Hello everyone. I wanted to thank friends and readers for their concern and for staying "tuned in" for blog updates. That said, I did have another seizure a few weeks after the previous blog posting and fell into a funk. My debate over whether or not to raise my medicine has come to an end. It has to be done for a short while for my protection and the sheer sanity of my wife. This seizure occurred while my wife was driving. Somehow, while I was seizing, she pulled off the highway. She thought the car door was locked but it wasn't (or I was able to unlock it). Apparently, I unbuckled my seat belt, opened the door and walked right towards oncoming highway traffic. I don't remember the incident. My wife says by the grace of God, just as I approached the highway, she screamed at me to get back into the car and for whatever reason, (or by grace), I heard, retreated and sat back in the car. The look of fear and despair in her eyes that day was enough for me to know I had to raise the medicine for a short while. Although I am not happy to raise the medicine, I made the decision as recommended by the neurologist.
For the last couple of months I have slept half the day away and sat around quite numb. As an 18 year old, I was able to "sleep it off" for a couple of days and get back to work. Now that I am close to 40, the body needs to chill out and kinda re-group. Eventually though my body does adjust and I get motivated again and try to get back to work. Admittedly, I do have a few more challenges with this than most - working that is.
I have yet to tell my readers that after my brain surgeries, there were side effects doctors did not anticipate for me. After all the neuro-psychological testing and brain mapping, no one ever suspected that I would no longer be able to read. Yes, I simply COULD NOT read - words made absolutely no sense. I could speak and understand language, but could not read it. I went from superior intellect to re-learning my ABC's. I also lost my ability to play piano for awhile. I mention this because it has recently been explained because of my musical and artistic abilities, they (art and piano) may have played a large role in helping to rehabilitate reading.
It has taken me years and I can read and write slowly. My speech has not been affected. Every now and again I struggle to find the correct vocabulary word or name, but other than that - people who don't know me do not suspect these brief lapses in my judgement or thinking. I know there are days when I don't want to pick up a book and practice reading. I used to be able to read a Stephen King novel in a day or read Sigmund Freud and do complex mathematical equations without trying.
So I am opening up a little piece of my trials and triumphs to you. I understand how difficult it is to find strength when you have little hope. I know how difficult it is to give yourself purpose when you don't always know what the purpose may or may not be. It has taken me a few months to write and disclose this to you. Call it pride or maybe a bit of self doubt, but this is me - trying to pick up the pieces little by little and find my way each day.
My wife tries to tell me not to focus on what I cannot do, but what I can do or aspire to do. Some days it is so very hard to actually hear what she is saying to me. I hope someone out there hears my words and understands that you can make a difference. Take each day one by one, give yourself time and pick yourself up and try again....
Sunday, October 2, 2011
Sunday, May 29, 2011
I apologize to all for not having a blog posted sooner. I would love to say my blog this month is meant to educate people or to bond with others around the world. Knowing I am not alone, this time I need to vent. Unfortunately, recently, I had my first tonic clonic seizure in about two years.
I have talked about the types of seizures one can have and also gave input on some epilepsy facts. I have previously mentioned my dog and all that kind of stuff. I have had the chance to talk to others with epilepsy and some without over many years and although there is so much to discuss, one topic seems to resurface all the time...medicine.
Many people with epilepsy will tell you the seizure itself is not that bad. Personally, I don't remember a thing. My body gets sore and I sleep it off and move on. It does get a little more taxing as I get older, but just the same I deal with it. Then after a seizure, typically, your doctor may adjust the current medicine level you are taking and the hard part begins. Medicine has changed my life more than anyone could ever imagine and I know I am not the only one who shares this burden.
There are many medicinal side effects which people may experience. They come to you physically, emotionally and everything in between. A couple of years after college, I was hanging out at a bar (where I grew up). I couldn't drink them with the medicine, but I enjoyed hanging out with friends and playing pool. All of a sudden a group of high school friends stormed in around me. I had a seizure just a few weeks before and my doctor had increased my dosage of medicine. I was really not all "there". I was vomiting and began to lose a lot of weight and was having uncontrolled emotional outbursts all day - of course, this had to happen in a public place and worse a bar for that matter! I remember trying to just run and get out of there as soon as possible, but it was impossible to avoid these friends of mine.
No one knew about my seizure. No one knew about the medicine I was taking. Nothing. It was my secret. People began to assume I was on drugs and I had overheard someone talking about me in the bar. I couldn't handle it and instead of telling these people about me and epilepsy, I chose to run out of the bar instead.
