Episode Transcript
[00:00:10] Speaker A: Hello, welcome.
[00:00:11] Speaker B: You're listening to season two of Narcolepsy Navigators, brought to you by Naps for Life Narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kerri Boger, the founder of Naps for Life Narcolepsy. And welcome to our stories.
[00:00:40] Speaker A: We will be talking about life before diagnosis with Ramat from Indonesia. Hi, Ramat, how are you doing?
[00:00:49] Speaker C: I feel great.
[00:00:51] Speaker A: How has your week been?
[00:00:52] Speaker C: My week is very busy.
I did evaluation for my work at Bandung. It is out. Yeah, it's just really, really busy and I feel tired when I did. When I did that, but fortunately I done that well.
[00:01:12] Speaker A: You did well. Okay, that's good. That's good news. So can you tell us a little bit about yourself, what your name is, what area in the world you live in, and what year were you diagnosed?
[00:01:26] Speaker C: Okay. My name is Rahmat Farina. You can call me Rahmat. I'm from Indonesia now I reside in the city that's called Yogyakarta. I work as project officer in northern government organization called SIGAP NGO where the topic focus is about disability.
[00:01:52] Speaker A: Ah, that's interesting.
So how long have you been working there?
[00:01:57] Speaker C: I'm leading you to the base. So one year. One year. Okay.
Yeah.
[00:02:05] Speaker A: And they are. It's a nice environment at the workplace. It's a nice environment.
[00:02:11] Speaker C: Yes, of course.
[00:02:12] Speaker A: Yeah.
[00:02:13] Speaker C: Don't really get work it there because it is so inclusive.
[00:02:18] Speaker A: Oh, wow.
[00:02:19] Speaker C: And unlike the other place, they even let m if my narcolepsy attack.
[00:02:28] Speaker A: Ah, that's good. That's good.
[00:02:31] Speaker C: So you provide bed.
[00:02:33] Speaker A: It's provide.
Wow.
Oh, you're very. You're very lucky. Wow.
So you, you told them at the interview and they said, yeah, don't worry, we'll be able to provide you safe space to sleep. I didn't expect that.
[00:02:50] Speaker C: Seriously.
[00:02:51] Speaker A: Wow.
[00:02:53] Speaker C: You said that I need to sleep for a while, but I didn't know that they also provide bed. Oh, if you want to sleep, you can go to his. No problem.
[00:03:04] Speaker A: Oh, that. That is really nice.
That's really nice. So can you describe the first signs of symptoms of narcolepsy you experienced?
And how old were you at that time?
[00:03:19] Speaker C: Okay. Back then in 2017, about five or six years ago, when I. 20 years old. The first symptom of narcolepsy is just for me, it's like, oh, I slept when I When I awake my friend to do homework at college, when I study, when I for bachelor degree. Of course the first I just somehow sleep slept. Even though it is not the right place to sleep.
But the symptom is just was just escalate fastly.
It's getting worse. When. When I riding my motorcycles.
[00:04:18] Speaker A: Oh wow.
[00:04:19] Speaker C: And I that fall. I fall.
[00:04:22] Speaker A: Oh no.
[00:04:23] Speaker C: Combat motorcycle.
[00:04:24] Speaker A: And do you still ride now?
[00:04:28] Speaker C: No, of course.
[00:04:29] Speaker A: No.
[00:04:29] Speaker C: It's too dangerous.
[00:04:30] Speaker A: Okay.
[00:04:31] Speaker C: And the other thing is when at that time sleep paralyzed is symptom. That's very frequent to me. When I.
[00:04:42] Speaker A: How did that make you feel? Were you afraid?
[00:04:45] Speaker C: Yes, of course I did. Because I never felt that sleep paralyzed that frequently.
Not in my entire life. I mean, if yes one time or two times a month, it's okay. But somehow it's happened almost every day at the time.
[00:05:06] Speaker A: Oh no.
[00:05:07] Speaker C: And it's freaking scary.
It's spooky experience. Of course.
[00:05:13] Speaker A: Yeah. So who did you tell? Did you share this with anybody or you kept it to yourself?
