Living Well with Narcolepsy

[@ourfolders4779]

What a lovely woman. God bless.

[@joellenthaxton5484]

I've listened to and read a great many talks on Narcolepsy and found this one EXTREMELY helpful. Thank you.

[@bartacomuskidd775]

I love these videos. And its really great to see so much int...............

[@grayrachelle]

I appreciate this professional and fellow person with narcolepsy giving this presentation. In my opinion it is good for beginners (with narcolepsy) but I didn't get much out of this. There wasn't any new material for me that she covered and every time generalizations didn't match what I experience I felt aggravated. If there had been more quality of life psychosocial coping mechanisms that would have been better. Also there are implied assumptions in this talk about middle class white privilege that I am resisting. That we all finish high school, go to college, marry. That big changes in those will affect the toll of narcolepsy--yes. Other things that compound the toll of narcolepsy are stressful life events like chronic unemployment, homelessness, suffering from systemic racism, poverty, lack of medical care, etc. Something about the speaker makes me think maybe if she sees my comment she will address some of these issues--I mean that as a compliment--so I was invested enough to write this comment. Thank you.

[@MrsLadyLiberty]

I've never been able to try Xyrem because since I was diagnosed 5 years ago, I haven't had stable health insurance and Medicaid won't cover any narcolepsy medication. Being able to effectively treat narcolepsy requires having a certain income level. It sucks being too poor to sleep.

[@Max_R_MaMint]

"implied assumptions in this talk about middle class white privilege" Im 50 year old skilled (electrician) white male - unemployed, single no kids, living with extended family, no insurance (obamacare has Nothing for me; neither medicaid. Only offered to pay to cut my nuts off ie family planning. No help WHATSOEVER), So you can fuck right off with your self-priviledged RACISM. God I actually HATE whining narcissistic racist asses such as yourself - and I was NOT raised that way. You self centered crybabies have earned my disgust and contempt all on your own. Go take a nap.

[@katieismobile8898]

I have been diagnosed with both severe sleep apnea and restless leg syndrome but not narcolepsy even though I have fallen asleep while walking or doing things or just being at the computer. I do not have any cataplexy. My iron was low so I had IV Iron and my Iron stores were low. I am also anemic and take Epo for that separately from iron. I have gained weight from nocturnal eating but that is because with lack of REM sleep your brain get depleted of a very important hormone in the brain. Look up the hypocretin system. and 24:42 leptin levels go down and ghrelin levels go up.

[@BelladonnasJewelry]

I am a PwN, and this disease is a spectrum... Lifespan may not be affected, but it does too cause other health problems... Mainly of a mental origin, but not exclusively. Depression, confusion, irritation, obesity, inability to function and participate in life "normally"... And then she goes on to say that "once Narcolepsy is stable and managed..." When exactly does that happen?? Bc even with my daytime meds, I am still so consistently exhausted that I don't even feel competent to leave the house most days. Yes, it keeps me from falling asleep randomly, most of the time, not always... But it doesn't give me enough energy to actually be able to concentrate. I'm glad she has Narcolepsy Lite ... But she clearly doesn't suffer from Cataplexy, either... Which is also horrible.... So, this is not a clear picture of anything.

[@taffy1400]

Thank you, needed to hear this today.

[@dianecorbin9649]

This was very informative! But what would extremely be helpful is to let us hear the comments and questions from the audience so we are not in the dark about why she made certain comments. Thank you

[@NarcolepsyNetwork]

Thank you for the comment! We hope once we are back to in-person conferences that we'll be able to make our video quality better!

[@LisaJones-sq4ym]

It CAN get worse with age!

[@lauragallardo6629]

Wow she talked about drinking water. I do not get thrust. I have remembers on my phone or i will not drink.

[@EASYTIGER10]

Wow. I only watched this out of curiosity, but I have both of the first 2 related conditions she mentioned!

[@martikocian888]

Once again old information on narcoleptics new research on stem cell and histamine uptake still specialist only gives amphetamines give us New treatments not 4 yrs ago

[@SB-131]

She’s pretty