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research, help with epilepsy?
Sun, 10/31/2010 - 20:22Comments
Re: research, help with epilepsy?
Submitted by yeahright on Fri, 2010-11-05 - 12:11
Just remember your dad is your dad and epilepsy is a condition. It isn't the same as diabetes or cancer but it is in the sense that it is a medical condition. This is a great site. People with epilepsy can be a great source of strength, information and courage to you and your family. People with epilepsy can tell you more about the sensations and emotions surrounding epilespy than the best doctor. We feel it all the time. DO NOT LET PEOPLE TELL YOU OR YOUR FATHER HOW YOU SHOULD FEEL. IT'S THE NUMBER ONE STRESS FOLLOWING THE CONDITION ITSELF. WE HATE IT. IT CAUSES GREAT HARM, DEPRESSION AND ISOLATION.
Learn all you can. Listen to your dad if he wants to talk about. Never be ashamed. It's only faulty electricity.
Just remember your dad is your dad and epilepsy is a condition. It isn't the same as diabetes or cancer but it is in the sense that it is a medical condition. This is a great site. People with epilepsy can be a great source of strength, information and courage to you and your family. People with epilepsy can tell you more about the sensations and emotions surrounding epilespy than the best doctor. We feel it all the time. DO NOT LET PEOPLE TELL YOU OR YOUR FATHER HOW YOU SHOULD FEEL. IT'S THE NUMBER ONE STRESS FOLLOWING THE CONDITION ITSELF. WE HATE IT. IT CAUSES GREAT HARM, DEPRESSION AND ISOLATION.
Learn all you can. Listen to your dad if he wants to talk about. Never be ashamed. It's only faulty electricity.
Re: research, help with epilepsy?
Submitted by phylisfjohnson on Fri, 2010-11-05 - 11:01
If you haven't already, I would suggest educating yourself and your dad to help take the fear factor away. There's a wealth of information in the drop-down orange bars to the left.
Start with the "All About Epilepsy & Seizures" and take the information you need from each section.
Information is power and that, together with your loving support and understanding will take him a long way.
Good luck to both of you. Phylis Feiner Johnson www.epilepsytalk.com
If you haven't already, I would suggest educating yourself and your dad to help take the fear factor away. There's a wealth of information in the drop-down orange bars to the left.
Start with the "All About Epilepsy & Seizures" and take the information you need from each section.
Information is power and that, together with your loving support and understanding will take him a long way.
Good luck to both of you. Phylis Feiner Johnson www.epilepsytalk.com
Re: research, help with epilepsy?
Submitted by conniet on Wed, 2010-11-03 - 11:10
First and foremost, you got to keep loving him no matter what. The medication will make him angry, irritable, lonely, depressed and a whole host of emotions he may not understand. I was diagnosed about 2 years ago and even though I taught patients how to manage their seizures, I was not ready for my own experience. Look up about his type of seizure so you know what to expect when he has one. You don't have to put anything in his mouth to stop him from swallowing his tongue. Make sure you move things out of the way so he is safe and won't hurt himself. Most states have a rule of not driving for 6 months after a seizure; some you have to turn in your license. Check that out. He may be bothered by flickering lights or loud noises. Keep a diary. It may seem like extra work, but it will be helpful to track auras, triggers, moods and seizure activity.
He may be aftraid to be around people because of their reaction to his diagnosis. The first few friends I told actually took a step backwards. It's not contagious! I did want to use some nasty words which surprised and hurt me since I am a born-again Christian. The swearing I've gotten under control, but it still pops out every now and again. Because of the swearing I was afraid to be around my friends. Now I prefer to go out with someone and not alone.
I was bold about it after getting over the shock of my diagnosis. Epilepsy - ugh! I decided if I could not accept it, others would not either. I had it a little harder because I had just been diagnosed with Myasthenia Gravis (a neuromuscular disorder) the year before. I told my hairdresser, friends and family, even my grandson who is 9 years old, what to do in case I have a seizure. I have Complex-Partial type. My eyes will be open during a seizure, but nobody's home. I go to church, shopping, flea markets, to the movies or out for an ice cream cone. I go out with girl friends or my husband. I did lose a few friends in the beginning because of my bizzare behavior.
Give him time. It takes 6-8 months to adjust to the medication. It may seem like hell during that time. It is not easy. Read the med info that comes with it. Suidical thoughts are included in the bottle, but the warning is tiny. He may not feel comfortable talking about his feelings and may want to hide his. That just a guy thing, I think.
Great! Here I am giving you advice on social well being and I've got MG that makes me look like I'm drunk (when excessively tired) and epilepsy that makes look a fool (during a seizure). What was the Lord thinking?
I hope this helps. I didn't want to believe it at first, but you have to make the best of a bad situation. It isn't going to go away. This site helps me a lot. It was a big relief to me to know others were going through what I was.
First and foremost, you got to keep loving him no matter what. The medication will make him angry, irritable, lonely, depressed and a whole host of emotions he may not understand. I was diagnosed about 2 years ago and even though I taught patients how to manage their seizures, I was not ready for my own experience. Look up about his type of seizure so you know what to expect when he has one. You don't have to put anything in his mouth to stop him from swallowing his tongue. Make sure you move things out of the way so he is safe and won't hurt himself. Most states have a rule of not driving for 6 months after a seizure; some you have to turn in your license. Check that out. He may be bothered by flickering lights or loud noises. Keep a diary. It may seem like extra work, but it will be helpful to track auras, triggers, moods and seizure activity.
He may be aftraid to be around people because of their reaction to his diagnosis. The first few friends I told actually took a step backwards. It's not contagious! I did want to use some nasty words which surprised and hurt me since I am a born-again Christian. The swearing I've gotten under control, but it still pops out every now and again. Because of the swearing I was afraid to be around my friends. Now I prefer to go out with someone and not alone.
I was bold about it after getting over the shock of my diagnosis. Epilepsy - ugh! I decided if I could not accept it, others would not either. I had it a little harder because I had just been diagnosed with Myasthenia Gravis (a neuromuscular disorder) the year before. I told my hairdresser, friends and family, even my grandson who is 9 years old, what to do in case I have a seizure. I have Complex-Partial type. My eyes will be open during a seizure, but nobody's home. I go to church, shopping, flea markets, to the movies or out for an ice cream cone. I go out with girl friends or my husband. I did lose a few friends in the beginning because of my bizzare behavior.
Give him time. It takes 6-8 months to adjust to the medication. It may seem like hell during that time. It is not easy. Read the med info that comes with it. Suidical thoughts are included in the bottle, but the warning is tiny. He may not feel comfortable talking about his feelings and may want to hide his. That just a guy thing, I think.
Great! Here I am giving you advice on social well being and I've got MG that makes me look like I'm drunk (when excessively tired) and epilepsy that makes look a fool (during a seizure). What was the Lord thinking?
I hope this helps. I didn't want to believe it at first, but you have to make the best of a bad situation. It isn't going to go away. This site helps me a lot. It was a big relief to me to know others were going through what I was.