[00:05:20] Speaker C: Of course I share it to my mom. Because that sleep paralyzed symptom is quite annoying me. Like usually I just set the alarm.
So when. So when I wake up, I will not. I will not late for attending my foliage.
But because the sleep per symptom my wake up can be postponed like 10 minutes or even one hour.
Just freeze in my bed.
[00:05:56] Speaker A: Yeah.
[00:05:57] Speaker C: See some horrifying hallucination.
[00:06:01] Speaker A: Yeah, that must. That must have been scary. So what did. What did your mom think when you told her this?
[00:06:08] Speaker C: At first she didn't believe me.
She thought that I just made some drama.
[00:06:18] Speaker A: Oh. So when did she start to believe you? That you were not being traumatic that something was happening to you?
[00:06:26] Speaker C: When I said it is just a matter of time before everybody know that I have this kind of problem.
Because the symptom is emerge frequently and the peak point is where I fall asleep suddenly. And my guardian and my.
What can I call it? And my friend saw it. And then this friend is called my mom. Talk about what happened to me after that she believed me.
[00:07:05] Speaker A: Oh, then she's. After that she started to believe me. That's good.
[00:07:08] Speaker D: Yeah.
[00:07:09] Speaker C: She started to let me in my. When the other person thought about what happened to me.
[00:07:15] Speaker A: Yeah. So now that your mom believed you and your friends were also noticing that something wasn't right. When did you decide to go to like a doctor?
[00:07:26] Speaker C: Right after I knew that I could done my. I couldn't done my.
My semester really well.
[00:07:37] Speaker A: Oh no.
It was affecting you in school.
[00:07:41] Speaker C: Now I have so many absence at that time.
[00:07:46] Speaker A: Okay.
[00:07:47] Speaker C: At that time, I couldn't explain why. Why I was happening to me.
[00:07:54] Speaker A: Yeah.
[00:07:55] Speaker C: Was difficult.
So.
[00:07:57] Speaker A: So were you missing classes or you were just being late to the classes?
[00:08:03] Speaker C: I'm not even allowed to go to the class. To go in the class. Because of that, I decided to go home and do some medical checkup.
[00:08:19] Speaker A: Okay. So you were. You were living at the university?
[00:08:23] Speaker D: Yes.
[00:08:23] Speaker A: Oh, yes. Okay. So when this started happening, it was getting worse. Then you took a break and then you went back home to try to see a doctor.
Okay. And so what did the doctor say?
[00:08:36] Speaker C: Well, in this case, I'm. I can say I.
I could say I'm pretty lucky because I'm bachelor of psychology, so I kind of know the way to gather the symptom.
[00:08:54] Speaker A: Okay.
[00:08:55] Speaker C: To talk so I can decide which doctor is right for me.
[00:09:01] Speaker A: Okay.
[00:09:03] Speaker C: I went to home.
I.
I told my mother that I must go to this doctor. And lucky me.
My first trial. At my first trial, I got diagnosed by narcolesis.
[00:09:23] Speaker A: Wow. So what doctor did you see? A neurologist?
[00:09:26] Speaker C: No, sleep specialist.
[00:09:28] Speaker A: Oh, sleep specialist. Okay.
[00:09:31] Speaker C: One and only in Indonesia.
[00:09:33] Speaker A: Oh, wow.
[00:09:34] Speaker C: Yes.
[00:09:34] Speaker A: Okay.
And so was it hard or expensive to get that appointment?
[00:09:40] Speaker C: Oh, it's really expensive.
[00:09:42] Speaker A: Okay. But on the first go, you the person diagnosed you?
[00:09:48] Speaker D: Yeah.
[00:09:49] Speaker C: But before I got my first diagnosis at Malang, the place where I study. Before I got. Because in my home, my hometown, I try to find.
I. I try to went to.
From one doctor to another doctor.
[00:10:10] Speaker A: I was like, did also a few doctors before.
[00:10:14] Speaker D: Yeah.
[00:10:15] Speaker C: But at my place where I'm studying Malang in Malang, I marry Go Ranbo got to from one doctor to another doctor. Maybe I visited 10 doctor.