So, here is the debate going through my head for the last few weeks. Do I need more medicine? My doctor wants me to raise it one more pill a day, bit I fear the side effects of my demeanor. However, look at what my wife has to go through. She has had to watch multiple seizures for years and that is not easy. The fear instilled in her for my safety is unimaginable. She tries to explain it, but I don't know what she sees or how I react during of after the seizure. I just know how she relays the story to me - some of which I know she holds back to spare me details. The medicine had never worked through the years. I was resistant to medicine treatment despite numerous attempts of different medicines and combinations thereof. So I resist now increasing my dosage in fear that my body and mind must get used to the increase, thus making it more difficult for me in the future - again.
So here is my question and I am sure others have had this same scenario and it's not just related to epilepsy...it could be for anyone treating some type of disease or depression with medicine. Should my wife have to deal with the emotional side effects of medicine or should she have to deal with the seizures and effects thereafter? Is it better for more to take the increase dosage of medicine with hope it may prevent more seizures? Or possibly, since it has been almost two years without a tonic clonic seizure do I stay on the path which I have been on and hope it was just a "break through" seizure due to stress and maybe just that it "was time" to have another one. I have this same debate in my head. Day after day and more so lately for obvious reasons.
Thanks for listening and anyone with advice and feedback, please feel free to write...
I have talked about the types of seizures one can have and also gave input on some epilepsy facts. I have previously mentioned my dog and all that kind of stuff. I have had the chance to talk to others with epilepsy and some without over many years and although there is so much to discuss, one topic seems to resurface all the time...medicine.
Many people with epilepsy will tell you the seizure itself is not that bad. Personally, I don't remember a thing. My body gets sore and I sleep it off and move on. It does get a little more taxing as I get older, but just the same I deal with it. Then after a seizure, typically, your doctor may adjust the current medicine level you are taking and the hard part begins. Medicine has changed my life more than anyone could ever imagine and I know I am not the only one who shares this burden.
There are many medicinal side effects which people may experience. They come to you physically, emotionally and everything in between. A couple of years after college, I was hanging out at a bar (where I grew up). I couldn't drink them with the medicine, but I enjoyed hanging out with friends and playing pool. All of a sudden a group of high school friends stormed in around me. I had a seizure just a few weeks before and my doctor had increased my dosage of medicine. I was really not all "there". I was vomiting and began to lose a lot of weight and was having uncontrolled emotional outbursts all day - of course, this had to happen in a public place and worse a bar for that matter! I remember trying to just run and get out of there as soon as possible, but it was impossible to avoid these friends of mine.
No one knew about my seizure. No one knew about the medicine I was taking. Nothing. It was my secret. People began to assume I was on drugs and I had overheard someone talking about me in the bar. I couldn't handle it and instead of telling these people about me and epilepsy, I chose to run out of the bar instead.
So, here is the debate going through my head for the last few weeks. Do I need more medicine? My doctor wants me to raise it one more pill a day, bit I fear the side effects of my demeanor. However, look at what my wife has to go through. She has had to watch multiple seizures for years and that is not easy. The fear instilled in her for my safety is unimaginable. She tries to explain it, but I don't know what she sees or how I react during of after the seizure. I just know how she relays the story to me - some of which I know she holds back to spare me details. The medicine had never worked through the years. I was resistant to medicine treatment despite numerous attempts of different medicines and combinations thereof. So I resist now increasing my dosage in fear that my body and mind must get used to the increase, thus making it more difficult for me in the future - again.
So here is my question and I am sure others have had this same scenario and it's not just related to epilepsy...it could be for anyone treating some type of disease or depression with medicine. Should my wife have to deal with the emotional side effects of medicine or should she have to deal with the seizures and effects thereafter? Is it better for more to take the increase dosage of medicine with hope it may prevent more seizures? Or possibly, since it has been almost two years without a tonic clonic seizure do I stay on the path which I have been on and hope it was just a "break through" seizure due to stress and maybe just that it "was time" to have another one. I have this same debate in my head. Day after day and more so lately for obvious reasons.
Thanks for listening and anyone with advice and feedback, please feel free to write...
Wednesday, April 6, 2011
What you see on TV..
