There is a facebook site called Huntingtons The Good, Bad Ugly and also a private caregivers group. I am on both. My husband has HD and bith have been very helpfulby Vicky - Huntington's Disease Support Center
Could be progression, but could also just be meds... You are bound to notice every minute changes, as not only are you with him and know him presymptomatc but you have learned so much and know what you're looking for. Initially when we were having issues prior to diagnosis, Dave was put on Zoloft by out primary MD. It effected him in a way that made it look like he was almost getting to end stageby Vicky - Huntington's Disease Support Center
Ive also heard that it is so hard to keep up with a conversation. So like when we are talking at our normal pace and cadence they cant really focus. Try slowing the conversation down and try to include him by asking him questions and WAIT on the answer. They can be slow to react as well, as sometimes it can be difficult to put their words together with their thoughts. See if it makes any differenby Vicky - Huntington's Disease Support Center
Sorry for the typos, i forgot to preview!!by Vicky - Huntington's Disease Support Center
What part of dfw are you in? We live in Rowlett Texas and we try to attend the Plano support group. I would be happy to visit with you. Your description sound very much like HD and if he has a family history and this behavior is somewhat new, I'd be willing to bet this is HD you are noticing. My husband has HD and he had the head movements and "nodding" for years that just got more pronby Vicky - Huntington's Disease Support Center
You are strong enough. you can not make him better, you are needed more than ever my friend! Those boys need you! This whole HD crap bites! You need to turn your anger to HD, not yourself. I told you before when the rants started here, I would pick a spot on the wall and pretend it was HD and I was punching the shit out of it! That's how I got through that phase. You can't do it all. That's unreaby Vicky - Huntington's Disease Support Center
Again, I understand and appreciate all you guys do, I am not trying to be critical of your management of this site and you are not obligated to explain anything to me. I am more disgusted with the people who are doing as you say, creating an account for the sole purpose of selling BS. Breaks my heart that these people have no clue what this board is even about yet have all sorts of access to ourby Vicky - Huntington's Disease Support Center
Just wanted to let you guys know how much you have helped me through the past year following my husbands diagnosis. I have seldom written an original post, but have shared some ips and downs on thers posts here and there. I am a bit frustrated with all of the SPAM that gets through, while my posts from my phone are delayed for the monitors to evaluate the content prior to posting. I realize thatby Vicky - Huntington's Disease Support Center
Wish I could offer you what you are wanting to hear...encouragement. Unfortunately HD doesnt take in account what you need. If you are looking for an exclusive relationship, you already know you don 't have that with this fellow. If you are looking for comfort when you need it, you aren't getting it from this guy. HD doesn't get better, it gets worse. Whether or not he had HD, this is not the guyby Vicky - Huntington's Disease Support Center
My mother in law has a CAG of 41 and was diagnosed in her late 60s. She will be 81 this year and still lives in an independent apartment in a senior center. her brother , also CAG 41 is almost 80 and lives independently in CA. My husband has a CAG of 42 and is on disability and has severe Chorea age 58. I realize this isnt always the "normal", but seems to be our "normal"by Vicky - Huntington's Disease Support Center
Sorry you are dealing with this! Hope Mike can give you some info. Just wondering if you have looked into inner ear issues? My HD+ hub was dealing with this issue a few years back and was given an antibiotic for an inner ear infection and it went away...that was the only symptom he had, the spinning and vertigo.by Vicky - Huntington's Disease Support Center
Think I would get a third test! 38 is in the "gray" area where you can actually pass it on, but may never get the symptoms yourself...ive actually had dreams that my hubs results were wrong, but unfortunately he is symptomatic.by Vicky - Huntington's Disease Support Center
Bless you all! We have 3 at risk as well. The oldest wants to get tested in the next couple of months. So happy your son does not have to go through all that is Huntington's!!! Rejoicing with you!by Vicky - Huntington's Disease Support Center
No, the CAG canT be determined by the symptoms. The higher the CAG usually means earlier onset of symptoms, but not always.. My husband has CAG 42 and has severe chorea. He's 58 yo. Some people with higher cags dont even get chorea at all.by Vicky - Huntington's Disease Support Center
Yes all of what you describe can be HD related. Sorry she is still unable to come to grips with this, but denial is also common... Meds have really helped our scenerio! Things have gotten so much better and leveled out the mood swings my husband was having. Now we just have the occasional grumpy days, but I have learned to manage to just shut up and get out of the way and that seems to help matteby Vicky - Huntington's Disease Support Center
