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Accepting You're Epilepsy
Tue, 02/08/2005 - 14:08Comments
Re: Accepting You're Epilepsy
Submitted by phylisfjohnson on Thu, 2013-11-07 - 15:04
12 Recipes for Happiness – Even If You Have Epilepsy! | March 20,
“No one is in control of your happiness but you; therefore you have the power to change anything about yourself or your life that you want to change.” — Barbara de Angelis
We all know that epilepsy is no day at the beach. You may feel depression, anxiety, fear, isolation, anger, or a whole host of other things, too may to mention.
But, if you dig deep into yourself, perhaps there’s a few things you can do to relieve those feelings.
Here are some ideas…
1. Laugh a little. Laughter can improve your EEG results!
Scientists traced the brainwave activity of people responding to funny material when hooked up to an EEG and measured their brain activity when they laughed.
In each case, the brain produced a regular electrical pattern. Because, less than a half-second after exposure to something funny, an electrical wave moves through the cerebral cortex.
Human beings love to laugh, and the average adult laughs 17 times a day, leaving your muscles relaxed for up to 45 minutes after.
And laughter is catching!
In addition to the domino effect of joy and amusement, laughter also triggers healthy physical changes in the body.
It relaxes the whole body. A good, hearty laugh relieves physical tension and stress. It dissolves negative emotions. It dispels anger.
After all, how can you be angry if you’re laughing? Or depressed.
2. Focus on the positive.
Too often, our negative experiences color our view of the past. Instead of focusing on all the times you have had seizures, think of all the times you haven’t and you are more likely to find that seizures constitute a small part of your life.
It’s often a matter of putting things into a more realistic perspective. For example, worrying about having a seizure in a certain situation is actually wasted energy, because the seizure may not even occur.
3. Gratitude is the attitude.
I actually make a mental list of things I am grateful for before I go to bed at night. Sometimes I write them down (just to remember when I get the blues and need a boost) and sometimes just thinking about them makes me smile!
Your attitude to epilepsy will influence your emotions and behavior. It’s possible to learn to substitute positive thoughts for negative thoughts. You know, mind over matter.
For example rather than saying to yourself “I am going to have a seizure, I know I am,” try thinking positively. The mind is a very powerful tool. Some people find that positive self-talk can actually prevent seizures.
4. Give to others. The satisfaction of helping others will boost your self-esteem.
Once you develop an inner strength and learn to help yourself, then try to be a mentor to others who suffer from epilepsy.
Go out into the epilepsy community and teach others how to live with their epilepsy from a positive perspective. Using the knowledge you’ve gained, will teach others how to cope with the fears, anxiety, depression and anger that is part of their lives. If we stay strong, it’s a wonderful role model and others with epilepsy will try to stay strong too.
For me it’s running a website and facilitating an Epilepsy Support Group. It’s my way of giving back, because I have been so fortunate and I want to help others.
And guess what, I learn from the other members! Together we are building a community of sharing, confidence and caring.
5. Talk, talk and talk. Educate others about epilepsy.
The first thing is to share your epilepsy and feelings with your family. Not so easy. Since many relatives are in denial, this might be a bit tricky. (My step-father was a surgeon and my step-mother was a psychologist and they never said the “E” word!)
One book that may be helpful is “Epilepsy: Patient and Family Guide” by the famous neurologist (and my idol) Orrin Devinsky.
Here’s an unbiased review: “A great neurologist took the time to write a book for those of us with epilepsy, our friends, and our families. He helps dispel many of the myths that exist about seizure disorders. Never patronizing and extremely informative, I HIGHLY recommend Dr. Devinsky’s book for anyone in need of information about seizure disorders.”
It’s also supremely important “to come out of the closet” and educate everyone you can: parents, of your own and other’s parents, nurses, teachers, employers, colleagues, EMTs, hospital staff, police, firemen, public personnel, prison wardens (I’ve heard some very grim stories), judges and yes, legislators.
6. Stop to smell the roses.
Be mindful of what surrounds you. Mindfulness may be described as the ability to pay deliberate attention to our experiences from moment to moment, to what is going on in our mind, body, simply, and without immediate judgment.
For example, focus on your surroundings. Whether it’s trees and birds, a beautiful building, people watching, a fabulous meal. Take yourself into the moment and leave your negative thoughts behind.
