S4E11: Blood Is Not Thicker: Boundaries, Trauma, and Narcolepsy

⚠️ Content note: This episode includes discussion of childhood sexual abuse, suicidal ideation, and mental health crisis. Please take care of yourself first.

🎙️ EPISODE GUEST: Alejandro Bruno Solas — Program Manager, PWN for PWN | Narcolepsy Type 1 Warrior | Psychedelic Health Advocate | Colorado

In one of our most powerful episodes to date, Kerly and Liz sit down with Alejandro Bruno Solas — a half Puerto Rican, Colorado-based program manager, Freemason, martial artist, and passionate narcolepsy advocate — who lived with undiagnosed narcolepsy type 1 from the age of five until he was 38.

Alejandro's story is raw, honest, and deeply human. He walks us through childhood sleep paralysis he couldn't name, a silent burden shaped by trauma and abuse that taught him to keep quiet, misdiagnosis as a learning disability throughout school, a high-pressure corporate career that pushed him to breaking point, a mental health crisis that led to a life-changing ER visit, and an unconventional treatment path including microdosing LSD that he says gave him his life back.

This episode also carries an important message for men in the narcolepsy community: your story matters, your voice is needed, and macho culture is not serving anyone.

WHAT YOU'LL HEAR IN THIS EPISODE

━━━━━━━━━━━━━━━━━━━━━━━━━━━━━

• How sleep paralysis started at age 5 and went unnamed for over 30 years

• The role childhood trauma played in Alejandro's silence around his symptoms

• Being placed in special education despite no learning disability

• The toxic workplace that drove him to sleep deprivation and crisis

• The medication journey: Adderall, Modafinil, Xyrem, and Xywav

• DMT, neuroplasticity, and the new frontier of psychedelic medicine

• The power of mentors, small wins, and setting core values as anchors

• His message to men in the narcolepsy and sleep disorder community

CONNECT WITH ALEJANDRO & PWN FOR PWN

📧 alejandro@pwnforpwn.org

🌐 pwnforpwn.org

💬 Join the PWN for PWN digital community via the website

RESOURCES MENTIONED

If Alejandro's story resonated with you and you're navigating your own chronic illness journey, CareTrack was built for moments exactly like this — when you need to track what's happening in your body, document your path to diagnosis, and advocate for yourself in a system that doesn't always listen.

Built by a spoonie, for spoonies.Free to use at steadycaretrack.com

If you or someone you know has a sleep disorder and would like to share your story, please reach out — we'd love to have you on the show.<

