my story is so similar to all the other stories on here. My husband of almost 23 years was diagnosed in August. He is 43. his grandpa died in his 60's his dad in his 50's. It is hard to pinpoint when Donnie's symptoms started. If I look back there was always some anger issues but he has always been madly in love with me. there was always some jealousy issues but I thought it was just a normal husband. He has had a twitch in his hands and feet for years but I thought, it was just nerves. I guess when it really was noticeable was 2 1/2 years ago he was fired from working in the log woods cause his boss said he had become very clumsy and didn't have the reaction time he needed and he would just do stuff that was really dangerous that he knew better. He seemed to get worse but it was so slow that it became normal everyday until this year. He began in the summer to have just extreme sudden outburst of anger and would scream and yell and throw the biggest fits. it was very out of character for him. he became very aggressive and argumentive on a daily basis. he began accusing me of cheating on him to an extreme everyday. we would fight for days about it. Finally in July I couldn't take anymore. He was constantly yelling at me and putting me down and I told him if he didn't get some help I was leaving him. I made him an appt. and after talking to the neurologist we were sure he had this disease. they did an cat scan and the genetic blood work. they also put him on siriquil and zolaft and a sleeping pill. he has an extremely restlessness night of sleep every night. they have increased his med. 3 times already. It has helped some but he still has very bad days and sometimes he will stay mad for days at me. The dr said he felt like Donnie was "well into the middle stages" WHAT DOES THAT MEAN??? how can you tell how long someone will stay in a stage? what does the cag count have to do with it? if it is higher does that mean he will progress faster? How can you tell? He is still working and driving but somedays I really don't know how he makes it thru the day. Any help and response would be greatly appreciated.

Early Stage
In the early stages of HD, people see subtle changes in mood, movement, and cognition. The person with HD may still be able to drive and hold down their job, but might require a little extra help throughout the process.

Mid Stage
During this stage, people with HD will lose the ability to work, drive, and need help performing Activities of Daily Living. This is the stage that people tend to apply for disability. The movement disorder will lead to difficulties with balance, swallowing, and voluntary motor tasks. Individuals will have increased difficulty organizing and prioritizing information. The behavioral symptoms will affect everyone differently, but irritability, aggression, depression, and apathy at this stage can lead to personal and family issues, as well as involvement by Law Enforcement.


Late Stage
In the late stage of Huntington’s disease, people require help in all Activities of Daily Living. During this time, the person with HD may lose the ability to speak and respond, but is still able to comprehend what is happening around them. Chorea can be severe or may be replaced by other movement symptoms, including rigidity, dystonia, and bradykinesia. During this stage, many people enter into a Long Term Care facility, which can provide 24/7 care.

I have been told that the higher the CAG, the earlier the onset, and more severe the symptoms, however, my husband is 58 and we believe him to be in Mid stage from the above descriptions. I am finding more and more each person is like a snowflake and anything goes with this sucker called HD.
So sorry for ALL of us on this forum-patients and those who love them.

Like you, looking back the onset started way before we knew what a wrecking ball this little gene had planned for us. I had never heard much about HD and when his mother was diagnosed in her 70s, we didn't really think all that much about it. She was still driving, living independently, traveling, and seemed just a bit clumsy. She has a CAG of 41 and her brother has a 41. He has a lot of the dementia/behavior issues and is estranged from his entire family after years of abuse and continued verbal assaults. No one really thought that was coming from HD as his sister did not have those issues.

We are certainly all in this together and I hope you find this forum a good resource as well as support for yourself. You are not alone and I have found a lot of strength in this group, there is nothing you CAN"T talk about here.
Vicky

thank you so much VRE. Your input has really cleared up alot of questions that I have. He does still drive and hold down his job but somedays I wonder how much longer that will last. He gets so tired really easily and seems to be worse when he is tired. He has sevier headaches to where he just has to spend the day in bed. He has not applied for dissibility yet. He does have terrible balance and his voluntary motor skills are soooo off. He cannot organize or prioritize anything. He gets so agressive and irritable. He is depressed alot of the time. We have lots of personal and family issues due to his anger and paranoid behavior.
How old was your husband when he was diagnosed?
Is there anyway of telling how long a stage will last?
Liz

