sleep paralysis

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

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

Narcolepsy in Children: What Every Parent Needs to Know

September 11, 2011 By admin 7 Comments

What are the Symptoms of Narcolepsy in Children?

Most of the symptoms that are present in adult Narcolepsy patients are seen in children with Narcolepsy. The big four symptoms, most commonly used to identify narcoleptic patients are the same four symptoms that adults look for.

The BIG FOUR

Daytime Sleepiness: Narcoleptic children are always tired during the day, even if they slept a healthy amount the night before. Children with Narcolepsy fall asleep many times throughout the day and experience a hard time staying awake.

Cataplexy: Like in narcoleptic adults, Cataplexy is a very rare development that accompanies the disorder. It is just as possible for narcoleptic children to develop Cataplexy as it is for older patiyou’rents, but it is much more dangerous in small children. Most young children need constant supervision to ensure their safety. Children with Cataplexy need much more physical attention and cautionary care than other children. Children with Cataplexy are often seen as despondent or depressed. Strong emotional responses like laughter could cause them to suddenly fall into a Cataplexy episode, so they are scared to encounter the emotional response.

Sleep Paralysis: Children with Narcolepsy often experience periods of paralysis when falling asleep and/or waking up. For a short period of time, ranging from a few seconds to a few moments, the child experiencing sleep paralysis has no control over their ability to move their body, speak, or even move their eyes. The child is completely aware the entire time, but unable to function.

Hypnagogic Hallucinations: Hypnagogic Hallucinations in narcoleptic children are often misdiagnosed as simple “bad dreams” or night terrors. If your child is experiencing habitual, vividly overwhelming dreams, you may want to look deeper at the root of the problem.

Other Symptoms of Narcolepsy in Children:

Children with Narcolepsy may also exhibit other physical symptoms of their disorder. In fact, hyperactivity and lack of focus are two of the most commonly identified symptoms of Narcolepsy in children.

Problems Falling Asleep
Sudden Deep Sleep
Excessive Day Sleep
Disrupted Sleeping Patterns
Automatic Behavior
Memory Loss
Lack of Concentration
Falling Grades
Substance Abuse
Low Motivation
Mood Swings
Difficulty Keeping up with Peers

How is Narcolepsy in Children Diagnosed?

Children who may be suffering from Narcolepsy are diagnosed in the same fashion as adults. After a thorough physical examination of the child, a thorough record of personal and family medical history will be taken. If a diagnosis cannot be reached, the child may be referred to a sleep clinic where they will be suggested to participate in a sleep study- most commonly the polysomnogram and the Multiple Sleep Latency Test.

How Can you Treat Children and Narcolepsy?

Medication: Prescription medications are often given to treat the effects of Narcolepsy in children. Antidepressants and hyperactivity medications like Adderall and Ritalin are most common.

Behavior Modification:

Follow an extremely strict sleeping schedule- Wake up and fall asleep at the same times everyday.

Before bed, do relaxing activities with your child; read them a book or give them a bath. Do the same activity before bed every night to instill a sense of routine and composure in your child.

Change, or rearrange medications under the supervision of a medical professional.

Avoid dangerous activities like swimming, coking, driving, or playing unsupervised. Activities that require a certain level of risk involved are only recommended for the times of day when a young child or adolescent feels most alert.

Encourage your child to increase their physical activity during the day. Exercise will help your child’s brain regulate sleeping patterns, as well as keep the immune system healthy and powerful.

Keep your child away from tasks they may find boring or too repetitive. An interested child is an alert child.

Eat healthy meals with your child at a scheduled time. Meals should consist of well balanced, small portions of food and should be eaten more frequently throughout the day.

Napping Schedule: If your child is suffering from Narcolepsy, try your best to help them get an adequate amount of sleep every night; this means including a sleeping schedule that accommodates the suggested amount of sleep for the age group of your child. Deciding whether or not a narcoleptic child is safe to nap during the day can be tricky. Generally, it is recommended that parents let narcoleptic children take one to two short naps during the day, but no more than absolutely needed.

Tips for Caring for Children with Narcolepsy

Narcolepsy is a scary and overwhelming disease for all age groups who struggle with it. Many adult narcoleptics feel a sense of shame and embarrassment surrounding the oddity of their disorder. Imagine how that embarrassment must feel to a young child who just found out that they’re different from everyone else. It’s going to be a long, winding, and sometimes painful road for your child when it comes to managing and accepting their disorder.

As a parent, your job is to be there for children whenever they need it. Be an open book; if your child has questions about their medical condition, tell them the truth. Help your child know that they are still beautiful and normal even though they have a disorder that sets them apart. You are going to be their biggest support system while they struggle to deal with the complications of childhood Narcolepsy.

Help your child follow all of the treatment suggestions given by your doctor. If your child was prescribed medication, make sure that they take it accordingly and responsibly. If your doctor places any dietary or physical restrictions on your child, help them stick to the commitment.

Education and conversation is the key to making a young child with Narcolepsy, or any other uncommon disorder, feel comfortable. If your child, or the child of someone close to you, has recently been diagnosed with an uncommon disorder, make sure that you make the effort to educate the people around you on the subject. Help them understand the symptoms and causes of Narcolepsy in children.

Plan for a future that includes a child with Narcolepsy. Evaluate how this development will affect your home, work, education, and family. Start planning for the necessary changes that must occur to accommodate a child with Narcolepsy early so that you will be well-prepared for situations yet to come.

Let your family, friends, colleagues, and school administrators know about your child’s condition as soon as possible; this way, all the necessary modifications that need to be made to suit your child’s special needs will be in place prior to your arrival. If you fail to point out your child’s unique medical and physical needs, they may gain a false reputation of laziness or unintelligence.

Look for support in the community. Narcolepsy is not a common disorder, but you’d be surprised to see how much support is right around the corner. Look for support groups in town, and in surrounding locations, that are geared towards assisting children with debilitating disorders like Narcolepsy or Cataplexy.

If you have trouble finding a support group locally, ask your doctor or medical care provider. In some cases, your medical professional may not be to knowledgeable about sleep disorders and testing. When they are unable to point you in the right direction, try your local universities and libraries.

When looking for support locally fails, hop on the internet and see what you can find near you.