I am not at that place yet and I hope my hubbys HD doesn't take him there, God Bless you sweetie, this is a strange disease, do what you can for yourself, please !!by Marlyssa - Huntington's Disease Support Center
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.by Marlyssa - Huntington's Disease Support Center
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 hiby Marlyssa - Huntington's Disease Support Center
Robin, welcome. We are all here for you, no matter what you may be going through. Thank God you have a sister who does not test positive so that she can be there for you.by Marlyssa - Huntington's Disease Support Center
WOW...the letter is a little confusing but sounds like he doesn't want to see your boyfriend when he sees his son, (the boyfriend should not be any part of his visits) so I can see why he is upset. Sounds more like relationship problems times 2. If you feel he is not safe with the child bring a small video recorder and video tape him, I don't know if that is legal or not but it may be proof. Iby Marlyssa - Huntington's Disease Support Center
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 thby Marlyssa - Huntington's Disease Support Center
My hubby is a 100% disabled vet and on social security, we were just told the other day that his HD is not service related, I knew this but now wondering if we will lose any benefits. The VA is still working with him, speech, walker , pt, lets just see how far it goes. Take care and keep your head up, if you do Jesus is there for you even thru this awful HDby Marlyssa - Huntington's Disease Support Center
I think once you get tested everyone finds out...get the full time position (insurance) then worry about telling people. just my opinion. Sorry about the headaches, I wish I had an answer for you but I am sure someone will know the answer.by Marlyssa - Huntington's Disease Support Center
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. Sby Marlyssa - Huntington's Disease Support Center
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, thby Marlyssa - Huntington's Disease Support Center
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.by Marlyssa - Huntington's Disease Support Center
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?by Marlyssa - Huntington's Disease Support Center
bella: my hubby has been clean and sober for almost 30 years, I don't know if I read this or not but can a tramatic accident bring on the HD? He had a trama just about the time we got married, almost 12 years ago, he was great before we got married and the next year was hell. That is why it has been so hard for me to make sence out of this all, sometimes men change after the chase is over and tby Marlyssa - Huntington's Disease Support Center
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 sby Marlyssa - Huntington's Disease Support Center
Jen you have given me sound advice, the every day not knowing what to expect is so true !! I guess what I need to do is just suck it up and make things happen!?!? Do I have the strength? I don't know but I guess I don't have a choice if I want to stay somewhat sane, I have to move to where there is a support group. Honestly I am very afraid, afraid of what will go on in his mind and he blames itby Marlyssa - Huntington's Disease Support Center
PLEASE...I need some serious responces to this...As I have said I think we should move closer to family, where we live now there is no family in our state at all. We moved here because it is warm and dry, where we would move is Mississippi and that is not warm and dry. To move would be selling our house or renting it out and it would take a lot to move because I owned a store a couple years agoby Marlyssa - Huntington's Disease Support Center
Bluedaisy, I think it is the entire familys responsability to care for the family member as long as it is safe, maybe switching family menbers houses for a while? About the 5 yr old...she doesn't need to be put in that situation of fear or possible hurt and if she was to inherit the HD can you imagine the fear she would have knowing that she could be like your sister! God be with you my friendby Marlyssa - Huntington's Disease Support Center
ggrace...WOW...we just found out last month that my husband has HD but I can tell you I almost left him several times durring our 11 years married because of the verbal abuse. I let the verbal abuse get to me many times and it almost killed me, If I had not been married to him I would not have stayed. According to my hubby I slept with anyone who was male if they were on the street or in the storby Marlyssa - Huntington's Disease Support Center
OH Girl I feel so much for you at this time, so sorry. Try and take the paperwork from his doc saying that he has HD and also an explination of HD (mood swings etc.) to the police and get them to understand his problem, maybe they can stop him when they see him on the streets, knowing the situation maybe they will call you and you pick up the car (then you will have the keys) and they may take hby Marlyssa - Huntington's Disease Support Center
Ellenc, you want to know a back ground, I have one for you...My hubby has HD, diagnosed last month but has had symptoms could be for 10 years now. His mother is from Holland and his father is American Indian. From the reports about his father who I never met , he died a few years before my hubby and I met was what I understand a very angry, moody person who told weird stories, the children of myby Marlyssa - Huntington's Disease Support Center
Pat thanks for the advice, don't know when to take it away from him, now or soon,not sure so maybe I should start slow and we just do it together for now. I hope you have everything in order now.by Marlyssa - Huntington's Disease Support Center
I let my hubby go to the store in the car today by himself, that will not happen again. He came back ok but complained how tired he was and that he felt lost in the store. I gave him a small list of things to purchase and he said he lost the list, he also said he felt sick to his stomach, don't know if it was the heat outside or the challenge for him?by Marlyssa - Huntington's Disease Support Center
wow Jen thank you so much for showing me my feelings and the things he is going thru are not just in my mind but they are real. Keep your head up as well.by Marlyssa - Huntington's Disease Support Center
This is all so frightening for me as the wife and caregiver, I also have a severe case of Fibro and I have my bad days as well, on those days it is hard to be MISS SMILEY I get depressed and bow out for a bit, he says it is ok to have a bad day but I still have to stay on my toes. I just don't know what is next!! Marlyssaby Marlyssa - Huntington's Disease Support Center
I am starting to get nervous again, I can be on the computer and he comes out and if he sees me click the mouse then he says "wow you got out of that fast" as if I was doing something I didn't want him to see, I am so tired of being accused of wrongdoing. ALSO. I have no family around, just him and I, we are considering moving close to my family, his family thinks I am full of bull wheby Marlyssa - Huntington's Disease Support Center
How do I back off of the meanness, I guess it is HD and sometimes I say to myself why would MY HUSBAND, the one who is suppose to love ME be so cruel? The blaten lies? Sometimes I can back off and just say he is a child and I have to treat him like a child but on the other hand he still does all our finances and still does them well.Anyone who has gone thru this please help me to understand! Thby Marlyssa - Huntington's Disease Support Center
You say your husband has had HD for 12 years now? Please tell me how the progresson was and your timeline, my husband was just diagnosed with HD. Thanks Marlyssaby Marlyssa - Huntington's Disease Support Center
I feel so much relief to have so many people respond to me, thank you all for being there for me!! My husband will start a medication soon for the shaking, we are just waiting for it to arrive. I know I need to take breaks but my hubby doesn't think I need to go anyplace with out him, he won't go and see the grandkids or anyplace unless I go, I try to tell him there are places he can go with outby Marlyssa - Huntington's Disease Support Center
My husband was just diagnosed with HD a month ago, the doctors think he may have had it for around 8 years tho. We have only been married 12 years and the first few years of the marriage was horrible, he was so mean, calling me awful things and doing unexpected things. As I read about other peoples experiences with a loved one with HD I can now see he may have had HD before we were even married.by Marlyssa - Huntington's Disease Support Center
This topic was unexpecte,,, my hubby who has HD has been a BIG smoker almost all his life and now that he is dangerous with his cigs I was ready to make him stop. He loves his smokes but I find burn holes in and on everything, even in his bathroom 2 feet from his 02 canisters. He has been clean and sober almost 30 years now so to do any drinking is out of the question, I use e smokes and thoughby Marlyssa - Huntington's Disease Support Center