Carlos Briceño, Jill Briceño, and Alexus Jones

00:01 Hi, my name is Carlos. Briceu00f1o. I'm 56 years old. Today is May 10th. 2021. I'm near Chicago, Illinois. This is a conversation about my families dealing with Huntington's disease. I'm here with my wife. Jill and my daughter Alexis.

00:21 I am Alexis. I am 24. Today is May 10th 2021 in Boston, Massachusetts, and I am here with my mom and still and the dad Carlos. Today is May 10th 2021. I'm in Naperville, Illinois or talking about Huntington's and how it affects our family and I'm recording with my husband Carlos and my lovely daughter Alexis.

00:58 Alexus since you found out about Huntington's, I know you've done more research than anyone who's ever lived. What are some of the things that you've learned? And what is Huntington's mean to you?

01:18 Play growing up.

01:21 I saw my grandfather slowly wasting away. He

01:29 Father Figure in my life for my early years and computer, really understand it. I needed to look at the science of it. I need to understand why it's happening. So he did Research into it. When I was younger that it was, it was genetic. So if one of your parents had it, you had a 50% chance of receiving my GED, and the gene causes a faulty protein that causes the brain to hear. You're right. That's why is generative disease that usually takes in between Thirty and fifty and then the decline differs between people

02:16 So, with Grandad having it, I knew you had a 50% chance. And that men, if you had it, I had 50. So works out the mouth 25, but at least when I was growing up, we really talked about it. Like I helped.

02:37 Feed Granddad through to growing on. So it wasn't wasn't exactly a secret in our family, but I know when you were growing up.

02:49 You guys didn't really talk about it.

02:54 That is true. We didn't talk about it a lot. We knew that it existed. I had aunts and uncles and great-aunts and uncles who all had Huntington. So I knew what it was. My mother didn't really know what it was when she married my dad. She kind of learned the hard way, but it wasn't something that we were ever afraid of. It was just something you eventually got if you had the gene in our family, so as much as we didn't talk about it, it wasn't a taboo subject. It just wasn't talked about

03:36 I remember making sweet potatoes in the kitchen with you Alexis and putting marshmallow fluff in explaining to you.

03:45 What all those calories were for? Because by then, my dad had. Sorry, I jumped.

03:58 Okay, can we go back to? It wasn't something we talked about?

04:03 That was something.

04:10 So, Huntington's wasn't something that really ever scared me. Did it scare you and Lou?

04:17 I think the thing about our families, we're a bunch of caretakers. So for me the idea of having it was always a lot less scary than the idea of you having it or my uncle's or my cousins.

04:40 But the fear that you or somebody else in our family had it definitely impacted me when I was younger and I I I I don't do well with unknowns whatsoever. And that unknown really touched me and I was giving you your test results.

05:08 Just because of how genetics work, really was ready to deal with that.

05:22 Then when I found out and and told you a few months later.

05:28 You knew.

05:32 Yeah, I had to explain to you why I got tested because

05:38 Maybe two years prior to that. I started feeling some depression and

05:48 Just a lack of energy and a lack of of wanting to do something or do anything at all. And I realized today that I couldn't clean our house.

06:01 As silly as that sounds, I realized that I probably had it.

06:11 But I let it sit for a couple years because my dad's generation you didn't get tested because when you got tested, it was dangerous, your people wouldn't hire you. People wouldn't give you health insurance. My dad lost two jobs over it. So we were always taught to not deal with Huntington's until Huntington's. Is it is an unmovable, for Senior Life, meaning, you're depressed. You've lost jobs. You're becoming OCD, your mind keeps fluctuating on things, and I can't focus. And then eventually start showing physical symptoms called Korea. So, I was always under the belief that you didn't think about it until you have it.

07:06 And so when I asked Carlos, if he had noticed anything, he had, he noticed that I had been having some of those like my fingers and my toes moving without me knowing or my my eyes darting back and forth.

07:31 So, I went and got tested and to be honest with you. It wasn't the most Pleasant.

07:38 Process to go to go through it. I was 40 and adults with a husband and have

07:49 A relatively decent grasp. On my emotional sense and self, and it was a really difficult process and then

08:00 I wasn't I was upset at the process.

