Best products from r/Narcolepsy

Marketing and UX are heavily linked, the research and strategy are similar, especially personas.
Do you check out behance and dribbble? It helps with the visual part. Do you work on an app, a website or something more eclectic (real-life / street displays, softwares...)? Neurodesign helped me better understand the logic behind design rules.

> (1) In-house designs have weaker visuals than agency contributions.

When you start off, yeah, but in-house designers are actually better for UX products. Agencies rushes to put out something pretty but not really well-thought. My boss hired a “UX” agency last year and they showed us really cheap and messy screens, we had to redo almost the whole thing. Beyond the fact they didn’t think anything through they used weak UI (unaffordable CTA). They even tried selling us free components from flaticons lol. So trust your skills, design agencies are sometimes a fraud.

> (2) Reinventing the wheel for key components (and having it produced before realizing it).

Honestly best advice is to practice off-work while working on personal projects. Do you work on Sketch? Sketch + InVision + Zeplin is the sh*t. I learnt how t master the above to help my developers.

> (3) Misinterpreted business requirements.

Do you participate in strategy meetings?

(4) Very late or sometimes nonexistent handoffs.

You mean you forgot to deliver something? I’m not familiar with the term “handoffs”. I use Trello to list all the things I need to do. Mentor use Gantt Project to follow up our projects, you could use it for your works.

> (6) Keeping the master file organized and updated for multiple designers on top of my large workload (a large complaint I have, but haven't received).

Make Sketch libraries! You know the perfectly organised symbols? I worked my ass-off for 2 weeks to make up the perfect master file with changeable colour symbols 👌

You can message me on Telegram @tipsyonne if you need feedback on screens :) we could even study UX process together, I’ve been really led back because of the fatigue lol

I appreciate and share your enthusiasm for outreach and awareness! PM me if you want to talk more about this, I too have been trying to do more outreach with the community offline.

There are a few organizations for Narcolepsy awareness that I'm sure would appreciate the volunteers. A lot of organizations are funded by pharmaceutical companies though, if that turns you off, I really suggest doing some digging on these orgs. For example, the MoreThanTired campaign recently caught my eye, and then I realized it was funded by Jazz Pharma lol. Next!

Project Sleep is run by a Type 1 Narcoleptic who has done a lot out outreach. I suggest you look into what they have available.

Other than that, try looking on Meetup.com for a narcolepsy support group in your area. There is usually at least one in every major city, maybe you can attend and organize some sort of local outreach with the help of fellow narcoleptics in your area!

Instagram is a great way to spread awareness. There are a few Narcoleptic Instagrammers I follow and I myself try to post semi-frequently about my N in order to raise what awareness I can. Consider using social media to post memes, awareness, etc.

You can also channel your personal passions into advocacy. Like exercising? Run a 5k for Narcolepsy research and ask your loved ones to sponsor you! Tech/graphic design? Make cool gifs and graphs about Narcolepsy, post them everywhere! Art? Draw your experiences with N, get creative and submit to competitions and galleries. Writer? Write a book! There aren't enough books about Narcolepsy. We need way more things like this.

​

Use this amazon smile link to donate to Narcolepsy Network with every purchase!

https://project-sleep.com/

https://narcolepsynetwork.org/narcolepsy-awareness-day/

This is the light box I use. The legs are annoying but it's so cheap so I bought 4. If you buy a light therapy box, definitely go with a trusted brand like the ones you find at your sleep center. I'm very happy with carex as a company. I had an issue with one of the lamps and they promptly sent me a replacement, despite it being past the warranty. They even followed up with me to make sure I got it.

I have it set up on a Wemo plug, but any smart plug will do. I would wait until black friday, all of my smart plugs were free-$5 on Amazon during a promotion, and I bet Amazon will have something for black friday.

This is one of the bulbs that is tunable. I have a few around the house now, I can't remember which is which, and I'm currently out of town. Bulbs also go on sale during black friday and prime day and all that jazz.

Good luck and happy sleeping!

-Sleep Hygiene -> bed/pillow/sheet/blanket comfort, room temperature, sounds/quiet, routine sleep schedule, etc...

-Allergies -> get them in check as best you can, a lot of things I had going on were additional matters to the N w/ C and by eliminating as well as just learning to live better according to, or by, reducing impact of allergens in the environment/s I'm in, as best possible. A few examples unrelated to food, I will bath and change clothes after being in the woods or a field for long (to get allergens off), I keep the cats out of my bedroom now, I clean my floor and household as best I can (a bit more than I had prior).