Transcript

Alejandro 29_06_25
[00:00:00] 
Welcome to Season Four
[00:00:00] Speaker 3: Hello, welcome. You're listening to season four of Narcolepsy Navigators, brought to you by Naps For Life CIC. Narcolepsy Navigators is a podcast for raising awareness of these fascinating illnesses through a deep dive into the lives and individuals living with narcolepsy, idiopathic hypersomnia, and Kleine-Levin Syndrome.
[00:00:34] Speaker 3: I'm Kerly Bwoga, the founder of Naps For Life CIC, and welcome to our stories.
[00:00:42] Speaker 3: This episode includes discussion of sensitive and potentially triggering topics. We believe in honest and open conversations, and that means we don't always stay in comfortable territory. We handle these [00:01:00] topics with care and intention, but we want you to be able to make the best choice for yourself before listening.
[00:01:09] Speaker 3: If you are in a sensitive place right now, please take care of yourself first. Resources are always available, and it's okay to step away and come back when you're ready. We're glad you're here. We'll see you in the next episode. Thanks for listening.
[00:01:34] Kerly: Hi everyone. Welcome to Narcolepsy Navigators. I am Kerly, your host. I have narcolepsy, type one,
[00:01:40] Liz: and I'm Liz, your co-host. And I also have narcolepsy with cataplexy. 
[00:01:44] Kerly: And today we are here with Alejandro. 
[00:01:47] Alejandro: Hi everybody, I'm Alejandro Ru Solas, and I have narcolepsy type one. 
Weekend Check In
[00:01:51] Kerly: Okay, so Alejandro, how was your weekend?
[00:01:54] Alejandro: Oh, this weekend's been amazing. I love being happy, right? You just you gotta end the, you [00:02:00] gotta end like your week off, like when you're working really hard and do things that just make, give you joy. So yeah, yesterday my wife and I, we go to one of our happy places in the mountains called Pine Valley.
[00:02:09] Alejandro: So we take our, we only have. Dogs, three fur children that we love a lot. And yeah, we just hiked around there and enjoyed, the beautiful area, the scenery, and then, a nice mountain drive, which loved doing that. So that is how the weekend has been. And then we, of course ended off a, just spending quality time with each other out in the patio last night with a fire.
[00:02:23] Alejandro: So yeah, it was a lot of fun.
[00:02:24] Liz: Aw, yeah, that sounds delightful.
[00:02:25] Kerly: And Liz, how was your weekend?
[00:02:27] Liz: My weekend was good. I went to a wedding on Thursday of one of my good friends and wedding's, a whole day event, and it's a lot of socializing, so I loved it, but it, I needed at least two days to recover. I wasn't even drinking, but just from the exhaustion of all the socializing.
[00:02:45] Liz: I was at my mom's house and she's really chatty and loves to do things with me, so I was trying to balance, like getting rest whilst also chatting to her and having some quality time. But finally made the drive back to [00:03:00] London today where I live, so it's quite nice to be back in my own flat again, and hopefully I'll have some time to just sit in front of the TV later and not talk to anyone and completely recover before work tomorrow.
[00:03:12] Liz: How about you, Kerly? How has your weekend been? 
Kerly Health Update
[00:03:15] Kerly: Yeah, my weekend's been okay, thank God. 'cause I've had a rough three weeks with the TMJ and dental issues, which was very annoying 'cause I went to Amsterdam for the health conference and it was really good . It was very good experience, but I was in pain the whole time I was there.
[00:03:31] Kerly: So it was very challenging. Like you're having interviews, you're talking to people. I got interviewed for someone's podcast. You're talking to industry people about narcolepsy and what technologies they could make in the future that could help us. Things like that. And you have to put on a smile and a brave face and take photos and stuff.
[00:03:46] Kerly: And the whole time I was like dying. So finally I got some medication on Friday. So a very strong. Drugs, pain meds, and also muscle relaxer. They up to 50 and finally I, the last two [00:04:00] days I've only had to take tablet once a day and before I was having to take it on the hour. So that's a big relief.
[00:04:06] Kerly: Yeah. Because I'm so behind on editing and everything, I was just like feeling really annoyed. 'Cause like I finished college, I finished editing, yay I passed and that's great. So then I should have more time for the podcast. But then I got sick and it's just that was just so annoying.
[00:04:21] Liz: Yeah. And you think narcolepsy is just gonna be the one thing that you have to deal with. And then suddenly it's oh, have this other long-term condition that is, drives you in pain
[00:04:29] Kerly: and it also affects your sleep. 'cause if you're in pain, you're not sleeping properly. And so that mess with narcolepsy and then also having sleep apnea when your face is hurting, you don't want a machine that squashes your face on top of the already pain that you're having, but then you have to wear it still. Yeah. Yeah.
[00:04:47] Liz: Wow. I'm really glad you got the medication that is helping. I hope it gets easier.
[00:04:52] Kerly: Thank you.
[00:04:52] Kerly: And today we're with Alejandro and welcome to his story. 
Alejandro Background and Work
[00:04:56] Kerly: Alejandro, would you like to tell us your name, your age, if [00:05:00] you feel comfortable, and what area of the world you're living in or state. The year you are diagnosed.
[00:05:05] Alejandro: Absolutely. And first of all, again, congratulations on the graduation, achieving those goals, that is huge.
[00:05:12] Alejandro: Seriously, congratulations on that. Especially with everything we live through, right? That's a huge accomplishment. So very proud of you for that.
[00:05:19] Kerly: Thank you.
[00:05:19] Alejandro: Yeah, so Alejandro Bruno Solas, I'm the program manager for PWN for PWM. We are a nonprofit organization here in the United States.
[00:05:27] Alejandro: But however we look at it is we also serve, international, right? I manage the programs that we have for our organization, like the Jobs project, which helps people, bridge that gap and either trying to search for employment. Because that's a whole beast on its own.
[00:05:42] Alejandro: Or just getting some type of education maybe to step up their game in their career or whatever and connect them with a recruiter, Sam he's amazing. He's been around the industry for 30 years, so it's nice to, finally connect people with, opportunities like that.
[00:05:55] Alejandro: Especially 'cause my background, I came from corporate America and my [00:06:00] background's human resources. So that's a passion of mine. Now where I reside is, I live here in the United States, like I just mentioned in commerce City, Colorado right by, we're like a suburb of Denver good old Colorado.
[00:06:11] Alejandro: However, I was born and raised in the San Francisco Bay area. Definitely, my heart belongs in California. That's where it's at, Northern California. Very proud of that. And then, yeah, I am 49 years old. I was diagnosed at 38. 
Early Symptoms and Comorbidities
[00:06:26] Alejandro: However, I've had the narcolepsy type one since I was five years old, and only reason why I know that is that's when the sleep paralysis kicked in for the very first time and it became pretty much almost a nightly thing. Just paralysis. Yeah. Anybody that experiences, they get it. And then of course, everything else just started happening right after that, the EDS Yeah. Just and know misdiagnosis of, you have a learning disability and I just wanna sleep all the time.
[00:06:53] Alejandro: That's pretty much how it was. And then comorbidities, the other thing is circadian rhythm, sleep disorder sleep apnea. So [00:07:00] yeah, I know about the mask thing. Actually, I was diagnosed with that first at 36. And then also, diabetes. So I definitely, manage my diabetes, so that also plays a role into it.
[00:07:10] Liz: Wow. So you were diagnosed at 38 and you also had other diagnoses along the way before that, why do you think it took until you were 38 before you managed to get a diagnosis?
[00:07:24] Alejandro: I grew up in a mixed family, right? I grew up with nothing but half brothers and sisters. And I was the youngest, I think really for my parents at this time, I was their last child. And it was a great opportunity for them to do something different, right? Do it better. And they had their careers, they were established, right?
[00:07:38] Alejandro: But I had these other siblings and there was dysfunction, going on in there. 
Childhood Trauma and Silence
[00:07:42] Alejandro: So when I was five and I had that first like experiencing the paralysis now. I do have some ideas, and now I can't say it, it's definite 100%, based on the research it's either some type of traumatic event that's happened to your head some type of brain trauma that could trigger the narcolepsy or [00:08:00] like a flu, right?
[00:08:01] Alejandro: And I remember like when I was around four years old, playing around with the siblings while the parents were out, like on date night, with our neighbors. And so we're at the neighbor's house and I just remember, being that little boy, playing around with my siblings and my brother Jay was on his back and he was launching me for off of my butt, into the air.
