Narcolepsy Support Groups: Help is Here for You

September 11, 2011 By Leave a Comment

Introduction:

Before jumping into a discussion of the various groups assisting Narcolepsy patients, it is important to mention the disease itself briefly. Narcolepsy is a neurological disease, which leads to various physical as well as psychological disorders. The symptoms range from acute sleeping disorder (with patients falling asleep during the day irrespective of the time and place) in spite of a sound sleep at night to acute concoctions and emotional outbursts. Various social feelings such as humor, excitement and even emotional moments with the dearest and nearest one can trigger off cataplectic attacks. As a result of this, the patients face psychological disorders and gradually withdraw themselves from the social life. They are often regarded as blunt, indiscipline and unmotivated. At times, this can be life-threatening as well. Various support groups have emerged all over the world to provide patients of Narcolepsy all the necessary medical assistance. They are helping victims to overcome the disease and lead a normal life once again.

Support Groups:

The Narcolepsy Support Group is a community that is primarily comprised of people with a history of Narcolepsy and family members and friends of Narcolepsy patients dedicated to dealing with Narcolepsy, together. The first and foremost thing that a patient of Narcolepsy needs is empathy instead of sympathy. While unnecessary sympathy may become frustrating, empathizing with a patient will make them mentally stronger and provide the strength needed to fight the disease. Here is where the Narcolepsy Support Groups play a very handy role. The patients or their family members can always come in contact with any of these support groups and share their problems without any hesitation. Apart from that, when contacted, these groups can provide the patient the necessary information about the nature of treatment they will need and the places where they can get themselves treated.

The Way they Work:

Generally, the Narcolepsy Support Groups gather the email addresses, phone number, age, sex, how the disease was diagnosed, for how long he or she has been suffering, what exactly are the symptoms and other information about the patients and maintain a database. They  then contact the doctors and psychologists and take their guidance in setting up their operations. With advice from the doctors they arrange interactive sessions of funs, slide shows of various types of colorful photographs, pictures and paintings etc. They have the option of inviting the patients to write on various Narcolepsy-related topics. They also ask them to share various interesting food recipe, games, and indulge in discussing different current events in the websites.

The main idea is to make the patients feel at ease and happy and also helping them to have an open mind to adopt different opinions, points of views and thereby remove the mental blockage that has developed in the back of their minds.

It’s common for people working in shifts (especially in factories, call centers, hospitals) in a 24×7 work profile to be more prone to this disease. For the Narcolepsy patients, medicines are not the only way out. While the medicines, to some extent, decrease the severity of the disease, in maximum number of instances, it’s seen that the medicines tend to have certain side effects which cannot be ignored. Hence, there is ardent need of a very strict dieting habit and some basic physical as well as mental exercises. The Narcolepsy Support Groups provide the guidance in dieting and even run a course on various physical and mental exercises in accordance to the age and sex of the patient and on the severity of the disease.

Apart from all these already mentioned activities, other objectives of the Narcolepsy Support Groups can be jotted down in the following fashion:

  • Since there are a number of support groups operating virtually all over the world, they serve as a centre of excellence for a particular place, thereby assisting the patients. This is particularly helpful for patients staying in the rural areas who do not have access to world-class medical treatment very quickly.
  • Like many social organizations taking care of other diseases like AIDS and Leprosy, these groups also contribute extensively in educating the families and healthcare professionals about Narcolepsy
  • Constantly maintain and develop themselves so as to fulfill the need of the patients at any given point in time
  • Make Narcolepsy patients aware of their rights and privileges they are entitled to enjoy
  • Serve the patient in the hour of their need by providing the best possible treatment

There are innumerable support groups working tirelessly all over the world and they are easily available in the net. Hence, it is advisable, whenever someone develops symptoms of Narcolepsy or is diagnosed with the disease, the patient or any of their family members should contact any of these groups and take a friendly advice from them. May be, it will help the patient to overcome this disease quickly. Remember, medication is not the only way out. There are various methods of alternative treatments the patient can be guided through by these support groups. Hence, be frank and free to contact them and disclose your problem without any hesitation before it is all too late.

