Vicky, Sonny and Dj. all of your inputs are wonderful and help me more than you could ever imagine.. Well I went and got Dalton and brought him home. He told Donnie how sorry he was and Donnie also apologized to him. Things were good tonight but as you all know that could change at any second. I am thankful that tonight we have peace......that means so much. He even kissed me goodnight and told me he loved me.
I hope all my new friends have a wonderful, normal, thanksgiving with your families.
I am thankful to have found you Vicky.
Liz

Hey Liz-checking in on you. Hope Thanksgiving was calm for you guys. Hope you have been able to relax a bit with everyone back home. We are hanging in there in Texas. Seems a bit better here even though we had one little issue this weekend. Today he is in high spirits. He does get a bit manic at night and will probably be up now and come to bed about 3 am, then we will go to church and he'll take a fat nap and we'll start it all again... I saw somewhere that you are on Facebook? If so maybe we could find each other? I'll PM you my facebook name.

Vicky

Well he came home, and everything went pretty good for about a week. as you have read in my previous post, Donnie's grandma is very sick and expected to die anyday.. well Wed. night we were over there Donnie's mom and all her brothers and sisters got into it. one of the brotherswho lives next door to her, said I'll just go get my gun and take care of all of this. well Donnie was already very upset and he grabbed a loaded gun off the gun shelf and said if he comes back I'll kill him....we tried everything to get him to calm down, and put the gun away. finally his mom just took it. she finally got him to calm down.....well, DCS found out about it on Thursday and I got a call from work on Fri. that they needed to remove the kids for atleast the weekend for the safety of the children. they were not over there, they were at home and didn't see any of this go on. Well, devastated is an understatement!!!! I love my kids. they are not "foster kids" or "kids of the state" they are MY kids. Yet another tragedy of this horrible disease. I have to go to a meeting Monday afternoon with dcs to determine if we can come up with a sufficient safety plan, if not, they will have to be moved. Please pray that we can work something out.
Liz

also to add to the drama.....my 21 yr. old who I have also mentioned, that is in complete denial, told me Friday night that he has decided he wants to be tested......he feels like he has HD also. I don't know how to feel about this, I think he is way too young to have to deal with a diagnosis like this. Does anyone have any suggestions what I should do about this?
Liz

Getting tested is a very personal thing. In his case I think that if he is talking about it, it means he is no longer in denial about the whole thing. Best you can do is what you've always done and support whatever decision he makes. He will have to go through genetic counseling if he is mostly asymptomatic, and he may make a different decision once he knows all of the ramifications, or it may bring some sort of clarity to the reasons he wants to get tested. In some cases, just knowing the results + or - can change your entire outlook. My husband has used his diagnosis to rush up some end of life, retirement, financial, insurance, update wills and power of attorney decisions, that are easy to put off when all is well.

I think there certainly needs to be a NO GUN policy in your husbands family!! Especially loaded guns, someone is going to get killed and doesn't matter what the disease has to do with it, someone is dead and if Donnie ends up in prison, he will surely not get the care he is going to need. You say these boys are YOUR kids, protect them at all costs! I understand, I have 3 step-sons and I would do anything to protect them, including not risking someone removing them from my home. You have enough on your plate without trying to go in and out of court, CPS etc. I know the kids were not in the home where the guns were pulled, but Donnie shouldn't be there either!!! Even if they are family. What if he had killed you? Then what happens to them? This is a lot to ask the boys to understand and the going back and fourth is hard on everyone but most certainly on them. You are unfortunately going to have to make some of the hardest choices of your life here and I will keep you in my prayers. Unfair? yes! Depressing, yes! Difficult? beyond!

