Community talks about intimacy, education with HIPE panel

**Mature material has been changed for our audience**

The following is a transcript of the HIPE (Highly Interactive Participant Education) questions and answers at our education day in Sacramento, California. The panel of experts included Dr. Vicki Wheelock, neurologist; Dr. Sasha Duffy, neurologist; and Lisa Mooney, LCSW, all from UC Davis.

Question 1:  I love my wife, but every time there is intimacy involved, I feel as though it isn’t consensual; that’s how I’m feeling – though it is consensual; why do I feel like this? Why do I feel as if it is not wanted, but it is?

Response: I’m going to go ahead and broaden that question a little bit, if it’s ok. So, intimacy is a big area that changes, first of all, with any of us, but maybe a little bit moreso with Huntington’s. Remember that part of that is that people with Huntington’s can’t necessarily pick up on the emotions of their partners and the people around them; they can’t read the signs and the signals, and there is no bigger place that’s happening than when you’re being intimate. You’re not usually doing words for everything … some people do words for everything, but it’s a lot of non-verbal, right? It’s a lot of non-verbal communication. So, if you just take it back a little bit, your intimacy changes through the life cycle very much, and it changes with illness – an illness that affects the mind and the body, and this one does both. It (HD) does change people’s responses, their interest level, the way that they show caring, the way that they don’t show caring, the way that they express their needs in every possible way. There is nothing more unique than the way that we are when we are with our partners. So, I think acknowledging, understanding that that’s going on. Letting the person know – ‘cause if you’re feeling something, they might also be feeling something. So, I think it’s important to try to talk about it. Maybe not at that time, but pick a time to talk about it, and then if there are physical issues, or if there are emotional issues – I’ll just pick one – depression can affect intimacy in a huge way ­– then this is something you can bring to your doctor, you can bring to a therapist or counselor to talk to. Sometimes it’s individual – you just want to talk to your own provider – and sometimes you should go as a couple and talk about it, but don’t just suffer silently, don’t suffer alone. (Dr. Vicki Wheelock)

 

Question 2: I can’t stand when people stare at my son. What should I do? I want to get angry and literally, sometimes, want to get physical with somebody, but I know I can’t, so what do I do?

Response 1: Educate; that’s your moment. That’s your moment to educate someone to what JHD and HD is. I get it, I get what it feels like to get angry and defensive, and that’s okay for you to feel that way. – But take a pause, turn it around, and see it as an opportunity. (Sasha Duffy)

Response 2: I think that something that happens with HD is that people who don’t know about it – and for us, we all know about it – but Huntington’s is a rare disease – it’s considered a rare disease, so a lot of people don’t know about it. One of the common misperceptions about the person with Huntington’s is they’re intoxicated, or they’re using drugs or something like that. So that’s a very common picture that we see, a scenario that we see. (Someone in this room has some awesome T-shirts that’s like—why don’t you ask about it?) Sometimes we recommend – I’ve had people say that those medic alert bracelets really make a difference, that when someone sees that you have a medical alert bracelet, that’s kind of identifying that way, people might take a step back. I do think that a lot of people just don’t know and judge, cause we humans judge. (Dr. Vicki Wheelock)

Response 3: So it’s important to remember if you have Huntington’s disease, or anything else, that you are still a person, and you should be proud of yourself. If you’re going through something hard, it’s okay to tell people. It’s also important to remember that there are people in this world that are just not compassionate and not caring – those people don’t matter. Okay? It’s the people who care and are compassionate that matter. So, Raul, our beautiful model here, the front says the same thing as the back (showing his T-shirt). The back says, “I’m not drunk!!! I have Huntington’s disease.” He wears this all the time. You can tell he loves this shirt, right? His wife made them. It’s just a way for him, when he’s walking down to get his soda from the local 7-11 or Circle K, people will know what’s going on with him, and it’s also an opportunity for people to talk about it. There was an event we had, the JHD walk (referencing Help 4 HD’s JHD walk) and another shirt that his wife, Gracie, made, said “I have a broken heart because of Huntington’s,” and I was wearing it, and I went and got my family after the walk, and some lady was like, “What is that about?” So it was an opportunity for me to talk about it – of course, she talked to me in the bathroom – so it was an opportunity for me, though, to talk about Huntington’s and what it’s about. So I educated one more person, and now that person is going to be a little bit more caring and compassionate and think about things when she sees someone that may be a little bit different. (Lisa Mooney, with Raul, HD patient)

Response 4: I like to wear this shirt because when I’m at a sport game and they ask, “Do you got drugs?” or “Are you drunk?” or something…they make you mad ‘cause everywhere you go, they ask you that. But with this shirt, it’s better ‘cause they already know what’s wrong with you. (Raul)

Response 5: So, I just have to say when we found these shirts, we called Gracie, and I asked, ‘How many of those shirts can we buy?” ‘cause when Mike wears his shirt, people actually come up to us and ask, “Well, what is Huntington’s? Explain it to us.” So, people want to learn, so then you’re educating, and you’re cutting the whole stigma of what’s going on, people staring – so they are definitely my favorite shirts and are a part of my husband’s wardrobe. (Katie Jackson, president/CEO of Help 4 HD International)

 The Huntington’s Post is made possible by grants from Teva Pharmaceuticals and the Griffin Foundation.