Conclusion:

With human life getting more and more hectic, every day, people or better to say their body clock and metabolic system is finding it harder and harder to come in terms with them resulting various diseases like Narcolepsy. However, with the tremendous development of medical science over the last few decades or so, new avenues of diagnoses are being explored. For example, the development of genetic map has indeed been a shot in the arm so far as the treatment of neurological diseases is concerned. Who knows, those days are not far away, when the evil of this highly embarrassing and dangerous disease will be eradicated form the face of this world for ever. Whatever happens, the contribution of these support groups can never be ignored and they will be regarded as one of the pioneers in eradicating the disease.

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Narcolepsy: Why It Happens

September 11, 2011 By 3 Comments

Introduction

The first and foremost question that crops up while going through this topic is what is Narcolepsy?  In short, Narcolepsy is a neurological disorder that causes extreme weakness of body muscles resulting in sleepiness throughout the odd hours of the day-even in the midst of a hectic work.
The specialty of this particular decease is that it has nothing to do with any psychological problem and hence, it’s seen that the patient’s social awareness and their ability to respond – as well as their auditory capacity – remain more or less unaffected.

Mild Narcolepsy Symptoms

The primary way to identify a Narcolepsy patient is through the occurrence of Cataplexy, which is a sudden muscle fatigue resulting in strong emotional outburst. Though there are exceptions, it is generally true that up to 70% of Narcolepsy patients also suffer from Cataplexy.

Apart from Cataplexy, the main characteristic of a Narcolepsy patient is falling asleep or feeling drowsy all through the day, even after a sound sleep in the night.
It’s quite common that a patient with Narcolepsy falls asleep in trains and buses, thereby missing the stops. They often fall asleep even while driving their cars, resulting in fatal accidents. There have been instances when a patient has fallen asleep in a dentist’s chamber and have to be shaken awake by the dentist. The more these things occur, the more the patient goes into a social cocoon, withdrawing themselves from the social activities and hence needing immediate medical attention.

This phenomenon is regarded as Excessive Daytime Sleepiness (EDS). Almost 90% of the Narcolepsy patients suffer from this disorder. Other common symptoms are hypnagogic hallucinations. Almost 30% of patients are recorded to suffer from this particular symptom. This particular symptom is attributed to certain dreamy visions those a patient witnesses at the moment of falling asleep. Though one school of thought tends to give certain super-natural angles to this phenomenon, extensive research has shown the exact reason behind this is othing more than a hypnagogic hallucination.

Narcolepsy sufferers also often complain of acute disturbance of sleep during night; some secondary symptoms such as blurred or double vision and dropping eyelids are also very common. Another very common symptom, present in almost 25% of Narcolepsy cases is a condition called Sleep Paralysis. A patient with this particular symptom cannot talk or even move when they are falling asleep or awaking from sleep. This may last anywhere from few seconds to as many as several minutes.
Though in general, Narcolepsy patients have sound sleep at night, there have been certain cases, where a patient has prolonged period of sleeplessness during night, with increased heart rate, occurrence of hot flashes and at certain instances acute alertness for hardly any reason. It’s also often seen that the Narcolepsy patients fall asleep faster than normal, and may get up after hearing an almost inaudible noise.

While a normal person takes about one and a half hour of sleep on an average to see dreams, a Narcolepsy patient can see dreams instantly. As a result of this Rapid Eye Movement (REM) is also a unique feature of a Narcolepsy patient during sleep.  At times this REM can be extremely rapid and abnormal.

The most important phenomenon about Narcolepsy is that except for daytime sleepiness, the other symptoms do not affect the patient to a large extent. Hence, those patients who do not have daytime sleepiness may not seek much medical help, thus hindering a conclusive diagnosis.

It can be mentioned that the symptoms of Narcolepsy may remain hidden for many years. In fact, there are cases where Narcolepsy has been diagnosed after as many as ten years of suffering from the symptoms of the condition. Almost 50% of the adult Narcolepsy patients coming for diagnosis have recorded to have been affected by the disease between 15 and 30 years of age.