Protect yourself and the boys. first off-that's the reality you have been dealt. You can't help ANY of them until you take care of yourself!
So sorry for the chaos!
V

Vicky

Oh Liz,
You're story is heart breaking, as is all the stories with HD. Have you reached out to his doctors about how bad the outbursts have got? Your husband has a terrible disease, that will kill him. And I fear you may be at the point that you need to save him from himself and protect you and your kids. Making these difficult decisions doesn't mean you are selfish. If your husband had he mind like before HD set in I'm sure he would want you and the kids to be safe. You need to reach out and ask for help. This is above you, you have and still doing you're best but this disease is horrible. I hope your oldest gets the right counseling before the test. With all the issues going on, he may be carried in the moment. I completely feel that way myself. I'm at risk, not tested and get very overwhelming in my sisters care that it clouds my judgement.
Hang in there.
Christine

Thanks everyone for your input. It helps so much to have people understand when you say my everyday life is a roller coaster. and it litterally is. I have friends and family who try to understand but you can never really understand this disease and what it's like living with someone with HD.
Vicki- DCS made us remove all the guns from the house which is a good thing. Donnie's grandma passed away the day after Christmas. It was very hard for him, but he really handeled it better than I thought he would. He had a terrible headache for 3 days and stayed in bed when we weren't at the funeral home, but he made it thru it. Dalynn is still saying he wants to be tested. I really wish he wouldn't until he is thinking about getting married or having a baby.
Christine- I have not got to talk to the dr about him yet. we had an appt. for Mond. and it got canceled. His moods and mental state seem to get worse daily. He is so, I don't know the word for it, selfish is a strong word, he gets mad when confrunted with something he doesnt want to do or things dont go his way, or if I fuss if he didn't take out the trash, he just blows up on me for no reason.....you have to understand, he used to be the TOTAL opposite. he has always been the most laid back, easy going, whatever I wanted to do, loving person you could ever meet. now he seems like he has an attitude all the time. He doesnt care about my feelings anymore at all. I used to be the center of his world, and now he acts like he could care less if I dropped of the earth. That is sooo hard for me to deal with. I guess cause he's always petted and babied me. I am so lonely. I just want what we used to have.....of course like everyone else we've had our ups and downs, over the almost 23 yrs. we've been married, but I always felt secure in what we had, now I feel like everything could change in a second.
Liz

Liz, I know exactly where you are at. I too had the dream situation for 22 years and now I feel like I have lost a lot of that guy. Love him so much and keep reminding myself he is still in there! It is just heartbreaking and I understand how lonely it feels. I have not had NEAR the issues you have so far, but I never know what might set him off and it is hard to know what I can and can't say, so I just try to keep the peace. Selfish actually sounds better than egocentric, but means the same thing to us! I just have to put it all in perspective and as it is so different than how things were pre diagnosis, I can still somewhat separate the disease from the man I married. Still hurts, not gonna lie, but I have to really just try to honor him in the way I feel I have been honored for the bulk of our marriage. Praying for you all!
Vicky

Vicky

Thank you Vicky. You always seem to know just what to say to help me. Last night he got so mad at me because I didn't sit down in the living room and talk to him. I was in the kitchen cooking supper and our 16 yr. old was in there talking to me and he when I told him supper was ready he came in there and "bumped up" against me twice, so similar to a shove, but not exactly. he does that when he's mad. I said what is wrong with you and he said you know. well we just ate and then he went back in the living room and I could hear him saying something and I went in there and I said what is it? and he said, you can talk to everyone but me. I said what are you talkiing about. I was cooking. He said I know what you were doing and then he started accusing me that If I wasen't talking to him or being with him, I had to be talking and doing things with someone else. he was upset and when he gets upset, he jerks and shakes more. he just kept on and on and on and on. well I just went about the house doing things that needed to be done. later he came in the kitchen where I was playing cards with my 11 yr old and tried to make up. I have a HUGE problem trying to be nice to him after he's degraded me and talked to me like I'm a dog....why would I want to be close to him. I know that sounds mean, but I can't help it. There is nothing about this life that is easy, fair or simple.