It turned out that I have a lot of them, 25 of the 28 done on the standard prik test. This I discovered in the same year that I discovered finally what N w/ C was (even though I'd been aware of something for most of my life, collapsing since around 20 from C).

Onto food allergies, discovering I have a wheat, rye, barley and so many other allergies, I decided to go Gluten Free and it has made a impact on many symptoms like skin breakouts, stomach clogging (not constipation but very few BM's), mood swings, and I'd say I've got less 'lethargy/laziness' which is different than tiredness, or sleepiness. Beyond that, I realized something in milk and cheese was causing me, not stomach gas but breathing constraint from what I assume was GERD or an allergy to caseins; so I also ended up Dairy Free. I cut out meat besides occasional fish and I stopped eating sugars besides in raw forms like fruit, honey or syrup.
The benefits have been profound, it took me a couple of years to really get comfortable with it, but not over 5 years later I'm still very glad I made the changes.
Cooking my own food is a big part of managing the diet.
I still very much deal day to day, as the N w/ C is very present if I'm not in a good balance.

-Read/Learn/Reflect/Grasp/Respect -> dive into understanding what the disease really is, what it is to you and what it is to others, you'll learn what it is thought to be by not just others, but also your doctor. There's tons of info, videos, forums out there to learn from. Dive into each symptom, analyze them from your own experiences, piece the dots together to connect your own perspective of what your Narcolepsy (with or without Cataplexy) is and how it effects you (going deep). Doing this can not only help one accept the entirety of it but also very much help them to decipher and/or juggle better, all of it.

-Pace/Ambitions/Life -> we all have a different path and as similar as some may seem, no two are or can be the same. Basically, I think it is important to not overdo myself, as it in the past has been so easy to do that and have to suffer consequences of that, for too long. With this disease, it's a toll of sleep deprivation and loss, that builds and builds, there is no cure. I'm not gonna say we all in our society are running a never ending rat race, but I sure realized that I don't have what that takes and many people, seem to have that ability.

Taking a step back and reflecting with hindsight is huge. Perhaps living life in a different sort of way, be that slight or be that dramatic, change can be hard but it can sure be beneficial. The thing that is key is balance. N w/ C involves a lot of imbalances, you know the regulation in our brains of so much critical and mostly autonomous stuff is broken, so it takes strength, awareness with attentiveness to even begin to find a balance that works.


https://www.amazon.com/dp/0989991911

i would also suggest:

on campus housing:

• single room accommodation
  
  • the student isn't charged the full price of the single since it's an accommodation
    
• air conditioning
  
  • i know this isn't a necessity for all days at least for me. if you feel you need A/C and N is your only dx, drive home every possible reason why you need it. so think of your absolute days* if you have a dysautonomia or similar dx they're far less likely to fight you on this
    
• building with elevator if stairs cause severe fatigue/pose a safety issue
  
  class:
  
  
• ability to use accessible textbooks. for some reason Kurzweil works on the disability office's computers but i've never gotten it to work on mine. i have some additional info down below on other options
  
  • the way my college does this doesn't work. at all. for some reason kurzweil works on their computers but i've never gotten it to worn on mine. i have some additional info down below on other options
    
• permission to record lectures/use computer for assistive device
  
  • if you have a tablet+stylus I highly recommend Notability
    
  • permission to use a smart pen
    
    • some schools Disability Resource Offices lend these and give out notebooks for them i.e. livescribe echo
      
• permission for attendance leniency due to disability
  
• permission to take breaks during class
  
• ability to use accessible desk
  
  • for me this is a big one. some of our classrooms have those desks with a half-table that sits partially in front of you. these were a safety risk for me bc i could fall out of it and hurt myself. i also ran the risk of knocking over my expensive and necessary electronic devices
    
    tests:
    
    
• permission to take breaks during longer tests
  
• 1.5x or 2x time on tests
  
• separate testing location
  
• permission to use reading software on tests
  
  • we use Kurweil. It highlights each word as it reads. headphones are provided, but i prefer bringing earphones.
    
• permission to write directly on tests if you have a hard time with bubbling in scantrons properly
  
  • permission to not use scantrons
    
• permission to type and/or use voice recognition software to answer questions if you have a hard time with automatic behavior or writing neatly due to stamina/fatigue
  
  other suggestions:
  
  
• at the beginning of each semester, i give my professors narcolepsy info for professors that i edited so it's specific to me. the original is from narcolepsy network.
  