Conclusion

In spite of extensive research being conducted all over the world, the exact cause of this particular disease is yet to be recognized. One school of thought claims that Narcolepsy is related to a genetic disorder that exists in the history of a family. It’s believed that up to 10% of all Narcolepsy patients had someone else in their families with the condition.

Another school of thought states that Narcolepsy is an autoimmune disease. In these cases, the immune system of the human body produces cytokines more that what is needed for the human body. This affects the immunity system of the body resulting in a series of disorders of various kinds. In this train of thought, researchers believe that the Narcolepsy condition itself may attack those cells which contain brain peptide hypocretin (orexin). This results in certain deficiencies those are the major factors responsible for this disease.

One striking phenomenon that is generally noticed in patients with Narcolepsy is that they contain very low levels of Hypocretin in their body. Though we do not know what exactly causes the damage of the Hypocretin cells, it may be the result of an infection.

Some say that the exact reason of this disease can be a particular type of infection that affects the genetic order. Certain hormonal changes at different stages of life, the environment of the patient, the stress of day-to-day life can also be responsible. A recent study has come out with startling results, though. Almost all the patients of Narcolepsy are recorded to carry HLA-DR15 and HLA-DQ6 gene. Hence, it can be said these gene are more susceptible to Narcolepsy than the others. With research in genetics reaching newer heights and gene mapping already in vogue, we can expect the disease to be eradicated sooner than later.

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Narcolepsy Support Groups: What you Need to Know about the Help that is available

September 11, 2011 By Leave a Comment

Narcolepsy patients all over the world are struggling with a negative self-image because of their sleeping disorder. Narcolepsy symptoms, Cataplexy especially, are not commonly viewed in positive or educational lights. Most patients who struggle with the signs and symptoms of the disorder are embarrassed by their unique medical situation, and they often remain isolated because of this self-consciousness. More and more narcoleptics are seeking out the structure and comfort of Narcolepsy support groups to help them cope with their emotional and personal troubles. In fact, some might say that Narcolepsy and support groups were made for each other.

What is a Support Group?

In the simplest terms, a support group is a gathering of people who have a common interest. While the personalities and lifestyles of all group members may be completely different, one cause brings them together. Most support groups focus on one clear topic: breast cancer, aids, and addiction to name a few examples.

Support groups make it possible for people who are dealing with similar problems in their lives are able to come together, and form a relationship with one another to help them cope with their struggle (receive Narcolepsy help). Most support groups offer a forum for people with a connection to come and openly share their feelings as well as gain information. Medical, emotional, and physical issues can have extremely negative effects on your quality of life; it may be helpful to seek support and empathy from other people who understand your issues. Support groups are also a good opportunity for patients to learn what supporting people with Narcolepsy really means.

The Two Main Types of Narcolepsy Support Groups

There are two main categories in which support groups are placed.

Self-Help Support Groups

Self-help groups are also commonly referred to as peer support groups, fellowships, mutual aid self-help groups, lay organizations, and mutual help groups. Self-help groups are run entirely by the members of the group; the members organize and execute all decisions affecting the group. Most self-help groups consist of numerous volunteers that all express a passion or experience in the cause. Members of self-help groups are free to explore discussion and other therapies at their own pace, in their own way; the members are helping themselves cope with Narcolepsy.

Professionally Operated Support Groups

When support groups are managed by people who do not share the same problem as the members of the group, the support group is called a professionally operated support group. Professionally operated support groups delegate a facilitator that will be in charge of all group discussions and activities. Unlike the free-form, emotional exploration that is offered through self-help groups, professionally operated groups provide a strict structure and regiment for patients who struggle with commitment. Social workers, clergy members, and therapists are all facilitators for professionally operated support groups. The most commonly recognizable forms of professionally operated support groups are hospitals, jails, prisons, and rehabilitation facilities for drug-treatment; professionally operated support systems are commonly located in institutional places.

What are the Benefits of Attending a Narcolepsy Support Group?

