2012 Tues 19 2012

You have Narcolepsy, accounting Us

Category: General - admin @ 21:41

You can volunteer, approach, collaborate, give ideas, disseminate, tell your experience, tell how many doctors have left before diagnosis, to know how you take your environment, family, friends.

Thinking that nothing comes alone, and less alone, that great things are good and extend to all who need them.

In this blog you have a note from Dr. Claudio Podesta who is going to clarify what is narcolepsy, cataplexy, sleep paralysis, and as it is.

and repetite to yourself that it is a neurological disease, but there would be many centers in the world specializing in Neurology Trial conducting research.

You're not seeing things "weird" you're not "weird" you can study and work and many other things, but you have to take care of your health and not leave out a neurologist / a header ...

You can join us in or out. But if you need to work together and be a pioneer once again I invite you join, and do it to get your rights to a better life, to receive aid for drugs and participate in activities and lectures worldwide.

Of course, to be honest, write to tengonarcolepsia@hotmail.com and give your real information.

When we look to the world and its progress is the time of self-criticism, we should work together. Know that there are people suffering, you lose your job / profession and all because there is interest in making it look like a psychiatric condition and ban those who come to ask what they should.

Blog I've been 3 years, but countries were added and lovely people and made ​​many friends.

We end the association pending.

You can be understood and try to understand others, without making a single path that will lead you all will be just 15 minutes of fame. And it is not fame but to work for the good of all, I speak not of Health and a reality show.

You how old you look at the first stop and from here Jugate world, unite and work. May discriminate against one but not all ....

Sweet dreams

Sleeping Beauty

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2012 Tues March 2012

Meeting in Madrid. Have Narcolepsy? I recommend it. Join Now!

Category: General - admin @ 18:33

This time I post a meeting of the Friends of the NEA, especially Bea who is organizing. I hope you can read all those living in Spain and give a little walk that day. No need to pass the night. They can also go families. Read the info. A greetings to all around the world! Sleeping Beauty

MEETING IN MADRID

Saturday, March 17, 2012

11:00 to 20:00

MORE INFO ABOUT THE MEETING
Hello this is the price of the game, we tried to find the best ADAPTATION TO THE NEEDS OF ALL / PRICE

The meeting is free of charge added to the costs involved.

All invoices are at your disposal.
Suggestions: encuentro2012@hotmail.com

ACCOMMODATION WITH PRICE € 75
-Wellcome pack.
-Joint activities.
-Bed and breakfast in a room.
-Availability of a meeting room all day.
-Food.

WITHOUT HOUSING PRICE € 35
-Wellcome pack.
-Joint activities.
-Availability of the cabin to rest.
-Availability of a meeting room all day.
Food.

-The price of accommodation is for sharing a room, if someone wants to stay in a double room for single occupancy, price changes, consult us. (Encuentro2012@hotmail.es).
-We have "guaranteed" minimum price for the room, there may be a cheaper deal on the web but with other conditions such as no refund on cancellation, etc..
-In will be available beginning a rest cubicle all day, will have to schedule naps.
Individually, will attend the issue of hours of rest and try to give a customized solution tailored to the needs of each. For this, the sooner I comuniquéis us better. (Encuentro2012@hotmail.es)-If any person will come to the car we see to arrange the issue of parking. -If anyone has any allergies or food intolerance notify us as soon as possible to try to fix it. . (Encuentro2012@hotmail.es)
- Joint Food is an important part of the meeting, because in our culture both in work and other food businesses is when the synergies arising. Yet if someone does not want to stay and eat remaining 15 Euros to any of prices and that tells you to do the registration.
* EVERYTHING IS SUBJECT TO SMALL CHANGES.
A greeting! QUESTIONS TO encuentro2012@hotmail.es

Hotel Husa Chamartin

Madrid, m

View Map · Get Directions

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2012 Jan 19 2012

Why is it called Narcolepsy and Gelineau syndrome?