You are so right on about that, i have decided when the rants start I just pick a spot on the wall and stare at it, saying nothing and then when it stops, I just get up and go to a different room, usually to bed. When I go to the spare room, he says I'm acting like a 12 year old (lol). It really has gotten better here with a change in meds, so I'm hopeful, but cautious. Sorry you are having to do everything for him, the kids, the finances and cooking and cleaning...then having to deal with his ups and downs as well. All of our kids live close, but are all adults, so I can not imagine a day in your shoes. Wish there was some way to help you from here.just move here and I'll cook for you and your family! Take a minute to unwind, I know it's hard, but you are gonna need it in order to keep up this kind of schedule! Continued prayers, my friend!

Thank you Vicky. Coming off a bad weekend, I need to vent......I can't remember if in a previous post I told you all about how he acted about 10 weeks ago my pastor's wife broke her leg. she was our piano player and I played the bass guitar. when she was no longer able to go on stage, my pastor's son took over worship. he played the keyboard and sang only praise and worship...Donnie had a fit. week after week at church I'd sit there miserable cause he would fuss and make faces, and of course his movement was worse cause he was upset. he threatened to quit church, go somewhere else and everything else you can think of. I dreaded going cause I knew how he was gonna act. Well, thankfully she was back on the piano yesterday morning. I thought everything will finally be good today.....NOT.....my 16 yr old Dalton came out of Sun. School and sat with us (as he always does)....let me tell you that some of the youth of our church,(not all) sit down front and when they are singing, stand down front, which is great if you want to do that....well Donnie got mad at him cause he didn't sit with the youth!! OMG...I couldn't believe it..I said what are you talking about and he started saying during singing...he doesn't need to sit with us he needs to be down there where he belongs...I said Donnie he can sit where he wants to, he wants to sit with his family....well he was mouthing and making faces and jerking...well I set there SO mad at him that I didn't enjoy any of the service....and by the way, our son Dalynn had laid out all night and walked into church at 11:45....church is over at 12...and Donnie didn't find anything wrong with that....he picks on Dalton alot....I think he is very jealous of him and he has NO reason to be. well we stayed into it all day..I had a bday party and a baby shower to go to and when I got home he was asleep. I tried to wake him up at 5:30 to see if he was going to church and he said " no I have a headache" I said well If I acted like you have today, I'd have a bad headache too.
I am so SICK TO DEATH of constantly dealing with this!!!! I am finding it harder and harder to even remember the man I married. I am afraid at this rate, by the time he gets really bad physically and needs me to be there to take care of him, I'm gonna hate him so much that I won't want to be.

No this is the first I heard of this story. I know it's got to be so hard, but just keep reminding yourself this is Huntington's not the man you could have had a normal, rational discussion with. So very confusing to look at him and see the same face you once couldn't live without! I think he needs to get on some meds, and you to if you aren't already! What would happen if you just left him at home on Sunday? Would that cause more problems? I wish I had some great advise for you.

Vicky,
I try to remind myself...but my personality is not the " I'll be understanding and loving no matter how much you trash talk me" I just don't have that in me. He is on medication 100 mg zolaft and 50 mg of siriquil. also 2 sleeping pills that don't help any!! we go back to the dr. Tues. and I cant wait to talk to him. This afternoon I had a DCS meeting about the boys. I didn't tell him I had this. he started calling me and I just turned my phone off....when I got out of the meeting he had left me a voice mail that said " well I know where you are and what you are doing. pull your panties up and come on home" I was so mad at him. if you've read my previous post he has accused me of cheating on him SO MANY TIMES. he says I sneak out of the house at night and cheat on him. he is so obsessed with this. well I didn't call him back. I went to the grocery store and he kept calling...I just ignored him...well when I got home he started in on where I'd been....well I'm just stubborn enough that I told him it was none of his business after the voice mail he left me, nothing I say would make a difference. I told him how much I hated him and what he was doing to me. I know people who read this probably won't understand but I can't help it. this is just where I am right now...we ate supper in silence and then I went downstairs to watch tv with the boys and he stayed upstairs.

