Hello.

I’m posting this blog because I am having a hard time finding information on this topic. Huntington’s Disease and its relationship to psychotic behavior. Possibly someone from this forum someone will be able to help.

My uncle (my aunts husband) has Huntington’s disease. He has not been tested, and refuses to be tested or talk about Huntington’s disease. His mother and his brother among other family members have passed away from this disease. He has said to my aunt that he knows he has the disease, and is showing all the signs of the disease, so we are all pretty sure he has Hungtion’s Disease.

From when I was a child, to this day, to be blunt, my uncle is absolutely psychotic and dangerous.

So my question is, is his behavior related to the Huntington’s disease, even before he showed signs of the disease, or knew he had the disease, he would act out. There are many times where he is ‘normal’ and I would say his real personality showed/shows, he can be sweet, and a very kind person. However, there are times very few and VERY far apart where things are ‘normal’. I just want to be clear, he is my uncle and I and all of my family loves him. I’m writing this to try to understand; I want to help him and everyone in my family would like to understand what is going on. Our relationship has nearly completely detiratted, not only mine but nearly everyone in our family can’t deal with some of his actions. So his behavior is the same as it was when he was in his 20’s, but now that he is in his 40’s his behavior is worse. To sum up his behavior, he is: violate physically and mentally, actually hitting people, choking them, calling them names, is paranoid, thinks up things that are completely untrue. Is this because of the Huntington’s disease, should he be help for his actions? Actions, which have been going on since he was 20. I myself and I know everyone in our family care, love him, want to understand and want to help him in any way we can. However, it is very hard to be around someone so completely irrational. If anyone has any advice please advise.

Is he on any medications? Sounds like he needs medical help, and then see if symptoms improve.

I am with Alice. There are medications that can help these type of behaviors. If you could get him to go a psychiatrist that would be
a good thing.

No. He's not on any medication. He refuses to talk about the disease, or take any medication.

Then I'd say his actions are probably HD and if he is a danger to himself or someone else, you can call the ambulance and police so the men in the white coats can come get him, put him in the hospital, and give him meds. Maybe after that he'll take his meds with warnings if he doesn't he could end up in the same place again. Just my thought.

We know that Huntington's Disease causes brain deterioration starting years before signs of chorea or something else that can easily register with a doctor.

We also know that the damage can manifest itself in multiple ways ranging from simply slow response to to psychotic behavior.

But the doctor shouldn't discount other causes. People can become psychotic, depressed, schizophrenic, or something else due to other reasons.

But sometimes it doesn't matter. We're forced to deal with the situation as it is and you have one of the worst case scenarios - an HD patient that doesn't want to deal with it.

In my situation I had to get the police out with the behavior turned violent. But fortunately the police were aware in advance of the disease situation and the patient was taken, admittedly against her will, to the hospital instead of jail. I don't know that I would have involved the police if I confident of the outcome in advance.

Some of the information I've read states that a full 20% of HD patients have some type of deep psychological issues. I find it very hard to believe based on the disease process that the number is that small.

Steve is right, it could be something else. But if he has HD, it really can't help.

The only way to get better is to get him to believe he needs to be better. That's the thing about HD, it does take away one's ability to make good decisions. Patients lose the "executive function" of being able to sort out all the facts and organize their thoughts, especially when the disease progresses.

If you can't convince him he needs help, then you are fighting a losing battle. The only way to get the ball rolling is to have the law help if there is some incident that may help you prove to him or others that in fact, he is a danger to himself or others. It will take some demonstrable act. If we could just walk up and tell someone that a person is crazy, and something needs to be done, I would have done that with my boss years ago LOL.

As a spouse to a husband with hd I can tell you that psychological issues in our home can be severe.
Your uncle needs medication. My husband would be in a locked facility if it wasn't for the medication. Don't get me wrong here, the medication doesn't "fix" the psychological issues but instead makes them managable.

My husbands family doesn't want to discuss hd either. Their moto is 'don't mention it or suggest it unless your back is to the wall'. His family came to visit him for the first time in 8 years. I knew they were coming so a week before the visit I made sure he went to bed on time, showered, took his meds on time and so on. He cussed me out everyday for not leaving him alone. When they came he was on his best behavior. A rare occurance for sure but they had a good visit.

Your Aunt needs to call the police when he threatens or hits. She needs to keep a journal of his angry outbursts and hopefully at some point he will be forced to get help.