Category: General - admin @ 21:31

Reliable sources say that comes from the Greek Narke, "torpor" and Lepsis 'possession'. y hasta rechazada porque más de una persona la confunden (sí, la confunden) con narcotraficante, narcodependencia y demás variantes. This includes what happens when a person has Narcolepsy and I will not be me who will change the name to a disease but socially, is a confusing word and even rejected because more than one person's mistake (yes, confusing) with drug trafficking, drug dependence and other variants. (At least in Argentina)

Calling upon the Government of the City of Buenos Aires, Argentina, to a hospital to get the "certified" by the person answering the phone said, "do not treat addictions"

Returning to the Greeks and say that the "stupor" is the result of fragmented sleep at night may be the appropriate name. que no la engloba esta palabra confusa. Hypersomnia as a symptom and possession by sleep paralysis (vigilia-sueño/sueño/vigilia) but we have not cataplexy that includes the word confused.

I like the clarity with syndromes that accompany the name of a disease discovered and here I think Gelineau is lost in the shadows as one of our frequent nightmares lucid dreams. And the credit goes to the good doctor!

This great man discovered it only now in 2012 is spreading throughout the world. Countries like Israel who already diagnosed and medicated in the '60s and U.S. universities did something similar. In Europe Latin America is well known but stay and was adrift.

I would love to know why medical students do not delve into the subject a few minutes. . It is true that a general practitioner can not know every disease, but we are helpless in an emergency if we reach a guard with a severe cataplexy in public streets. Admitted knowing the name but not its symptoms and just like that epilepsy is a disease that may require attention in a watch. Rulers of the Ministries of Health and Education, a little attention to us before we should reach the INADI

Gelineau and said

It is characterized by the presence of hits of daytime sleepiness caused by a failure of REM sleep architecture and arousals permanent night. There may be

Cataplejías (extreme muscle paralysis or weakness in part or whole body),

Sleep paralysis is often accompanied by,

Hypnagogic hallucinations (visions in sleep-wake transition) hypnopompic (sleep-wake transition).

y un mail ( sobre el mapa que abrirás en el link de aquí abajo) asi te contactas con alguien cercano a tu ciudad, país, pueblo que habites y además sabremos cuántos estamos diagnosticados . Let the map of the disease, you can put your name or nickname and an email (on the map that will open the link below) so you contact someone close to your city, country, people settle down and also know how many are diagnosed . You must put a mail or a name that does not overlap with whom resides in the same city.

http://www.narcolepsia.com.ar/map.php

From Argentina to the world, sleep well! Thanks fellow Latin American, Caribbean and Spain

Sleeping Beauty

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2012 Jan April 2012

Narcolepsy Living with a disease little known and almost unknown in Argentina

Category: General - admin @ 12:04

Communicating with you again because interrupts were many in this past year. It is not easy, but some of us (those who suffer or Narcolepsy Gelineau Syndrome) try to see the positive side and some even believe they are ill, very difficult to carry out all you mean by work alone. It's good to me, refreshing my ego, which those who suffer this disease have not stop because they have nothing to do with the hypothalamus, hypocretin and our lack of orexins with us a little applause for ourselves.

In the group of the NEA in Spain I meet a professor of Murcia with others gave their support to a student who is a charming guy and he put forward his studies. I say that his mother read this blog and comforting.

Eva Lopez lonely and daring in Puerto Rico opened a group home for people with narcolepsy and has very few comments, but it goes on and on and on.

And there are others who are always here as saying ... "do not give up."

Believe me, it's hard ... but maybe only continue on Facebook ...

Of course as with all, some ask for advice and help but can not be "present" or because they live far from Buenos Aires in Argentina or simply because they like to read, feel accompanied, know there are others who were diagnosed with the disease ... and until there are "fake" patients who enter, comment and then disappear

I did not expect too much with the blog and was wonderful if I tell people that I know, I have friends in different countries (not the name because they know who you are) and Sleeping Beauty have multiplied in the world.