We were just diagnosed this July, he is 58. Once he was diagnosed, his onset happened like a freight train. The severe anxiety, chorea, panic. We were dealing with behavior and mood swings already, which is what led to getting tested when we did. I am not sure how long each stage can go, none of the Drs. really want to answer that question. He has asked them all! We had an MRI a few years back to check something else, and the neurologist can see damage to the brain on that one, so may need another one to see if any big changes have occurred. That may predict how long we are in this stage, but again, the Drs. don't like to speculate on that. At least the ones we have seen.
Vicky

that is kindof the way Donnie has been this year. He was very symtomatic for the past 2 1/2 years but he has snowballed this year. We also had an MRI and the test showed alot of "brain volume loss" that may be how his dr. diagnosed his stage being " well into the middle stages" is what he said. Does your husband have headaches? does he have problems sleeping? not going to sleep cause donnie is on 2 sleeping pills but he is sooo restless. he kicks and fights, tosses and turns all night long. His grandmother was diagnosed 3 weeks ago with cancer. they only gave her a few weeks to live. He is very close to her and he has been over her house every night. I can tell his symptoms have been worse during this time. he said he doesn't know what her passing will do to him and I am afraid it will also make him spiral even more. Thank you for responding back to me. It has really helped talking to you.
Do you have any children?
Liz

I have 3 step sons and one grandchild at risk. None tested at this point. Actually my husband used to have bad migraines, but that has gotten better for the first time in as long as I can remember. The onset can be "brought on" by a traumatic event, so I am not sure what happens if his grandmother passes, and he has already been through the "onset". My husband is on a host of meds, and he takes 2 valium type pills at bedtime, but the don't help that much with sleep-so he's up most of the night and tries to sleep in spurts during the day and early morning. He almost has a euphoria right now. He's coming up with all these ideas for projects. We are in Texas. Are you in the US?
Vicky

I have 3 step sons and one grandchild at risk. None tested at this point. Actually my husband used to have bad migraines, but that has gotten better for the first time in as long as I can remember. The onset can be "brought on" by a traumatic event, so I am not sure what happens if his grandmother passes, and he has already been through the "onset". My husband is on a host of meds, and he takes 2 valium type pills at bedtime, but the don't help that much with sleep-so he's up most of the night and tries to sleep in spurts during the day and early morning. He almost has a euphoria right now. He's coming up with all these ideas for projects. We are in Texas. Are you in the US?
Vicky

yes. we live in Tennessee. Bad, Bad night last night. We have one son who is 21. He is in complete denial about his dad and gets mad at me if I say anything about it. We became foster parents 2 years ago and we have 2 boys. they are 11 and 16. my 16 yr old had a small wreck last night while we were out of town. he was not suppose to be out driving. He was not hurt. he just hit a road sign. messed up the left front end of the car. well Donnie went ballistic. Said things that you can only imagine to him. then ultimately made the dcs worker come get him last night. both boys have been with us for over a year and they are great kids. they are my kids. they are family. I love them just like I do my own. I was devastated. I have begged and cried for him to just calm down and for us to get thru this, but as you know, when they get in that mind frame there is no talking to them. I am hopeing that with a couple of days he will calm down. Please pray for this situation but I know it is only one of many to come. the boys are very understanding of donnies condition. especially the 16 yr old. he lived with his grandparents and his grandpa had sevier dementia before he died.
does your husband still work? do you stay with him?
Liz

