I sat my hubby down today and asked him how much he is here and how much he feels he is not here (in reality), no matter what questions I ask him lately it is the same answer "I don't know" I really don't know who I am dealing with??????
He has got me talked into waiting the 2 years until the land is paid off, that is what I agreed to but BUT... I will keep my eyes open to what I see going on and start the process of getting rid of stuff so when the time comes it will really be easy to move. I don't know how fast he will progress in the HD so I have to be on my toes and take charge.
The other day I said I was in a depression, Fibro causes that once in a while, I pulled myself out and decided to look to the future so I have been looking at Pics online of homes in the areas I want to move, what are the costs and types of homes, I need to save a lot more money too.
Thank You everyone for all the input, I am really putting this all in my head and trying to be a smarter person, I sure hope I can help someone else down the line by all the experience I have gone thru and will go thru.
I feel so much compassion for all of you going thru this ! God be with us all and especially the HD person !!!

My hubby was off today, off as in not right, he was slow, not really paying attention, kind of here and kind of not here?

Not only was my hubby off today (slow, just not right) but he is also saying he feels like he is getting a cold, worries me.

Jen, sorry it took me so long to get back to you I am still learning to navigate this forum. Yes I would like to communicate with you , even daily on your HD hubby, we just spent 2 days at the VA center in Albuquerque, lots of appts for him, he just updated his walker to one with hand breaks and a seat. I am really upset because all the dr's we have seen they are not completely honest with us, they say things like "well we will just have to play it by ear" or some shit like that, excuse my vocal attitude but this is really taking a toll on me and I have no way to take a break. I Have Fibro and by the time we got back yesturday I was in a full blown Fibro attack, it is a 3 hr drive there and 3 hrs back, stay in a hotel and appt all day, did not have time to eat all day only drank water, so it is very hard to take care of the hubby when I am this way. I suppose you know I have been seeking advice about moving to where there is family so I can get some help, he does not want to move, we talked to a doc yesturday and she just said "do what you feel you need to do" absolutely no help!!
Here is my email address, we can talk that way if it is ok? marlyssa.neal@yahoo.com

Wow it really is amazing how similiar some stories are. My boyfriend has very unusual sleep paterns and becomes irrate when I wake him - even when he has told me to wake him for a particular event. He is up late - 3 4 5 in the morning then sleep till noon or 1. He also naps again while I am at work. I am the one who never sleeps. I work 8 - 5. It is very exhausting.

if you able to affort it move closer to family, you are going to need them to help you out, I do know how you feel, my husband was like that for a while then I try to ignore him when he was mad, as soon as he get off in the morning he will tell me I am not hungry dont cook anything for me he know I have to go to work and he was mad because I was going to leave him with my mother but I started to cooked him breakfast anyway and he will go seat and said thanks for breakfast so little by little I have been learning to have pacient with him believe is not easy I have a fifteen year old home still staring highschool but so far we manage, you need not to take everything they said so serious you will get crazy, he will be mad with me for a minute then act like nothing happend, but dont let him keep you away of your family even he said he is not going trust me he will go he just want to complain, do not let him take any decisions on what to do yes they are sick but sometimes they are like little kids just trying to get they're way.

It has been really weird the last few days, my HD hubby has been slurring his words and doesn't do anything but walk from one room to the other and stay there for a while, he has been very short tempered with me also. Today his adult son called him, I listened to the entire conversation, he never slurred his words once and and seemed to be very bright, not forgetting words like he does with me. Sometimes I feel he is playing me and sometimes I think the HD has control of him. I am so confused!! The biggest problem I have with all this is he is bringing me down real hard because I have to be on pins and needles all the time, not sure how he is going to take even the slightest thing I say.

Marlyssa

Marlyssa,

I think what you are seeing is the ability to control his speech and other symptoms on a temporary basis, he is just comfortable with you and does not have to "be on" all the time when he's with you. It's part of the denial and them not being able or wanting the symptoms/progression to show.
I also think it takes tremendous effort on their part to do this and after awhile it won't be possible for him to do.
My sons are able to shore themselves up in front of others, for short periods, but after the fact they may have a tantrum or outburst, or incredible fatigue. ( sort of like a toddler who is overly tired. ) Meaning no disrespect to Phd's but the analogy is fitting.
This is often the reason that doctors and outsiders do not "get" what we are going through. Caregivers have an up close and personal view of HD and the toll it takes on our families.
Hang in there.

Take care,

Carla

Carla, I have Huntington's and you are spot on with your explanation. This is exactly how it is for people with HD.