At one point we thought mid stage, but I think since the medication straightened him out, he is really in the beginning stage. He does have severe chorea and without the xenazine he would be an exhausted mess. No one really has speculated what stage he is in, and since so many people have a drastically different journey, i am still surprised they even have stages documented... With the right medby Vicky - Huntington's Disease Support Center
So thankful things have been calm. I have mentioned this before, but it is so noticable that I just have to report it again. When Dave was on Zoloft he had lots of energy, but was completely manic. The criticisms, the spending, the judgements, the movements, the falling, the yelling, cussing, blaming, anxiety, swallowing, coordination...all of it was horrible and mimicked late stage HD. When theby Vicky - Huntington's Disease Support Center
This weekend was a little crabby. I got up early and started working in the yard. I did a lot of what I had been neglecting cleaning up the weeds and loosening the dirt in the flower beds. It was hot and I felt really goid about how much I had gotten done. The kids and grandkids who live up the street came over to swim about 1. I had been working away about 5 hours by that time and started puttinby Vicky - Huntington's Disease Support Center
I know you "don't want to do that" but girl, you ate going crazy. The Donnie you knew is pretty much gone, you know that, he can't do the things he used to, you know that, he can not love you the way he used to or even really would want to, you feel that. Even when you see the glimpes of what you remember about him, they are becoming fleeting and less often. God is all around you and wiby Vicky - Huntington's Disease Support Center
I am in the same boat. My husband was diagnosed in July of last year. I know we haven't seen the worst of it at this point. We constantly read and learn as much as we can about all there is to know. He is on a fist full of meds, that make him a sleepy zombie most of the day. Very unlike how he used to be. I miss the old guy, but learning to love the new guy and I am commited to making whatever Iby Vicky - Huntington's Disease Support Center
I can not even imagine where we'd be if the meds hadn't worked for Dave... I know how hard and lonely it is. But the outbursts are very much improved and I'm not sure if it's his meds or mine that do the trick, but I have felt less overwhelmed and I only occassionally have my crying jags and waves of dispair. Trying to just get really involved with HDSA and raising money and awareness has alloweby Vicky - Huntington's Disease Support Center
So happy for you all! My son married a gal with 2 kids, then they had one between them! So we got instant grandkids! They are all so awesome and have all brought so much joy to us!by Vicky - Huntington's Disease Support Center
That is awesome, thanks for sharing this great tip!by Vicky - Huntington's Disease Support Center
I dont really see a moral obligation to find out. Personally, I feel like just knowing it is in the family should be enough to understand what practical, financial planning you should be working towards. Things that everyone should be doing anyway, but put off because they are hard to talk about. Insurance is always a crap shoot, as is life in general. The only reason I would want to know is if Iby Vicky - Huntington's Disease Support Center
I like Huntingtons The good, the bad and the ugly. Im also on one just for caregivers...by Vicky - Huntington's Disease Support Center
Prayers are with you as always. This is once again so hard. What would happen if you go to church without him? We had our education day this weekend and then support group tonight. I got in trouble for talking to a new family at support group and not paying attention to dave. So he just went to the car and stood there fuming. So i asked him what he was mad about and he told me I don't give a shitby Vicky - Huntington's Disease Support Center
He will never be the father you imagine for your child. I agree you should leave well enough alone (your words) recall him fondly to his child, but dreaming about saving him is not possible or helpful for you or your child. Focus on what is in front of you. mr H will likely make his way into the care he needs without your help, but still will not be able to be who you or your child needs. Tough tby Vicky - Huntington's Disease Support Center
That does seem odd for them to cut his hair under any circumstance. Especially if you are doing it on a regular basis.by Vicky - Huntington's Disease Support Center
My hd hub has always hadnlow BP but last visit to the Dr was unusually low. He was told to add salt to his diet to get it up a bit...by Vicky - Huntington's Disease Support Center
On one of the "good days" try to explain to him that he's absolutely right about incurable disease part, that is true about HD but there are medications that can help with the symptoms that could make things a little better for the both of you. One of the first symptoms of the onset of HD is a disregard for other people's feelings, he has that! Parts of that wont get better with meds oby Vicky - Huntington's Disease Support Center