  • Finding a place to fit in: Many narcoleptic patients find their disorder much easier to handle, physically as well as emotionally, after finding a home with a support group. Narcoleptics often feel isolated and alone; a very small percentage of Americans suffer from the disorder. Finding a Narcolepsy support group that feels safe and comfortable is a great way to assist you, and even those closest to you, with becoming accustomed to living with the problematic disorder.
  • Gain confidence and self-empowerment: Narcolepsy patients, especially in their adolescent teenage years, often experience embarrassment and shame because of their disorder. Patients with Cataplexy tend to be especially reserved or introverted. Participating in a support group will you see that there are many other people in the world you understand what you’re going through, even if that number seems really small sometimes. Accepting the commonality of the problem will help educate others on the truth behind Narcolepsy; it is an unfortunate, but manageable sleeping disorder.
  • Gaining a forum in which to speak openly:
  • Giving and receiving advice: Freshly diagnosed Narcolepsy patients usually experience a period of confusion and stress following the diagnosis. Support groups offer the option of seeking interpersonal contact. New Narcolepsy patients and old Narcolepsy patients are able to come together and swap stories and advice about their disorder; yet another forum for Narcolepsy education.
  • Reviewing treatments, doctors, etc.: At a Narcolepsy support group, the patients are able to come together and share their own personal reviews and opinions of all-things Narcolepsy. Meeting with your support group gives you all the opportunity to talk about any new treatments, facilities, doctors, etc. that could be helpful. Personal reviews are one of the most reliable, consistent ways to chose a trusted medical professional or treatment
  • Developing new skills: Support groups, especially professionally operated support groups, help members develop new skills for dealing with their Narcolepsy symptoms and complications. Members are able to hone the skills that will help them successfully manage Narcolepsy in the presence of trained professionals that are always ready to lend a hand.
  • Strengthening relationship skills: Because support groups bring together various strangers for intimate conversation, a certain level of respect and integrity is required while conversing as a group. Narcoleptics are often moody or easily irritated, and may benefit from the structured behavioral requirements. Improving listening and empathizing skills in support groups will help improve relationship skills outside of the group.

How Can I Find an Appropriate Support Group for Narcolepsy?

If you decide you would like to explore the possibilities of joining a Narcolepsy support group, there are many avenues to travel when making your decision. Before you make a hasty decision, do plenty of research. Just like internet chat rooms, not all support groups can be trusted.

  • Talk to your doctor: More often than not, your doctor will be able to suggest a support group that fits your needs.
  • Visit a sleep center: If your doctor is unable to refer you to an acceptable group, take a trip to the closest sleep center in your area.
  • Contact medical facilities in your community: All towns are not created equal, and you won’t find a respectable sleep clinic twenty miles. If you are having trouble finding a sleep center close-by, ask specialists at your local medical facilities.
  • Look in the phone book: In the technological age, many people forget about phone books, but they still contain useful information.

Other Ways to Find the Right Narcolepsy Support Group

  • Visit local universities
  • Talk to other Narcolepsy victims
  • Search the internet
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Famous People with Narcolepsy: Do you Know Who They are?

September 11, 2011 By 4 Comments

Harriet Tubman

When it comes to the fight for American civil rights, Harriet Tubman is much more than a woman; she is an institution, and she had Narcolepsy. Born in either 1819 or 1820 into a life of slavery, Tubman was an African-American abolitionist all her life at a harsh plantation in Maryland. Subject to cruel ownership, bitter working conditions, and painful punishments, this brave woman spent her entire life, as a slave, fighting for the equality of African-Americans and the abolishment of slavery.

At the age of twelve, Harriet received a brain injury that would affect her for the rest of her life. An attempt to help a fellow escape had gone awry, and the runaway slave was captured. Harriet refused to follow her overseer’s directions and tie up the escaping slave. Angry at her disobedience, the overseer delivered a harsh blow to the front of her head. The blow was so intense that she suffered a permanent indention in her forehead. The trauma Harriet received caused her to suffer from Narcolepsy and seizures; she later developed chronic headaches and suffered life-long as a result of the beating.

Harold Ickes

An accomplishment not many can claim, Harold Ickes is one of few politicians who is known for falling asleep on the job- in the White House! Campaign advisor to Davis Dinkins during his run for New York Mayor, Ickes was a respected and honored White House Deputy Chief of Staff during the presidential reign of Bill Clinton; Ickes also headed Clinton’s campaign during the presidential race in 2002. During Bill’s famous scandal, Ickes worked hard to help save the reputation of the Clinton family.

