Charity

Charity

Hello,

So let talk about charity.

When you have read al my blogs messages, you can see that my parents died on cancer,

because of that i do charity work, like selling things where i can lay my hand on.

What do i donate:

every year i donate a big part of my vacation money.

i sell things online and to friends and that money i donate the biggest part of that to charity, with the money i keep i buy new things to sell.

I sell anyhing, because money is money and they can use every penny.

Last year we had a benefit concert/party al the money we made went to the cancer foundation.

I want to go do affiliate and other things online with websites, as also make money with that to give to charity.

but i dont the know how about those sites, i hope that i can learn that from someone.

So i hope that you think, i gonna donate to it doesn`t matter how much the cander foundation is always open for every donation..

And is doesn`t matter what you earn on youre salary it can happen to anybody, and everybody knows someone how have cancer ore how has died of cancer

 

 

 

Funny narcolepsy pics

Funny

I always laugh about it..

 

Find work with Narcolepsy

Find work with Narcolepsy

How to find work with Narcolepsy?

Allot of people are scared to apply for a job, because they have Narcolpesy.

I can understand that, its hard to sit before a person how can turn you down for a job.

What goes on in youre mind when you sit there.

1. Tell the truth?
2. Don`t fall a sleep during the conversation ore waiting room.
3. If they don`t ask, will i tell i have Narcolepsy

I have in the few years i am working, applyed on thousands of jobs.
In the beginning i told always the truth, also when they did not aks about it.
That was the most dumb thing i could do, you saw on the persons face across the table its done go home.

So after allot of sollicitations i did not told them about my sleeping disorder, only if they asked if i have a medical history,
This way i could get normal jobs, ok after a few weeks they would ask "jimmy how come you always a sleep during the coffee and lunch break? are you a gameaddict? ore addict of something else"
Than i told them about Narcolepsy, they were shocked some of them kicked my out of there compagny other tried to find the right job for me in there compagny.
The problem was i always ended on the street because i dont have any papers in that kind of work i have only my high school diploma, and that is not enough.

So the best tip there is for people with Narcolpesy still on school.
Learn till you drop and have allot of diploma, so that compagnies want you even when you have Narcolpesy they dont mind than.
And never be afraid to tell the compagny that you really want it and that you will give 110%.

I hope to find the right job on day.
My dream was to be in the army but here in holland they dont want disabled people.
So now i am thinking maybe a office job so wheb i fall a sleep that it dont mind for those 5 min.

Ore a job in construction like technician resume.

We will see what the future brings....

Dreams with Narcolepsy

Dreams

 

Dreams, everybody has dreams, but most of the time people don`t know anymore what the dream was.

Narcolepsy dreams are verry real like, if you wake up often you think youre dream was real.

Let me tell you about some dreams of mine.

Dream 1: 

I was having a heartattack in my dream.

when i wake up, i was scared and was grabing my heart thinking it was real.

Dream 2:

hearing things like a person under the bed, ore a person getting up the stairs,

sometimes i thought it was my dad (what cant be because he died) then i was suddenly awake i was shouting dad, be queit i wanna sleep.

After i done that i was thiking Fuck it cant be true it was a dream.

and the list goes on.

Scary dreams and nightmares are really scary, often you think its real

The nice part of dreams with narcolepsy are the nice ore naughty dreams.

I dont gonna tell you about that, that would not be nice haha :)

I would say dream sweet and nice...

Driving and Narcolepsy

Driving and Narcolepsy

 The words driving and Narcolepsy (sleepingdisorder) is for the most people a no go area.
I can understand that they are scared that the person how is sitting behind the wheel can fall a sleep,
that they get them self killed ore other people on the road.

I can tell you there are allot of people with narcolepsy drive,

Here in the netherlands are there a few tests that you have to complete before they aprove that you get youre driverlicense.
The tests are really weird, and false if i can say so.

Test 1:
During a day you have a pocket pc with you, and it alarm goed every 2 hours than you have to do a  few tests like :
tap the screen when it goes wit, ore tap when you see a 3 on the screen between the 0 to 9.
this way they wanna see if you are still alert during the day

Tests 2:
Laying relax on a bed in the hospital, with the light dimmed so its almost dark and you have to stay awake for 1 hour, but there is a camera on youre eyes to see when you fall a sleep, if thats happens they stop the test for that hour, and this happends 3/4 times on that day.

Tests 3:
Laying relax on a bed in the hospital, with the light dimmed so it almost dark in the room and you have to push a button when you see a red light goes on.
This is also for a hour and four times that day, when you are to late to push ore you forget 1 the will stop the tests.

After al these tests they will look at it, and will come to a answer if you may ore may not get youre driverlicense.