And don’t forget to make time for play!
7. Exercise
Regular physical exercise may have a moderate seizure preventive effect in 30-40 per cent of the patient population, while for about 10 per cent, strenuous exercise may provoke seizures.
Clinical and experimental studies have analyzed the effect of physical exercise on epilepsy. Although there are rare cases of exercise-induced seizures, studies have shown that physical activity can decrease seizure frequency, as well as lead to improved cardiovascular and psychological health in people with epilepsy. It’s a great tool since it makes you feel good mentally and brings positive physical changes in your body. Exercising clears the mind, and sometimes can soothe the soul.
8. Socialize
Hang out with positive people. Having someone in your immediate social circle who is upbeat increases your chances of happiness by 15 per cent. Why? Because happy people have the power to spread their feel-good vibes far and wide. Not only do immediate friends matter, but friends of friends, too. So make plans to have lunch with a friend or go for a walk together. It could put a smile on your face, besides what have you got to lose?
Slowly, reach out. It’s not hard to make friends if you put in the time. Listening, appreciation, caring and love will come back your way.
I look at friendship like a flower. The more seeds you plant, the more blooms will grow.
9. Music
Not surprisingly, music has also been found to have a profoundly positive effect on people with epilepsy. In fact, one research study even found that when patients are treated with music therapy as well as conventional anti-seizure meds, as many as eighty percent of seizures were reduced!
It may be because the brain doesn’t have any single center for processing music. Instead, the areas of the brain that process music are widely scattered. So, when the brain is subjected to music that is highly structured, such as Mozart’s Sonata for Two Piano’s, the brain process is actually aided. In fact, research has suggested that Mozart’s K448 piano concerto can actually reduce the number of seizures.
And amazingly enough, music played at a moderate or moderately fast tempo, without too many abrupt changes in dynamics (loud and soft) can aid in normalizing EEGs. That’s because it helps us to relax and ease tension, equalizing the brain waves. (Look for Concertos, Sonatas and Symphonies.)
Music can also change behavior. The right kind can turn depression into joy, anger to calmness, hate to love, and fear to courage. Beautiful music has an effect on all people and it can soothe and help take away feelings of frustration and anger.
10. Read
You might have trouble focusing, concentrating or even remembering what you just read, but give it a try. Start with cartoons or illustrations that make you laugh. (Don’t make fun of me, but I play “Mad Libs. It’s a hoot. And all you have to supply is one word.)
Then graduate to easy magazines like “People” or “Car and Driver.” Next, try some easy to read “beach books” or sports books.
Someone has said, books are man’s (and women’s) best friends. You can take a temporary leave of absence from reality and bury yourself in one of your favorite books. A lot of wise people have been through what you’re going through and they made it through to the other side to tell about it.
11. Try something new and creative.
There can definitely be a creative side to the electrical mischief that epilepsy produces. Some types of epilepsy can spark inspiration, enhance creativity and bring out the latent artist in you. It can be as diverse as writing…painting…drawing…dramatics…architecture…philosophy…or physics…to name just a few.
Researchers claim that often these surprise talents are associated with temporal lobe epilepsy. In this case, the sides of the brain, where memory and feelings reside, are intermittently seized by those “electrical storms” which produce the creative spark.
Although the seizures may be undetectable to observers, they can prompt hallucinations, religion, fury, fear, joy and an unquenchable desire to create, even after the seizure is over.
So you may not know it, but you may have some surprise artistic talents hidden away. Give it a try. Dabble a little. It’s exciting, energizing, rewarding, all-encompassing, and I must admit, a wonderful escape. Like turning lemons into lemonade!
12. Dream a little.
Believe it or not, some of your aspirations can become reality. My parents told me I would never amount to anything. But even at the age of 14, when I sat on my grandfather’s knee and told him I wanted to be a writer, he took me very seriously. He was the only one who believed in me. But unhappily, he died soon after.
So I started my own business on his birthday. Just a little tribute to his love and support.
Phylis Feiner Johnson
12 Recipes for Happiness – Even If You Have Epilepsy! | March 20,
“No one is in control of your happiness but you; therefore you have the power to change anything about yourself or your life that you want to change.” — Barbara de Angelis
We all know that epilepsy is no day at the beach. You may feel depression, anxiety, fear, isolation, anger, or a whole host of other things, too may to mention.
