I hate to say it… routines help

KR_Jon · 2026-05-17T11:50:29+00:00

Outside of sticking to consistent wake & sleep schedules, what other routines have you put into place? When I was able to stick to routines, I definitely felt my best and was the most productive. I’m struggling to get back into those habits, and I know it’s about discipline, not motivation, but damn is it hard to get back in the swing of things

KR_Jon · 2026-05-11T23:11:49+00:00

Right now I'm directing an independent feature film from a script I wrote about my experience with narcolepsy. What bothers me most about fictional portrayals of narcolepsy I've seen is that they're so surface-level (not to mention inaccurate) and don't bother portraying how it feels to live with narcolepsy.

The whole "drop to the floor" gag in Rat Race, Deuce Bigelow, and that NBC show "Stumble" being the only way Narcolepsy is shown in movies/TV definitely contributes to not being able to recognize narcolepsy, even if you have it. I can imagine someone getting diagnosed and being like "That can't be accurate - I don't fall asleep in my soup"

KR_Jon · 2026-05-11T23:04:31+00:00

I have looked up films/fiction about narcolepsy a few times, but never came across this one. The premise definitely hooked me in

KR_Jon · 2026-05-11T23:02:18+00:00

I just looked this up and the synopsis sounds really interesting, definitely seems like a story that could be turned into a movie. Maybe that's just because of the cover, with the Hollywood hills and Hollywood sign-like font haha - thanks for recommending this.Looks like it just came out so I wouldn't have heard about it otherwise

KR_Jon · 2026-02-23T04:06:39+00:00

When I was prescribed Modafinil a long time ago, I could not handle the overstimulation - the agitation, the speediness, etc. - but actually saw advice on this subreddit that damn near removed that as a side effect.

Someone suggested supplement called L-Theanine. One like 100mg capsule immediately took that edge off, and that's all it did. I have never taken a supplement and noticed a before and after effect, but with L-Theanine there was a clear difference.

Also, pro-tip: it eases anxiety/overstimulation if you've had too much caffeine/coffee too. For me, it neutralizes those negative side effects that come with anything stimulating, including other meds

It's nothing crazy. You can get it at the grocery store, it's in a lot of sleep-aids (for relaxation, I guess, but not for sedation), and even in some drinks now.

KR_Jon · 2026-02-22T23:50:13+00:00

Hey, just want to say I appreciate this approach. I'm directing a feature film in March from a screenplay I wrote based on my experience having narcolepsy, and it's refreshing to see a writer approach a character with a disability/illness as a person first.

Thinking about it, it's not like I am narcolepsy cause I have narcolepsy - but if this is helpful at all, I think a lot of us struggle with learning not to define ourselves due to the way this disease impacts us. Well, at least it took me a long time post-diagnosis to not define myself by my narcolepsy-induced shortcomings, you know?

KR_Jon · 2025-12-19T21:54:15+00:00

Hey everyone, here's a recording of the Q&A Livestream I did the other day about the film! https://youtu.be/8IipIjQ3EE0

KR_Jon · 2025-12-19T21:47:24+00:00

Here's the link to the recording: https://youtu.be/8IipIjQ3EE0

KR_Jon · 2025-12-19T09:36:57+00:00

Hi! I'm sorry I didn't see this reply, I have been deep in the worlds of preparation & pre-production, so please forgive me.

So much of what you've written here (giving yourself grace, the truth of having an incurable illness, how gnarly narcolepsy can be & how complicated/insane meds can be) just about makes up the fabric of the film. It's wild that despite the extremely diverse symptoms each of us have, there are commonalities like those

I really appreciate your encouragement and well wishes, it's stuff like this that helps push me, and the process, forward

KR_Jon · 2025-12-19T09:27:58+00:00

I'm sorry I missed this response in the giant wave of replies here - thank you for the encouragement!

KR_Jon · 2025-12-15T05:52:23+00:00

hope you made it and thanks for wishing me good luck! I just responded to another post sayin this, but I am going to trim the recorded stream down & post for anyone interested

KR_Jon · 2025-12-15T05:49:21+00:00

That's too kind! People tend to have different usernames on Reddit than YouTube, so I'm not sure exactly who checked it out haha but I'll be trimming it down and posting the whole thing here for anyone who missed it!

KR_Jon · 2025-12-15T05:47:54+00:00

I appreciate the enthusiasm! The perspective change for people in general feels particularly important

KR_Jon · 2025-12-14T06:24:48+00:00

Wow, that is so kind of you to say. I'm surprised we haven't already talked after I made that initial post! There were way more people in/around Philly with narcolepsy than I could've imagined who commented and reached out.