[00:08:16] Alejandro: And they had pillows and everything, and I would land on the pillows and it was fun, right? Do it again, kind of thing. And finally when they did it again, I got launched high in the air, missed the pillows and hit my head and I was knocked out. I just remember, and I don't remember that part, of course.
[00:08:30] Alejandro: I, the only ways I can describe it's 'cause how my siblings described it, right? Where I'm just like, I guess I went limp. I'm knocked out, they're freaking out. I do remember when I woke up, I'm instantly crying. So that was the head trauma, right? Now that could have triggered it.
[00:08:45] Alejandro: Or maybe when I, I do remember having the flu, when I was around that age too. So it could have been that, who knows, right? Now what made me not speak up? I'm here I am this kid, experiencing something that's just odd to me. I can't explain it, right? Really, it's like you wake up [00:09:00] and you can't move your body.
[00:09:01] Alejandro: And I remember I was like that kid that was scared at night, I didn't wanna sleep alone, so I was sleeping with my brother, Rocky. He's my oldest sibling that I lived with, and I remember telling him, Hey, Rocky, this is what's happened. My body's not moving at night, and when it happens, I'm gonna yell and so you can help me get unstuck.
[00:09:17] Alejandro: Just help me. And it did, it happened that night Paralysis kicks in and that's when I learned you can't even speak. There's nothing you can do about it. And it's interesting because I do remember telling him, that happened and then that was it.
[00:09:29] Alejandro: He was the only person I told I didn't tell my parents. I never questioned it after that. And the reason why is that, is because unfortunately I am a child who was also getting molested. So I was being taught, to keep things quiet and not say anything. So yeah I had another sibling molesting me.
[00:09:47] Alejandro: I actually had two siblings molesting me one directly, the other one indirectly, because it was more like they were. Showing me genitalia, things like weird things like that. Just these two were, just did really weird, disgusting [00:10:00] things. And it affected me and it taught me, that you keep things quiet, right?
[00:10:04] Alejandro: You don't say anything. So I never talked about the paralysis. Now there was one other time back when I was like maybe 17 years old, 18 years old and my cousin was staying with me. And this is actually, keep in mind, when I was 14, my mom passed away. When I became about 15 and a half, 16, I moved away from my dad.
[00:10:26] Alejandro: Nothing against my dad. It was nothing. My dad had a rule. He was a director in the federal government, yet. An amazing career very focused on that. He is always in DC and all that kind of stuff. And and plus I just didn't know how to communicate everything that's going on in my life, all the challenges that I'm facing. And particularly it was more of what I just told you, right? The molestation that, the abuse, and I did, I even had my rocky unfortunately was physically abusive to me because he was very angry. Their mom had passed away, and I think a lot of that was taken out on me.
[00:10:56] Alejandro: So I was very scared of my siblings. And so yeah, [00:11:00] when my, I ended up emancipating myself basically. Not legally I threatened my dad that I was gonna emancipate myself, but he allowed me to just live in Chico, unfortunately I did. At that time I knew an older lady who was a preacher
[00:11:13] Alejandro: And I met her through my other older brother Ruben, and she was there when my mom died. And really for me it was like, it was almost a blessing in a sense that's how I was trying to take it. That here's this older person that's like my mom's age, that's, an educator that, has concern for me.
[00:11:28] Alejandro: But unfortunately that person ended up molesting me too until 15 years old. And you can imagine, sleepless nights thinking about all this. I was also very scared of that person. And so I didn't know, and plus I'm at the time, this is the nineties, where you're hearing like news stories where this kid is has slept with their teacher and the teacher's now pregnant and it's out in the news and, people are making fun of it.
[00:11:50] Alejandro: I don't wanna say any of this I kept it quiet. And yeah that kind of all happened. So that's really why, I never really talked about, like never asked anybody else. I didn't [00:12:00] even, I didn't even tell this person that I was living with in Chico Hey, what does it mean, that I have this paralysis and all that.
[00:12:06] Alejandro: But finally I was telling my wife just yesterday, I'm like. I'm like, you know what's wild about my life is that I had all this messed up stuff going on, but I also had amazing experiences. Here's all this stuff going on as a kid, but then I always look forward to summertime.
[00:12:22] Alejandro: 'cause that's when my dad took me on his business trips. And I'm getting to travel everywhere with him and meeting like the Secretary of State. And I got to, meet the president of Mexico and 'cause he got an award from him and back in the eight, all this wonderful stuff. And I was telling her that, just last night I like, it's just wild. 
School Struggles and Mislabels
[00:12:41] Alejandro: And but, and then I had amazing careers, going into, when I'm dealing with all these issues through school.
[00:12:46] Alejandro: Now we're in elementary school, we're in junior high school and high school. And that was a struggle for me. I'm an intelligent person and and the educators could never put their finger on it, right? What is wrong with him? Why does he interact with [00:13:00] us somewhat during the day? He can answer things correctly, but when it comes to testing he's just falling off.
[00:13:06] Alejandro: And the areas I typically fell off of. And that really, for me, the narcolepsy affected comprehension. Now I suck at math, so , I don't use that as an excuse. It's just I'm horrible at math. But when it came to, comprehension it wasn't that I wasn't comprehending, it's just the fact that I micro nap a lot.
[00:13:23] Alejandro: And that's what's happening. Teachers teaching me things in the class, they're lecturing. I'm micro napping, so I'm losing, I'm like in between the awake and dream states. I get a test put in front of me. You are timed. And yeah, I was struggling when it came to comprehension. So I would fail tests because again, I would have to read, I'd read a few sentences and then I'd have to go back because I fell asleep, right?
[00:13:45] Alejandro: I micro napped and it was just constant going back and forth. And you know what? I'm sorry, but that was also exhausting having to do that. That was just exhausting. And so that just happened. And then finally when I got into high school is when I started experiencing a lot [00:14:00] of tests by, not only the school district, but by the state itself, the Department of Education where they were just trying to figure out figure out does he have A-D-H-D-A-D-D?
[00:14:10] Alejandro: Is he autistic? They were, I remember just all these types of tests, right? They were pulling me outta class.
[00:14:15] Kerly: So the the teachers had noticed that something, they couldn't put their finger on it they requested that you be tested.
[00:14:21] Alejandro: Exactly. They're requesting I be tested. There's something, we just can't put our finger on it.
[00:14:25] Alejandro: So yeah, they couldn't figure it out. They still didn't but they were like, okay. He has some type of learning disability, right? We don't know what it is. And so they did they put me like, I wanna say my junior year they put me in special education. And that first week the teachers, pulled me aside at their desk.
[00:14:42] Alejandro: It was two teachers. And they said, we don't know why you're here. We've got these tests, we dunno why you're here but we have to keep you here, but to keep you, what is it engaged, right? They wanna keep me engaged, so I ended up helping them be a student aid. So I'm now helping the children [00:15:00] with the actual learning disabilities.
[00:15:02] Alejandro: And I did, I was helping them, especially like in comprehension history. Like I loved history, Mr. Yurman was amazing. Now, he definitely kept me engaged where I didn't have too many, like EDS episodes. Because Mr. Yurman he was the, he taught us history and he was just very dynamic. Always showed movies.
[00:15:21] Alejandro: He was very animated. Everything had a story to it, it so loved him. 
Mentors and Boundaries
[00:15:26] Alejandro: And I also attribute a lot of my success too to, managing, all of this throughout my life is because I had amazing mentors. And that's what I encourage people, if they're struggling now, find a mentor.
[00:15:38] Alejandro: Because they can really help you. And what's amazing about mentors, if they're doing it right, there's never expectations on your mentor's end. They are there to just help you feel supported, that you're reaching your full potential. When you fail, they are there to help you along the way.
[00:15:53] Alejandro: They're not there to judge you and tell you that you failed. They are just there to guide you and give you [00:16:00] roads or whatever tools to just help you navigate the world. So I highly encourage, have amazing mentors. I have been blessed I mentioned I speak highly of my dad.
 
