 years acted that way, that's how we knew something was wrong. It's hard to comby VRE - Huntington's Disease Support Center
Calm is good! Anxiety only makes the movement worse, that and trying to stop it! Still praying it's something else, but glad you have geared yourself up for the worst.by VRE - Huntington's Disease Support Center
Praise God! I am so thankful for your awesome news! What a year this will be!!!!! You deserve all the good things coming your way!by VRE - Huntington's Disease Support Center
Works for my husband! We are fans of this one. He has been taking it since June and they upped the dosage following his HD diagnosis. Amazing results. Hope it helps your son.by VRE - Huntington's Disease Support Center
Sure, you could suck at your job and not know it. Same goes for me and I don't have HD. I don't know what kind of work you do, but maybe it's time to see what kind of lower stress kinds of things you can do. Mistakes are going to happen whatever you do, whoever you are but if you are a surgeon that is a big deal. If you are a painter-mistakes can make a masterpiece. Use this opportunity toby VRE - Huntington's Disease Support Center
It is very hard and I can tell you I have been in your shoes and it is so very confusing to your self esteem and it not only makes the people with the disease different, it causes the caregivers and loved ones to HAVE to be different. It is a brain disease and effects EVERY aspect-physical, emotional and mental. I assure you he doesn't want you to leave him. His brain disorder wants you to leaveby VRE - Huntington's Disease Support Center
So sorry to hear that you lost your precious mother a while ago to this most unfair disease. I too understand your confusion over what really eventually took her, but agree with the decision not to operate when it would most likely only prolong her suffering until Huntington's eventually finished it's destruction. I am thankful you learned much from this site, as have I. I am on the front endby VRE - Huntington's Disease Support Center
Hey Liz, no one gets tired of reading your posts, and if they are they just don't open the link. I read the last posts a few days ago, but just really needed to think before I responded. My heart just breaks for you. My mind tells me "I know exactly how I would handle this scenario" I would get the hell out of there. I'd take those boys and go and never look back. My heart sayby VRE - Huntington's Disease Support Center
I feel sure it is easier for HIM to not dwell on this, especially as you are hiding some of your symptoms. Anxiety is a symptom of Huntington's and trying to rein that in for his comfort is just a ticking time bomb. Sounds like he is just in denial and just grasping at a way to ignore what is happening to you. Don't get me wrong, I am a fan of denial! I would love to just close y eyes and pretenby VRE - Huntington's Disease Support Center
of course you are scared, and I admire your stay positive in front of the kids, but hope you can find some time to process what this all mean to you without having to act like it is something it isn't. You will need time to go through whatever emotions are natural to you after the news. I can't imagine hiding what you are going through. I don't think kids need to hear all the gory details, oby VRE - Huntington's Disease Support Center
Good luck with the neurologist appt on Friday. Be sure to find a Dr. who has worked with Huntington's patients a time or two. We went through 4 different ones before really finding a great one. We are in Dallas TX, where you would think would have been easier to find with the "Center of Excellence" in our midst. But we ended up going to a city almost an hour away to find one who notby VRE - Huntington's Disease Support Center
Almost sounds to me like maybe she just studied that and it was fresh on her brain! LOL Good luck with whatever he is facing in a couple of months...by VRE - Huntington's Disease Support Center
Prayers from Texas for that! How long do you have to wait for your insurance to take effect? There are meds that can help with the movement and you may be able to visit the doctor AND stay at your job if you want to. I understand your worry, and pray this will keep quiet until all the pieces are in place.by VRE - Huntington's Disease Support Center
So very sorry you lost him. Sounds like the right decisions were made according to his wishes and likely would have not prolonged his life in any way for him. I hope you find peace in the fact that you honored HIS choice in the matter. I know this whole thing has been so very hard for your family and I am looking forward to the day that this forum doesn't need to exist. Thank you for sharing tby VRE - Huntington's Disease Support Center
Sorry for all the typos in the last post-was posting from my phone!by VRE - Huntington's Disease Support Center
It's a great forum and you guys are really on top of things! Thanks for all your work on the site!by VRE - Huntington's Disease Support Center
I havent heard this discussed either. Let us know if you find some info. to support a connection.by VRE - Huntington's Disease Support Center
It is hard to be the one getting the anger and blame all the time and NOT take it personally. Yes it is the disease talking, but it is coming out of the mouth of the ones who need us the most, and we are desperate to help. Thankful you are able to turn it around in your house. We have in ours too, but I have had 22 years of as close to perfect as I can imagine to compare it to, so I can still sby VRE - Huntington's Disease Support Center
Most of the people I have met through our support group as in my husbands case report anxiety as THE symptom that first took them on the path to getting tested. It is probably different for many people,but it seems to be the first area of the brain that is affected. My husband was a Navy pilot and now has to totally drug up to get on a flight or even an MRI for that matter.by VRE - Huntington's Disease Support Center
So sorry you are at this part of the journey-so very hard to have to make these decisions. We are in the early parts, but my husband has had chocking issues for a couple of years. It has improved with a change in meds, but made us really have to visit this question sooner than later. My husband and I have spoken with his various doctors to get an idea of the ramifications of either decision andby VRE - Huntington's Disease Support Center
I have been out of town, but just now catching up on the forum I have been seeing some posts on my phone, but it is hard to respond from the phone, and then they put a hold on responses. So I am on the PC tonight and want you to know I have continued to pray for all of us!by VRE - Huntington's Disease Support Center