My heart gos out to you because so many of us have been there also. You feel like there is no one to really help you. Most importantly your emotions and termoil are valid but understand that he is sick. You are not at fault..nor is he. Because he is so unstable and unable to realize what he is doing to you and your son it is up to you to take on a new position in your marriage that of helping tby Bridie - Huntington's Disease Support Center
Which State does he live in? Some states have much more knowledgeable MDs. I would also call the medicaid office and mention that he will need the services of a psychiatrist nurse if they have one in home health care when they come in to take his vitals. If you can get someone who understands how to develope his trust then they can assess him more honestly. You can share things with them withoutby Bridie - Huntington's Disease Support Center
Don't use HD as an excuse to get to the doctors, try using some other medical problem. Remember he is his own person and if he refuses help it is very hard to get it for him unless the doctor understands what is happening to him, the neurological implications. Maybe you can get him to go with you first.by Bridie - Huntington's Disease Support Center
You are at such a difficult time with the disease now. Some doctors might not pick up on these symptoms so if you can somehow get him to an HD specialist, you will be able to get some help sooner. Sounds like he could benefit from medication. If he does have a primary care doctor start there but first alert the doctor about symptoms and try to use any excuse to get him there first but don't brinby Bridie - Huntington's Disease Support Center
What I haven't seen emphasized in any of these posts is the fact that the diagnosed is new to this person. It is like we all begin thinking everything will turn out great for our families and kids etc 'when they grow up'. As time goes on we begin to understand that life is not that way. How many people who have children look at their infant and believe all the wonderful possibilities which thby Bridie - Huntington's Disease Support Center
Just must say something, this is an issue that gets me upset. Yes there can be major abuse with an HD spouse, parent or even child. If it occurs you 'must' get out and get help. However there is a 'big difference' between an phd becoming extremely explosive and abusive and an abusive spouse who is a control freak. One of the big differences is that the phd can be regulated with medication andby Bridie - Huntington's Disease Support Center
This post really hits home with me too. My spouse was generally not a violent person but there came a time when I felt it was no longer safe for our children to be with him alone, not necessarily because of imminent violence but because of unrealistic thinking and abrupt and threatening comments. It rings a bell of fear. He is not reacting in a normal way. He is not understanding your fears becaby Bridie - Huntington's Disease Support Center
I can only share with you what I remember after first getting the diagnose of my spouse and being totally blindsided. You will not be able to try to get a handle on it right away. All you can do for now is go one day at a time. Don't look forward, don't look back. You were living a perfectly normal life up until now, meaning you had certain hopes and ideas about the future. Now you might haby Bridie - Huntington's Disease Support Center
Interesting that this has been a sleep aid for many years especially for travellers going overseas to readjust to new time zones. Sleeping PHDs tend to stop or slow movements while asleep, so what mechanism of the brain take place while asleep might also show some correlation to taking melatonin. Maybe there is a connection.by Bridie - Huntington's Disease Support Center
So many of us have been thru this kind of senario, your fear for your children and yourself. I was always calling the police and by the time they arrived he was calmed down and they had no clue of what had transpired.... until one day when an aid who had been sent in by social services came in the middle of an 'episode'. She was so petrified she refused to come back, then they 'got it'. Untilby Bridie - Huntington's Disease Support Center
Some medicaid programs in certain states will cover a modest burial expense. Check with Medicaid or medicare.by Bridie - Huntington's Disease Support Center
The only ones who understand this are people who have lived thru it. You will find yourself exhausted and sometimes angry at others who just don't get it. Try not to burden yourself openly with this anger but consentrate on the few things that are left that will give your children some good memories. I used to try to find humor in things in front of the kids and especially see the funny side ofby Bridie - Huntington's Disease Support Center
What a great example for all to hear. This why it is so important to get the right doctors, team and medication.by Bridie - Huntington's Disease Support Center
Please do all you can to make the lawyer understand that he should advocate for you father based on his medical condition. Many people see HD as based psychologically not neurologically, You must emphasize the limitaion is due to a severly damaged brain which cannot always function and arrive at logical conclusions and react accordingly especially when he is tired or upset. This must be emphasizby Bridie - Huntington's Disease Support Center