[00:16:14] Alejandro: Yes. Weird things happened in my life. The good news is when I was around 18, I told them everything that happened underneath the roof. And that was the most amazing thing because I was so afraid to be vulnerable because again, it was, I was expecting, ' cause it's always in my head, no, you're lying.
[00:16:30] Alejandro: But no, my dad was like, I believe you. He believed me and he supported me. So that was amazing. And again, the reason why I left, not, his home wasn't because of him, it was because I needed to get away from my siblings. That's what I needed to do.
[00:16:43] Alejandro: I needed to get away from them. I think I did it for a good 20 years or so. I just separated, and sometimes you gotta do that, I know that people believe that blood is thicker than water. I don't believe that, right?
[00:16:54] Alejandro: I believe in you gotta have people in your life. That support you, that love [00:17:00] you unconditionally. Okay. It doesn't matter the quantity of people you have in your life. Okay? But the quality matters. Yeah. So you have two individuals, one individual, that's all it takes. 
[00:17:11] Kerly: Yeah. There's no point staying in a toxic environment just because you have blood with that person. That's not enough.
[00:17:17] Alejandro: Exactly. And you know what's sad about that is, is that. We do that in the workforce, right? Not only are we, personally we're trying to navigate toxicity in our life, but then we get stuck in the workforce about it too. We get into a job that is toxic, we don't like, that's not good for us. That crosses our barriers, our core values. That's the one thing I want people to understand is recognize your core values. And once you start doing that, you're gonna realize, okay I need to do things that are good for me, that don't cross these boundaries, or at least I'm gonna set up these boundaries so they do not get crossed.
[00:17:53] Alejandro: But unfortunately, in life, we allow people to cross those boundaries all the time. I did. I just, I was just open [00:18:00] to you and told you how my boundaries were being crossed. I didn't know how to stop it. But finally, yeah, I stopped the sexual abuse at the age of 18, but the mental abuse that with that person I kept that person, that, that educator in my life until I was about 35.
[00:18:15] Alejandro: I was allowing those boundaries to be crossed to all the way up to that point. It was wild. And then I even let my, my previous corporate job, I was with them for a good 11 years. And it was a daily basis of my boundaries being crossed. I, and I allowed that.
[00:18:29] Alejandro: And now the previous employer, Macy's, who I was with before, they were amazing. Never crossed my boundaries, as an HR professional, I learned so much from them. It was amazing. And in all honesty, my first career was with JC Penney, right?
[00:18:43] Alejandro: I was a janitor. I tried to go to college. I couldn't do it. I think I lasted, barely lasted a semester. I tried. But I was fortunate, like in California if you're a veteran in the military, like my dad was they actually cover your tuition. There's like a benefit there where, your [00:19:00] tuition is covered 100%.
[00:19:01] Alejandro: And I tried taking advantage of that and I just couldn't, it sucks. So I was a janitor at JCPenney and within six months I ended up getting to stock work. And then that's when I got to start working for Jim GI Orso senior department manager. At the time they were called Senior merchandisers.
[00:19:18] Alejandro: And I just, mentor right there. He taught me some amazing things and he believed in me, like seriously believed in me, that regardless of me not being able to finish college and at that time in the nineties, like trying to become a manager, you needed that degree. But Jim b and Mr. Oliver they really supported me and it took a few years for me to become a department manager. But it happened because of Jim Gi orso's, support. Really, it was really his support. It was just nice to have a store manager back that up, especially when you're trying to talk to these recruiters and JC Penny that are only looking for people with degrees.
[00:19:52] Alejandro: But yeah, and it happened. That was amazing. I learned so much. Loved JC Penney, their culture. I can't say about it now, but back then again. [00:20:00] Amazing.
Diagnosis Turning Point
[00:20:00] Liz: Sorry, a Alejandra, I just wanted to ask something. All throughout your career, up until 38, you weren't diagnosed. What was the kind of tipping point into actually accessing a diagnosis?
[00:20:13] Alejandro: Absolutely. I was finally sick and tired of being tired of trying to stay awake all the time. It finally just became, it finally hit its head, right? I was living with it. I was struggling fighting it, but finally I got sleep deprivation to the extreme.
[00:20:29] Alejandro: It started when I was with Macy's, and again, I had amazing support. My director was so supportive, and I'll remember those days. It was during the time I'm a Freemason. Okay. And this is actually the time when I joined the fraternity and I'm going through my degree work and it's very intensive 'cause you have to memorize all this work. You go up in front and when you're ready to get this next degree, you have to recite a lot of stuff. And at this time I just, it was hard. And I remember there was a lot of times I was spending times in the bathroom trying to recite it because nobody can hear me do this [00:21:00] because you have to keep the secret.
[00:21:01] Alejandro: And there were times where I was passing out in the bathroom, I kept falling asleep and my director just like concerned knocking on the door. She doesn't know what's going on. And she just talked it up and maybe I was just staying up late, whatever, which I was, 'cause the circadian rhythm, sleep disorder so finally just, being embarrassed because again, my position I'm in front of VPs a lot and I'm like in meetings just doing this.
[00:21:22] Alejandro: Fighting it. And I'm missing discussions and work, my quality work is going down. I'm very proud of my work. So it was really going down. So yeah, so the final straw was this and it, this has happened before many times, but my final straw was this it's after work. I'm driving home. I get off the freeway, whatever. I'm at the stoplight off the ramp, and that's when I fell asleep at the light and woke up and I'm just like, okay, I can't be falling asleep in the car anymore. And believe me when I was younger, like in my twenties going from California into Nevada I remember one time I woke up in the opposite lane and heading on a logging [00:22:00] truck.
[00:22:00] Alejandro: A big logging truck. Didn't think about it then, but finally I'm like I've had enough. Yeah, I got a doctor's appointment, explained it to the doctor, what's going on? Hey, you might most likely have sleep apnea. So I'm 36 at the time. I wanna say no, 35 at the time, I wanna say 35.
[00:22:15] Alejandro: And yeah, got the sleep test, sleep apnea. Yeah, it took me about a good year to, figure out the mask situation. But once I became a hundred percent at the mask nothing was changing. I'm still now I'm working for this new corporation. And I'm just nodding out at my desk.
[00:22:31] Alejandro: I'm nodding out at meetings still. It's like I'm fighting and I'm tired. 
Sleep Clinic and MSLT Results
[00:22:35] Alejandro: So I have new insurance. So I'm now with Kaiser Permanente and they have a sleep clinic, which is amazing. They, Kaiser Menta here in Colorado has this cool sleep clinic and I just remember getting set up with a technician calling me, Hey, we wanna get you new equipment with your CPAP let's set up an appointment.
[00:22:51] Alejandro: Do you have any questions? And I'm like, that's when I finally asked a professional, what does it mean when I have sleep paralysis at night? [00:23:00] Oh you most likely have narcolepsy. That typically is the indication you have narcolepsy. Let's go ahead and get you set up an appointment with the pulmonologist.
[00:23:09] Alejandro: And so yeah, I got set up with the appointment with the pulmonologist and I answered, like the Epworth Sleep Scale, I answered the insomnia scale. And sure enough, oh yeah, you are sleep like sleepy, like the typical the, you know how the question is, how likely are you to fall asleep when watching a movie, it was like extreme
[00:23:27] Alejandro: So I get the MSLT and I didn't look at it because I just ran across my, my, and again, anybody. Word to the wise, keep your MSLT. So grab it, if you don't have it, make sure you request it, grab it. I have mine. So anyways I wanna say it was like maybe three minutes in REM sleep or five minutes.
[00:23:44] Alejandro: I can't remember. I have to look at it. But anyways, yeah, definitely going into REM sleep. So yeah. Okay. You've got an narcolepsy type two, that's what they're saying. Okay. Which I mean makes sense based off my MSLT. Okay. But I got this diagnosis and then, hey, what do you do when you [00:24:00] get a diagnosis of something you have no clue about?
[00:24:02] Alejandro: You research it, you start looking at what's online, and then that's when I was learning about mild cataplexy, and I'm like wait a second one. I laugh really hard. I'm slurring my words and my knees get weak, which is interesting. I was thinking about the other day. So I was very athletic too.