ANHA has been created (in 2011) the Association of Narcolepsy and hypersomnia in Argentina, as is always the mail tengonarcolepsia@hotmail.com and time will surely be running the blog and the website of the Association with the data, status, authorities and other bureaucracies endless but necessary. Will be announced at the time the corporate, partnership and above all I ask you to remember, is an association of patients affected by the disease

Gelineau syndrome

It is characterized by the presence of hits of daytime sleepiness caused by a failure of REM sleep architecture and arousals permanent night. There may be

Cataplejías (Extreme muscle paralysis or weakness in part or whole body),

Sleep paralysis is often accompanied by,

Hypnagogic hallucinations (visions in sleep-wake transition) hypnopompic (sleep-wake transition) These symptoms have all or part, makes narcolepsy. Difundilo you until you become the nightmare of another, we've been through too many nightmares, dangers and bad times of ignorance of others.

Greetings to all and good dreams

Sleeping Beauty

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2011 July 21 2011

Narcolepsy (Gelineau Syndrome). Polysomnography compulsory

Category: General - admin @ 19:56

We always talk about how little access we have, without a prepaid medical or a social work at the neurological studies that accelerate diagnosis and improve the quality of life of people with narcolepsy or idiopathic hypersomnia, excluding other sleep disorders. And nobody listens to us ... But if we think differently and see who should have these studies for the safety of their lives and our lives? The non-narcoleptic, can you "wake up" to the end and listen? Know what a cataplexy? Paralysis?

Those who are active in professions such as airline pilot, bus driver, train or other means of locomotion, must have a polysomnogram and Multiple Sleep Latency Test, for their sake and that of their passengers (those who drive their vehicles they will according to their thinking) and this should be an unalterable law)

These controls are not law, employers checked HIV for fear of having to be "in charge" of the costs of medications used or if they have higher absenteeism than others. They forget that this is not a danger to the life of the next / neighbor, but someone not diagnosed with Narcolepsy (Gelineau Syndrome) ..... Can you carry a gun and go out to streets or fly an aircraft?

Once diagnosed, a narcoleptic can do almost all kinds of activities, jobs, professions. I told in another post about physicians, surgeons, actors, athletes who suffer and perform multiple tasks. Although there is silence about discrimination, this time called attention to another point and the absolute lack of controls, like an investment that companies or the state does not suit you, then we will never know if the driver had a cataplexy that from carrying to a successful journey and passengers died .....

We know that there are diseases that by their "visibility" affect and move us all, we consider cruel, unjust, painful and they affect children add the component of the difficulty of development in their life and it "breaks the heart" of those who see them. There are registered cases of narcolepsy in children, a mother can attest to this blog with your own history.

Narcoleptic THE PERSON IS NOT A SLEEPING MUCH, THIS IS A DISEASE THAT PREVENTS THE DREAM AND CONTINUOUS MULTIPLE Awakenings (BUT NOT THE PATIENT RECORD) ADDED TO OTHER FACTORS THAT MAKE THE DREAM COME IN BRAIN TRY SEVERAL TIMES IN THE DAY

If we put pictures of some pathological deformity or talk about terminal cancer, many people will mobilize support for these patients. The risk of death stirred the waters, the feared death ... but narcoleptics do not die in sight, they do not has been researched, and collateral issues to it. There is a big group of autoimmune diseases and symptoms varied asociadoss to Narcolepsy (Gelineau syndrome) hypo-hyperthyroidism, hirperlaxitud, multiple sclerosis, fibromyalgia, changes in body temperature .... and actually the autoimmune never come singly, patients have expressed another and the body is vulnerable given the limited number of hours of recovery ...

Get informed global citizens and require these laws, do not wait for this disease is known too late ...

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2011 April 1, 2011

Small tips for a narcoleptic

Category: General - admin @ 0:00

Hello to the many who collaborate. Someday I would like to mention, although there are nearly 700 Face and would be difficult to do one.

In two years we move a lot. If a disease little known and misunderstood, and you notice that a little more is understood.

I still support the definitions that give more of a neurological disorder such as Gelineau syndrome, lack of orexin, autoimmune disease (in discussion)

It is mentioned as within diseases "rare" and still say it is not. Little known because no published neuroscience at the grassroots level and that's too much data when they are mistaken: patients, relatives and some doctors who know not consider it rare.

The narcoleptic population is low in the medical records and that makes not much moved in research.