Do all the research you can and get to a doctor who really understands HD. They are few and far between but the ones who do get this behavior will be your saving grace. Some PHD in early stages refuse, or are just to apathectic to get help which is a sympton of the disease. By the time you are able to get a diagnose from some doctors the phd has wrecked havoc from family life. Important to rememby Bridie - Huntington's Disease Support Center
This is such an important example of caregivers just needing some breaks! Helping take care of an HD relative is totally exhausting and draining at times. Something has to give. Glad all is better for you.by Bridie - Huntington's Disease Support Center
Wow you are angry and frustrated at this kid who has turned into a monster, I get it. Been there and done that, went thru same thing. This is what you have to understand. He 'is not' the kid who was so adorable as a child. He is a kid in the early stages of HD and this is how it manifests sometimes. He cannot help a lot of what you are mad about. The showers, introvertedness, poor grades etc. Soby Bridie - Huntington's Disease Support Center
Here we go again with another case of the lack of knowledge and understanding about HD. Because he is acting somewhat soundly at present the NH thinks he has no need of help. Someone who is unable to control their emotions has rages with harm to oneself and others because of a neurological disease is not the same as someone who gets mad on occassion but understands what triggers the anger and caby Bridie - Huntington's Disease Support Center
I think that this is what some would refer to as a transitional time, your Mom really needs help and she is getting to the point where she just can't think and take action in a way that is needed now. You don't want her to think that you are trying to control her but let her know first that your Dad can't do it all so are going to 'bring her the help that she really needs' . However to do thatby Bridie - Huntington's Disease Support Center
Really depends upon the company. Call HR and explain to them specifically what is happening to him. He really needed a doctors diagnose. Try calling an HD specialist for some help. If he is that symtomatic it might be that you need to appeal to the company directly. He needs to be on medical leave at least for now until he gets diagnosed. I know that if he had a diagnose before he was fired it mby Bridie - Huntington's Disease Support Center
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 toby Bridie - Huntington's Disease Support Center
Thanks for the kind words and best to you both.by Bridie - Huntington's Disease Support Center
I think that it is very important to look inside yourself and answer some important questions. Are you a caring type person who really is able to have true compassion for another human being? Are you a common sense person who sees situations clearly and makes sound decisions. Are you willing to take on a challenge of this magtitude? It is not just whether or not you love him for it is obvious yoby Bridie - Huntington's Disease Support Center
My husband came from a large family and there seems to be no other case known. However it had been suggested that possibly there might have been prior cases which were on the 'cusp of HD' and a mutation of the gene occurred at his conception which manifested into full blown HD. Read up more on the possibility. I think that you could find some info on the Lighthouse. That being said it could alby Bridie - Huntington's Disease Support Center
There are two kinds of these cigarettes, one has a fake light that really looks like a lit cigarette,it has some kind of a twist on, twist off mechanism, The other is called aveo comes in a cigarette type pack and you clip off the ends and inhale. We found that one easier to work. I think that they are the best thing ever for people who are having troubles holding cigarettes and also eliminates tby Bridie - Huntington's Disease Support Center
There are two kinds of these cigarettes, one has a fake light that really looks like a lit cigarette,it has some kind of a twist on, twist off mechanism, The other is called aveo comes in a cigarette type pack and you clip off the ends and inhale. We found that one easier to work. I think that they are the best thing ever for people who are having troubles holding cigarettes and also eliminates tby Bridie - Huntington's Disease Support Center
Hi Carla, I too had to place my son into a nursing home. It was heartbreaking at first but now after time has passed I know that it was the best thing I could have done. He is definately happier. I am still involved in his life and have gradually gotten him to understand that I just couldn't provide for his needs at home any longer but also that I would not ignore him. I do all I can to provideby Bridie - Huntington's Disease Support Center
Please accept my sympathy and prayers. Eric, May you all find comfort with family in your grief.by Bridie - Huntington's Disease Support Center
Michelle, have him checked for dehydration. Sometimes there might be another medical problem that is the cause of some of this. So Sorry for all that you are going thru.by Bridie - Huntington's Disease Support Center
Just a few more suggestions, Don't talk to fast, let an idea seep into the consciousness, but bring up things that you remember the person loves and let your laugh come up. Also talk directly to the person not around them. Sometimes a cold Mcdonalds chocolate shake is better, easier to get down for someone more advanced.by Bridie - Huntington's Disease Support Center