But, if you dig deep into yourself, perhaps there’s a few things you can do to relieve those feelings.
Here are some ideas…
1. Laugh a little. Laughter can improve your EEG results!
Scientists traced the brainwave activity of people responding to funny material when hooked up to an EEG and measured their brain activity when they laughed.
In each case, the brain produced a regular electrical pattern. Because, less than a half-second after exposure to something funny, an electrical wave moves through the cerebral cortex.
Human beings love to laugh, and the average adult laughs 17 times a day, leaving your muscles relaxed for up to 45 minutes after.
And laughter is catching!
In addition to the domino effect of joy and amusement, laughter also triggers healthy physical changes in the body.
It relaxes the whole body. A good, hearty laugh relieves physical tension and stress. It dissolves negative emotions. It dispels anger.
After all, how can you be angry if you’re laughing? Or depressed.
2. Focus on the positive.
Too often, our negative experiences color our view of the past. Instead of focusing on all the times you have had seizures, think of all the times you haven’t and you are more likely to find that seizures constitute a small part of your life.
It’s often a matter of putting things into a more realistic perspective. For example, worrying about having a seizure in a certain situation is actually wasted energy, because the seizure may not even occur.
3. Gratitude is the attitude.
I actually make a mental list of things I am grateful for before I go to bed at night. Sometimes I write them down (just to remember when I get the blues and need a boost) and sometimes just thinking about them makes me smile!
Your attitude to epilepsy will influence your emotions and behavior. It’s possible to learn to substitute positive thoughts for negative thoughts. You know, mind over matter.
For example rather than saying to yourself “I am going to have a seizure, I know I am,” try thinking positively. The mind is a very powerful tool. Some people find that positive self-talk can actually prevent seizures.
4. Give to others. The satisfaction of helping others will boost your self-esteem.
Once you develop an inner strength and learn to help yourself, then try to be a mentor to others who suffer from epilepsy.
Go out into the epilepsy community and teach others how to live with their epilepsy from a positive perspective. Using the knowledge you’ve gained, will teach others how to cope with the fears, anxiety, depression and anger that is part of their lives. If we stay strong, it’s a wonderful role model and others with epilepsy will try to stay strong too.
For me it’s running a website and facilitating an Epilepsy Support Group. It’s my way of giving back, because I have been so fortunate and I want to help others.
And guess what, I learn from the other members! Together we are building a community of sharing, confidence and caring.
5. Talk, talk and talk. Educate others about epilepsy.
The first thing is to share your epilepsy and feelings with your family. Not so easy. Since many relatives are in denial, this might be a bit tricky. (My step-father was a surgeon and my step-mother was a psychologist and they never said the “E” word!)
One book that may be helpful is “Epilepsy: Patient and Family Guide” by the famous neurologist (and my idol) Orrin Devinsky.
Here’s an unbiased review: “A great neurologist took the time to write a book for those of us with epilepsy, our friends, and our families. He helps dispel many of the myths that exist about seizure disorders. Never patronizing and extremely informative, I HIGHLY recommend Dr. Devinsky’s book for anyone in need of information about seizure disorders.”
It’s also supremely important “to come out of the closet” and educate everyone you can: parents, of your own and other’s parents, nurses, teachers, employers, colleagues, EMTs, hospital staff, police, firemen, public personnel, prison wardens (I’ve heard some very grim stories), judges and yes, legislators.
6. Stop to smell the roses.
Be mindful of what surrounds you. Mindfulness may be described as the ability to pay deliberate attention to our experiences from moment to moment, to what is going on in our mind, body, simply, and without immediate judgment.
For example, focus on your surroundings. Whether it’s trees and birds, a beautiful building, people watching, a fabulous meal. Take yourself into the moment and leave your negative thoughts behind.
And don’t forget to make time for play!
7. Exercise
Regular physical exercise may have a moderate seizure preventive effect in 30-40 per cent of the patient population, while for about 10 per cent, strenuous exercise may provoke seizures.