[00:10:30] Speaker A: Oh, wow.
And what were they saying?
[00:10:34] Speaker C: It's pretty weird because usually when the disease is clear enough, you just need to visit three doctor. And when they said the same thing to you, this is like dang or fever. It's really queer disease that if the three doctors said the same thing, then the data is clear. Right. But yes, in my case, all of that doctor said something different about. Oh, my disease. So I think I could trust the doctor, the common doctor. I need to go to specialized.
[00:11:16] Speaker A: Specialized. Yeah. So what were the sorts of things they were telling you?
[00:11:22] Speaker C: Some doctor said I'm bipolar.
[00:11:26] Speaker A: Ah, yeah. That is common.
[00:11:29] Speaker C: One Nadu said that I have anxiety.
[00:11:33] Speaker A: Ah.
[00:11:34] Speaker C: Another said that maybe I have depression.
[00:11:38] Speaker A: Oh yeah. They like to tell people they have depression. Yeah. You knew that it was something more.
[00:11:44] Speaker C: Yeah, yeah, it's something more. I just suspect that it is not that.
[00:11:56] Speaker A: So had. Had you heard of narcolepsy at the time?
[00:12:01] Speaker C: Because I heard. The first time I heard about NY is at first I'm just looking for sleep disorder because I try to analyze myself.
My problem is sleep disorder. So I just search for the whole picture of sleep disorder, variety of sleep disorder.
And I said, oh, maybe the thing that I experience is hypersomnia because at time, even though I have enough sleep, I still feel sleepy. Yes, but I don't know exactly what it is.
[00:12:45] Speaker A: Yes, but you. But you knew it was definitely to do with sleep.
[00:12:49] Speaker D: Yeah, yeah, it's definitely for me.
[00:12:52] Speaker A: Yeah.
[00:12:53] Speaker C: One thing that I know. So I decided to go to sleep specialist in Jakarta.
[00:13:01] Speaker A: I know it affected you at school, but was it also affecting you at work or your social life?
[00:13:06] Speaker C: Yes, it's affect me my social life back then, I'm still student.
I didn't have any work yet at that time, so my social life is kind of messed up.
[00:13:24] Speaker A: And did your friends understand? Were they supportive or like, you're ready? Were they saying to you, like, oh, I think something is wrong, you need to see a doctor, or they thought that you were making it up?
[00:13:39] Speaker C: Or they said, I'm just freaking lazy.
[00:13:42] Speaker A: Oh.
[00:13:45] Speaker C: I said, well, but I cannot argue to them because I still didn't know myself what was happening.
[00:13:57] Speaker A: Yeah.
Did living with. When you were undiagnosed, did it impact you mentally or emotionally?
[00:14:07] Speaker C: Yes, I.
I feel the impact emotionally, obviously, because sometimes I just felt my. I feel that my mood is really up and down, but I know somehow that it's not bipolar.
It is because the hormone in my body that different. That work differently since I have narcolepsy, so. And I become more sensitive somehow.
I feel easily.
[00:14:44] Speaker A: You feel irritated easily? Yeah. So other people were seeing like the change in your, like, mood and things like that.
[00:14:54] Speaker D: Yeah.
[00:14:55] Speaker C: And I. I feel that my. But it is not strength, not strong as before.
[00:15:03] Speaker A: Like physically.
[00:15:05] Speaker C: Yeah, Physically I'm much fatter.
[00:15:10] Speaker A: Oh, you gained some weight.
Yeah. This is quite a common thing with narcolepsy, people gaining weight just the time before the. As they're about to get diagnosed. Around that time. Yeah. It's quite a common thing.
[00:15:31] Speaker C: Oh, yeah. Before I know that I'm not quite sick, my wake is 55, but at the time when my symptom is get worse, my weight is going up until 75.
[00:15:52] Speaker A: Yeah.
[00:15:52] Speaker C: That's.
[00:15:54] Speaker A: Yes. In a small space of time. Yes.
Yeah. That is crazy.
You'd think that that would be an indication to everybody around you that you must be unwell because it's difficult to put on that much weight just in two months, you know.
