Відео

@@jaysonthomas630 ouch

No problem, appreciate the comment. Feel free to scope out my website, books, and/or Patreon; I explore into depths on Cataplexy, that most people are unwilling to begin to venture towards!

Indeed, and I'd get something wrong if I tried to name them! LoL

An un treat able (tried for almost a year but was only problematic) rare Idiopathic Central Apnea and Delayed Sleep Phase Onset Syndrome/Disorder.

Thank You and Happy Mother's Day! =]

So, there is the visual version with heavy imagery as seen in the video preview, there is also a no imagery 'raw' version which includes all the same text. The 'raw' version is very much like a guidebook/field guide. Either will help to solidify one's understanding and recognition of what they're dealing with, offering some insights, clarity and depths into the symptoms, as well as sleep disorders and the different categories which exist. The imagery version 'DIS' isn't meant to tell a story but to help make more apparent, what is the 'living patient experience/reality' of having the disease, and especially Type 1, having the symptom Cataplexy. It'll all vary from person to person, but there's a huge disconnect out there around the subject, and that goes for the common doctors too who most of are just out of touch with both the science and the living patient experience. I wrote the book to be in an academic fashion (consisting of ~45 citations and links to the different organizations helping the efforts towards new meds, which will be coming in the next few years..). My books are meant as much for doctors as patients, I am proud of what I put together in these two; the 'raw' version was an afterthought, but makes a great little table book, which I'd say belongs in every sleep clinic, facility, and office. Would love to hear/see/read any feedback from whoever reads, any of my books. And, thanks for commenting!

Thanks for the comment. I created some books for awareness, for doctors and patients. www.amazon.com/dp/0989991989

Thanks for letting me know, appreciate that! There are some other on the channel and I'll definitely do more. =]

It's hard and a struggle. To be totally honest, since Covid, I've lost a lot of the drive I had before, though I'm attempting to get it back gradually. I've really parted from the skate scene, just by being isolated and not actively out there regularly like I'd been for years. That part really happened a while before Covid. As far as finding a sense of autonomy in the weak moments, I think familiarity and being comfortable with your own extents of Cataplexy, like being able to tell when it is breaching beyond minimal into moderate (freezing/physically impacting beyond subtle like) or severe (collapsing), can be important. Knowing when to step off and/or get to the ground, as well as when to call it and take a break or stop for the day, is how I approach it. For me, I know after 10-15 minutes, my literal inner strength and/or power to skate doing tricks or more than just rolling, fades quick and I'll become way more prone/susceptible to Cataplexy hitting. Naturally, I basically realized that many years ago and can only dream back to when I could skate endlessly with power and strength through the day and/or night... So basically, I try an stay in a comfort zone more than progressing tricks, sometimes I'll still push that boundary somewhat but I think it's really about knowing my limits and boundaries. In regards to confidence and being out exercising like this, the way I see it for me is, skating is a passion and something very deeply rooted in me, as for so many years I did it daily. One part, is likely trying to maintain some physical capacity and to be able to still be flexible, in that I do daily stretching, light exercises (like squats) and also riding my bike on the regular (which I really let go of during covid and am trying to get back on top of, doing groceries and just riding around some miles, when I feel up for it), I try to achieve some extent of meditation during the stretching/light exercise routine, being totally focused on my core and body, counting as I do whatever or as I breathe (sort of say like tai chi and/or yoga). The other part, may be an oddity or maybe not, but basically I really stay focused within my own narrow path, I am not very socially outgoing and I think people who are familiar with me know such so they don't go out of their way to engage with me. That's a bit of a double sided edge but, I accept my place and situation, in ways I could care less what others think, especially when it comes to how they see me, but at the same time I don't want to be burdening nor a creep, I basically just try an be friendly when engaged with and just stay focused in my own zone. Not sure any of that is helpful or even actually interpret able, but in the end, it's about both getting some pleasure out of rolling, releasing those inner tensions somehow (which skating has always done for me), maybe maintaining my basic abilities though not pushing too hard, and remaining comfortable with my situation. Too many times, when I begin to engage with others, there's a real painful rebound effect just to do with social behavior, interpersonal communications and/or connections; so I sort of feel I have to basically avoid that side unless someone is really wanting to, and happily engaging with me. Good luck, get out and roll around, have fun with it, be safe and don't fret the unnecessary, or irrelevant, stuff, when/if possible! =]

And, Thank You, am happy to hear that the video inspires you!

If I didn't have an idiopathic central apnea matter, I could try it. Glad to hear it is working for you!

Very glad it helped you figure something out, that's the reason it is posted, to spread awareness and in the hopes of helping others with the condition, figure it out for what it is. There's so much I could say, I think the most valuable thing one can do, is dive into grasping knowledge around the entire subject of Narcolepsy, the terminology is so loose and flexible but the better you can grasp it the more becomes clear (for the individual with the condition, I don't think externally that can happen but one can influence the person), a very huge resource is online information. So many medical articles, journal entries and research points are available just through Google, but another big one is the reddit.com/r/narcolepsy subreddit; taking in others experiences while interacting with them beyond, getting different perspectives and opinion too, helps one develop a better overall grasp of what they're dealing with. Lastly, in specific regards to severe collapsing Cataplexy, it really helps to be comfortable with and familiar with, the symptom itself, how it is for you; learning to not fight and/or resist it when beyond minimal (being inner sensations, flickering, once you begin losing a solid stance it becomes moderate), as resisting and fighting it (mentally blocking, etc. or physically standing stiff or strong, etc.) will in fact amplify and prolong it, very much also making one appear to twitch or convulse... Meditation is a great practice to also learn and do, as in those moments of strong Cataplexy, getting to the floor and essentially meditating, focusing in on core, counting as you inhale, hold and exhale, can for me, at least, really dissipate the paralysis in a moment, and if I am lucky, prevent worse or worsening of the attack/s. I think of it as like a instant micro nap, as I come out of it sometimes feeling better than before being struck by the Cataplexy (if it's built up from ongoing interactions heightening/stimulating my emotions). Lastly, you asked about after effect, I can say the stronger the attack/episode, the greater and longer the after effect will be, in duration which can be minutes to days and also in intensity of the ongoing aura (which I more and more consider to be like basically, ongoing minimal Cataplexy). Very much also, within that window/timeframe of the after effect with aura, the person has a greater susceptibility to further, more easily triggered, and more fierce attacks/episodes. Hope I've helped here. Honestly, the subject is now an expertise that I have, having spent as much time and energy diving deeply into it to learn about the disease, symptoms, experiences and perspectives. An interesting statistic I learned at a narcolepsy network conference, helpful for me to understand the bigger picture to do with lack of car and understanding, recognition too, is that; 'less than 10% of type 1 Narcoleptics, experience regular severe (collapsing) Cataplexy on a regular basis'. That's like under 11,000 person's in the US (out of 330 million). Most people who experience it, don't live with collapsing at all. Doctors approach it as having some 'weakness' which in my mind is very not fitting, perhaps th wording of 'experiencing muscle interference,' is actually fitting. Good luck