I passed these test verry good,
But still no driverlicense dont have the money for it, but that will come.

For people how gonna does these tests for they driverlicense.
i wish you all good luck, and hope that you will get it.   

My Life

My Life

So after al the info for people how didn`t know was Narcolepsy was, i am gonna tel my story..

 

I am born on the 07/31/1987 in the netherlands, I am living al my life in a smal town called Katwijk,
My first few years on this earth were already crazy.
My parents divorced on my 2/3 year dont know allot of it.
When i was 5 years of age my mother was in the hospital because she had breast cancer on a verry advanged stage, she died also in this year, she was around 35 years. (RIP)

The next few years went pretty normal i was a child, playing outside with friends.
Around when i was 10 i was getting bigger and stronger.
So when people were calling my names ore using cancer badly, i would beat up out of frustration.

When i was 11 years of age i had henoch schonlein, is a disease of the skin and other organs that most commonly affects children. In the skin, the disease causes palpable purpura (small hemorrhages); often with joint and abdominal pain. With kidney involvement, there may be a loss of small amounts of blood and protein in the urine, but this usually goes unnoticed; in a small proportion of cases, the kidney involvement proceeds to chronic kidney disease. HSP is often preceded by an infection, such as pharyngitis.

When i was around 13 i was getting the first symptoms of Narcolepsie.
I was falling a sleep at school, when i got home i went go doing homework on my bed but that was only for a short time after that i was a sleep.
I had cataplexy atacks when i was having a good laugh ore when i was getting mad ( to much emotion was bad because my muscles stopt working at the moment)
So i was on the ground allot and you could see it on my face my mouth was falling open and my tongue out.
When i told this to my dad hy said "jimmy you are just lazy".
I told this to my hospital docter and he wanted me to do some tests ( so you can read in the info tests)
after these tests i was clear i had Narcolepsy.
I was sleeping allot and testing all kind of medicene, but i was also going to school but that was all going good.
The docter asked me if i wanted to do tests to find out more for Narcolepsy, and i am doing this because i hope in the future people can get better help.

When i was in my last year of school, i was getting in the door and saw my sister and my dad crying, and i had already a bad feeling when i was getting to home.
When i was inside my dad asked my to sit down, and he told me he had also cancer. my world ended at that moment.
I had to go on sayed my dad because he was getting chemo, but after better examening my dad, they told him he could not be saved, he had tumors in his brain, longs so the stopped the chemo.
My dad died on the second day of christmas in 2003 and he was bury on 31 of december (RIP).
So my last year of my highschool was Fucked up, but i still got my diploma after al this and al that sleep.

When i was 18 i wanted to get my driverlicense but i didn`t get it because of Narcolepsy, i was fighting for it and ask about tests and medicenes.
After a few years i finnaly may do some tests for my driverlicense and i passed.

At the moment i am 25 years old, and i am a handicapt person because no normal boss want to hire me to work for him, he is scared that i can`t do the job and fall a sleep allot.
I work at the moment at a agency where handicaped people work, but thats no fun because its work like doing the most simple things there are.
I am almost the most normal person at my job (after the people how are the boss of the agency) al the other people are mental handicaped so they cant do a normal job.
I can co do allot of jobs if the let me try it, i can learn as a normal person and the job as a normal person,
i have only to be busy and i wont fall a sleep,
So i am working for minimum pay, so i am coming short every month, because i cant go to my parents.

But for the rest i am living the same life as every 25 years old guy,
going out with friends, going after woman, watching movies playing games.
I dont take my medicene only when i need it like driving ore a job interview.
Only you can see that i have Narcolepsy when i am sitting down and i am bored than i will fall a sleep.

 Thats never happend to me, i only get tired when i am waiting for my dinner.

 

Treaments Narcolepsy

Treatments

Narcolepsy treatment

Although no cure yet exists for narcolepsy, a combination of treatments can help to control your narcolepsy symptoms and enable you to enjoy many normal activities. The treatment that works best for you will vary according to your specific narcolepsy symptoms, but will likely include a combination of counseling, medication, and lifestyle changes.

Lifestyle changes to ease the symptoms of narcolepsy

Making healthy lifestyle changes can be effective at helping you manage narcolepsy symptoms, in conjunction with counseling and support, and any medications your doctor recommends. Daytime habits such as exercise, diet, and how you manage stress play a large role in helping you maintain a healthy sleep-wake cycle. It’s important to follow a regular sleep schedule, a relaxing bedtime routine, and take practical steps to counter the effects of narcolepsy during the day.
Combining the various self-help treatments can help to not only improve your daytime alertness but also help reduce the symptoms of narcolepsy.