[00:16:14] Speaker C: Yeah, yeah. Fortunately, I need to reduce my weight 10 kilogram, but I'm still working to down until five more.
[00:16:30] Speaker A: Yes.
I wish you luck and perseverance in continuing to get it back to where you're happy with it.
[00:16:40] Speaker D: Yeah.
[00:16:40] Speaker C: Thank you.
[00:16:42] Speaker A: So did you face any stigma or misunderstanding from people around you or any family members or people in the community?
[00:16:51] Speaker C: The stigma is rising, especially when I don't know about my condition.
After I know my condition, that stigma is reduced somehow. That's good because I now I can explain what happened to me.
[00:17:08] Speaker A: Yes.
[00:17:09] Speaker C: Because I know what's happened to me. I can choose which the environment that I want into it.
[00:17:17] Speaker A: Yeah.
[00:17:18] Speaker C: But yeah, I still face stigma. Like people call me lazy, people call me not focus enough. People call me dozy rosy.
Yeah. You're so far away from. They regarded me as a lazy person.
[00:17:38] Speaker A: That's not very kind. Did you, did you keep all your friends or did you lose any friends?
[00:17:45] Speaker C: Yeah, I lose any.
I lost some of my friends, but some friends still keep. Still keep in contact with me.
[00:17:55] Speaker A: That's good.
[00:17:56] Speaker C: But I think I don't need that much friends.
[00:18:00] Speaker A: Yeah, Yeah.
[00:18:02] Speaker C: I just need a friend with good quality, I think. Yes, that's true.
[00:18:08] Speaker A: Sometimes when people experience illnesses, it exposes who your true friends really are.
[00:18:16] Speaker D: Yeah, exactly.
[00:18:17] Speaker A: So before your diagnosis, who and what was your biggest support? Before you got diagnosed, who was your biggest support? Who was that championing you?
[00:18:30] Speaker C: I think my. If you, if you ask me about my biggest support, I think before and after the is, I still got the biggest support from the same person. Like my family, of course.
[00:18:46] Speaker A: Okay, that's good.
[00:18:49] Speaker C: But the difference is between before and after I got diagnosis, before I got there close.
I can gather with a lot of friends, travel around with them, go to one place, to another place. I can go to river with them sometimes I can go to Savannah.
But after learn colon, it is difficult for me to find some people who want to carry me to their motorcycle.
[00:19:31] Speaker A: Oh, yes, because you used to drive yourself.
[00:19:37] Speaker C: And go to another place with me.
So my mobility is hampered somehow.
[00:19:43] Speaker A: Yes. That must be frustrating.
[00:19:46] Speaker C: Yes, I did feel that.
[00:19:49] Speaker A: Before understanding the condition, did you develop any strategies to help you manage your symptoms?
[00:20:00] Speaker C: Oh, yes, I did, but it didn't work. Well, you know, I was trying to buy, you know, some real coffee.
[00:20:12] Speaker A: Okay.
[00:20:13] Speaker C: Yeah, like really black coffee without sugar, without any sugar addition.
But somehow I feel it's. At first it looked like it's working, but at the second and the third Day messed up my whole thrift cycles.
[00:20:42] Speaker A: Oh no.
[00:20:43] Speaker C: So it didn't work well for me.
[00:20:45] Speaker A: Did you try anything else?
[00:20:47] Speaker C: Oh yes, I tried to cold bed or bed up.
[00:20:52] Speaker A: Sorry, say that again. You tried Covid.
[00:20:56] Speaker C: I'm trying to back up using cold water.
[00:21:00] Speaker A: Oh, cold water.
[00:21:03] Speaker C: But it didn't work.
[00:21:05] Speaker A: Yeah, it didn't work as well.
[00:21:10] Speaker C: I try warm water.
It makes me sleepy.
[00:21:15] Speaker A: Made you sleepy? Oh gosh, it made it worse.
So to look at looking back, what advice would you give to someone experiencing similar symptoms that hasn't been diagnosed?
[00:21:27] Speaker C: That have been diagnosed.
[00:21:29] Speaker A: Okay.