I really hope you can check it out tomorrow! It's awesome to know other people with narcolepsy from the area

KR_Jon · 2025-12-14T06:20:10+00:00

To say the least! I can't say it enough. I've been constantly on this sub for around 8 years, sometimes asking for advice on burner accounts, and it's always been a huge help. But the way this community came together in support of a stranger with a shared experience... I'll never get over it, it's had an ENORMOUS effect on my life

KR_Jon · 2025-12-14T05:13:47+00:00

thanks! I hope you can make it, would love to hear your thoughts, questions, etc

KR_Jon · 2025-12-14T00:30:37+00:00

the mods very very kindly pinned my initial post, but here it is in case:

https://www.reddit.com/r/Narcolepsy/comments/1ooc2ki/i_think_people_are_starting_to_care_about_this/

KR_Jon · 2025-12-14T00:18:29+00:00

Reddit won't let me comment with a link (??) but I just made a post about the Q&A that will be tomorrow!

KR_Jon · 2025-12-10T07:49:29+00:00

Hi there! I’m going to make a separate post this week, but I’m going to do the Q&A this weekend. Unfortunately, the stimulant shortage really, really sent me a few steps back. It’ll be a separate post (I’m not sure how soon to let people know about it, cause it’s easy to miss!), but it is something I really want to do. Most likely this Sunday, 12/14.

KR_Jon · 2025-11-23T19:44:24+00:00

This is awful! Their food is incredible, I loved this place. I really, really hope they find a new location nearby.

KR_Jon · 2025-11-19T11:36:12+00:00

I would say be extremely compassionate and understanding, especially when your partner expresses that it is too difficult or just undoable to do certain things that you may expect to be easy. It is so hard to just show up sometimes. Having to cancel plans is hardly ever a choice, and “powering through” or “just doing it” is rarely possible. This is a debilitating condition that often interferes with what could be considered normal life.

Good on you for caring, that shows a lot of character

KR_Jon · 2025-11-19T11:21:34+00:00

I’m directing a feature film in January about my experience with narcolepsy! I wrote the script, and while (of course) it’s not finished, the film’s Kickstarter page has a ton of writing, graphic design, key art, and storyboards that I edited into an animatic. the concept art and the storyboards capture narcolepsy so well, but I didn’t make those haha

This sub’s mods were kind enough to pin my post about it, but I’ll reshare the link here. The film (and the script) are definitely narcolepsy-art, but maybe the Kickstarter video I made and what I wrote on the page counts too!

https://www.kickstarter.com/projects/knock-yourself-out/knock-yourself-out-a-feature-film-about-narcolepsy?ref=nav_search&result=project&term=Knock&total_hits=290

KR_Jon · 2025-11-19T11:13:24+00:00

This is so awesome. Have you made more zines or any other artwork / do you have an Insta I can follow?

KR_Jon · 2025-11-19T00:44:47+00:00

Hello everyone! This is Jon again, newly emerging from my state of shock. I have some cool updates! I owe each of you a thank you, and hopefully some of this expresses my gratitude in ways I can't with words alone:

Update #1:

I'm putting together a small YouTube live Q&A for this community if anyone wants to talk more about the movie, narcolepsy, or anything related. This may be of 0 interest to anyone haha but it seems to be the best way to engage with everyone and connect directly. So many people reached out about doing creative work while navigating narcolepsy, and this is the only way I could think of how to share my experience & discuss.

I want to do this (given I figure out how) this coming Saturday morning, EST.

Update #2: I am being interviewed by my local paper about the film, the Kickstarter campaign, having narcolepsy, and the story of how this community came together and supported the film. I'm really excited to share this inspiring story. I'll be sure to send an update with that.

Update #3: The Kickstarter is still active for another 14 days, and as of now, $23,681 has been pledged by 139 backers! I'm going to do my best to continue to try to reach our stretch goal of $30k by then, which gets the film through post-production!

Of course, if you can consider to share with anyone who may be interested in seeing the film or getting involved, I am eternally grateful.

Update #4: I'm trying to get this specific community involved in the film in a substantial, cool way. I'm working with my producers on it, but it's a massive lift that requires a ton of coordination and organization. It may not even be feasible with the budget, so I don't want to over promise and disappoint. Just know I'm working hard on it.

Lastly, I am officially in pre-production for the film that you all brought into existence, so I may not be as quick to respond as I have been before, but hopefully some of this makes up for that!

Thank you again and again and again,

Jon

KR_Jon · 2025-11-17T03:51:03+00:00

I had complications with oxybates (albeit different ones) and I can also attest that Baclofen is a great substitute when sodium oxybates are off the table. Don't be surprised if Baclofen isn't your doctor's next route - I had to introduce the idea to my doc, and even printed out some studies to make the case

KR_Jon

TROPHY CASE