After the police came to our home a few times I went and talked to the police chief. I gave him info regarding my husbands hd. Now when they come they know what they are dealing with and if he doesn't calm down they take him to the ER. I keep collecting the police reports and quietly hand them to his Dr. at every visit. The Dr. then knows to adjust meds accordingly.

The hardest issue is going to be to convince your Uncle to see a Dr. Since this doesn't seem likely then your Aunt needs to keep records until he is forced to seek help.

Is there a possibility you can make an appt with a dr or psy and tell him it is for you but you would like him to go for support. Then you could
possibly talk to the dr, his nurse or take a note prior to the appt explaining the situation. The dr could then suggest you both try something and
he wouldn't have to know you are not taking anything. Just an idea.

Well the last time the issue was brought up, he tried to commit suicide that very night so we are all terrified to bring up the topic again.
My main concern was if his behaviors were related to HD and I'm pretty comfortable now with the information everyone has shared. Thank you everyone!
I think this is an issue that we will have to let him control, and if things become to dangerous again or out of control we will have to take 'things into our own hands'

None of us really know what it's like for him, he have told him whenever he is ready for medicine, therapy or anything else we are here to help. And between now and then I pray things don't get out of control.

Thank you again, everyone.

The lovely catch 22. The person with HD (or any number of other neurological or mental conditions) often has impaired judgement, and is not the best one to make their own decisions. But loved ones must tread very lightly, and often can't figure out how to "force" the person to get the help they obviously need.

"Help" would likely improve things somewhat, though it's hard to say how much and it could still be a long process of trial & error to get the best combination of meds & any other therapies.

To answer your other question, yes, I've read (and experienced) that personality issues can start as long as 15-20yrs before more obvious HD symptoms. Or of course other personality issues could also be ON TOP of HD symptoms.... It's hard to say, but when in doubt, give the person the benefit of the doubt and be as kind & patient & understanding as possible.

Part of the reason I am here is because I wrote off my HD grandfather as a nasty, evil case years ago and it's only been recently that I've tried to understand more about the disease to try to distinguish between how much of the nasty side of him that I experienced was HD and how much was just him. After all, nice people get cancer, nasty people get cancer. Nice people get MS, nasty people get MS. Not everybody who develops HD was a nice person to start off with.

The answer is I don't know what my grandfather was like without HD and I'll never know now. He refused and avoided all medication but the family doctor who treated all our other relatives with the disease diagnosed him in the early 70s when he was in his 60s. Even my mother admitted that she really can't recall a change in grandpa's personality over the years, or distinguish between the years when we knew he had HD and decades earlier when he perhaps wouldn't have been showing symptoms.

When somebody is threatening your life it really makes no difference whether they were a nice or nasty person before HD/alcoholism/jealousy/whatever took over. You have to deal with what is in front of you and if you can't help or change it or control it then no amount of What Ifs or Remember Whens are going to make a jot of difference to any danger and violence you're experiencing from day to day.

Try to encourage your aunt to seek some emotional and psychiatric support from a doctor. Walking the tightrope as she is she must be under terrible stress. I think that we try to go along with the irrational thoughts and actions of the psychotic behavior but really we need to realize that the PHD is not rational and we are living a literal crazy lifestyle ourselves especially if the phd seems to be making some of the rules in the household. I have yet to figure out how to change that situation except by distancing the spouse from the environment as often as possible. Families really need so much support for this and it is really lacking from a health care perspective from society.

Hi Sara,

Where can I find the best articles on personality issues that start years before "onset" of HD. Onset to me means the obvious, undeniable symptoms of HD. My spouse has had odd behaviors since we married 16 yrs ago. I really believe now that his previous wife was dealing with some of these same symptoms (irritability, a lot of forgetfulness, depression, lethargy, etc etc. When we met he put his 'best foot forward', but there were signs and I focused on the positive. Little did I know what was up ahead. It's not just HD, he acts out towards his wife/wives due to neglect and abuse in childhood.
I've real a lot on the latter in the past two years....

Thanks.

Theresa

Hi Steve,

So what do you know about brain scans and when they show signs of the brain's deterioration vs abnormal brain activity/behavior way before the brain looks abnormal on a scan.

My spouse kept claiming for the past two years that a scan a neurologist did showed no sign of HD manifesting itself. This Dr. was not an expert on HD and I knew that I was seeing HD symptoms in my spouse for at least 10+ yrs. with them getting worse in the past 3 yrs. Yet the scan 'looked good'

Theresa