[00:21:29] Speaker C: It's difficult to give the suggestion to someone who hasn't been diagnosed, because how could you handle yourself if you don't know your condition? So for me, my suggestion is try to seek to look into diagnosis first and then start to be denote yourself. And yeah, you finally can manage it if you know your condition.
[00:22:01] Speaker A: Yes. So when you did your research and you were looking at all the different sleep disorders and you thought, okay, I think I must have one of these. And then when you got to the doctor and he says, okay, I heard what you said, you have narcolepsy, how did you feel?
[00:22:24] Speaker C: I.
I was surprised. I was surprised, of course, but at that time I thought that it's better for me to know it as soon as possible rather than know it later, because I know it later.
Just do it for maybe.
[00:22:47] Speaker A: Yeah. And so did they start you on medication?
[00:22:51] Speaker C: Fortunately, after I know my n.
My doctor said is my narcolepsy is not that severe.
My narcolepsy. I got the narcolepsy type 2.
[00:23:10] Speaker A: Oh, type 2. Okay.
[00:23:12] Speaker D: Thank you.
[00:23:12] Speaker C: So with us, cataplexy without cataplexy, I tried to research myself about the food and drink and that makes me feeling sleepy.
So after about two years of observing myself, I realized that food with divine carbs, too much refined carbs, the food with too much sugar, the food that have some caffeine in there, it really make my sleep met up.
[00:23:55] Speaker A: Okay.
[00:23:57] Speaker C: It make me cannot generate the pattern of my sleep attack.
But it's really, really long process.
I still consult with my doctor somehow sometimes and he said that I need to.
I need to observe which for ordering that magnetic and not giving a notes to my sleep notes. But when I sleep, when I got sleep attack and because of this suggestion I find some pattern. I usually feel sleepy at the peak is when afternoon.
[00:24:48] Speaker D: Yeah, it's.
[00:24:49] Speaker C: But I think it's common for people with narcolepsy to feel asleep fertile at afternoon.
[00:24:56] Speaker A: Yeah, yeah, that's true. So. So you're still not on medic, so you're still on medicated.
[00:25:04] Speaker C: I'm not using any medication, but I try to recognize which time I sleep and which food that trigger my sleepiness.
[00:25:17] Speaker A: Yeah. So you've taken out the foods and you watching your thing. So do you take scheduled naps?
[00:25:23] Speaker C: Yes, it is.
[00:25:25] Speaker A: Yes.
[00:25:35] Speaker C: I know that after I know that I have narcolepsy.
I thinking back then maybe I.
I'm too stressed back home.
So my symptom is getting worse at that time.
[00:25:57] Speaker A: Yes.
[00:25:57] Speaker C: That I did not sleep as well.
[00:26:03] Speaker A: Oh, that's brilliant. So how did you reduce your stress? You must share with me because I'm stressed a lot.
[00:26:11] Speaker C: Okay.
First I did.
I'm doing sport but not high intensity sport.
[00:26:20] Speaker A: Okay. Which one?
[00:26:22] Speaker C: I do like lower intensity until medium intensity workout.
[00:26:27] Speaker A: Okay.
[00:26:28] Speaker C: Or I'm more focused at more repetition instead of using too much heavy weight.
[00:26:36] Speaker A: Okay.
[00:26:38] Speaker C: And I think just little cardio is help me and like exposure from my phone, from my laptop. I'm trying to reduce that.
[00:26:53] Speaker A: Yeah, that's really good. I like that you. So you found lifestyle changes to help control the symptoms.
[00:27:02] Speaker C: But I think it's. Yeah. Because it is personalized, something that's worked for me doesn't mean it will work for you too.
[00:27:12] Speaker A: Yeah, no, you're absolutely right. You're right.
[00:27:16] Speaker C: Sometimes we must figure out which one is work, which one is not.
[00:27:20] Speaker A: Yeah.
[00:27:21] Speaker C: And it's really long process.
[00:27:26] Speaker A: So do you think things are getting easier now that it's been, do you say six years?
[00:27:32] Speaker D: Yeah.
[00:27:36] Speaker A: You think it's getting easier?