• learning ally (accessible books)
  
  • link to financial aid application: https://www.learningally.org/Portals/6/Docs/AssistanceProgram_Application.pdf
    
• if you have a tablet:
  
  • Adobe Scan to scan class handouts and other things so you can write on them
    
  • Voice Dream for reading PDFs and eBooks
    
  • Liquid Text for studying –– you can link your handwriting to a certain page, take a freehand screenshot and drag it onto your workspace, and more. there's a one-time cost for students to get the pro version
    
  • things accessed on the web can often be downloaded as PDFs to use in Voice Dream and/or Notability/other note taking apps
    
• on campus/outside resources:
  
  • Educational Opportunity Program / Student Support Services
    
    • eligbility –– first-generation student, disabled, and/or low income. veteran status may also be a factor.
      
    • may have extra tutoring help beyond what's offered to every student
      
    • may help pay for financial aid
      
    • may have opportunities for social enrichment i.e., going to theme parks, museums, etc at little/no cost
      
  • ACCES-VR. the name varies by state, but you can look it up to see what i'm referring to!
    
    • can help pay for school/textbooks based on financial need
      
    • may pay to get you a neuropsych eval (evaluates your memory and other things to further determine where your needs lie)
      
    • may pay for an evaluation for assistive tech (i.e. tablet, computer) and lend it to you, insurance included. after you have gained meaningful employment, it's yours (or at least that's how it works here)
      
    • may pay for bookshare (accessible books) membership. renewed annually by the student
      
  • Occupational Therapy for developmental disabilities (N counts as a dev. disability if DXed before early 20s, forgot what age specifically. anyway that technicality doesn't matter here)
    
    • teaches you how to be a more effective student in spite of stamina constraints
      
  • if you sleep weird so you're achey, physical therapy
    
  • Neurofeedback
    
    • i thought this was bullshit but it's actually made the slightest difference in my fight to stay awake
      
  • Light therapy
    
    • this helps me immensely to stay awake in the darker months. this is the one i own!!
      
      *when applying for any type of disability aid you go by your worst days
      
      ​
      
      when i looked for accommodations, i looked up ones for ADHD. since narcolepsy tends to manifest as ADHD to outsiders looking in, i thought adhd accommodations would also be suitable for N.
      
      well .... that's all i could think of. best of luck!!!

To be honest, I've never really participated in a traditional hiring process, so I don't know. I'm confident enough in my general competence that applying for jobs in the future doesn't really scare me. It seems your career philosophy is fairly traditional, which isn't a bad thing, but I do think "committing" less to one specific track can save you a lot of stress.

I would check out So Good They Can't Ignore You, by Cal Newport. If you can learn to work around your ailments and hone a special skillset, I believe you'll be respected and desirable as an employee! I don't know about outdoorsy stuff, but I am confident you can pave a way for yourself to do something at least park ranger-esque. Though you'll need to play the long game. Keep learning after college and consider everything research for eventual perfect job- one that caters to your interests + skills while accommodating your illness.

I know it sounds out there, but this sort of strategy could really be the way of the future. It's a risk worth taking, given that a traditional path (e.g. climbing a corporate ladder) is excessively difficult for PWN.

Ok, try replenishing your electrolytes. Try and add a couple Gatorade to your day. If you don't want the extra calories, try the calorie free Gatorade or the flavored Propel waters. There is also an unflavored Propel Electrolyte water that has been a life saver for me. It's just water and electrolytes (like Smart water, but better).

I have a huge problem with heat intolerance, dehydration, and sometimes my autonomic system just gives up and I overheat because my body forgets that it needs to sweat at all. I have ended up in the hospital from being in the sun on a 65ºF day. I take at least one of these Rapid Rehydr8 electrolyte pills every day. Last year, I had to take 4-6 of them again.

Another tip is that you should hydrate before and after work. The best way to eliminate the effects of overheating or dehydration are to prevent it. If you drink a couple extra glasses of water to recover from work and some more in the morning to prepare for it, you will have a good buffer. Your body actually takes some time to adjust to adjusted water intake, even with extra electrolytes, so you can't just drink more water and assume your body will automatically absorb what it needs right away. For instance, during the Tour de France they will start drinking extra water a day or two before they start the mountain part of the course because it takes a couple days for their body to adapt to the increased water intake.