We must never forget that not only is a dream, has other edges that sometimes life more complicated than simply having fragmented sleep at night and sleep times in the day. Obviously, if you woke up 6 times, you had paralysis, hallucinations and nightmares, your watch is not optimal, I would say this is amazing ....

A good night's sleep of 8 hours without waking, good oxygenation at night and relaxation exercises help a lot. Respect for sleep and wake times as well.

But not all.

We take Modafinil? Xyrem? We must make periodic checks of the heart and whether there are arrhythmias.

We take other medications? A liver function ensures that we are assimilating well and healthy liver as they are years of ingesting drugs

The long-term prognosis. We laboratory studies tell us where we are going in time.

Controlling symptoms of anxiety or depression that may be caused by medication and having a chronic, a kind of backpack that we must learn to lead.

And it's all for today, I invite you as always participate in the Forum and so we are enriched by the experience.

In the post often repeat phrases, is not the fault of memory but it is good to reinforce what we know as we await the rest learn

My love and gratitude to the Sleeping Beauties Beautiful and who maintain the rights of patients.

Sleeping Beauty

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2011 Jan 23 2011

Narcolepsy, cataplexy, sleep paralysis and pathological denial .......

Category: Uncategorized - admin @ 23:26

I sit in a bar with some fellow travelers sleep, poor sleep, sleep problems and he tells us that almost fell on Av 9 July by cataplexy.

For non-Buenos Aires tell them it's a very wide avenue of two-way and the speed is high.

We were always in trouble, I thought. But few would accept.

It is not cancer to have a prognosis of death. Not a lot of things, is what it is.

Lack of orexin in the brain, the hypothalamus

Gelineau syndrome,

I do not like the name Narcolepsy because people associate it with disease costing

Universities studying new trial of medications, laboratory billing with both hands his earnings with modafinil and the other for cataplejías and sleep paralysis (tricyclic antidepressants are used to reconstruct bedtime to sleep architecture) and we see how to explain this , almost alone.

Why, I wonder to infinity, will not talk about these issues?

I wounded a point that bothers me the denial of many and when you shake the jaw is not just for a joke or prank, it may be before a shock or blow of stress.

I always write the same thing, you can study, work, think, reason, etc.., Etc., Like everyone else. Driving motorcycle, bike, whatever you want, nothing is forbidden. Be a surgeon or a singer.

But I'd like airplane pilots had sleep latency test and polisomngrafias day.

There are risks of accidents, will be known over the years, the time will count those who were in trouble for automatic acts, or omissions and those with fatalities

Anyway, I met enthusiastic people who then gave up work to deny having a disease.

I met who told me a few days ago: do not read this blog that makes you sick!

That was easier to accept the things I could not fulfill in a timely manner, the time of another clear ........ not want to know, always preferred brand us from depression, vague, quedados and other nonsense, and I, with my certificate seal 500 times and several studies that confirm the pathology, which I answer? I have good neurologists? Nothing, I run with their stupidity.

If we do nothing, we pass over, like a car speeding down the avenue in the midst of cataplexy.

Let's think together how to move forward with this

Sleep well, no paralysis or nightmares of terror.

Greetings to all

Sleeping Beauty

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2010 November 18 2010

Accept and defend the rights of sick of Narcolepsy

Category: Uncategorized - admin @ 23:31

Some do not want to even begin. Go to the doctor and do not reach the PSG to know if you have narcolepsy or other illness. Others go further, studies are done, see the neurologist and do not attend the next query. There is one group that I think is a good part of the narcolepsy: those who convince themselves that it is important and what things we all do, as they say grandmothers.

But life starts and eventually to make the balance are the difficulties could be minimized with proper treatment and good laws.

Some people diagnosed at 20 years or more remember their empty hours of activity to be tired, fainting or fainting attributed to when it was actually an untreated cataplexy. Of paralysis and know that they flee, they are like so many fantasy and horror that few believe that a doctor or renamed Fleni institutes have in their questionnaires questions which seem to the argument of a Japanese horror film, and they do that know (and japanese Fleni Films)

The operators of years have learned to handle this but the law can play tricks.