No, husband is on long term disability from work. (thanks God for that) He has not worked since shortly after his diagnosis. I have been trying to keep my job until he loses his driving or needs full time care. He is at the point where they have recommended driving secession, so he has home health therapy coming to the house. I am probably close to not being able to keep my fulltime job. I am trying though. They are very understanding as I have worked here for 25 years. Financially we are probably in much better shape than most people I have heard about. He has always handled the finances and we made most financial decisions together, however, I am getting more and more concerned about having to take all that over. It is something he has been very good at, and that's why we are in pretty good shape, however he is now talking about buying things we certainly don't need. He is on the internet constantly and I am going to have to tell him his least favorite word these days, which is NO. I know it will be a fight and I will be the bad guy again, but he thinks he is making perfectly sound decisions and that I am the one who doesn't get it...
I am so sorry about your situation, I know you must feel so helpless. We all really are to some extent, but you have to be so conflicted about what to do. I lifted you guys in prayer this morning and will continue to do that. You are faced with some very tough choices for yourself, Donnie and your children. This stupid little gene causes a tornado of devastation and we are just the collateral damage. The +HD person has so many challenges with no possible escape and lose everything little by little. We end up losing it all in one swoop, really. Just devastating. I am so sorry that your son is in denial and your fosters are not going to get what they need most. A father who can guide them through little things like wrecks and other day to day things. You working or staying home?
Vicky

Vicky, it's funny how every time I read one of your posts, I feel like I'm reading my story too. My husband of 26 years is no longer working, but I'm able to still work. He sleeps late every day and I go into work very early, so he is only alone for a few hours each day. My company has been tremendous in allowing me to take the time I need to take him to therapy and dr appts. I've been with the company for 17 years so they've been letting me telecommute two days a week.

I did learn a very hard lesson financially. He was quite manic for awhile spending money on things we did not need or want. He bought a ping pong table, two very expensive bicycles, a new car, bowling balls, 3-4 DVD movies a week, etc... We also had two kids in college at the time and the debt escalated out of control. I will be paying off those bills for years to come. He would not give up his checkbook or credit card, and since he was still driving, he thought he had free reign to spend whatever he wanted. It was a blessing when he could no longer drive, although for a year or so afterwards we had to hide the car keys. When he found them he would take off to the stores. I had to hide my wallet as well because he would grab whatever cash I had on hand.

Earlier this year we had a crisis where he attacked me physically while trying to get the car keys and money out of my wallet, and I wouldn't let him. The doctor added Seroquel and Risperidone, and also upped his dose of Klonipin he takes at night to sleep. It made a huge difference. He is more sedated now, but it beats the manic, aggressive man here before.

Liz, if there's a way to get your husband to see a doctor for psych meds. It changed the way my husband treated the kids. He is still demanding and wants his needs met immediately, but he no longer yells, nor is he verbally or physically abusive. Not sure how long this will last, but I keep praying that it will.

@ DJcloc: The first Neurologist gave my husband an RX for Serequel and he read stuff on the internet and decided she must have written that by mistake, so he refused to take it. He's on Lexipro, Klonopin and Xenazine (the major ones) and says he feels better and that since it isn't about me, it's about him, he won't even listen to me when I say he has become more combative since taking that. I really hate to talk to his Dr. because then I get in trouble for days at home. I have yet to go behind his back, so I just tell it like it is in front of him and then he gets very upset with me. Prior to this disease, he was the NICEST, well mannered, soft spoken, logical, practical man and that is what I really loved so much about him. I don't even know this guy and I can not stop crying about how much he has changed. If a Dr. or therapist says one thing that he doesn't like, it's off to the next one and he just bad mouths them to everyone. He cc's EVERYONE with emails all day sometimes up to 10 a day. Most people aren't even reading them anymore and just depend on me to keep them up on how he is doing.
I have been praying for God to give me the strength to make decisions about how to shut him down with the spending and such, I so hate to do that to him and not sure how we can recover from what will be yet another battle of how horrible I am... I really want to be positive and helpful, but doesn't seem to matter what I say or do, he just spins it and I am again the negative person trying to gain attention from his illness...
Vicky

Vicky

I'm so sorry that you are having to go through this. If I was there, I would give you the biggest hug. My husband did not do well on Xenazine. It helped his chorea but caused so many other symptoms, it was not worth it. He was only taking the meds because he was hoping to keep working. After an accident at work, they told him he could not return until he had a driving test to prove he could still drive. He failed the test and was put on medical leave. He was one unhappy person for a long time and he made life miserable for all of us. He wasn't sleeping well at night and would wake me up several times to rant and rave about one thing or another. I had to be at work at 5:30 am and it was very difficult some times to just get through the day. When the doctor put him on Risperidone, it calmed the chorea as well as calming him down.
I will be praying that God gives you the grace and strength to get through this.
Donna