08:04 But I dealt with it because that's what I had to do to find out. If I had Huntington's and I never realized how upsetting the process was until you went through, but Lexi. Can you explain to me a little bit about what you felt what you had to go through?

08:22 Yeah, so

08:27 I knew once you had it that I was going to get tested. So immediately looks out because you can only get tested at centers of excellence centers, that have been given permission. So I found one.

08:47 There were ones in my in my area but the the Healthcare systems are really hard to get into.

08:58 So I found one place that had openings and they did the testing, which mine do for. My butt is all that was needed to take the blood. They throw it into something that reads your jeans and they can tell that is all actually needed.

09:19 But they do this on Huntington's clinics and they do it once a month on. The first Monday of every month was a senior in college. So I was taking classes transmission. My senior year.

09:36 Monday, I had classes from 9 a.m. Until 10 p.m. So to do this on this Monday, what I had to wait a month, the one appointment they had for the following month. I had an exam that I couldn't miss and so the following month. I had to choose class to miss so I could go get my blood drawn at any other time. So I went to the hospital. One of my close friends went with making me because I

10:12 Don't often do things alone because I need for our family since we don't have Sheena. Huntington's is at the earliest in your 30s.

10:35 I was 22 definitely way below the age of onset possible, yet. I had to answer a whole bunch of questions about my future. I had to answer questions about whether or not I want to get that. I was like, I just want to know if I have exams, which was very unnecessary. Considering I would not have that they were not budging on the props house. So ever. So I know the result was like, cool.

11:25 Great.

11:29 Spring by, I went to Italy for spring breaks day after we got back was the day I found out about the result of friends go with me and they were like, I don't think we need people to support network wall. Wanted to be there.

11:56 We all filed into.

11:59 Little office with a social worker because they won't give anybody there over the phone. And they called my friends had it. As soon as I saw the whole team there. I knew what my results were before they even opened it.

12:21 So I knew that I had it dealt with it. The same way, I deal with everything else is that I went to see a movie with a friend and my friends just to hang out. But I left that process really angry because there were so many steps in it as an orderly unnecessary. I we had to spend money on health care costs that were completely unnecessary me a young person to just find out what my genetics were.

13:09 But that apparently about the process and they don't make exceptions because they're worried about how people would react.

13:20 And I remember Mom that you made a really great analogy. Is that, like Huntington's? Yeah, there's not much you can do, but especially the death sentence of smell in time for therapies come out.

13:45 The more immediate issue.

13:52 So, we write.

13:56 Co-op.

13:59 And it was just,

14:02 Really a frustrating experience but needs reformed, especially especially for young.

14:14 I kind of like that the Huntington community that they do is right what the Huntington's Community does. That's right, is a state stand up for their patients. So they have created a situation in, which they, they have centers for excellence, and they have neurologists, and psychologists and sociologists, and social workers in psychiatrist who were all trained in helping Huntington's patience, because it's such a small group of people with such a unique set of issues that they have created a situation, which is has been great for Huntington's patients. However, some of their rules are just archaic.

15:04 I think.

15:06 As medicine grows, so should the network that supports it.

15:13 And I think the problem is, is that people and, and doctors and systems get so mired in rules and regulations. They forget that they're treating an individual patient with individual needs. So hopefully sometime you think we could maybe reach out to the Huntington's community and, and see if we could get some of those rules changed, some of the process changed. You think it's possible.

15:41 What else?

15:46 The reason that they're worried about the reason they have made all these rules. Is there worried about the suicide rate for finding out the diagnosis, but I think,

16:01 Especially if you grow up with a family with eight, you have a very different relation with deaf fan.

16:11 The average person from somebody who doesn't know what Huntington's is and finds out about this diagnosis. I can understand how overwhelming and it would be growing up with it.

16:26 Death and life being cut short by Huntington's isn't this?

16:34 I know about for so long that there.

16:50 With that kind of off of that is how we do as a family, kind of look at that with it.

17:01 Okay, so I feel like we deal with things with a little bit of, I don't know. Black humor is the best way to say it. What do you think, Lexi?