Receipt of the Italian association of AIN narcolepsy a note to prevent a man sees another person alone and his son after the divorce judgment "excessive sleepiness". It is the argument of someone wanting to take the hard judgment to morally destroy another person, who was his spouse.

Students who need special hours should be a law for this.

Employees who can do part time or have your lunch hour dedicated to a nap (do this by those who have narcolepsy to sleep in the spare time!)

A person in divorce proceedings to be underestimated

A parent who does not want to recognize your child's treatment, in the case of a separation and alimony.

Drivers who may have an accident and not be covered by insurance!

Social Work and the famous PMO has to nacolepsia as a joke as much money spent on medication for life.

And the list can be quite extensive.

They hide, and I understand they do not mean to have that rare, unseen, not smell, and shows no marks on the body, which does not reduce functions to the intellect, and not to give the impression of "painful illness "No records, but ...... affects the hypothalamus, a sneeze is not simple, is a disease ... if they keep themselves hidden from left to help others.

Those others are a reflection of one and if no progress will be more injustices.

We are holding meetings, some attended has always excited others come and go, want to stay no one, neither they know.

I'm not the first to tell, or pretend to harangue anyone, just saying they should close all those who understand that treatment is needed (some more than others) to help with it and especially to leave something for the future, a step that facilitates that is diagnostic to understand what happens and not run away as fearful questioning in the Middle Ages that should be locked up if you have what happens ......

Nastassja Kinski, beautiful woman and actress, has narcolepsy. An example that is not vague pathology falls headfirst into the plate with Spaghetti and non-yielding on what society imposes, but who cares ...... they put on us?

It is interesting to undertake a battle and get something from this? Almost all of Latin America does not have free health plans, I think that narcolepsy does not kill the sensitivity, we must help and claim.

Sweet dreams to all

Sleeping Beauty

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2010 Sep 20 2010

Cataplejías, sleep paralysis, hypersomnia, narcolespia and literature ...

Category: Uncategorized - admin @ 11:26

Hello to all who have been following this space, encourage us, share their experiences about the disease and go on and on ... even though it costs us understand and complete dissemination of Narcolepsy.

Thanks to all of you and Mariana for the story (I put it here because in the field of literature was lost!)

MAN'S BEST FRIEND

Mariana Duhalde

Sandro is a furry animal oddity, its future owner, Miriam, too, not because it is hairy but she also is a rarity. But the way these two people as individuals are in the world of the impossible, undermines all odds and statistics possible. Our little friend, other puppy is normal, ordinary, except for one tiny detail that few can pass up. It serves as a guardian, so if one looks a fearsome bark to discourage any undesirable predator, you better not have Sandro, who sleep soundly until the danger passes. As a pet, leaves much to be desired as it does not respond as expected to cuddling and ear scratching. It's almost as if acariciáramos a cushion. If on the other hand, we want a show dog, a proud animal well-scented and shiny coat, to take a walk and strut to the neighbors, forget it. It will not work. Try putting his brush belt, and perhaps more successful. But if we settle for some company, Sandro will not disappoint us and will always be at our feet, without having to bribe him with delicious dog biscuits. And that is precisely what Miriam seeks, not knowing that what you will find more. That little detail that makes so many give up, is the ace that Sandro has up his sleeve.

Miriam seems to be more of the many typical teens of the new modern world, but certainly is not. Suffers and enjoys, represses and exploits, packed and unpacked in seconds, and search and retrieval but not always find. Her youth makes her living all a mile a minute, without pause or rest, although unique way. Why so singular? Because if too angry with their parents or siblings, for example, instead of giving a loud slam of film is limited only to fall to the floor collapsed, literally. And in the most graceful and unusual situation, knees and seems to betray him to pass out with laughter.

His life is not easy, but somehow or another, so it is for everyone without exception. Struggles to find an identity that does not resemble any, struggles to belong without losing its very essence, being cool or at least seem so, fight for your condition does not limit or condition the way others see her. And I never lost hope. He laughs at itself, mocking their flaws their theatrical parody falls, turning what could be tragedy into comedy. So when you go to Sandro, frantically excited that his touch collapses without notice, need not know anything else. It is a meeting point, as in mathematics when two lines intersect. It has to be yours and nobody else, no doubt.