Since I have been diagnosed with Epilepsy the overall "awareness" has not been great. In recent years and over the past few months I have seen commercials reaching out to people with Epilepsy. Unfortunately, the broad delivery through television commercials is not always a favorable message or even a clear one. Watching one I was left wondering what the advertiser was trying to convey.
This commercial comes on and first I see a neurologist, sitting in his chair similarly to that of a therapist and in the next frame you see a a sad, confined man just staring out of his window as he watched a parade go by. Insinuating if this person went to the neurologist he would be able to participate in the parade or be a spectator. Unfortunately, I believe that analogy falls short of the "real life" story and was rather disturbing.
It was the opposite for me. I had began to have seizures at 18. I actually was quite a happy and healthy individual besides those episodes every now and again. I was in college at the time and they did interrupt my life and did see a neurologist(s) - seven over time in fact. Here's the thing, once you see the neurologist and are placed on very strong medicines which may or may not prevent seizures, you may be that man in the window watching the parade go by. Why? Because the medicines have for me and others I have spoken to, altered your mind and your body. This topic of medicine is for an entirely different blog. I will tell you, it took me until I found my 7th neurologist to LISTEN to how I felt on different medicines and finally found a combination and now ultimately ONE prescription to live with!
So back to the commercials. The next few all concentrated on the medicinal side effects should you take or have taken "X" in the past. Well, isn't that comforting? More and more of these drugs are popping up that they may cause serious harm to you if you or someone you know has taken them. Class action law suits are being implemented. Especially for women who may bare a child and this child may have severe birth defects due to the usage of these medicines. Oddly enough, some of these Epilepsy medicines are also being cross marketed for their "side effects". They are given to patients who may suffer from depression, obesity, etc.
People need be aware with Epilepsy the grand scope of getting a healthier life. Talk with your neurologist and discuss the good and bad of what you put into your body. Have the doctor explain which medicines are more current or maybe more safe. Raise the discussion of these recently public class action lawsuits. If you would like to be a mother or father someday - ask if there is potential risk with this prescription given to you. Make yourself your first line of defense. If you are unable, reach out to family or a patient advocate somewhere. If your doctor does not know and doesn't want to have that conversation about their ongoing therapy for you, you may not have the right "medicine" sitting in front you!
This commercial comes on and first I see a neurologist, sitting in his chair similarly to that of a therapist and in the next frame you see a a sad, confined man just staring out of his window as he watched a parade go by. Insinuating if this person went to the neurologist he would be able to participate in the parade or be a spectator. Unfortunately, I believe that analogy falls short of the "real life" story and was rather disturbing.
It was the opposite for me. I had began to have seizures at 18. I actually was quite a happy and healthy individual besides those episodes every now and again. I was in college at the time and they did interrupt my life and did see a neurologist(s) - seven over time in fact. Here's the thing, once you see the neurologist and are placed on very strong medicines which may or may not prevent seizures, you may be that man in the window watching the parade go by. Why? Because the medicines have for me and others I have spoken to, altered your mind and your body. This topic of medicine is for an entirely different blog. I will tell you, it took me until I found my 7th neurologist to LISTEN to how I felt on different medicines and finally found a combination and now ultimately ONE prescription to live with!
So back to the commercials. The next few all concentrated on the medicinal side effects should you take or have taken "X" in the past. Well, isn't that comforting? More and more of these drugs are popping up that they may cause serious harm to you if you or someone you know has taken them. Class action law suits are being implemented. Especially for women who may bare a child and this child may have severe birth defects due to the usage of these medicines. Oddly enough, some of these Epilepsy medicines are also being cross marketed for their "side effects". They are given to patients who may suffer from depression, obesity, etc.
People need be aware with Epilepsy the grand scope of getting a healthier life. Talk with your neurologist and discuss the good and bad of what you put into your body. Have the doctor explain which medicines are more current or maybe more safe. Raise the discussion of these recently public class action lawsuits. If you would like to be a mother or father someday - ask if there is potential risk with this prescription given to you. Make yourself your first line of defense. If you are unable, reach out to family or a patient advocate somewhere. If your doctor does not know and doesn't want to have that conversation about their ongoing therapy for you, you may not have the right "medicine" sitting in front you!