Thank you so much for the prayers! And the virtual hug! I'd hug you back for sure! You have been in my shoes and you know exactly what we are going through and I am so thankful that you guys share and allow me to share here! This format allows us to say the ugly truth as we live it, the things other people just can't possibly understand and the things that sound so callous to say out loud! I just feel so bad for the people with this disease. I know that God will provide what we need to get through this. I am just so depressed to think about how this just rolls through a family. So heart breaking!! Sorry I seem to be such a bummer, but I feel very free to share this here without judgement...
Vicky

it helps so much to read everyone's post. We have made it thru an extremely bad night last night (in on of my previous post) today has not been much better. Donnie made my 16 yr old leave last night and go to his grandmas. I have cried and pleaded with him all day to let him come home. he finally told me I could go get him tomorrow if I wanted to. I want to, but I want things to change In this house!!! I am so flusterated tonight. I just want to go out side and scream as loud as I can. I tried talking to him tonight about his behavior and he was extremely understanding and loving at first then as the conversation continued, he decided he would just put us all out of our misery and he would leave this weekend. he was gonna drive to the mountains and never come back. that way we wouldn't have to deal with him. his legs and arms are moving more. He has been over his grandmothers all afternoon. they have stopped the patch and started the drip so the end is so close. I am scared to death as to what an affect this is gonna have on him.
to make mattes worse, my family, who I thought loved my foster son, is telling me I need to just let him go live somewhere else that Donnie didn't need to have to deal with this in his condition. HE IS MY CHILD I don't want him to go. this is his home and has been for a year and a half.
Liz

Bless your heart. How difficult this must be for you. I know you are torn and hurt. Do what you need to do. This sucker (HD) has no regard for your feelings or circumstance. It just takes over your life, changes your loyalties, security, finances, your "spare" time, your children, your friends, family, sanity, peace. Guess you could tell, I am a bit bitter...lol

@Donna-Girl, thank you for your sweet message and I would surely hug you back! You have been in my shoes, walked the walk! I am so thankful for this forum where we can just let our humaness hang out. We don't have to clean it up or make it something it isn't. We are able to share and be shared with here. Able to say the ugly truth we are living and gain support from people who have seen it all, are currently going through this, and those who have come out on the other side. There are so many things on this site that we can't or don't want to share with our friends and families and so we create a family here where we are safe.


Liz you are safe here! Please keep us updated and SCREAM all you need to!

Vicky

Vicky,
Thank you so much. I think you should write a book or do siminars or something. You are so wise. Donnie has decided that I can bring him home this afternoon when I get off work. He doesn't really seem thrilled with it but he just needs to be home. Donnie's personallity has changed in the most drastic way. He used to be so easy going, loving, gentle, person in the world. he never got upset or it took a whole lot for him to be. he was always so dependant on me, I have always done everything and mad every decision. He wouldnt ever buy anything or take care of any of the bills. I always had to handle that and he was fine with it. now he says things like " if you don't like it, you can leave." he would have NEVER said anything like that to me before. He bought a truck one day. just random. and he came to the bank where I work and said " I bought a truck, get the money. " you can't imagine how I was floored. In 22 years he wouldn't even decide where we were gonna eat out at much less BUY A TRUCK!!! now hes talking about getting in the truck this weekend and driving to the mts and liviing in the woods till he dies. He would not even drive 30 miles out of the town we live in by himself before. I always had to be with him. the mts are 6 hrs away. Do you think he really might do that? they changed his grandma from the morphine patch to the drip last night, so I know it is just a matter of hrs. I don't know what to expect from him but I will deal with it.
Thank you for being my shoulder to cry on.
Liz

I am fairly new to this forum and must say that it has been a wealth of information. It has actually been nice to find a place that does not sugar coat the realities of HD......it's bitter sweet. My first post was only about 5 weeks ago and I was nervous to openly express what my husband was doing to our family. I was so pleased to see responses of understanding and even some great suggestions.