It is rumored that Harold Ickes, while a passionate politician and respectable man, suffered from the plagues of Narcolepsy. He would fall asleep at inappropriate times, very often while on the job. He was actually prescribed amphetamine medication to help him stay awake during the day like many Narcolepsy patients today. Ickes didn’t take the medication often because it would cause him to suffer from a new plague, Insomnia. Some people claim that many years of Narcolepsy, daytime sleepiness, and sudden naps, Harold Ickes had become much more defensive, and even displayed a few moments of public vulgarity.

Natassja Kinski

When you hear the name, Natassja Kinski, you don’t think of the word disorder; it should be the farthest thing from your mind. A disorder, however, is exactly what this German actress has. Natassja Kinski is one of the most famous narcoleptic sex symbols in the world. During the 1970s and 1980s, this gorgeous actress was a household name in Germany after starting her career as a model. Later, she turned her interests towards to the Silver Screen. Kinski even won a Golden Globe for her brilliant performance in “Tess”. Despite suffering from an unpredictable disorder like Narcolepsy, Kinski was able to appear in over sixty movies in her entertainment career.  During an interview, Kinski even revealed that she avoids driving at night because she takes her Narcolepsy and the dangers associated with it seriously.

Jimmy Kimmel

James Christian “Jimmy” Kimmel is one of pop culture’s most popular famous people with Narcolepsy. Kimmel is one of comedy’s most celebrated comedians, and is most famous for hosting his late-night talk show, Jimmy Kimmel Live! on ABC. In addition to hosting his talk show Kimmel also co-hosted The Man Show, and Win Ben Stein’s Money on Comedy Central. An accomplished producer, Kimmel has also produces famous shows like The Andy Milonakis Show, The Sports Show with Norm McDonald, and Crank Yankers.

Jimmy Kimmel is one of the most famous people in the media spotlight today who uses his platform to talk publicly about Narcolepsy. He has not been ashamed to share his personal struggle with the disorder with a public who may gain some help or comfort in his story. The comedian was diagnosed with the sleep disorder until his thirties. In an interview with Esquire, the hilarious host got up close and personal about the pains and pressures of Narcolepsy. He said, “You know how when you’re regular tired, your whole body is tired? With narcolepsy, just the inside of your head is tired. It’s like somebody’s gently sitting on your brain. You have almost no focus. All you’re thinking about is not falling asleep.”

Teresa Nielson Hayden

Born on March 21, 1956, Teresa Nielson Hayden would grow up to become on the most famous people with Narcolepsy to ever write literature. Hayden was raised in Arizona where she later became and managing and consulting editor to a company called Tor Books. The American essayist is famous for her work as a science fiction editor and fanzine writer. Teresa Nielson Hayden also manages her own weblog; the blog has become quite popular, and her entries cover a wide variety of topical and interesting material. Throughout her career, Hayden was nominated for five separate Hugo awards.

Hayden was open about her struggles with Narcolepsy and the disorder’s difficult side effects. Not many Narcolepsy patients are able to function adequately in the literary world, a world that requires stillness and focus, but Hayden proves that anything is possible. Hayden’s public acceptance of her sleep disorder, and her admittance of medicated treatment, inspired people all over the country to seek diagnosis and treatment.

Famous Fictional People with Narcolepsy Disorder

Tyler Durdern: The infamous main character of the novel Fight Club, Tyler Durden is a schizophrenic narcoleptic whose self-destructive hallucinations get him into a big heap of trouble. Edward Norton played his character in the movie co-starring Brad Pitt.

Argentinean: With a modernized stylistic revision of classic musical numbers, an artistic directing style, and an all-star cast, Moulin Rogue has easily become one of the most popular musicals of the last thirty years. In the film, there is an outlandish, eccentric Bohemian artist with Narcolepsy known only as, “the Argentinean Narcoleptic”. The hero’s involvement in the plot of the play becomes solidified when the unreliable narcoleptic foreigner cannot stay awake long enough to complete the show.

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