Monday, February 21, 2011
Elementary
It's been awhile since my last posting, but I am trying to space my blogs so I don't bore you! Just a week or so ago, I was thinking about what to share on my blog. I didn't have to look far when the topic of conversation came up with a neighbor. Our neighbor, an elementary school teacher, shared that she has seen a number of seizures occur with her students at school. Ironically, it was not disclosed to her or colleagues that these specific students had epilepsy. When these students actually seized -- regardless if it was a grand mal also known as "tonic clonic" seizure, partial seizures or petit mal -- the staff themselves where unaware of what to do to help.
Most people are very much aware of what a tonic clonic seizure is. Whether it is a child or adult the care is the same regardless of age. With a "tonic clonic" seizure a person will lose consciousness, fall to the ground and shake violently. It is most important you keep the individual safe by placing soft material under the head, moving sharp objects, not placing anything in their mouth, help lay them on their side and let them be. Call 911 and seek medical attention immediately.
A petit mal is sometimes slightly more complicated. The seizure in itself is usually unnoticeable. A person could just seem like they are daydreaming. Staring episodes are common and it may seem like a lack of interest during conversation or activity. A person may not know what had just occurred and will just "come back" to reality quickly. Sometimes when a person comes out of a seizure they behavior can be bizarre. When I would awake after a seizure when I was in college, I would walk around aimlessly picking up random items and speak words like "I need these and these". My behavior was similar to that of a baby trying to show these treasures to their Mom. It was as if my brain was rebooting itself. Traveling through my life quickly beginning as a baby to where I was at that very moment in time. After every seizure I would grow up again and again for varying amounts of time five minutes to an hour and trying to find my way to my parents house. My only advice is to protect this person gently the way you would your own child. Don't become combative yet try to help restrain them. We can be extremely resourceful in finding ways to steps, out doors, or into windows as depth perception and seeing can be misconstrued. Try to contain them comfortably in one room and wait until they "come to" again.
My friends thought my gaze and weird staring was just me "acting crazy" and or being funny and they didn't know how to react. At the time I didn't know what I was experiencing, nor did my family, so it would have been hard to alert people. I wish I had some knowledge back then. If teachers, friends, and family would have the conversation of warning signs or awareness, maybe it wouldn't be so strange, scary or weird. Unfortunately most have the conversation too late. Regardless of knowledge many people are too inhibited to discuss the subject at all. It may be due to embarrassment, insult, or anything in between for any party. This actually is an important subject which is a topic of it's own and I plan to discuss this on my next blog.
I hope in some way this information could help others to be more aware. The behavior of people after a seizure varies. Your actions may need to vary also. Just know your friend or stranger will appreciate your help!
Most people are very much aware of what a tonic clonic seizure is. Whether it is a child or adult the care is the same regardless of age. With a "tonic clonic" seizure a person will lose consciousness, fall to the ground and shake violently. It is most important you keep the individual safe by placing soft material under the head, moving sharp objects, not placing anything in their mouth, help lay them on their side and let them be. Call 911 and seek medical attention immediately.
A petit mal is sometimes slightly more complicated. The seizure in itself is usually unnoticeable. A person could just seem like they are daydreaming. Staring episodes are common and it may seem like a lack of interest during conversation or activity. A person may not know what had just occurred and will just "come back" to reality quickly. Sometimes when a person comes out of a seizure they behavior can be bizarre. When I would awake after a seizure when I was in college, I would walk around aimlessly picking up random items and speak words like "I need these and these". My behavior was similar to that of a baby trying to show these treasures to their Mom. It was as if my brain was rebooting itself. Traveling through my life quickly beginning as a baby to where I was at that very moment in time. After every seizure I would grow up again and again for varying amounts of time five minutes to an hour and trying to find my way to my parents house. My only advice is to protect this person gently the way you would your own child. Don't become combative yet try to help restrain them. We can be extremely resourceful in finding ways to steps, out doors, or into windows as depth perception and seeing can be misconstrued. Try to contain them comfortably in one room and wait until they "come to" again.
My friends thought my gaze and weird staring was just me "acting crazy" and or being funny and they didn't know how to react. At the time I didn't know what I was experiencing, nor did my family, so it would have been hard to alert people. I wish I had some knowledge back then. If teachers, friends, and family would have the conversation of warning signs or awareness, maybe it wouldn't be so strange, scary or weird. Unfortunately most have the conversation too late. Regardless of knowledge many people are too inhibited to discuss the subject at all. It may be due to embarrassment, insult, or anything in between for any party. This actually is an important subject which is a topic of it's own and I plan to discuss this on my next blog.