Margie

Well he says he and I are quitting smoking on the 1st of October...woohoo yet frightening, afraid he will freak out on me, feel we should be apart for a few days to detox but there is no one to stay with him so guess I have to be strong to quit myself and strong for him. ALSO...I think he has decided we are moving to a bigger town and closer to my daughter so she can help. Well at least thats the word today, tomorrow he may say something different?

Here I am up at 3 am, can't sleep because I fell asleep twice today for about 3 hours each time (it's my fibro) I have had several days now of extreme pain in my neck and upper back so I take something to help me feel better, the house work doesn't get done and what ever I am suppose to do has to wait. So I get up and find my HD hubby playing on the computer, obsessed with the casinos, I told him my mind is so full right now I can't sleep thinking about the move and buying a new house...his reply to me was so rude and unexpected I had to ask him to repeat it. When he did repeat, it was not the same as what he first said, he told me in few words how can he get me a new house when I don't take care of this one. I got so upset, thinking he understands when my fibro hits me that I am out of commission. I said a few choice words to him and walked out of the room. I sat in the next room and listened as he repeated to himself over and over again only the things I said to him as if that was all that happened. He has always been this way to me so it is hard to say it is the HD or not, just celebrated 12 years married 2 days ago, if he has had this Hd all this time then I see why he is so mean but if the HD causes him to have an excuse to be mean I don't know what to do. Anyone want to chime in here with an experience, I live to hear what you people tell me. Thanks

I feel your pain. I was taking care of my mom who had HD at my home, and I was also caring for a 3 month infant. My mother, once a very loving, altruistic woman said to me, looking right in my eyes "I keep seeing your baby DIE". Oh my Lord, the pain, how monstrous? I was already worried about being at risk, and my baby being at risk and to hear that was a knife in the heart. The only thing that got me through, is reminding myself, it is THE ILLNESS speaking. Anger and agressiveness may be better managed with medications. I contacted the doctor and reported the symptoms before we went to the next appointment and after a med change, she was calmer. Please stay strong, believe in yourself. You need to develop a shield to the words and trust me, I KNOW how hard it is. I'm an emotional Libra. I recently went for the gentetic test and my sister, before I went to get tested, said "If you have it, I will take care of your daughter, but I can't take care of YOU. I'll make sure you are well cared for though"... GREAT! Thanks sis! My brother told me I was a complete slob and my house is disgusting and I heard of him referring to me as a whore. Thanks brother!! These 2 are still at risk and I can't tell if they have HD or are just mean?! Truth is we can never be certain how much is personality and how much is the disease. I have just gotten my test back and it is negative. That is a relief, but the meanness around me is horrific. Make sure you take care of yourself Marlyssa. This is a very hard position we are in here. Make sure you keep believing in yourself. When you have trouble doing that reach out and you have support. Many people do understand!

Hi Marlyssa. I'm new to this site also. My husband has HD. He too would be mean and selfish. He is on 2 medications. One for Depression called Venlafaxine HCL 75mg. The other is Epival 250mg. I find the Epival has helped soooo much! He is not so selfish or paranoid. Much easier to deal with mentally!
My advice to you is..... MOVE AS SOON AS POSSIBLE to your family!!!! Put an add in the papper for help. Ask ladies at the grocery store if they know of any teenagers that would help you move. Without family, friends and a support system, you are going to end up in a mental state that will not allow you to take care of yourself or him! You need to be strong and tell him you are moving!! Give him all the positive reasons why and eventually tell him YOU just can't do it all alone. (And don't forget to remind him that marraige is a two way street!! YOUR FEELINGS MATTER!)
I will be thinking about you. Take a deep breath and tell yourself, that you can do this! It will be one of the best moves you can make! Good luck and keep us posted!

Hi Marlyssa.
I'm new to this site also. My husband has HD. He too would be mean and selfish. He is on 2 medications. One for Depression called Venlafaxine HCL 75mg. The other is Epival 250mg. I find the Epival has helped soooo much! He is not so selfish or paranoid. Much easier to deal with mentally!
My advice to you is..... MOVE AS SOON AS POSSIBLE to your family!!!! Put an add in the papper for help. Ask ladies at the grocery store if they know of any teenagers that would help you move. Without family, friends and a support system, you are going to end up in a mental state that will not allow you to take care of yourself or him! You need to be strong and tell him you are moving!! Give him all the positive reasons why and eventually tell him YOU just can't do it all alone. (And don't forget to remind him that marraige is a two way street!! YOUR FEELINGS MATTER!)
I will be thinking about you. Take a deep breath and tell yourself, that you can do this! It will be one of the best moves you can make! Good luck and keep us posted!

A great website...
[www.stanford.edu]

My hubby is about to start Zenazene (don't know if I spelled it correctly) does anyone know a person with HD who has used this med? It is suppose to slow down the jiggles. There can be a lot of side effects so I need to hear from someone please.