[00:27:38] Speaker C: Yeah, but I feel learning until now.
[00:27:42] Speaker A: Yeah, still learning. So how has life changed since you've had. Since you've been diagnosed. In what ways do you approach life differently?
[00:27:52] Speaker C: Okay, I think my approach is different. Especially when, especially about my. I really care about my food.
I really care about macro and micronutrient after I got BC because one wrong food can mess my whole day.
So I'm trying to observe, I'm trying to pay attention more. But the food intake that I eat and I try to pay attention more about what kind of sport that I have to choose.
[00:28:38] Speaker A: Yeah.
[00:28:39] Speaker C: Because sport makes me have some injury and even the worst like my body feel hurt.
[00:28:48] Speaker A: Yeah.
[00:28:50] Speaker C: Then three mental sickness when I just the wrong spot.
[00:28:55] Speaker A: Oh dear. So you. This has made you really listen to your body.
[00:29:00] Speaker D: Yeah. Yeah.
[00:29:01] Speaker A: That's good.
I saw on your, on your Instagram, correct me if I'm wrong that you, you recently got married.
[00:29:13] Speaker C: Yeah, I did.
[00:29:15] Speaker A: Congratulations. So how has that transition been? Did you know your wife before you were diagnosed.
[00:29:25] Speaker C: The transition is also difficult for me. No.
From when I felt in from the first. When I diagnosed with narcolepsy, I felt darkness around my heart. It's difficult for me to believe that now I'm married.
[00:29:44] Speaker A: Ah.
[00:29:46] Speaker C: I have the wife that want. I have wife that want to accompany me.
Whatever my.
My bed, whatever my sickness it is at that time.
I try to push away my wife for me.
At first when the relationship started, I tried to push away my wife. I said, but my negativity of my bad thing that I have my illness, I have narcolepsy, I have autism.
I scare her about that. If you live with me, your life will not be good.
But somehow she didn't run away.
[00:30:38] Speaker A: She so nervous.
[00:30:41] Speaker C: She just stayed with me and she accept thing that I'm not good at it.
[00:30:46] Speaker A: That's beautiful. That gives me. That gives me so much hope. That does.
That's so beautiful that you know, she saw you the person and she didn't care about your illness. And she's by your side. That's beautiful.
[00:31:03] Speaker C: So at first when before we marriage, we.
We doing some relationship.
What is called.
[00:31:15] Speaker A: Sorry, quarter.
[00:31:17] Speaker C: Yeah, we going out together.
Going.
Oh, dating. When we dating before marriage.
[00:31:25] Speaker A: Yeah.
[00:31:26] Speaker C: Sometimes she surprised. She is surprised when I fall asleep suddenly or when I cannot treat its non verbal meaning. Well, it's not obvious. Autism. I also have autism.
And when I the way I talk is too frontal. I do not do Kit Kat like the other boys do. When I don't like say it, say it directly.
And sometimes I'm too harsh. My word is too harsh.
[00:32:08] Speaker A: Yeah.
[00:32:09] Speaker C: Sometimes we fight things like seriously, we are fighting and sometimes we have different opinion.
But you go through it together. So finally I married her.
[00:32:25] Speaker A: That's nice. That's really nice.
What is the narcolepsy community and support system like in Indonesia?
[00:32:45] Speaker C: It's not well established yet because it is new. Maybe it's about it established. It's still one years.
[00:32:56] Speaker A: Okay.
[00:32:58] Speaker C: The narcolepsy community is established at 2002.
[00:33:06] Speaker A: Okay.
[00:33:07] Speaker C: It's still really new.
So right now just best for us to communicate. But narcolepsy, what's happening to all of us sharing the story. And sometimes my friend Indy said that if someone from abroad is sharing about narcolepsy, even I will share it to you.
[00:33:39] Speaker A: Yeah. So you feel more awareness is needed in your part of the world.
[00:33:46] Speaker D: Yeah.
[00:33:47] Speaker C: It's still a long way ago.
[00:33:50] Speaker A: So how many people from Indonesia are you in contact with that have narcolepsy.