17:11 Yeah, I mean.

17:14 One of my favorite comedians talks about the fact that humor and laughter is not the opposite of sadness, but rather to a situation that's locking it. And I think that's really represented is kind of how we handle things. It's a way of processing without sitting around feeling hopeless.

17:39 I remember you telling me about.

17:45 Joke mentioned about at your work about kind of our relationship with death and waiting till retirement.

17:57 Yeah, but sadly, you know, you lost an aunt to a horrible tragedy just not.

18:05 2 years ago.

18:08 She was sitting in her.

18:11 Sorry.

18:13 They were sitting in their car, her and her son, your cousin and a tree fell on their car because of a horrible storm and she died instantly.

18:26 The sad part is, is like

18:29 She lived her whole life waiting for retirement. So I was working with a woman and she said, oh, yes, I'm just you know, my husband and I are just waiting for retirement to do anything. You know, he has a countdown clock and I looked at her and I went why would you not live? Like everyday? Like it's your last and she said because we want to save up we really want, you know, retirement. We're just going to wait to do all our living then and I kind of looked at her and I just went yeah, that's what my husband sister said right before she died. Now it was that funny. Kind of, was it bad? I know but it is how we deals.

19:09 Death, I mean in three years we lost very close people. We've dealt with Huntington's, Carlos lost both his sisters. And so we just kind of figured we don't have a Deskjet Purcell per se, but it's what I like to call. We have a sale by date with Huntington's.

19:33 You know, we know exactly kind of went, our packaging is going to start eroding when we're not going to be as crisp and clean and wonderful and shiny and new as we are. But so why wait until that day to live? Why not live today? Like, I don't know. You're going to get crushed by a tree in a car.

19:54 Yeah, and I mean,

19:56 Living in Boston. Every time I step out of my house. I don't know if I'm going to get hit by a car Bay, some drivers here. So there's really no reason to exactly wait for things. So I think that was a mix of the deaths. We've had in the family and

20:16 The effects of Huntington's on how we looked at things like we growing up. We had close family, friends, that died and so life tossed.

20:28 It's not about living on a specific time line. It's kind of doing what we, what we want. Kind of when we do.

20:36 I think that's been a very valuable thing, as a young person, not necessarily living on anybody else's timeline.

20:48 There's something to be said about.

20:55 How you live your life and being more focused on your relationships with others and what you're doing in the moment, then kind of looking at the future like that.

21:04 The Grandad had a shorter life than you know, average because of Huntington's, but his funeral was packed.

21:19 Yeah, I still hear, you know people quoting my dad. It's hilarious. Even is bad jokes, is that dad jokes?

21:27 Like what do you think? I'm so much older than you. My dating relationships were different than what you're going through because when I was your age, I had a four-year-old and I didn't know I had Huntington's. I knew it had a 50% chance of having Huntington's but it really wasn't something that was part of my life. I told people that existed but it never affected anything about dating. When I was your age. What do you think it affects you? How do you think it affect you?

22:02 Yeah, so I have known about Huntington my whole life, right? So when I was younger and in high school dating people, like, I think, for people, I was seeing it was kind of a very far off. I know it was a concern of mine, but it wasn't really something serious to them at the time, but I actually got my confirmation of

22:34 Having the Huntington's Gene really right, before I started seeing my current significant other.

22:44 So he was the first person I was seeing that it was like, yes, there is not this.

22:49 Huge risk in the future of me. May be having it, but it was confirmed. It was if you are looking at me long-term, this is something we will have to deal with.

23:03 I'm not exactly one to hold things back or have a Seltzer on our fourth date. I showed him a comedy special about how low non-existent and fake need to stick with me through that. So, you know, not too much was going to scare him.

23:25 But I think that factors your relationship thinking about the future, but really affected my relationship.

23:42 Negative way.

23:46 Like we rightly, he reads them.

23:55 Yeah, by on uses, what you do on

24:02 Bionews is a column that you write monthly, right? Or bi-monthly. What is a group that has various?