[00:24:18] Alejandro: So one of the things that also kept my mental state positive through all of this is, I mentioned how I needed to protect myself against my siblings. So at six years old I got into the martial arts by the time I was 13, no, 14, because that was the day the year my mom died.
[00:24:33] Alejandro: I got my first black belt. And that helped me a lot. Where was I going with this? But anyways, it, okay, so anyways, we'll back up here. Now remind me, I was going, I just had the brain fog.
[00:24:42] Liz: You were talking about like keeping your mental state well and the exercise that you do
[00:24:48] Alejandro: It's about, yeah. Again, me staying positive throughout my life is having an outlook on life. Being told that there's no such thing as failure. I remember my master instructor telling me that, there is no such [00:25:00] thing as failure.
[00:25:00] Alejandro: The good news, you get to do it again. Actually, that really helped me now face my test differently. The minute I heard that my exams for, school, I didn't have much anxiety over at that point. I'm like, you know what, if I fail it, then yeah, I will take it again. That's it.
[00:25:13] Kerly: Yeah. So that was good advice.
[00:25:15] Alejandro: Yeah. Yeah
[00:25:15] Kerly: To take the pressure off
[00:25:17] Alejandro: exactly. 
Pressure Culture and Bad Doctors
[00:25:17] Alejandro: Kerly you make a really great point about pressure. We, in society, pressure each other so much, right? It's either you're being, you are allowing people to pressure you or you are pressuring even your own self.
[00:25:29] Alejandro: I have done it numerous times. I'm no longer doing that to myself. But, two and a half, three years ago, I was still doing that, pressuring myself to, to, be better or putting myself down. Because, my work was going down, even though I knew , it was exhaustion I was sleep deprived, so yeah. That's the one thing I hope in society we can start teaching ourselves and really supporting ourselves, is to stop pressuring each other. I'm sorry for the language, but it's bullshit. Okay. And then this need that you don't get any [00:26:00] rest to get ahead you again, bullshit.
[00:26:02] Alejandro: It's not you're not gonna get ahead. Eventually you're gonna crash and you're gonna make a lot of mistakes. Or you're gonna treat people disrespectfully because you're just so sleep deprived. And that, and really that happened to me, right? When I'm so sleep deprived, I get really moody.
[00:26:15] Alejandro: I don't wanna deal with people. I might be snappy, I might be short. I might not have the empathy or compassion that I need or that person that, that actually needs it from me. People just don't realize. I see, again, being hr, I solve that in the workforce, and again, I saw that more than ever in my last corporate job where, you know, that was not valued at all.
[00:26:38] Alejandro: That rest, sleep is not valued. And again, it's the medical industry. The medical industry is the worst at it. They are forcing RNs, doctors, okay? Where they, are being forced to see more patients than ever. And at times what used to be a meaningful first consultation at 45 minutes at least, are now being shrunk down to 20 [00:27:00] minutes.
[00:27:00] Alejandro: And it's all because they have to have productivity. That's not helping the patient at all.
[00:27:05] Liz: I think in the UK it's 10 minutes now for a GP appointment. It's crazy.
[00:27:10] Alejandro: You know what it reminds me of, Mr. Oliver used to say this about customer service, right? He was a really big pro proponent on just making the customer happy, making that connection.
[00:27:19] Alejandro: And he would say, if you're gonna treat a customer poorly, it's like running them through a meat processing plant, right? They're just being processed, they're just being run through. And that is it. Or you make those connections, you understand the individual. For example, when it comes to having the MSLT that is just a tool, right? For the doctor to help potentially diagnose your sleep disorder. Okay? It's not 100%. So here's the doctor relying 100% on the MSLT. You have cataplexy two, I do my research. I realized, wait,. It's when my knees would buckle. Being an athlete. I was playing baseball when my knees buckle. I never thought anything of it. 'cause I was always sore, right?
[00:27:59] Alejandro: My knees were [00:28:00] hurting, because I was sore. So it's like you, okay? That's just because of me just always being an athlete. But. When I stopped being an athlete, that never changed. It never ended in my knees buckle. So when I brought that up to him, I'm like, here are the things that happened to me.
[00:28:12] Alejandro: You know what he said? He literally looked me in the eye straight face and said, there's no such thing as a mild cataplexy. Which, brings me to my point where there are some bad doctors out there that will never consider the patient's experience. They just rely on the depth, right?
[00:28:29] Alejandro: Too much. Again, MSLT is a great tool, but it's not 100% there's room for lots of error. Okay.
[00:28:37] Kerly: I find that absolutely amazing that you can say to someone, there's no such thing as mild cataplexy, but narcolepsy is not black and white.
[00:28:45] Kerly: It's not the same for everyone. So it enters each of our bodies, or it's already in the body or whatever. When it's released, it behaves differently to each person. So even though we have the same symptoms, how the symptoms make you feel, it's not [00:29:00] identical. So then you couldn't assume that every single person that had narcolepsy type one, their cataplexy would be identical, because each of us are different, and how it presents itself in each person's body makes it different.
[00:29:13] Kerly: So that's why it'll be more severe with one person like myself, if I'm not on meds, I'll be falling on the ground and someone else only has it in their face or their neck. That doesn't mean they're not having it. They're still having it. They're just not falling. That doesn't mean that they could be having micro mini cataplexy all day long, and I only have four falls in that same day, and they're having more, but because they're not as visible.
[00:29:36] Alejandro: And at that point, I he shot me down. I, I just was discouraged at that point. Like I knew No I have mild cataplexy and, and again, he was, at this time, I didn't realize it, but he was out, out on his way to retire.
[00:29:48] Alejandro: So he came from an old mindset. Okay. 
Treatment Options and Work Schedule
[00:29:50] Alejandro: And what was interesting is that, so when I was, when he diagnosed me with this treatment plan, and that was I remember he called, we had a conversation on the phone. We [00:30:00] had this, here are your options. One, there's this drug out there called Sodium Oxybate. It's called Xyrem. You can definitely take this. My only concern as a pulmonologist is that you have apnea and I'm concerned that it's gonna mess with your breathing because this does suppress your breathing. So right there off the bat, I'm already like, yeah I'm not gonna touch this drug.
[00:30:20] Alejandro: And then two, he's telling me I gotta take one dose when I go to bed, and then I gotta wake up two and a half to four hours later and take another dose. No, I'm not doing that. I'm already tired enough. Why are you making me wanna wake up and take another dose? No. So yeah, he's your other option is you can do amphetamines like Modafinil or Adderall.
[00:30:40] Alejandro: So I chose option B. And so he put me on a cocktail of Adderall and Modafinil. Now, keep in mind when I went to this new employer that's actually when I changed my whole work schedule. I was always used to working like nine to five kind of thing. And I was even a political director for the Democratic Party in between my, retail [00:31:00] careers and and still had a flexible schedule.
[00:31:02] Alejandro: Okay? So now I'm now having to work six to five, six o'clock in the morning to five o'clock at night. And now I'm like waking up four o'clock en forcing myself to do this. And to the point where now it's becoming a problem. I'm no longer able to sleep till noon. I can't nap anymore.
[00:31:21] Alejandro: It started becoming a big problem. Now the Adderall is also compounding that problem, right? That Modafinil Adderall, because when I'd come in at six in the morning to work, I'd pop my Adderall and at that time it's the extended ones. I take the extended Adderall. And then by noon is when I'm falling asleep again.
Stimulants And Insomnia Spiral
[00:31:40] Alejandro: And then I'd pop , the other short one, Adderall, but that would never do anything. And I'd also take the Modafinil, right? And again, it wouldn't help afternoon, anything afternoon just wasn't helping. I'd always nod out. But I kept taking it because at least I was on my, a game from six in the morning to noon, but, I was really messed up. There was a colleague that would [00:32:00] also show up in the morning with me, Rebecca. I, I still can't like get the image out of her face when I'm talking to her. 'Cause I was so just wired off the Adderall that I'm just like talking to her and I can see that at times like she just wants to tell me to shut up. But she was so nice, but I still see that facial expression. She's oh my God,
 