[00:33:56] Speaker C: Or girl One, me, four girls.
[00:33:59] Speaker A: So Just five of you.
[00:34:02] Speaker C: Five of us.
[00:34:03] Speaker A: Yeah. It will be nice if you all can meet one day. That would be nice.
[00:34:09] Speaker C: Yeah. Of course. Right now, I recently met one person, but not at narcolepsy, one person with autism.
So I met them one by one online.
At first I met six of them at Jakarta and recently I met them, I met one of them in Bandung. Maybe I want to meet them at another city in Indonesia.
But I hope I can also find another person offline.
Yeah, but with narcolepsy. But I think it's still the difficult right now.
[00:34:56] Speaker A: Yeah, no, that would be nice. This is why I'm doing this. I. I want to talk to people from every part of the world who have narcolepsy and to make more, make it more to be. To shine a light. And so there's more awareness in all over the world, even in places where there doesn't seem to be much support at the moment. So we need to get the word out so that people can be more supported. And I believe every person who has narcolepsy needs to have a friend with narcolepsy that they can talk to, you know, just to debrief and because that person is going to finish your sentence for you. They know exactly how you're feeling and good to have that support there.
[00:35:47] Speaker D: Yeah.
[00:35:48] Speaker C: I hope I can meet another person, more person with narcolepsy.
[00:35:54] Speaker A: Yeah.
[00:35:56] Speaker C: But you did a great job. You did first step well. Your first step well.
[00:36:03] Speaker A: Thank you.
[00:36:05] Speaker C: You're welcome.
[00:36:07] Speaker A: If you had a red button and you could press it to get rid of your narcolepsy, would you press it? And why?
[00:36:15] Speaker C: If I have red button, I think I don't have to press it.
[00:36:20] Speaker A: You don't have to press it?
Why?
[00:36:23] Speaker C: I don't need.
Because I think I just do adjustment instead of get rid of it.
[00:36:32] Speaker A: Okay.
[00:36:33] Speaker C: Because when I push that button, yeah, maybe I got my old life, but I didn't.
I will not get the good friend like I'm right now.
[00:36:51] Speaker A: Okay. Yes. That's so true.
[00:36:54] Speaker C: I love them. Yeah.
[00:36:57] Speaker A: So you like how your life has adjusted now?
[00:37:02] Speaker D: Yeah.
[00:37:02] Speaker A: Yeah. So is there anything about narcolepsy that we haven't talked about that you'd like the listeners to know?
[00:37:13] Speaker C: Narcolepsy. Narcolepsy.
Ah, okay. Some people may wrong about narcolepsy because narcolepsy is different in term of severity. The level of severity of every person is different.
Narcolepsy is not something guess that you see at movie where people suddenly fall asleep.
Some people have preparation time, even though, they can stop the process of narcolepsy, but they can use the place to fall asleep. Some people, not all of people.
It's according to the level of severity.
Yeah. I think I just want to tell people more that.
[00:38:02] Speaker A: Yes, that's very true.
It's different for everybody. And the level of severity does, does mean, does dictate how you manage it. Yeah. And how you're dealing with it. Yeah, definitely. Well, thank you for coming on Narclepsy Navigators and sharing with us your story.
I, I, I wish that there will continue to have more awareness and that the community in Indonesia grows and that you're able to meet someone who has narcolepsy in person very soon.
[00:38:46] Speaker C: Okay. Thank you for inviting me as well. And I was sorry, I'm not really good in English because English is my second language.
[00:38:54] Speaker A: No, you did very well. Your English is fine. Fine.
I typically didn't say no, your English was fine. So, yeah, thanks for coming on and we wish you all the best in your future.
[00:39:10] Speaker C: Okay. Wish you luck, too. I hope we get married, too.
[00:39:14] Speaker A: Yes, I hope so.
I hope so, too. Thank you.
[00:39:20] Speaker B: Thank you for spending time here with us at Narcolepsy Navigators. I hope you learned something new.
[00:39:28] Speaker A: Please share the podcast with others.
[00:39:30] Speaker B: You can find us on all platforms. See you next time when we delve into another person's story.