Self-Help for Narcolepsy
Schedule your sleep periods	Take a few brief, scheduled naps during the daytime (10-15 minutes each). Try to get a good night’s sleep during the same hours each night. Planned naps can prevent unplanned lapses into sleep.
Avoid caffeine, alcohol, and nicotine	These substances interfere with sleep when you need it.
Avoid over-the-counter drugs that cause drowsiness	Some allergy and cold medications can cause drowsiness, so should be avoided.
Involve your employers, coworkers, and friends	Alert others so that they can help when needed.
Carry a tape recorder	Record important conversations and meetings, in case you fall asleep.
Break up larger tasks into small pieces	Focus on one small thing at a time.
Exercise on a regular basis	Exercise can make you feel more awake during the day and stimulate sleep at night. For example, take several short walks during the day.
Avoid activities that would be dangerous if you had a sudden sleep attack	If possible, don’t drive, climb ladders, or use dangerous machinery. Taking a nap before driving may help you to manage any possible sleepiness.
Wear a medical alert bracelet or necklace	A bracelet or necklace will alert others if you suddenly fall asleep or become unable to move or speak.
Eat a healthy diet	Aim for a diet rich in whole grains, vegetables, fruits, low fat dairy, and lean sources of protein. Eat light or vegetarian meals during the day and avoid heavy meals before important activities.
Relax and manage emotions	Narcolepsy symptoms can be triggered by intense emotions, so you may benefit from practicing relaxation techniques, such as breathing exercises, yoga, or massage.

Medications for the treatment of narcolepsy

Medication can be helpful in treating the major symptoms of narcolepsy: sleepiness and cataplexy. Commonly prescribed drugs for narcolepsy are stimulants, antidepressants, and sodium oxybate. All medications have side effects so talk with your doctor. Even if your narcolepsy symptoms require the use of prescription medication, experts recommended combining a drug regimen with lifestyle changes and counseling or therapy.
Common medications used to treat narcolepsy symptoms include:

• Stimulants. Stimulants are the mainstay of drug treatment for narcolepsy. These include modafinil (Provigil), a stimulant used during the day to promote wakefulness and alertness. Side effects of modafinil may include headache, nausea, dry mouth, and diarrhea. Psychiatric side effects, such as anxiety, mania, hallucinations, and suicidal thinking have also been reported, so the drug should be avoided if you have a history of depression, mania, or psychosis.
• Sodium oxybate (Xyrem). This strong drug may be prescribed if you have severe cataplexy. Sodium oxybate is also known as GHB, or the "date rape drug," but is considered safe for treating narcolepsy when used responsibly to promote sound sleep, diminish daytime sleepiness, and reduce incidences of cataplexy. However, the side effects can be serious and may include nausea, bed-wetting, and worsening of sleepwalking. Too high a dose can even lead to difficulty breathing, coma, and death.

•  Antidepressants. Selective serotonin reuptake inhibitors (SSRIs) used to treat depression may also be used to help suppress REM sleep, and alleviate symptoms of cataplexy, hallucinations, and sleep paralysis. These include fluoxetine (Prozac), sertraline (Zoloft), and newer antidepressants such as venlafaxine (Effexor). While the most common side effects of antidepressants include decreased sexual desire, digestive problems, restlessness, headache, and insomnia, there can also be dangerous side effects.

Tests

Tests

Like this woman that you see on the picture, i have also been like that in the hospital.

A narcolepsy diagnosis requires several tests. A doctor will perform a physical exam and an in-depth medical history to rule out other causes of  symptoms. Keep in mind that having some of the major symptoms of narcolepsy doesn't necessarily mean you have narcolepsy.
In addition, several specialized tests, which can be performed in a sleep disorders clinic, usually are required before a diagnosis can be established. Two tests that are considered essential in confirming a diagnosis of narcolepsy are the polysomnogram (PSG) and the multiple sleep latency test (MSLT). In addition, questionnaires, such as the Epworth Sleepiness Scale, are often used to measure excessive daytime sleepiness.

Epworth Sleepiness Scale

During the Epworth Sleepiness Scale test, you will be asked to answer eight questions using a scale from zero (not at all likely to fall asleep) to three (very likely to fall asleep). The resulting total score is between 0 and 24. Scores of 0 to 10 are normal. Total scores above 10 generally warrant further investigation.

Polysomnogram (PSG)

A sleep study, or polysomnogram (PSG), is a test performed in a sleep lab. It electronically transmits and records specific physical actions of the body while you sleep, such as muscle movement, breathing patterns, and brain activity. The recordings are analyzed by a qualified sleep specialist to determine whether or not you have a particular sleep disorder.
What to Expect During a PSG
If you're scheduled for a PSG, you will arrive at the sleep lab about two hours prior to bedtime without making any changes in your daily habits. You will be assigned to a private bedroom in a sleep center or hospital. Near the bedroom will be a central monitoring area, where the technicians will monitor you while you sleep. You will be hooked up to equipment that may look uncomfortable. However, most people fall asleep with little difficulty. Your whole night's sleep will be monitored and recorded.

