We talked about the symptoms, you can read in the other post.
Those who have no treatment or diagnosis, daily suffering of family members, something that is incomprehensible to him and that creates discomfort and a feeling of inadequacy to everyday life than just "load inks" and makes them feel worse.
Sleeping Comrade Bello has another sleep disorders and is on the theme of performance and lack of coverage in the health services, public and private.
Laura works on her blog to disseminate and clarify. John tries to regain his for the same reasons
Sara was a little scared because his doctor gave him to understand that this is a "progressive" and that we fill with symptoms ........ containment and information she needs and many more we know and we can accomplish things that we like.
Letty, of Mexico, like sleeping beauty, understands that it is costly to enter the wheel of the necessary studies for medications then have to pay .... and at what price!
Mar, Madrid Association provides volunteer work and experience to reach out and improve the situation.
And we all have something that concerns us most.
To me is indignant that no longer exist for health authorities.
As Bello said Sleeper, is that when we do not just revenue?
There in Argentina Compulsory Medical Plan (PMO) that provides higher discounts drugs, this is from psychosis to contraceptives.
Ok, and what I do (and you) that I have to pay MODAFINIL and others, but give me a certificate certifying that a condition is "permanent and irreversible"?? Not to mention the "authorizations" that I must complete for each recipe even if you know it's permanante, I suggest that I take care to have a good supply of drugs and / or recipes for not giving them the responsibility to extend a facilitator ... nothing is the so-called "quality of life."
Those who live in Argentina and with the condition: do not think we should demand rights as was done with the Obesity Law and HIV? If they did it and with just cause ...
Is not it time we start that, though few, are human beings part of this society and vote?
A CULT PEOPLE CAN NEVER BE ENSLAVED. Manuel Belgrano
A hug to all and good dreams ...
Sleeping Beauty
28th May 2009 at 5:52
The price of drugs, go to theme, too much handling when you're short of time and low power. I think that's the advantage that we do not claim, Sleeping Beauty You're right, we need to join forces.
A little wave to everyone from Rosario. Argentina
31st May 2009 at 12:07
That right! if you have not been there, but I often "racaneo" the Modiodal, took less during the day or days that do not work, do not drink, otherwise I will budget ... That's not fair, because that day do not drink, sleep and sleep that day ... and I lose it ... need to join forces ... and as you see, is something that transcends all borders ... A greeting from Spain
31st May 2009 at 19:28
Incredible but true .... I do not take my medication on Sundays. The sale price is approx Vigicer. $ 92 box of 20 and 30 days if you think you have to buy 2 so a single drug takes 25% of salary if you have the opportunity to work full shift. 40% less if you have a Social Work, but to this we would add another drug, consultations, etc .... and we are again without any real coverage.
Mar greetings! morning papers I send you an email!
Sleeping Beauty
June 2nd 2009 at 9:50
Hi Sleeping Beauty
I must confess that I love the beautiful Sleeping Beauty revolutionary spirit and transformative, and that hatred of technical discourse Sleeping Beauty dull and boring. I loved your new post, not because I have been mentioned there, but because you touch a subject that we all move the floor.
It is quite clear that for our small numbers, the demonstration as we know, that is, the march, rally and public protest, are beyond our reach, but it is also true that being part of society, not should be excluded from the benefits that have been designed for this, demand, claim our right, requires a creative solution.
I want to suggest this: If you have identified ten people contribute to your blog, and we in turn know (via the internet, of course) two each to suffer narcolepsy or other sleep disorders, then it we are thirty (I know then add).
After these thirty in a post (not far) we put to work to contribute ideas to answer the question that seems fundamental to me: how can we shout very loudly, very, very, very strong, being so few and so scattered while ?
What am I thinking? In each of us, from his corner of the world, can bring something, first thoughts, then actions to achieve, for example, that the Organization of the United Nations through the Pan American Health Organization, turn a recommendation to ministries of health in Latin America to begin to include narcolepsy and other sleep disorders in public health programs, a dream? perhaps.
I say narcolepsy and other sleep disorders, narcolepsy because sleeping sickness is no more respiratory identified among all other sleep pathologies of neurological order, and that makes our key input to public health systems. Throughout this process, that progress has to last many years, the Spanish and the Spanish Association of Narcolepsy, and people from other countries where narcolepsy is already recognized, depending on their degree, as a disabling illness can help us a lot.
I reiterate my admiration for the Sleeping Beauty has determined that this world can change, reported that the paragraphs written above is not the product of confused me today and I took a double dose of modafinil, I say goodbye to everyone.
The Mexican namesake host, Bello Sleeper.
June 3rd 2009 at 21:41
Hello Namesake: With your contributions you round that started in the post.
This began timidly to inform and share. I did not raise the tone and raised tempers in but, it's time.
I fully agree with your proposal. I do not add anything to what is written for you, you are very clear and you caught my wish, dream, proposal!
We're going down that road, the one I dream and you propose concretely.