[00:32:29] Liz: we've all been there with Modafinil for sure.
[00:32:32] Alejandro: The problem was, is that what was happening is I take that, afternoon dose stuff by eight o'clock at night, then all of a sudden my circadian rhythm went into hyper drive.
[00:32:42] Alejandro: And now I can't go to sleep at all, so I'm like pulling Allnighters , just whatever I can do, and I did that for a few years and then yeah, around, I started noticing in 2017 a change in me, there was a few other incidents before that where I was having mood swings.
[00:32:58] Alejandro: I was really [00:33:00] paranoid about things. Like one incident, my poor wife, it's her 40th birthday, we're in the Bay area celebrating, and I think she wants to divorce me. I'm like telling my family this, like in front of her. I'm like freaking out, not like me at all.
[00:33:13] Alejandro: She's they didn't marry this guy, but we didn't know what was going on. And yeah, so in 2017 that became excessive. 
Work Fog And Panic Attacks
[00:33:19] Alejandro: Where people came to me for everything at work. They could come to me and I'd help them. I'd guide them with everything and everything. And now I'm noticing that when they come to my desk, I'm working on something, I'd help them and then I'd be stuck.
[00:33:32] Alejandro: I'd had this brain fog where it'd take me 30 minutes to figure out what I was doing to get back on track. That was driving me nuts. I started feeling like really anxious, like anxiety was insane. And I remember it was like in the fall. ' cause part of what I did for this company was I was, I managed their employee policies and their HR trainings, like sexual harassment.
[00:33:54] Alejandro: So not only did I manage 'em, but I also built stuff. And so what was interesting, what I noticed [00:34:00] that was alarming is, I started not caring, right? Like I just started having this attitude. I don't care anymore. People come to my desk, I don't even care about helping them. I'm staying awake all night. And then in fall I'm supporting the safety team and helping them develop some safety trainings. And I remember I was meeting with their SME subject matter expert to, start the conversation. And I'm here, I'm now working from home. So I started working from home in 2017, and I remember coming in through the door right here behind me.
[00:34:28] Alejandro: And all of a sudden, like this anxiety like where I am hyperventilating. Kicked in. I've never experienced anything like this. It was insane. And I managed to have this meeting and that was alarming to me. And yeah. 
Suicidal Crisis And ER Failure
[00:34:43] Alejandro: And then in December of that year I'm down in my basement around midnight, and that's when I'm finally having thoughts of suicide because I just wanted to go to sleep.
[00:34:50] Alejandro: I just wanted to go to sleep. Yeah. I, I'm thinking about oh my God, I can hang myself, let off, the wood beams, Hey, I'd go to sleep. It'd be great. But I know me, right? I do try to [00:35:00] maintain balance and I know if something's wrong, when I'm thinking like that's not cool.
[00:35:03] Alejandro: So what I did, and I'm out of my mind am like hallucinating things. I'm outta my mind and decide, oh my God, you're thinking about suicide. You need to take yourself to the emergency room. And yeah, I got out the car, what took myself to the emergency room, and that's when I discovered.
[00:35:17] Alejandro: Back to how healthcare fails you, is that emergency room failed me. Not only when I walked in, I'm like, I'm out of my mind. I'm, I go to the front desk, there's this guy behind the front desk. I'm like, I need help. I have narcolepsy. I am sleep deprived. I'm thinking of suicide. I'm on Adderall, Modafinil, and I think that's what's giving me these thoughts.
[00:35:37] Alejandro: I need help. Please. Just, I need help. And he's you need to fill out this form. And I'm like, I can't. I cannot fill out this form. I'm like, can you help me? No, we can't do that for you. And I reached to my pocket, grabbed my phone, and my wife doesn't know I've left. She's asleep at this time. And I hand my phone to him, but it slips outta my hand.
[00:35:57] Alejandro: So now I'm accused of throwing my phone at [00:36:00] him. He yells at me, don't you throw your phone. I'm like, can you just please call my wife? She can help fill this out. Hell no. He just was a dick. Yeah. So I finally was like, I can't, I'm like, you know what? You're an awful person. I said some stuff like that and I'm like, I'm outta here.
[00:36:14] Alejandro: So I go out to outside the hospital. I lay down, I sit down on the curb of the street and I call 9 1 1 because I know I can't get in the car. I can't get in the car right now. So I called 9 1 1 on myself. Tell 'em what's going on, how this hospital's treating me. The sheriff shows up. They actually walk me in and yeah, they get me settled.
[00:36:34] Alejandro: They get me into an ER room and then again the experience becomes worse. That is when the doctor is accusing me of being on other drugs. And again, I'm repeating myself. They did a drug test and everything, like they did that, and I'm like, I just want off Adderall and Modafinil. These are the drugs I'm on.
[00:36:52] Alejandro: I want off of them. And I'm sleep deprived. Just help me. I just wanna go to sleep, help me get to sleep. And they're just, he's standing here like [00:37:00] this. And then when I noticed that I'm, and I'm a person that understands body language and I'm like, your body language right now. And I told them, that is telling me you don't care about me.
[00:37:07] Alejandro: You don't wanna listen to me. I'm like, so you know what? I'm outta here. So I did. I got up I took the IV off me. I think I had an iv. I think I took that off. I got up, signed the paperwork that released myself and left, and yeah. Unfortunately I had to get back in the car and get home.
[00:37:21] Alejandro: When the sheriff brought me in, I did ask them to call my wife. So the sheriff did take my phone, called my wife and she's freaking out now. She's concerned. And she's an occupational therapist. Keep in mind.
[00:37:33] Alejandro: So when I got home, she calmed me down and we did go to another ER where we love St. Joe's and they were amazing. I should have went there first. And the reason why they're amazing because I've had, a couple spinal surgeries there. But I just went to the closest hospital. I didn't wanna go down to downtown Denver.
[00:37:48] Alejandro: So went there. Unfortunately, yes. Were they nice? But unfortunately they admitted, we're like, we don't know how to treat people with narcolepsy. All we could recommend is melatonin. And you all know we laugh when they [00:38:00] recommend melatonin, right? Like it was, my wife and I laughed, we're like, no, that doesn't work.
[00:38:04] Alejandro: Now because the other hospital treated me like a drug addict. I knew one thing that could have helped me now, but I'm not a drug addict. I don't seek drugs. And you probably all know this, that like a lot of us in common have is that like for my spinal surgeries, when they gave me those narcotics, one, I rarely took 'em because they didn't do anything for me.
[00:38:24] Alejandro: And that's because of the orexin issue. Because I have a deficiency in orexin, I don't get addicted to those drugs and I don't feel the effects of those drugs except for volume. And I remember because before my second spinal surgery, I had a spasm that I'd never experienced in my life.
[00:38:40] Alejandro: It blew the 10 scale away. And that's why I had to have another spinal surgery, but my wife had to rush me to the hospital and I remember it was a busy er and the doctor attending saw how much pain I was in and pulled me out of the waiting room and brought me in and gave me Valium.
[00:38:58] Alejandro: And that calmed [00:39:00] me down. And that's what I wanted to ask. That er, I was like, just give me Valium But I didn't, because again, I didn't want them thinking I was seeking drugs. 'cause I wasn't seeking drugs. I was seeking sleep. and if there was something that could help me, it was gonna be that at least.
[00:39:15] Alejandro: I think that would've been that. But unfortunately that happened. 
New Doctors And Diagnosis Shift
[00:39:18] Alejandro: Got home and so the good news is, that doctor, I mentioned the pulmonologist that year he did retire. So I have this new sleep doctor named Walter, and he was one of those doctors, he's one of the cool new doctors.
[00:39:30] Alejandro: Don't call me by my last name. Just call me Walter. There's Walter, and you know what's really cool being a minority. I finally actually have a doctor that's a minority, he's African American, right? I'm like on such a, I'm half Puerto Rican, and so I am, I embrace my African blood and I'm like, okay, I got this guy.
[00:39:47] Alejandro: He's young and he's on his a game. Like he's brilliant. And that's when he was like. You have mild cataplexy. So he changed the diagnosis to narcolepsy type one. He's the one. And then of course he was there for the whole [00:40:00] incident. They were checking to see if I was bipolar.
[00:40:02] Alejandro: I actually had to go to the mental health place at Kaiser. They had to just evaluate me, make sure I wasn't having any, permanent mental health issues, right? Which I didn't, they then even the psychiatrist's okay, this is all related to sleep deprivation. And after that, yeah, after meeting with Walter, we got off the amphetamines and then starting, I did go on a leave of absence for my job.
Xyrem To Xywave Adjustments
[00:40:24] Alejandro: About a month later or so is when I switched to Xyrem and now I was excited. I'm like, okay, forget about this. And even Walter was like, yeah, it's not gonna mess with your breathing. Your apnea is mild anyway, so don't worry about that. So yeah, I did, but unfortunately, even when I was titrating up the anxiety was insane.
[00:40:44] Alejandro: I remember, especially when I started work again, when I came back to work, yeah. The anxiety was insane where I couldn't think, I couldn't do, my quality of work is starting to go like this. Bad stuff, like bad brain fog, mood [00:41:00] swings and I was on Xyrem for, until they finally made the switch to Xywave
[00:41:04] Alejandro: So they made Xywave available. Now at this time, I think after a year, like in 2018 is when Walter actually became like the Dean of Sleep medicine in California. Because he was amazing. And I'm just like I got this new doctor, Sarah Richie. I didn't realize that she's now gonna blow Walter away.
[00:41:21] Alejandro: I'm like and yeah, not only did I get a sleep specialist, but I also got a psychiatrist. Yeah, she got her education in Duke. She got her psychiatry in Duke, sleep education in Stanford. 
[00:41:32] Liz: And what medication did she put you on?
[00:41:34] Alejandro: So that's when we made the switch to Xywave. And again, she understood the mental health issues I'm experiencing from the Xyrem. Now when we made the switch to Xywave definitely the anxiety I would say. It was at like, it was at a hundred percent on Xyrem and it came down to 25%.
[00:41:49] Alejandro: That definitely helped, but still issues and still some mood swings, night sweats and the common stuff that we get, the cramping, and also my other [00:42:00] issue with both of them, both Xyrem and Xywave, was this is that, yes, when I take the first dose I knock out, but when it's time to take the second dose, I'm wide awake.
[00:42:08] Alejandro: And when I was mentioning how my clock changed yeah. All of a sudden, now I'm waking up at two and I can't go to sleep, and that was happening and then talking with Sarah, also remember I was talking about how I'm working for this new employer that I've been with them for a decade now.
[00:42:23] Alejandro: I was with them for 11 years. They were crossing my boundaries right? So badly that I was always anxious over that. So the anxiety of that, and then the drugs increasing the anxiety. By two o'clock, when I take that second dose, I'm thinking about work, right? I'm thinking about how I'm failing at my job, even though that's not the reality, but that's what I'm telling myself, so really it was always scary. Sundays for me, every day was scary Sunday, okay? And so it was keeping me awake. And so the anxiety was overriding the drug, and that's exactly how she explained it. And [00:43:00] I believe in that, I believe that yes your brain is powerful to do stuff like that, right? So yeah.
Small Wins And Daily Routines
[00:43:04] Alejandro: But again, hey, I was able to survive and do things and keep in mind during these times. I'm in complete isolation. I don't wanna hang out with friends, but I am doing some things that at least is keeping me balanced enough to where I can function. So when I started working from home, one of the things I started challenging myself was, is go on a walk.
[00:43:24] Alejandro: Take a break, go on a walk. And it started. Small wins everyone. I'm all about small wins. I've always been like that through my life, right?. Hey, walk that half mile first, right? Small win. It got to the point, becomes a mile, now, my dogs and I we're snowing the routine.
[00:43:37] Alejandro: We're walking a couple miles at least minimum a day, right? That's our thing. And then I also got into yard work. We built this beautiful home, back in 2017. And so I love doing yard work. , I did a session on small wins and I used the example of.
[00:43:52] Alejandro: It's amazing when you can just go mow your lawn, right? Trim it, make it look beautiful, step back and you're like, yeah, I did a good [00:44:00] job. I'm fine. Or the other day, the cable guy was here to do some work, and I'm outside talking to him.
[00:44:04] Alejandro: He's man, your block lawn is so green and the edges are perfect. I'm like, small win. It feels so good, especially when you're, you're in a day to day of a job where you're struggling to even recognize your small wins because you're so on those big ones, right? ' cause again, yeah, I get it. I've been there.
[00:44:20] Alejandro: You wanna get the attention of those executives, of your boss so that people are talking about you in those succession planning conversations, right? I get it. But we forget about those small things . And if you can remember 'em, then you won't be tearing yourself apart.
 