I understand. Just a little worried about you. I have not had to deal with the kind of thing you are experiancing, but I have heard of the jealousy and accusing (cheating) delusions. My husbands HD uncle was into that, his 4 th wife finally left him. He was diagnosed shortly after thar. Not sure I would feel any different than you! I hope the Dr can help you sort it all out. I just think there has got to be a change in meds that can help. Sorry again you are going through all this!

Vicky,
I worry about myself....but what I don't understand is how he can still hold down his job and maintain a working relationship and treat those he works with ok, and his family ok, my family ok...and even our son....but when he walks thru the door, me, Dalton, and Christian are always his targets. I know it's the disease but how can he control himself around everyone else and treat me and the boys worse than pure dogs and talk to us like were nothing? We still haven't really talked since last Sunday....he has did a lot of other mean things since then...like saying what he did while I was at the DCS meeting...Fri. night I thought, me and Christian will sit downstairs and try to watch tv with him....a commercial came on and Christian made a comment. Donnie thought he was talking about him and jumped all over him....I said Donnie he wasent even talking about you....then he started acting like a jerk knowing me and Christian wanted to watch a particular show, and he kept changing the channels so we just went upstairs.

Just part of this wacky gene defect, girl. I know what you are talking about with everyone seeing a different side than he shows you at home. It will eventually spill over into his other relationships and ability to work, but for now you are certainly getting the brunt. Not sure why it works that way, but I noticed the same thing early on. I think you are doing the right thing by just finding another place to go when he gets going, just don't let it rattle you when he starts to pick a fight, just ignore him. Your side of the story will NEVER make sense to him, just as his doesn't to you!!! As illogical as his rants are, (you cheating...etc) that's how illogical your responses are to him. Which is very frustrating, I know. Hang in there and know we are praying for your family.

Vicky

Dear Vicky,
Thank you for all your encouragement....as awful as week before last was, pure hell, this past week was wonderful. We went to the dr on Tues and I told the dr all my concerns and all that he had been doing and he said Donnie was rapidly getting worse and increased one of his medacines and gave him something for the headaches. the week went so good. Donnie actually seemed to be his old, loving self. He was the guy that I fell in love with. Then Saturday came....I could tell all day he was showing some signs of fixing to have an episode but they were so mild that I was just hopeing and praying he wouldn't. He laid down in the bed in the basement and took a nap. I was laying on the couch. Dalton came thru going to his room and touched my arm trying to scare me, and Donnie jumped up out of bed and said " Did he grab you?
Well that was it...from that point on he has been so moody and angry and just trying to pick a fight with all of us. I have tried talking him down but when they are in this frame of mind you cant reason with them. Sunday has been no better. He's been mad and withdrawn all day. he has slurred me and the boys all day. I am sooo sad cause I know the man I love is in there somewhere.
Liz

Such a confusing roller coaster! Walking on eggshells, never knowing when HD is going to rear it's ugly head. We have really had a
breakthrough with the change of meds and things have calmed down considerably at my house. I realize that could change, but for now the good are outnumbering the bad, and I am thankful for that. Hopefully the new meds will allow him to be more of the guy you (AND HE) want to remember fondly someday. Just hang on to the great times and be responsive in those times, even if the crap he just spewed is still on your mind and you'd rather punch him! Thinking of you and hopeing for a better week with more good days than bad!
Vicky

Vicky

Dear pioneer,
everytime I see someone new come on here I am very sad. sad that yet someone else is having to go thru this. It is Wednesday night and NOTHING HAS CHANGED. he had a pretty big episode last night to where he got mad cause Dalton was trying to fix the dish tv and Donnie thought he had torn it up. he ranted and raved half the night. finally Dalton got everything working again. he has been mad and trying his best to pick a fight about everything. He is so mean in the way he talks to us and the way he treats us. I thought increasing his medicine would help but I think it's made him worse...I may call the dr about it tomorrow. I am soooo sick to death of all of this.
What is your story? please share. it helps.
Liz

David ,
Your post is very confusing....this site is for HD patients and their caregivers....please don't respond to any more of my post if you are just trying to sell medacine.
Thank You,
Liz