This HD thing is so awful !!!! Today I had to drive 70 miles to a dentist to get a root canal, had to take my HD hubby with me, the root canal was easy compared to taking him to Home Depot after.
He uses the elec cart so he doean't fall but this time he kept crashing into things, if I tried to help him he would get angry at me and say mean things to me as if I had done something that caused him to crash into things. How can I take him places anymore?
I don't know how to stop being frustrated with him, it seems our world runs better if we don't go anyplace but then I go stirr crazy!!!!
He now has a nurse come to the house once a week to check on him and a therapist will come one time to see if he need them to come more.
Tomorrow a person will come to our house to talk to us about home care, not sure exactly what that is but he told me I better clean the house real well because the person will look at everything.
My doc sent me to phy therapy because I could not raise my right arm, at the therapy the therapist told me I was in a bad stress place and gave me lots of exercises to do, I had stressed so much that the muscles at my shoulder socket were spaziming ( I don't know how to spell that ) and he would not work on my sore neck, he said we have to work on it slowly because I was under too much stress.
I guess I am not handling this HD well, no support at all.
Moving closer to family is out of the question at this time, he put his foot down that he was not going anyplace.
I am seriously thinking about going outside and yelling profanity maybe that will help?
Na I am just going to continue to pretend I am ok because it is all about him.
Sorry I went on and on but this feels good to at least get it out to someone.
Thanks, Marlyssa

WOW, I can't believe I am still thinking and breathing today.
Yesterday was a very bad day, we fought all day until I threw a fit and kicked a empty plant pot and slammed a door. I just got to the point that I couldn't take it anymore.
He is so manipulative and a rebel that we can't even fight like a normal couple, I say it is blue and he says it is not even there, what? all our conversations end up the same way...what did he say? what did he mean by that? I am always so confused, I am tired of the snide remarks and the insults.
Then because I kicked the plant pot he said he is afraid of me that I will hurt him...what? again?
There have been plenty of people coming to our house to check on him, a nurse a social worker, a phy therapist, telling me to move this furniture and get a shower instead of a tub, like I have money or something? Today a phy therapist said she will call me tomorrow but she thinks he is so depressed that he may have to go to a home for a while to get straightened out. I really don't want that but again I also don't want him to hurt himself.
I am finding I am not enough by myself to take care of him, of course he says I am his wife I should be able to do all the things for him that he needs.
I just had a root canal a couple days ago and 2 teeth broke last night, I am in pain but yup I should be able to do everything, can you see my cape it says wonder woman!!!!!

It has only been s few days since I have written on this forum, as of today I can't cry enough, I am so frustrated with this disease!!!
Today I actually was able to talk person to person (on the phone) to someone who has dealt directly with HD, we prob talked for at least an hour.
She told me something that I just didn't get anyplace else.
I have been freeking out because I could not get my HD hubby to understand me, something I was going through about HD, what she told me was he does not know what he is doing, and he needed me to be wrong not him no matter what it is.
I listen to everything I am told about HD but I just could not wrap my head around to the fact that my hubby is not there.
The person I am married to is not there anymore, the person I am married to now is HD!!!!! WOW what a kick in the head but true.
There is no getting through to him, no discussing a matter, it is always an arguement and as soon as I show I have been hurt by something he said, it is like he won and walkes away with a bit of a smile.
I am dealing with a child, with a full grown adult size child. I was trying to be his wife, NO WAY!! I am his caregiver and only his caregiver now.
I am trying to get this to sink in, I am really trying. I am not going to do anything behind his back, I will stay loyal to our vows!
In the meantime I am also going to get a life instead of just staying here 24/7 inside the house with him.
Tune in next time I put fingers to keys on this forum and see if I can keep up with it, wish me luck!!
Thank You Everyone

I have not been on here since Nov 5th, last month...thought things were going ok then shit hit the fan this last 2 weeks. The only time we get along is when he is in a depression (weird right?)
He is now a awful person again, if I have to leave the house for what ever the reason it is like I am being timed, why did you take so long? who were you with? I bet you were doing...bla bla bla. If I don't come right back then he says I am not thinking about him.
He never wants to eat with me, if I ask him if he would like to eat he says no and then when I am away from the kitchen he goes in and fixes himself something to eat.
Right now I am in a constant state of frazzle, I just can't take this anymore, it is worse than I can put in words.
He now has nurses come to the house once a week and a PT 2 times a week, I won't even participate when they come because all he does is belittle me in front of them, how bad of a wife I am etc. etc. shows them if I havn't dusted etc.
I hear it gets worse, how can it? if it does I don't think I will make it, (I will make but I don't know how).