[00:44:39] Liz: Alejandro, is it alright if I ask you a question?
[00:44:42] Alejandro: Oh, please interrupt me too. I can talk and talk yeah.
[00:44:45] Liz: I'm just aware of the time because we probably only have about 10 minutes left. . And it sounds like you've had so many kind of challenges throughout your life, starting in childhood, and you've also had a really quite intense and varied career. I'm [00:45:00] just wondering how, whether those things impacted you to go into advocacy or how you ended up going into being a, an advocate for people with narcolepsy and disabilities.
Finding Purpose In Advocacy
[00:45:11] Alejandro: I was, like I mentioned before, I had parents that were amazing and they were also advocates.
[00:45:16] Alejandro: Again, I can go, they both did rallies. My dad was helping the farm workers back when Caesar Chavez around marching. So that's in my blood, right? It's always been in my blood. I've always been there to help anyone. Like even when I was in school, when I'd see somebody bullied, believe me, I was challenging that bully.
[00:45:31] Alejandro: I was protecting that person, getting bullied always. And and that's another reason why when I was at JC Penney for I was with them for seven years. I got my assignment in Carson City. I ended up meeting former he's now deceased, but he was our former us senate majority leader Harry Reid.
[00:45:47] Alejandro: He ended up becoming my mentor. So I ended up becoming political director of the Democratic Party, and that's where I actually got to discover my, advocacy skills right then and there to experience that. And yes, to answer your question, [00:46:00] it's been my experiences, everything that I've lived up through.
[00:46:02] Alejandro: I think even this last employer that I mentioned, even though yes, it was a tough time. I'm blessed that I went through it. Okay. Because then I can share that experience and I can help people, share that experience and maybe help them navigate it differently. So that, that was an experience for me.
[00:46:16] Alejandro: And yeah, so I got into advocacy actually when I was severance by Davida, actually. I worked myself out of the job and they did offer me another job to stay, but I said, Nope, I wanna do something different. And wake up narcolepsy had. A position opened up, it was a patient advocacy manager. I'm like, I need to get back into advocacy.
[00:46:34] Alejandro: And so I started there, but unfortunately just funding fell through not their fault at all. I think it, again, I was meant to be there because it opened up this world for me, I've never been engaged with a narcolepsy community. So it opened it up for me. And then unfortunately, yeah, I lost the job and was unemployed and I redid some rediscovering of myself and yeah, then I ended up getting this job with PWN for PWN.
[00:46:58] Alejandro: Now, the other thing too [00:47:00] is that when I left, that last employer, I did get off the sodium Oxybate and that was the best thing. I did do for myself. Nothing against them. I think they work wonders for other people. They really do. I hear amazing success stories.
[00:47:12] Alejandro: Okay. They are, again our conditions, there's just so many what ifs. And that's why I always get back to the point of doctors need to understand that. It's not as 100% as some believe. There's a lot of, like Kerly you mentioned we're all different how we react and do things, it's not 100%. So what I did is, I took a month or so off of the oxibate just to get that out of me. 
Microdosing LSD Breakthrough
[00:47:32] Alejandro: And I switched to microdosing psychedelics. And that has been a game changer for me.
[00:47:37] Liz: Wow. Microdosing, psychedelics.
[00:47:40] Alejandro: I started it'll be two years ago in December.
[00:47:42] Alejandro: So what I do is I microdose between 10 to 30 micrograms of LSD. Here in Colorado, psychedelics are decriminalized which is amazing. So it's a great opportunity. So yeah, and off the bat I noticed that the first time when I did it and I was only doing once every week at that [00:48:00] time I did it for six months at that frequency. But that first week I didn't experience any paralysis. The first time in my life I did not experience paralysis and I didn't experience the excessive daytime sleepiness either. 'cause it, after getting off the xyrem and xywave it creeped back in.
[00:48:17] Alejandro: I was experiencing it. And I was also now becoming more active. I didn't wanna isolate. So things were changing. Now when I did bring it home for the first time, my wife was very upset. She called me a druggie. You name it, we, we had that conversation and, two months later, after consistently doing it that's when she said, babe.
[00:48:38] Alejandro: I know it's the LSD, but I feel like I have my husband back. So now after the six month mark, I realized this is working. It's not the placebo effect. So yeah, what I do now is I follow , a frequency that is one day on, two days off. And then it's also three months on, one month off.
[00:48:56] Alejandro: And so when I do the one month off, typically at the three [00:49:00] week mark is when the excessive daytime sleepiness starts to creep back in. So yeah, I say people to like this. You are seeing, the very energetic Alejandro, that's who you're seeing right now. I have energy, I sleep well. I don't even have the circadian rhythm issues anymore.
[00:49:14] Alejandro: I'm like passing out like at nine o'clock at night and stuff like that. It's hard. I'm now sleeping until eight. In the morning. It's truly amazing.
[00:49:22] Liz: Do you follow the advice of someone who or have you just worked it out as you've gone along?
[00:49:27] Alejandro: Back when I was younger, when I was like around 13, I experimented with LSD, but at the high doses and I noticed that I was feeling amazing at that time.
[00:49:37] Alejandro: I didn't connect the dots like my friends were experiencing LSD differently than I was. And I was able to sleep, I was noticing that at that point. But I didn't put two, two together. Now, after about a year or so, I stopped doing it because again, I didn't know the source. I didn't know was I really getting pure LSD like I am now. So yeah, I mean it's it is it's been a great a great experience. 
Psychedelic Science And DMT
[00:49:59] Alejandro: So [00:50:00] I follow a pharmaceutical company called Mind. They are doing clinical trials out in New Zealand.
[00:50:05] Alejandro: They've been doing that for a couple years or so now. They are, they're the only pharmaceutical company that are doing clinical trials on take home, LSD, microdosing, LSD. And they just enrolled their last participant for their clinical like two B trial for major depressive disorder.
[00:50:22] Alejandro: So their last report, like around almost a year ago the participants in that a trial 65 or 60 or 65% went into remission with their depression. Amazing, game changer. Again, they're not taking this on a daily basis. They're taking it one day on, two days off.
[00:50:38] Alejandro: And they're taking between, I think, 10 to 25 micrograms non hallucinogenics. So let me make that clear. 25 is non hallucinogenic. You're going about your day, right? Yeah. So you are, you just, you can drive, you can just go about your day. There's nothing weird going on. You're just, you're awake, right?
[00:50:58] Alejandro: You, that's what, for me, that's [00:51:00] how I describe it, because I'm not dealing with depressive disorder. And yeah, that's going on. I truly believe in it. Follow mind bio. Now their very first clinical trial that they ever did. Now, keep in mind clinical trials are weird.
[00:51:12] Alejandro: They always start with male healthy patients. So male healthy patients was on sleep. They actually did their first clinical trial in sleep. And guess what they found? The day after dosing. So post dose, the day after, these participants were gaining between 20 and 25 minutes of sleep..
[00:51:31] Alejandro: So there's a lot of potential there. Now the other one too is, and I also follow prominent doctors that have been in, in the psychedelic field for decades. But the other thing that I also do a couple other things is now I do on a rare occasion, I do journeys with psychedelic mushrooms.
[00:51:50] Alejandro: I'm also a psychedelic mushroom grower. And my goal is to be able to provide that to our people at a low cost or no cost at all. So right now a group of us are in a [00:52:00] development phase, we're in discovery what that looks like. So right now the discovery is growing at scale and determining what that skill is.
[00:52:07] Alejandro: Yeah. There's also that. And then the other thing too that I'm a big proponent for that I've actually just got into last six months or so, is DMT. DMT is another game changing molecule. Now everybody's familiar with like ayahuasca. Now DMT, it's something that's again, natural it plants produce it.
[00:52:27] Alejandro: We produce DMT, it's in our lungs, we produce it. That is also very game changing because what, like LSD, but DMT does it, I think even more profoundly it helps rebuild neurological pathways. So that's my other thing of psychedelics are neuroplasticity, right? Where you're doing the psychedelics and they are finding that you are literally building neurological pathways.
[00:52:52] Alejandro: And so there are some clinical trials going on with DMT involving stroke patients where they're discovering those neurological pathways are [00:53:00] rebuilding. Amazing stuff out there. So I'm a big proponent of that, and yeah I definitely feel that we're, we're definitely in a different era now, right?
[00:53:08] Alejandro: Where, like for me, I don't have to be underground about it. And I'm talking about it, letting people, now again I know I could talk about it, but again, it's cautious. I, people, I always tell people, I'm not selling you to go do it. It's not that, but I'm just gonna share my experience.
[00:53:22] Alejandro: But I do encourage people to look it up, research it. There are some amazing, medical professionals out there. There's Andrew Gilliam. So when it comes to DMT, Andrew Gilliam he is a pharmacologist, somebody that develops drugs, okay. That is a huge proponent on DMT.
[00:53:37] Alejandro: And he also has set up clinical trials. So there's those critical other clinical trials going. So there's a lot to delve into there. There's even a physicist that is doing stuff with EMT from that standpoint, so very, educated people. And that's the beauty of this, that we were in a phase in our lives, back starting in the sixties where people weren't able to talk about it, but now you're [00:54:00] seeing the mental health and the medical professionals are starting to come back out.
[00:54:03] Alejandro: They're like, yes, we're doing this again. This is amazing because it's very promising. 
[00:54:07] Liz: That's so interesting. And unfortunately, I don't think psychedelics are legal in the uk, but maybe one day they'll be decriminalized. Especially with the growing evidence, like you say, from clinical trials,
[00:54:19] Alejandro: exactly. And again, I'm thinking, and there's different pharma know there's also. Lycos that's here in the United States that's doing clinical trials on MDMA. Yeah. It is very remarkable. I encourage people to follow maps that is a nonprofit organization here in the United States.
[00:54:33] Alejandro: They just had their big event here, world Psychedelic day, here in, Denver. So definitely follow them. A lot of great stuff coming out of there as well. And again, there are just, there's some people, wealthy people out there that, across all political spectrums that are supporting this.
[00:54:47] Alejandro: And also, I don't wanna forget though, because again, I celebrate my indigenous culture, me being Puerto Rican, my tattoo here is Dino, right? We, those are the indigenous people of Puerto Rico, and we can't leave them out because it's [00:55:00] because of the indigenous people that we have psychedelics, like magic mushrooms, like DMT.
[00:55:05] Alejandro: Now, of course, LSD was discovered by Albert Hoffman back in the, late thirties. Different. But again, LSD is the 25th molecule of, the fungus. Argot, a lot of people don't realize that, that it, it comes from the fungus argot, the 25th molecule. It was just synthesized.
[00:55:23] Alejandro: And it is it's the cleanest, it's non-toxic. It's amazing.
[00:55:27] Liz: Wow, that's awesome. Yeah, we definitely can't have the white men claiming everything. So
[00:55:32] Alejandro: thank you, Liz, for saying that. 
Men Speaking Up And Red Button
[00:55:34] Alejandro: And speaking of my other message too is that, one thing I love about your group because you hit it on the head, our community and also the organizations, and love our organizations.
[00:55:43] Alejandro: They're doing amazing for us, but they're all female dominated, and it's not intentional, it just happens to be the majority are female. And one thing, Kerly, I remember when I met with you and Iris, you're like, we need more men to come out and speak, right? And so my message to men out there, if you have the [00:56:00] diagnosis, come out and speak, right?
[00:56:02] Alejandro: But guys. If you're experiencing any of the stuff that I described that I was going through, except for daytime sleepiness, , people calling you lazy. You know you're waking up and all of a sudden you got the munchies that, that's the other issue I got. You got sleep paralysis. It's time to talk to a specialist about it.
[00:56:18] Alejandro: Get the diagnosis. Don't avoid it anymore. Macho is out the door. We don't need macho. Macho is not serving us in the world anymore. It really is. It never has. We are better when we are working together, right? When we can solve problems together and we guys, we need to step it up and come help these ladies run this and make this better.
[00:56:39] Alejandro: So that's my message.
 