Multiple Sleep Latency Test

Performed the morning after the overnight polysomnogram, also in a sleep lab, this test measures how long it takes a person to fall asleep (sleep latency) during the day. During this test, you will be asked to take four or five scheduled naps every two hours. The first nap starts two hours after awakening that morning. People with normal sleep and alertness take about 10-20 minutes to fall asleep. People with narcolepsy (and other causes of abnormal sleepiness) take a much shorter time (less than five minutes) to fall asleep.
Two weeks prior to these tests, you will be asked to keep a sleep diary that records bedtime, wakeup times, and nap times. Your doctor will work with you to create a plan to gradually eliminate mediacations that could affect the sleep test results.



source : http://www.webmd.com/sleep-disorders/guide/diagnosing-narcolepsy

 

Symptoms of narcolepsy

Signs and Symptoms of Narcolepsy

The most people get there first experience of symptoms between 10 and 25 years of age, the symptoms can be diffrent on persons.

The biggest symptom is excessive daytime sleepiness and abnormal REM sleep.

other, unusual symptoms of narcolepsy may be related to your abnormal REM sleep, including hallucinations, sleep paralysis, and cataplexy (sudden loss of muscle control).

• Cataplexy (loss of muscle control). Often, narcolepsy may cause you to have a sudden loss of muscle control while awake, usually triggered by strong emotions, such as laughing or crying.

• Hallucinations. Some people with narcolepsy experience vivid, sometimes frightening, visual or auditory sensations while falling asleep or upon awakening.

• Sleep paralysis. You may be unable to move or talk at the beginning or end of sleep. 

• Microsleep is a very brief sleep episode during which you continue to function (talk, put things away, etc.), and then awaken with no memory of the activities. 

• Nighttime wakefulness. If you suffer with narcolepsy, you may have periods of wakefulness at night, with hot flashes, elevated heart rate, and sometimes intense alertness.

• Rapid entry into REM sleep. Narcoleptics have unique sleep cycles. You may enter the REM or dream phase of sleep right after falling asleep, whereas most people take about 90 minutes to enter REM. Therefore, you’ll experience the characteristics of REM sleep (vivid dreams and muscle paralysis) at the beginning of sleep, even if that sleep is during the day. 

Cataplexy atack from laughter, ( i had this also when i was to happy ore had the giggles at school ore outside it could happen anytime and everywere)

Narcolepsy

 Narcolepsy

Narcolepsy is a chronic sleep disorder, or dyssomnia, characterized by excessive sleepiness and sleep attacks at inappropriate times, such as while at work. People with narcolepsy often experience disturbed nocturnal sleep and an abnormal daytime sleep pattern, which often is confused with insomnia. Narcoleptics, when falling asleep, generally experience the REM stage of sleep within 5 minutes; whereas most people do not experience REM sleep until an hour or so later.
Another one of the many problems that some narcoleptics experience is cataplexy, a sudden muscular weakness brought on by strong emotions (though many people experience cataplexy without having an emotional trigger). It often manifests as muscular weaknesses ranging from a barely perceptible slackening of the facial muscles to the dropping of the jaw or head, weakness at the knees (often referred to as "knee buckling"), or a total collapse. Usually speech is slurred and vision is impaired (double vision, inability to focus), but hearing and awareness remain normal. In some rare cases, an individual's body becomes paralyzed and muscles become stiff. Some narcolepsy affected persons also experience heightened senses of taste and smell.
Narcolepsy is a neurological sleep disorder. It is not caused by mental illness or psychological problems. It is most likely affected by a number of genetic mutations and abnormalities that affect specific biologic factors in the brain, combined with an environmental trigger during the brain's development, such as a virus.
The term narcolepsy derives from the French word narcolepsie created by the French physician      Jean-Baptiste-Edouard Gelineau by combining the Greek νάρκη (narkē, "numbness" or "stupor"), and λῆψις (lepsis), "attack" or "seizure"

source: Wikipecia.

Welcome to my blog...

Welcome to my info blogger Sleepingdisorder Narcolepsy.
I created this blog to showcase how life is with a sleepingdisorder Narcolepsy, and how to life with it.

My name is Jimmy Thiels, i am from the Netherlands and i am 25 years of age.
I have a sleepingdisorder called Narcolepsy, and i have this now around 12 years.

I created this blog for people with Narcolepsy and for people how wanna know how its like to have Narcolepsy, and show people how my life is been with this disorder.

DON`T be afraid i will not fall a sleep when i am on my blog....