24:17 News outlets for rare diseases. So, specifically for Huntington's news about my hands, as a young person with you having hunting tests, as well as me, not like I have the G, and I just write how that impacts my my life.

24:38 And he has been a great support through writing it. I think writing for me is pretty cathartic.

24:46 I let out a lot of things in my writing, that I wouldn't normally talk. And so that's been a way for me to communicate with him about how I'm feeling and how Huntington's affects my life.

24:59 Without having to set an actually say it.

25:04 Yeah, it's been a real eye-opener for your dad and I

25:10 You you talked about a lot of things that affect you emotionally that you don't normally talk about. So it's it's really been a good thing for us to connect and understand what you're going through too, because your experience with Huntington's has been so much different than mine. I wasn't 24 and thought about it. When I met Carlos, you know, we were you were older and I still hadn't been tested and so he knew there was a chance but he also got to see your grandfather. So he met your granddad before he died and so he got to see first-hand what Huntington's was and what my possible future was. So he was he has a pretty, he had a pretty good grasp on what could happen, you know the day he met your grandad because it wasn't something that we hid.

25:59 So he was kind of okay with it.

26:02 I got something interesting to think about is that for me? My significant other is never.

26:10 I've never seen that. It's all through kind of me talking about it and what I've written, but he hasn't experienced it. Granted. He will by the time I get there cuz he'll see how I handle you. Kind of in the same way that Dad saw granddad.

26:32 But I think that especially when it comes to relationships.

26:40 There are so many things that life can throw at you that you can't prepare for. And likely one day. Somebody's going to be a caretaker for the other.

26:52 So, I don't.

26:54 I'm lucky in that it's never affected my relationship, but I also don't see why it should.

27:01 That's a good point.

27:03 I think that anyone your age, it's got to be like a really hard conversation to have any way for anyting about the future about anyting. What are you doing now? It's like securing your future. So you don't have to worry about things financially. When you get to the point of Huntington's,

27:24 Affecting your everyday life.

27:28 Very exciting Lee we close on our house so we can start building up kind of that and hopefully live in a place without paying rent because I also make sure to

27:48 Pay attention to my investments and those kind of things.

27:52 So it's definitely a thought process of when I'm making career decisions and financial decisions of what my future is going to be like in cat because I was like, yeah, I should save money, you know, I got the cat but it's definitely something in the back of my head at all times big choices.

28:19 The buying the cats help you emotionally too. So it's actually a good investment in your well-being.

28:28 Yeah, we can we can say they do comfort me. Sometimes when I'm sad and then sometimes I'm sad because they so, you know, too. That sounds like that happened recently.

28:47 But, you know.

28:50 I think that.

28:54 Kind of different on a different note that Huntington's has on some level brought us closer together.

29:06 In that, I think, you know, we've always been very close we've fed.

29:13 Kind of,

29:15 We had a wonderful relationship, especially when I've talked to some of my friends about their relationship with their parents. Like ours has been amazing, but I think Huntington's

29:28 One, we have something that.

29:34 Start. I makes our time for precious than it would be otherwise and I think being young and in my twenties, I could price for ties various different things, but I think it drives me to prioritize. The time I get to spend with you guys. I am very connected to technology and my phone and all of these things. But

30:02 When I'm with you guys our time together, just means so much. It's also how I got you to watch The Bachelor with me because it's something we can do and connect together. What, what do you think, Mom?

30:18 Well, I love you very much. And that's really, the only reason that I would watch The Bachelor and Carlos loves us both very much. And that's the only reason he would watch The Bachelor. I think you slept through 3/4 of it though. Just for the record. I agree. I think. I think that I always on some level understood how precious life was. When I was younger. We lived in my parents ran a shelter. So for abused and neglected children, so we had 180 kids go through there, over a matter of a year-and-a-half. And I saw how horrible people could be to one another. And I think then I learned that if I ever had a child, if there was ever going to be anybody who's going to rely on me in life. I was going to be a responsible parent and, you know, show that child as much love as I could. But when my dad was diagnosed with Huntington's, I think it made

31:18 That much more important. And I also have a, you know, your uncle was in three car accidents. One of which, he almost died will actually two of which he almost died, when he and jokingly tell people. I know he's out of vampire because he ran into a fence and got stabbed through the heart and lived. It wasn't as dramatic as that. Of course. He was, he did have, he did get stabbed, but it wasn't through the heart. And then he had a traumatic brain injury and one of them, and

31:48 It took him, he had to learn how to walk again and talk again and all of those things. So like I understood that.