Finally, you should keep track of how much water you're drinking. The simplest way to do it is to get a nice reusable water bottle. That way you can just count how many bottles you drink per day instead of doing the math because you drink out of different cups at home or work. I prefer a .75L bottle (example .75L), but you may prefer a larger 1L bottle (example 1L). Then you can find out how much water you need to drink to be functional. I need 3-6L of water a day. Personally, I don't count my Gatorade into my water intake (I do count unflavored Propel water, though), because I want to make sure that I am relying primarily on water for my hydration needs and supplementing the Gatorade and electrolyte pills to build on top of that. There's no reason, though, that you couldn't count your Gatorade as well.

Well, TBH, it was my friend who told me how he had read up on lucid dreaming online and was able to control some of his dreams. And I really wanted to have a sex dream with Channing Tatum! LoL 😂 So I was willing to spend $30 for a sleep mask that helps induce "lucid dreaming", although my friend said that you can train your brain to do it by itself without the mask... So the sleep mask dimly flashes every 20 minutes while you sleep so you can see the flashes (with your eyes closed) and realize that you're in that middle state where you're not awake and not asleep, and continue to be cognizant while your brain begins to dream. Here is the sleep mask that I bought:

Remee Lucid Dream Mask https://www.amazon.com/dp/B077XSDZL6/ref=cm_sw_r_cp_api_i_qlhDCbT85RZ75

I used a Phillips Wake-up Light throughout college and it made a significant difference in how I was able to wake up for morning classes. The light has 20 settings from dark red to bright white-yellow, to mimic sunlight, and it starts lighting up about 30 minutes before your actual scheduled alarm, so that you’re inclined to naturally wake up easier. For example, if my alarm was set to 7AM and it was dark outside because it was winter, sometimes I found myself waking up naturally around 6:45AM (feeling rested and actually not irritated to boot, since I wasn’t forcibly jolted awake by the sound of my alarm). It comes with multiple sound effects you can choose from as well; I picked chirping birds to help with the “natural wake-up call” aspect.

The clock also has a nice “tone down” feature that helped me with sleep hygiene a lot. I’d set it to 15 min. when I got into bed, and the light would gradually darken and fade over that period of time. After 15 min., my room would be dark and I’d put away my phone or book (no more procrastinating sleep) and close my eyes.

In all, I love my light clock and I’ve recommended it to many friends, especially those that have a tough time with early morning shifts. Let me know if you have other questions!

I wasn’t sure if this would work for me so I bought a cheaper one first off of Amazon

Philips Wake-Up Light Alarm Clock with Sunrise Simulation, White (HF3500/60) https://www.amazon.com.au/dp/B00F0W1RIW/ref=cm_sw_r_cp_api_i_8F7PDbP3DEY00

I got it when it was about Au$65 and yes it definitively helps but isn’t perfect. I am planning on upgrading to a more expensive one but am glad I got a cheaper one first so that I don’t feel guilty dropping a couple hundred on a better one, my husband is planning on putting the cheaper one on his side of the bed when we get a better/brighter one.

I use this Phillips Wake-Up Light to help me get up and it's been great. The light starts gradually turning on half an hour before the alarm goes off at which point it is on full brightness. It is supposed to simulate waking up with the sun, and I think my mind does register it and begin waking up even if I'm not consciously aware of it. However, I have to remind myself to sleep facing the light for the last few hours before waking up (I'm often partially conscious throughout the night so I am able to remind myself, it's disruptive but helpful in this situation). Here's the link to the one I have, although there are other more sophisticated ones.


Philips HF3500/60 Wake-Up Light https://www.amazon.ca/dp/B00F0W1RIW/ref=cm_sw_r_oth_api_xwiPyb4D4A733