[00:56:48] Kerly: Do you wanna ask you a red button now, Liz?
[00:56:50] Liz: Yeah, sure. So the final question of the podcast . If you could press a red button and never have experienced [00:57:00] narcolepsy, would you press it and why?
[00:57:02] Alejandro: I would not. Because I'm here today because of it. My, my purpose in life is to, do this, to be the advocate, right?
[00:57:09] Alejandro: My purpose in life is to help people feel that they are getting that support that, you know, in reaching their full potential. I wanna help people. And so if I press that red button. It eliminates that. I used to think about that too. If I got my diagnosis, was I, when I was younger as a kid, would I be thinking differently?
[00:57:25] Alejandro: So yeah, really, no I think that having narcolepsy has been a gift. It's really weird because even when I was a kid and going up through adulthood and having the paralysis and having the lucid dreaming in the back of my mind, I'm like, I have a gift. I'm gonna utilize it.
[00:57:40] Alejandro: Really, we do have a gift, but at times, it gets scary. Take advantage of those lucid dreams, don't be scared of 'em. And yeah, there are some tough times though, but I'm just, I think it's just important to get that diagnosis.
[00:57:51] Alejandro: Not as a kid, but maybe when I was an adult, getting the diagnosis earlier would've been better, right? 'Cause then it would've helped me understand some things better. How about you? [00:58:00] If you're in the press of red button, would you,
[00:58:01] Liz: it really depends on the day that you ask me, right?
[00:58:05] Alejandro: Yeah. Good one, Liz. Good one. How about you? Kerly?
[00:58:08] Kerly: Yeah. The same. It depends on the day. Most days I would say no, it's fine, because I wouldn't have met the people that I've met and the community if I didn't have it. Exactly, but on the bad days. Yeah. Catch me on a bad cataplexy day or a day when I'm on my period and the cataplexy is worse.
[00:58:24] Kerly: If you're experiencing a lot of pain like I was and still not sleeping, then Yeah. Then I wouldn't even, there's not a thought.
[00:58:31] Alejandro: Oh, I'm telling you. There's just so much going on there. Yeah. And believe me, had you asked this question two years ago, I would've answered it differently.
[00:58:38] Alejandro: Really I think that, I really do. I feel like I'm like my younger version now where, yeah, I wasn't, these things were happening, but I still had this energy, this outgoingness about me and, it really, the whole isolation and everything really happened.
[00:58:51] Alejandro: Like I described when I was at Macy's, that's when everything just hit the head. That sleep deprivation finally caught up to me, but now I'm not dealing with that no [00:59:00] more. And so now I just wanna be able to help people, hopefully achieve what I've achieved. And there's no pressure, there's no judgments.
[00:59:07] Alejandro: We all get to where we need to go differently, and that's freaking beautiful about life.
Closing Thanks And Community Links
[00:59:11] Liz: Alejandro, thank you so much for your openness and your authenticity while sharing your story with us. I think our listeners are really gonna connect with you. And yeah, thank you for talking about your such varied career and how you ended up in advocacy work as well.
[00:59:27] Liz: It's amazing what you've been doing.
[00:59:29] Alejandro: Absolutely, Liz. Yeah, it's been great.
[00:59:31] Kerly: Thank you very much. So we like to end by saying happy, napping, everyone.
[00:59:36] Liz: So after 3, 1, 2, 3
[00:59:39] a: I love it. And again, anybody out there if you all wanna talk, I love talking to people. So yeah, you could reach out to me at alejandro@pwnpw.org.
[00:59:50] a: Love to set up a time to chat. I don't care where you are in the world, we'll figure out a time slot that works for us. I do, I love to connect, or if you wanna join, PWN for pwm, [01:00:00] we have our community, digital community that you can join. Just go to our website, pw n for pw.org, and click the join here button.
[01:00:09] a: Love to have you. We got some great programs. Check them out on the website, but if you'd like to talk about 'em or just wanna talk one-on-one, share your experience. Or if you wanna be one of my guests on Snapchat, let's talk. Love to have you. Yeah. 
[01:00:23] Liz: Thanks, Alejandro.
[01:00:24] Alejandro: Thank you so much.
Patreon And Podcast Outro
[01:00:25] Speaker 2: Narcolepsy Navigators is excited to announce our new Patreon and merch store. You can choose to support us monthly via Patreon and receive bonus content from our advocacy and medical series, as well as a shout-out on the show. Subscribing to our Patreon will allow you to have access to Narcolepsy Navigators Discord server, where you can chat with other navigators, find support, and ask questions to be featured in future bonus episodes.
[01:00:58] Speaker 2: Higher tier supporters can [01:01:00] also receive Patreon merch. Or if a monthly subscription is not in your budget, you can check out even more merch on our website, www.NapsForLife.com. This week, we would like to have a shout-out to our very first Patreon supporter, Katie, and our second Patreon supporter, Jane Powell.
[01:01:25] Speaker 2: Thank you very much for your support.
[01:01:31] Speaker: Narcolepsy Navigators is produced by a team of volunteers working for the Naps For Life CIC, which is a non-profit group dedicated to improving the lives of people with sleep disorders through community action. You can help grow our podcast and join our sleep disorder support group by visiting the website [01:02:00] www.napsforlife.com.
[01:02:00] Speaker: If you or someone you know has a sleep disorder and would like to share your story on Narcolepsy Navigators, please email us at narcolepsynavigators@gmail.com. You can also support us by donating at the website. Happy napping, everyone.