Here is one thing I have learned when it comes to HD........there is NO path, there are NO directions and there is NO timeline.

Specific to your family and their advise about your foster child, don't take it personal. Those not living with HD or caring for someone with HD, will NOT understand. YOU see HD, live with HD and understand HD.......they don't. The first thing that comes to your mind when your husband's anger is triggered is "this is not my husband....this is HD". Others will never see HD first. When family, friends, co-workers and doctors listen to our struggles, it is their nature to try and help us by giving us their advise, but they don't see HD. When given advise, I often find myself thinking "if my husband did not have HD.....would their advise make more sense?".....it's my way of relating to them, so my feelings don't get hurt. For example, my husband is verbally and can be physically abusive. I am often told that I should leave him and/or divorce him by others. The reality is that if he did NOT have HD, I would do exactly that and in that respect, their advise would be sound and well received. Your family is trying to help and it is not their fault they do not understand, so try not allow it to upset you or affect your relationship with them. I now tell my friends and family that I really just need them to "listen" to me sometimes. I asked them to not judge me or my decisions. I remind them that if my husband had cancer or any other awful disease, they would never suggest that I leave or suggest that my children go live elsewhere (in my case, my ex-husband is trying to gain custody of my children).

Personally, I knew nothing about the disease prior to the diagnosis. I started to read everything I could to find understanding. I needed to know what I was up against. I read and read and read........I searched for answers.......I searched for a cure........I search for understanding......I never found what I was looking for because it does not exist. HD is an individual experience for each of us. While many in the HD community share similar experiences and can relate, we all take it day by day and live on HOPE and faith. For me, I live day by day, with the facts that I know to be true.........I know I love my husband with all my heart. I know that I love my children with all my heart. I know that I have to take each day for what it is because while all of our days are numbered.....I know his are.

I wish you all the best and my thoughts are with you.

Sonny, what you say is so true. When my family see's me waiting on my husband, i.e. dishing up and carrying his plate and beverage to the table, or ordering for him at a restaurant, doing all the household chores, etc... they tell me I'm spoiling him and that they don't see why he can do these things for himself. They don't understand that if I don't do these things for him, he gets frustrated and agitated when he has difficulty doing it himself, or has spills. He forgets whether the dishes in the dishwasher are clean or dirty, and sometimes will try to put away dirty dishes. He insists on instructing me when I drive to go, stop, change lanes, speed up, pass. They don't understand that his brain is wired completely differently from any other disease they've encountered before, and it is constantly changing. What works to calm him down one day, may not work the next or two months down the road.
My son and I try to be as patient as possible, but we are only human and loose our cool every now and then when my husband's behavior overwhelms us. Every new situation causes us to pause to figure out the best way to respond, sometimes we are right, and other times we are way off the mark. I often look to this forum for similar experiences by others for solutions and how they were able to cope with it. It's going to be a long journey for us all, but we will get through this, and hopefully come out stronger and more compassionate people.

Sonny, you are so right on on many levels. It is so easy to SAY what we would or wouldn't do in a particular situation, but when faced with it you just have to live in the moment, step back and do what is most right for you. I too love my husband and can't imagine not honoring my commitment to him. I am very thankful for 22 years that could not have come closer to perfect.


Liz, I imagine you can co write that book with me in a couple of years! I certainly can't say he "wouldn't" make that drive to the mountains, but when he says things like that, I would just say I understand how you feel, I feel like that myself most days. And then move on to something completely different-something upbeat and positive. See what happens. You may just have to limit what you tell him about the kids. The more anxiety, the more movement and agitation. You are in a position where you have made all of the decisions, so you might be able to handle the stresses you used to share with him on your own. I am just learning all that now. Although we ALWAYS did everything together, my husband has always handled the finances and taxes and basically all of the major things. Seems a bit old fashioned, but that worked for us...until now. So I am having to give up being spoiled and put my big girl pants on and figure all this out. Praying things will smooth over for you when you bring your 16 year old home.
Vicky

Vicky