I hope in some way this information could help others to be more aware. The behavior of people after a seizure varies. Your actions may need to vary also. Just know your friend or stranger will appreciate your help!
Sunday, January 23, 2011
Perception and Education
So many things in life are about perception and education. Seizures come in many different varieties. Some are unmistakable as your body will have convulsions while others are mild and may or may not even be noticed by others. After watching the newscast about the dog, I wondered if parents would inform their children about seizures and epilepsy. If you were told a person with epilepsy would be attending your class or children's class, how would you discuss the topic with your child or friends? Would you discuss it at all? Do you as a parent or friend know about safety precautions and behavioral changes during or after a seizure occurs? Many people are too embarrassed to ask questions and many people are too embarrassed to answer. Unfortunately, this includes the people with epilepsy.
To me, with over 3 million people who suffer from this disorder, it would not be unconscionable to ask a professional or a person with epilepsy to educate others. Lets not be afraid to open this important discussion. Our society needs to be aware. This knowledge would not only be beneficial, but also think of the gift someone could offer by recognizing symptoms and taking responsible action, keeping all parties safe. Sadly, I had to have a seizure before I knew what one was. Perception and education is a wonderful concept. It just needs to be implemented!
To me, with over 3 million people who suffer from this disorder, it would not be unconscionable to ask a professional or a person with epilepsy to educate others. Lets not be afraid to open this important discussion. Our society needs to be aware. This knowledge would not only be beneficial, but also think of the gift someone could offer by recognizing symptoms and taking responsible action, keeping all parties safe. Sadly, I had to have a seizure before I knew what one was. Perception and education is a wonderful concept. It just needs to be implemented!
Sunday, January 9, 2011
Seizure Dog Controversy
What inspired me to get this blog up and running was a recent story on the news last week. A twelve year old boy in Virginia, who can potentially have up to 20 seizures a day, is not allowed to bring his seizure dog to school with him. The question which looms in my mind is why this child is prevented from doing so. The dog is ADA approved for seizure training and handling. It seems that the fight is over the state guidelines. The state's ruling is questionable because they are citing the child's ability to "handle" the dog. Is it that cut and dry? Are the state's concerns only based on the ability of the dog and its handler? Or is it possible the unspoken concern may be related to the fears of other students and parents in the community who don't understand the need for the dog and its special abilities?
There are only two viable concerns I see for parents: that their child has a severe allergy to the dog; or that the dog may misbehave or cause their child harm. These dogs can react to the seizure with a loud bark, licking of their owner etc. However, if the school educated the teachers and students as to the behavior of the dog - it should not be an issue. These dogs have the ability to sense within minutes when a seizure may occur, alert them, and ultimately to keep their owners safe. In some instances, the dogs wear magnets that may help prevent the child from having a seizure. No human has that ability. I feel for this child and hope he gets the education he deserves along with the acceptance from his community and state.
There is an interesting article in the Fall 2010 issue of the Epilepsy Advocate magazine relating to the studies of this very same issue. Here are the links below:
http://www.silobreaker.com/boy-cant-bring-service-dog-to-school-5_2264264981354643456
http://www.epilepsyadvocate.com/includes/pdf/EA_Magazine_Fall_2010.pdf
Anyone have a seizure dog or know someone that does? If you can think of a reason why you would want to prevent a seizure dog from accompanying a child to school - please let me know. I look forward to your viewpoints and feedback!
There are only two viable concerns I see for parents: that their child has a severe allergy to the dog; or that the dog may misbehave or cause their child harm. These dogs can react to the seizure with a loud bark, licking of their owner etc. However, if the school educated the teachers and students as to the behavior of the dog - it should not be an issue. These dogs have the ability to sense within minutes when a seizure may occur, alert them, and ultimately to keep their owners safe. In some instances, the dogs wear magnets that may help prevent the child from having a seizure. No human has that ability. I feel for this child and hope he gets the education he deserves along with the acceptance from his community and state.
There is an interesting article in the Fall 2010 issue of the Epilepsy Advocate magazine relating to the studies of this very same issue. Here are the links below:
http://www.silobreaker.com/boy-cant-bring-service-dog-to-school-5_2264264981354643456
http://www.epilepsyadvocate.com/includes/pdf/EA_Magazine_Fall_2010.pdf
Anyone have a seizure dog or know someone that does? If you can think of a reason why you would want to prevent a seizure dog from accompanying a child to school - please let me know. I look forward to your viewpoints and feedback!
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