Outburst Associated with HD~An Interview
Katie Jackson: My wife has outbursts in public. We have always enjoyed going out, but it is getting harder. What do I do if someone reports her acting out?
Dr. Amy Hellman: Once again, I will start answering the question you didn't ask, outbursts are part of the disease. There are some things that we can do to help manage outbursts. Sometimes there are behavioral things that you can do at the moment. If you can identify triggers, avoid them, that is number one. That is not always avoidable, and sometimes they're unexpected. So, you know no judgment on you and if you can't do it. But if you can find those might be just something you might be able to avoid. Some medications can decrease outbursts, and they do not have to be heavy-duty. There might be a medication that already on that can just be adjusted to help to decrease the outbursts. If this is going on, talk to her providers about that, they can help you with that. But answer your actual question is something that's difficult.
Everybody here is aware of how the public who does not about Huntington's disease misjudges what's going on. People are often thought to be drunk, high on drugs, all these things. One of the things I thought that was excellent is making little cards, kind of like business cards that say, you know, something tailored to you, but along the lines of like, "Hi, I'm so and so, I have Huntington's disease." And then the back has a little bit of an explanation of briefly what Huntington's is. And therefore you can expect these things from me.
Be appropriate in a situation like, say you're going to a restaurant you can give it to your wait staff, maybe the people in around you, or if you're going to be on a plane, you know, something like that, where there's be people, that you can kind of give those cards out. I think if security comes and confronts you or police or something like that. I know that there's efforts to educate law, but you never know if the person will enter the situation.
Something that might be helpful if your healthcare provider might be willing to write a little letter you can even have with you. You know, "This person has Huntington's cause this, this, this, this, this, you know, a brief explanation that you can have on letterhead. It's an official letter to have your back if something happens.
Katie Jackson: So, Help 4 HD has these cool cards. These are free for you. So, all you have to do is contact the amazing Vicki Owen at Vicki, V-I-C-K-I@help4hd.org, and she will send you these for free. It says on it, "About Huntington's disease," it talks about uncontrolled my movements and behavior." And then, on the other side, it does say, "I may have uncontrolled movements, impaired gait, delayed response, slurred speech, trouble following directions, increased agitation, and anxiety."
Dr. Amy Hellman: There's something in the chat here about medical ID bracelets.
Katie Jackson: Right. Another great thing is my husband had shirts that said, "I'm not drunk. I have Huntington's disease. And the public impact was calmer when he wore that shirt.
Terry Tempkin: These are all great strategies, the card, and the medical ideas, stuff in terms of educating other people. But there's also an acknowledgment that this man is, things are changing. And it’s part of it is the anticipated grief that an activity that once was fun is changing. Yet another thing is changing and a shout out to him to encourage him to find somebody to help process grief and loss. And many other things that change in that care partners have to process along the entire journey.