Keto diet. While I’m coming to learn it doesn’t do much (or anything) for cataplexy, it does help astronomically with the daytime sleepiness. You really don’t need to go crazy strict keto and actually produce ketones. I use a more modified approach with more carbs in the evening with as little if none in the first half of the day. I think I saw your bf is vegetarian. You need to be careful with legumes. They’re very high in a type of carb that goes straight to sugar in your system. This diet seriously changed my life. I was diagnosed with Crohns before anything and I could never figure out what my trigger foods where for putting me into what was basically a food coma - it’s carbs. Simple, processed carbs are the worst. There’s an incredible article somewhere with the research behind it. Message me if you want it and I’ll actually look for it. It explains how blood sugar acts on orexin cells in our brain. For those with N, our orexin cells have been severely damaged. It seems like it wouldn’t be too hard of a transition if he already has the discipline to be a vegetarian. This is the best book I’ve found so far: https://www.amazon.com/Keto-Diet-Complete-Delectable-Confidence-ebook/dp/B06XKKPXM4 . It really goes into the details of the different options for those who aren’t looking to the diet to specifically lose weight. And just general amazing information. I don’t actually calculate anything so I wouldn’t say let that intimidate you. No carbs/very little carbs first half of the day and then recipes with some carbs the second half. Stir fry is my best friend. This is also good for a lot of other health issues too. Most people with N have other chronic diseases as well.

I was going to tag that sub too lol

I posted in there a while back, cuz I have this same exact issue. I bought these finger sleeves so I couldn’t pick and they work great (and are soooo much more comfortable compared to the crappy finger condoms from the drug store). It worked enough to let them heal then I started getting acrylic nails. If I keep them rounded and kinda thick it makes them safe to be free. Still gotta actively think about not just chewing but since my nails aren’t starting the mess it’s easier. I’ll link the sleeves below.

Sumifun Silicone Finger Cots- Gel... https://www.amazon.com/dp/B073GHBF32?ref=ppx_pop_mob_ap_share

I meant something like whole-grain pasta in the evening and to eat something (at least a bread!) before working out as well. The reason being, you want to make sure your liver and muscles have enough glycogen (energy). However, glycogen storages are usually depleted after 8-12 hours of fasting (sleep), so breakfast is important.

As for the supplements, something with branched-chain amino acids and citrulline malate and electrolytes. For example: https://www.amazon.com/Scivation-Powder-Branched-Orange-Servings/dp/B01M28VEPR/ref=sr_1_1_s_it?s=undefined&th=1

Also, eat plenty of protein. 1g - 2g per kilo of body weight is the usual protein recommendation in 24 hours.

Oops sorry for the late reply. I went in on it and bought the more expensive, but not the most expensive model.
https://www.amazon.com/dp/B0093162RM/ref=cm_sw_r_cp_apa_7QvOBbZDSNWFZ)]

It was about $100 when I bought it, seems to be so now as well. I think the main difference in the prices is how bright they get

I swear by this sun lamp! I use it mostly for the winter blues, but I bet it would help with energy levels too. https://www.amazon.com/NatureBright-SunTouch-Light-Therapy-package/dp/B000W8Y7FY

I carry ginger chews (like Prince of Peace Ginger Candy 4.4 oz. (Pack of 2) https://www.amazon.com/dp/B0779PY9KC/ref=cm_sw_r_cp_apa_i_iXGKDbVKER433) with me all the time. Used to have more gastro issues, but they work wonders. I could live w/taking Rx and ginger Chee together every morning. Hope it goes away soon for you!

>I have used a sun rise alarm clock for years. I used to work shift and it was absolutely essential to be able to wake up at night and get going. I have continued to use it even after coming off shift because it just works better for me. There is a noticeable difference in how I feel when I wake up if I forget to set it the night before and I get up to my SO's alarm.
>
>I have an older Phillips model and did a lot of research before I bought one, it was expensive. I have mine set to start lighting up 15 minutes before I need to wake up, I think you can set it to start as far out as 60 minutes early. You can also change how bright it gets. Once it is my wake up time it plays forest sounds and crescendos them in so it is not a jolt but to be honest I am almost always mostly awake by the time the sounds start. You can of course choose not to have sound or turn on the radio if you prefer,
>
>This is the one I have but there are newer ones on the market now.

https://www.amazon.com/Philips-Simulation-Headspace-Subscription-HF3520/dp/B0093162RM/ref=sr_1_3_a_it?ie=UTF8&qid=1541909332&sr=8-3&keywords=phillips+sunrise+alarm+clock

The Philips Wake Up light with dawn simulator alarm clock is nice. The light doesn't really wake me up but my husband loves it. It might work for you.

There's many models but here are some links:
https://www.amazon.com/Philips-Wake-Up-Sunrise-Simulation-HF3505/dp/B00E91EGDS

https://www.amazon.com/Philips-Morning-Wake-Up-Simulation-HF3520/dp/B0093162RM