31:58 This moment is all you possibly have.

32:01 And so, whatever that whoever that person is be at you or Carlos or friends or family. The thing that I want them to leave me knowing is that I love them. So I think that you and I and Carlos do spend much better quality time together than probably, a lot of people do because I don't, sadly, it's a sad horrible thing that we understand that. But I think in a way it's a it's a wonderful thing that we understand that because we at this, like I go to work, can I listen to people talk about their children? And I think you understand how lucky you are. Do you have any idea how wonderful it is? That they came home and visited you with your three dogs and two cats and seven children and they screamed and they roughed up your house. Like you, you should really just be happy that they were there. You know, that you got to spend some time with them that like all of

33:01 Things are are things. I think that we get on such a deeper level.

33:08 Do you think that, like affects your friendships and your other relationships?

33:14 I think I'm

33:18 I think I really do value.

33:22 And appreciate the friendships I've made. I think I also have

33:27 Like I have a lot of friends that I am necessarily as close to, but I definitely work on building. Those closer relationships with people and understanding how precious those things are to have somebody who's going to be there with you kind of threw all of it, but I think it.

33:55 I think that it does give me kind of less patience sometimes like as you're describing with, it's frustrating to hear people.

34:07 Kind of talk about things that you're like, wow, you should just you should be grateful for that. So it doesn't smell good, being kind of less patience for those things.

34:25 But,

34:27 You know, it I think that outweigh is outweighed by the

34:35 The kind of perspective that it gives us on how important things are.

34:41 If you could give what if you could give somebody, who just learned about Huntington's in their family and got diagnosed some advice. What advice do you think you could come?

34:57 Well, you know me, I'm full of advice. So I probably talk for an hour. But more than anything. I think I would just say, it's okay. Whatever you're feeling. It's okay, because I think like a lot of the times we we tell other people that were okay when we're not that because it does run in the family. We stuck it back in so we don't scare the Next Generation, but all we're doing is showing them that it's not okay to process feeling. So whatever you feel, whatever you want to say at that moment. It's okay.

35:41 And it's okay that other people listen to it. So you don't have to keep it all inside because I think that is where so much of the depression and isolation come from because it feels so lonely.

35:58 What would you give?

36:01 Sorry, I need a moment. That was amazing advice. I love you. I love you, too. Maybe that's what the advice was for.

36:22 I think mine would be.

36:28 That.

36:31 Sometimes, if the future is going to be overwhelming that thinking of everything out there and thinking of it taking clock.

36:42 Like it just it's suffocating. And so my biggest advice would be to live in the moment. Kind of as you wish you could. Don't let the fears of Judgment of other people or the worry of Tomorrow. Hold you back from doing things that you would otherwise do.

37:11 Granted much easier said than done.

37:14 But I think it's something that I do try and live by as I can.

37:22 That means being 24 and working towards closing on a house and having two cats and

37:31 Making all these decisions because they're what makes me happy rather than what's expected of me.

37:40 So, as we wrap this conversation up, this is Carlos. I just wanted to say what I've learned throughout all this is

37:49 Not to take life in anyone for granted.

37:52 Also that we're all terminal some may not have an awful disease like Huntington's, but it's, it's made me think of any amount of time that I have to live. What am I going to do? And one of the things that I've decided is to dedicate myself, to loving, Jill and Lexie, both of whom are so, so amazing and beautiful, and smart and wonderful. My hope is to love them as well as I can and support them as well as I can because I'm just so blessed to have them as my wife and daughter.

38:29 And I die just look at life differently because as they mentioned, time is so precious. So my time with them is so precious, and every second is a blessing. And so I'm so grateful for that. I just want to end this by saying I love you Jill and I love you, Lexi.

38:48 I love you. I hope you guys.