Clinical and experimental studies have analyzed the effect of physical exercise on epilepsy. Although there are rare cases of exercise-induced seizures, studies have shown that physical activity can decrease seizure frequency, as well as lead to improved cardiovascular and psychological health in people with epilepsy. It’s a great tool since it makes you feel good mentally and brings positive physical changes in your body. Exercising clears the mind, and sometimes can soothe the soul.
8. Socialize
Hang out with positive people. Having someone in your immediate social circle who is upbeat increases your chances of happiness by 15 per cent. Why? Because happy people have the power to spread their feel-good vibes far and wide. Not only do immediate friends matter, but friends of friends, too. So make plans to have lunch with a friend or go for a walk together. It could put a smile on your face, besides what have you got to lose?
Slowly, reach out. It’s not hard to make friends if you put in the time. Listening, appreciation, caring and love will come back your way.
I look at friendship like a flower. The more seeds you plant, the more blooms will grow.
9. Music
Not surprisingly, music has also been found to have a profoundly positive effect on people with epilepsy. In fact, one research study even found that when patients are treated with music therapy as well as conventional anti-seizure meds, as many as eighty percent of seizures were reduced!
It may be because the brain doesn’t have any single center for processing music. Instead, the areas of the brain that process music are widely scattered. So, when the brain is subjected to music that is highly structured, such as Mozart’s Sonata for Two Piano’s, the brain process is actually aided. In fact, research has suggested that Mozart’s K448 piano concerto can actually reduce the number of seizures.
And amazingly enough, music played at a moderate or moderately fast tempo, without too many abrupt changes in dynamics (loud and soft) can aid in normalizing EEGs. That’s because it helps us to relax and ease tension, equalizing the brain waves. (Look for Concertos, Sonatas and Symphonies.)
Music can also change behavior. The right kind can turn depression into joy, anger to calmness, hate to love, and fear to courage. Beautiful music has an effect on all people and it can soothe and help take away feelings of frustration and anger.
10. Read
You might have trouble focusing, concentrating or even remembering what you just read, but give it a try. Start with cartoons or illustrations that make you laugh. (Don’t make fun of me, but I play “Mad Libs. It’s a hoot. And all you have to supply is one word.)
Then graduate to easy magazines like “People” or “Car and Driver.” Next, try some easy to read “beach books” or sports books.
Someone has said, books are man’s (and women’s) best friends. You can take a temporary leave of absence from reality and bury yourself in one of your favorite books. A lot of wise people have been through what you’re going through and they made it through to the other side to tell about it.
11. Try something new and creative.
There can definitely be a creative side to the electrical mischief that epilepsy produces. Some types of epilepsy can spark inspiration, enhance creativity and bring out the latent artist in you. It can be as diverse as writing…painting…drawing…dramatics…architecture…philosophy…or physics…to name just a few.
Researchers claim that often these surprise talents are associated with temporal lobe epilepsy. In this case, the sides of the brain, where memory and feelings reside, are intermittently seized by those “electrical storms” which produce the creative spark.
Although the seizures may be undetectable to observers, they can prompt hallucinations, religion, fury, fear, joy and an unquenchable desire to create, even after the seizure is over.
So you may not know it, but you may have some surprise artistic talents hidden away. Give it a try. Dabble a little. It’s exciting, energizing, rewarding, all-encompassing, and I must admit, a wonderful escape. Like turning lemons into lemonade!
12. Dream a little.
Believe it or not, some of your aspirations can become reality. My parents told me I would never amount to anything. But even at the age of 14, when I sat on my grandfather’s knee and told him I wanted to be a writer, he took me very seriously. He was the only one who believed in me. But unhappily, he died soon after.
So I started my own business on his birthday. Just a little tribute to his love and support.
Phylis Feiner Johnson
Re: Accepting You're Epilepsy
Submitted by ctoffey1 on Wed, 2013-11-06 - 16:16
By the way I was not trying to put what you said and feel aside. Good work and I wish I could go without the meds. I would be having them all the time. I know there was a time when I worked at Kaiser back in the 2000's I had one. I was able and still can tell when one is coming on. They heard it because I always go into a bathroom or something as to not scare people and not have them call the paramedics. ( here you get charged even if you don't call them). They made me go to the E.R. and get checked out. Luckily I was fine. So good work. And yes it is discrimination and I would file.