We will work on this and that narcolepsy is the first step to eventually cover other sleep disorders. And speaking of dreams, you should consider taking the post with me
Greetings to you and for Mexico
Sleeping Beauty
8th June 2009 at 8:18
Hi, two things:
1. ¿Posta? What is post?
2. Already have a follower.
Sleeping beauty.
8th June 2009 at 10:05
Hello Beautiful Sleeper, not you imagine what is motivating me have found you, I'm recommending this blog to all narcoleptic (speaking at the moment) that pass through my hands, several countries of which I speak, I hope that within a very little we can attach a little more our dreams. A greeting
9th June 2009 at 19:49
Sleeping beauty, in this dream of going for more and give battle to another dream, which needs treatment (parasomnia, hypersomnia, narcolepsy, and all variants "rare") can work together.
Ocean from Spain, from Mexico you (there you pass the post) and I in Argentina. Your proposal is in line with mine and we meet as well says Mar, the Spanish speaking world, distance is no obstacle!
Thanks Mar for the push you give me.
I leave a kiss you and all who are struggling with this disease.
Sleeping Beauty
tengonarcolepsia@hotmail.com contact me.
14th June 2009 at 10:03
Hi Sleeping Beauty.
Hi everybody s.
First words that do not suffer from narcolepsy, but I have a student who does. I found this blog through Sleeping Beauty and the Sea which left a comment on ours. Actually, we do not suffer this disease as must occur with other diseases considered 'rare' by its rate of incidence, it is forgotten in the public, and therefore of political speeches and other efforts.
The challenge to help this student and his family during these early months (the first symptom occurred in early October 2008, and in less than a month, had a profound picture of the disease, with more than 5 naps morning and several cataplejías) has motivated us to document ourselves and change methodologies in the classroom to avoid abandonment of their studies. In addition, also influenced a good neighbor in the classroom. In the absence of a week of the end of the course, we are very proud that they 'won' his approval, and we believe we have failed to meet our goal.
Keep it up.
Receive a warm greeting.
http://narcolepsia-instituto.blogspot.com
14th June 2009 at 22:25
Hello Herman, I consider the role of teachers is essential. If you can catch the symptoms and provide support and information for students and their family ... what a relief!
Hopefully there are more teachers with this comprehensive view of their students.
Mar me that is the bread of the NEA go by schools giving the necessary information.
Congratulations and my thanks for the student I once was, with varying success by some but never too late. and is the link you on this page
A greeting
Sleeping Beauty
16th August 2009 at 20:14
Hi!
I was recently diagnosed with narcolepsy, and reading the commentary Germain always remember that in class laughed at me because I slept, my colleagues and I were waiting for teasing me sleep, because he spent all the time, I was simply not bother me something that we all laughed, but both struggled to stay awake, I moved in his chair, drinking coffee, I threw cold water on the face, and finally could not attend class, 2 minutes after being attentive I slept, my notebooks have the memories of those moments, because I slept so depronto writing letters but no stripes ...
Although I had no support from anyone to find a solution to the problem, I can not complain, I never felt judged by a teacher, I think they thought they slept little or maybe she had anemia, not finally completed my undergraduate with narcolepsy and all. But with my college friends still talk of my sleeping in class and all that we laugh ... I once fell asleep in class, depronto felt a very loud and I "woke up" I got up from his chair and ran to the living room window (can not remember I was dreaming, but I ran like he was destroying the building and had shouted "every man for himself"), when I saw the whole room was silent, watching me and everyone started laughing depronto because also gave me fits of laughter, until the teacher stopped the class and had to laugh, the situation was very funny, finally the sound was a door that had closed the wind ... hehehe
Yet there are times when I laugh because I have narcolepsy, you have to bring good ...
Regards,
Marcela
23rd August 2009 at 12:27
Marcela, your story is very clear and will be helping those who read us.
The coffee, throw cold water and so many tricks that were implemented! I'm glad your environment to understand the situation and take it with ease and even with humor. In your description it is clear the importance of those around us to relieve our daily development.
A hug and see you soon!
Sleeping Beauty
December 25th 2009 at 1:40
I'm very sleepy Sleeping Beauty
December 28th 2009 at 19:42
Good morning to all!
I know this is an old posting, but I deal with this issue every day
I am currently using Modafinil as I think most of us,
and in Argentina with the social work I have a 40% discount on the box of 20 (I find it provocative 20 tablets could be 30 to have a monthly treatment per case at least, but that's another topic)
There is a list of medications with greater discounts, something like 70%
someone has had success in getting modafinil beyond a discount of $ 40? simply because I find it very expensive and I can hardly afford it ...
I would love to get in touch with me to have something to comentarme
thank you very much!
28th June 2010 at 7:34
hello how are you. is that while not aparesco but spent a lot of coass including a good ...: I received a lawyer!! Thank God .... with the theme of social work and the medicamnetos cosçto should do something to give us more discount for medication ... that `we could do??? eg I have OSDE me and I'll see if an I get a little more Exceptionally descuentop by