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Dealing with Emotional Symptoms

Program: Understanding Huntington’s Disease
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Andrew Schorr:

Okay. All right. Let's get to another question. Dr. Paulsen, this is a family question, and that is, what options are available when a Huntington's disease person's rage is continually placed towards the spouse and children? And as this person wrote, it's difficult to continually hear these insults and yet be expected to provide love and take care of this person. So, I know your center deals with the whole family. What do you tell the family when this is one of the symptoms of the illness.

Dr. Paulsen:

Yes, but isn't it true with all of us? The persons who get our worst days are oftentimes those persons closest to us, and Huntington's really is no different than anything else like that. What we would do is we would talk about treatment of agitation, rage, irritability. Oftentimes it helps if we treat the mood. The irritability, agitation, temper outbursts increase with depressed mood, so we oftentimes look at the bigger picture, and we've had success in having these diminish. It doesn't mean we can make them disappear, and that's true with almost human being. There are times when they still lose their temper, but in Huntington's disease, we typically look at a couple different things.

One is I look at the mood, and I look at the overall environment. What we've often found is there might be environmental times of the day or certain stimulations that would make it more likely that the person may lose their temper, and we've found this by working with care facilities in looking at environmental stimulants. You know, sometimes what happens is the part of the brain that breaks down is the part that helps us filter information. So now if people are listening on the radio, there are many other competing processes for them. There are things going on around their house, the phone's ringing, and their stomachs are rumbling, and their toe hurts, or whatever. All that stuff is entering, but our brain automatically filters it. In the Huntington's disease brain it isn't filtered, so it all bombards in. We do hear more about people being more irritable or losing their temper more often because there's so much information. So, sometimes we do things like limit the amount of stimulation. Turn off the radio and the TV and the phone and have one thing occurring at one time. So, there are environmental things we can do, there are family things we can do, and there are medications we can do. There's just a long list of things we would do, but it's not unusual for that complaint.

Andrew Schorr:

All right. So here's my Patient Power comment, and I say this across all health conditions. So, it's a family affair, right? So you need to talk with your healthcare provider or your advisors. You're in it together over a long term about all these issues. Speak up about it, and there are ways to try to manage it in your situation. It doesn’t do any good for your relationships to suffer to such a degree that you just don't have the ability to provide the love that you really want to, so you have to have those discussions.

Here's Mary writing in from Florida I'm sure out of love. Her niece is 20 and has never been tested. Is there something she can be doing now to help delay the disease if she has it; vitamins, exercise, etc. So, I guess it runs in the family, and that's what they're worried about.

Dr. Paulsen, what can she be doing not knowing the genetic test, but what can she be doing to delay it if it might be present?

Dr. Paulsen:

We don't know that yet. There are two research studies. One is called PREDICT-HD, and one is called PHAROS, and they are simply to take volunteers who are willing to be followed because we do hope to learn what we can do to help people be as healthy as possible. Huntington's isn't unlike other diseases in that way where your body is your vessel, and you want to maintain it in the best condition as possible, and that's why I think Karen's a good role model for us as she really makes an effort to eat right and exercise and be as healthy as she can. I think in general we want to be doing as much healthy living as possible.

They do have a study in mice, however, that the Huntington's disease moved much more slower in those that were active versus not active, and we've found that data in Alzheimer's as well, the "use it or lose it" phenomenon that we indeed should continue to challenge our brains to work in new ways, and that that seems to be a healthy brain exercise for us.

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