Miriam looks at who will be your dog and go beyond it. He understands, and because they can see what so many discarded. She and he are unique among such monotony imposed. You do not need anything else. The woman who serves, tries to explain that it may not be the best choice because unfortunately the dog ... But Miriam interrupts. Just what you want, and with great determination, pick him up before the incredulous eyes of the woman, and whispers something in his ear, because she knows she can hear. Finish the corresponding paperwork, prepare your bike and put the puppy, which is starting to come out of his reverie on the basket, calmly and without haste.

The fresh air of the morning is good for them both, the comfort, the active. Miriam looks at Sandro, and gives him a small smile, very controlled to prevent the puppy excited, because they both know well what can happen next. Knowingly, Sandro looks, but does not move the tail looks only.

Miriam thinks of how many planets and moons must have aligned to make this meeting possible, though not believe in horoscopes and astrology. Think about what your father say when he hears everything and prepared a speech to beat strong and accurate, but NOT know a Dad never last long.

Sandro, the name you chose for your friend, lives up to his mother, a fan of gypsy heartbreaker. He knows that when his mother heard him, the puppy will love automatically. All covered. Best impossible.

And to think that was who said that before a dog would be best to choose a cat, it is well known that there is no creature who likes to romp over 23 hours a day. But to sleep at any time, she does not need company. Miriam does not need that, a kitten is fine for some but what she wants is a dog, a loving and loyal animal, that's what she wants. Follow you to the end of the world, in good times and bad, which is excited with the sound of your footsteps at the door, you look without reproach and without demands. And it does.

The detail, that rare detail that makes them so special to them, not hindrance. Cataplexy or no cataplexy, are inseparable and happy, no matter what anyone says. Because when Miriam laugh out loud at some nonsense and feel betray their muscles and drop it, you know the warm muzzle Sandro bring it back gently. And when they ride in a lovely neighborhood place, and Sandro was so excited to see another dog, while her body fails, Miriam palmeará the back, take it into his arms and whisper in my ear once again these words, which only they know, "you're not alone."

© 2009, Mariana Duhalde

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2010 Aug 10 2010

Narcolepsy has no boundaries

Category: Uncategorized - admin @ 21:26

Hi everybody s those who are looking information on narcolepsy, sleep paralysis, cataplejías, hipersomia, and other discomfort can be added, however small, to this condition ....

In Spain on holiday, enjoying or suffering the summer, since the lack of air and excess heat are not very good for us and noticed his absence in recent months.

Mexico from the beginning, like Chile, gave us their experiences. Colombia is very close, for the invaluable presence of our friends Marce, Light, David and others who have narcolepsy but not in Argentina joined this project to come together to access to new research and try to disseminate, in a short time, in schools and universities to improve the quality of life for all of us. Andre de Chile but now in Buenos Aires and other Chileans who have written in the Forum. All America this

The recognition of social work, public hospitals and care centers in general we are concerned, the price of drugs as well.

The world is at your own pace and we're all with different problems. Each country has a health system, there are better or worse, but our aim should be recognized as patients who need treatment for life, until they discover something else.

Thus, scattered around the world, we go together to be heard and create a movement of awareness.

The U.S. has legislation that includes all or most of what we expect. France has come very far in terms of rights. Italy has also its association and the list goes on ....

This blog was born in Argentina, but there are everywhere. Mexico has its own and on facebook I have Narcolepsy find the address to join. No one is out of this enterprise of patients.

Narcolepsy is one more than we imagined and early diagnosis saves many discomforts and complications. Do not forget to consult a neurologist bringing you the information yourself, and other physicians, general practitioners and other specialties, we will be informing them what happens to us. Thus when we are anemic or have thyroid irregularity, or muscle tension by poor sleep, are treated equally without leaving perhaps a neuropathic pain product of the same and everything is part of a single History Clinic.

Thus, without banners or all together we will continue this path in which we decided to leave the darkness and support each other.

A big hug to all the usual and yet to come

Come back for more!

Sleeping Beauty

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