I hope after reading this you will realize many other people with epilepsy share the same feelings as you do. I was not the only one struggling to find the miracle drug so one day I could become seizure free. I was not the only one worrying when my next seizure was going to occur. Growing up I always felt that I had to prove I was the same as everyone one else. I should have realized from the beginning that I was no different. There are many people in the world who struggle daily to live a normal life in a society where people can sometimes be very cruel.
I hope these letters will be an inspiration and help you to realize that you are not alone.I hope you enjoy these letters and I hope they will help you as much as they have helped me.
Hello.How’s things going?I am doing fine here in Grove City.Thank you for your uplifting letter and your article.You seem like a kind, loving person yourself.I come from a family of loving people, we learned young in life to take care of ourselves and help each other.My parents not only taught, but showed the way.
I am in the middle of eight brothers and sisters (five brothers and three sisters).I was born in 1953.I am right in the middle.My oldest sister died in 1963, she had a rare disorder that caused her major organs to age rapidly.My brother and I had neumatic fever.I was five at the time.I learned how precious life is and how easily it can be taken away.
We were poor.Although my father had a good job, there were eight kids.We learned to depend on each other and to trust each other.Oh, we had our misunderstandings with each other.My oldest brother is one of my best friends in the world.
Well, so much for my family history.By the way I am the
second oldest of the boys.All of my sisters were older.In
1989, I was walking home from work (about 1 mile), the
temperature outside was thirty.The first day of winter.
I arrived at my trailer, and I took my glove off my left hand.The next thing I know a cop (a good friend) was calling out to me, he was aware of my seizures.My hands were so cold, even the one with the glove on it.I was shivering.
Suddenly a squad came into the lot and over to me.I have never been that cold before.I had fallen from my seizures (That is usual; I fall backwards and to the left a little when I have a seizure).Before I regained my awareness I got up and started walking, unaware of what was happening (also, usual).I walked into the trailer hit my head and passed out.I was lying in the snow and as I said, it was 30 degrees for a half hour or forty-five minutes.
They got me on the stretcher and started putting hot water bottles around me.They took my temperature.I heard one person say “Going into hyperthermia. His is below critical.The next day I woke up in a hospital.The knuckle in my left hand (the one unclosed) was aching badly.Soon after the doctor came into the room with bad news and good news to tell me.Oh no!I thought.He said, “First the bad news: you have first degree frost bite.”I braced myself for the next sentence.“The good news: you get to keep your fingers.”I was so happy and relieved that tears were running down my face.First degree frost bite is the mildest form of a frost bite.
Now, it is still something I have to deal with.Yet I will
exchange it for my fingers any time!I really do not like to tell
these stories and do not want people to feel sorrow or pity for
me.Hey, I have had seizures for going on a quarter of a
century.I take care of myself.I am very independent.For
sure I do not suffer as much as many other people with
epilepsy.I am truly one of the lucky ones.I have had
thousands of seizures over the years and I am here telling you
about some.How many can say they never lost the ability to
take care of themselves?
Keep up the faith and live the good life.
P.S. My dad had a saying about life; nobody gets out of this alive.He is right, we live life as full as we can.One Day at A Time!
I learned from this letter that support from others can be very crucial in overcoming any obstacle from epilepsy that comes our way .Inner strength is something we need to overcome epilepsy.And you can develop inner strength through support and love from the people who mean the most to us in life and that can understand what we’re going through.You need to take in consideration that inner strength does not happen overnight, so be patient and live life “One Day at A Time!”
Hi, I am forty-nine years old.When I first started having seizures, I had no aura, so I did not know when these seizures were about to happen.People were horrified when I had a seizure.They scattered as if they thought it was contagious.They never realized how much hurt and fear inside me was beyond their knowledge!When one of these seizures hit me there was nothing I could do, but go through it.Not many people understand that even today!Sometimes when I am having a seizure I can feel the blood because my head would hit the ground so hard like a 10-pound sledge hammer in full swing!
Stacey, the only way to get better is by God and your medicine in that order.You need to put your faith first.I believe if it were not for God that I would not be writing this letter today.I would be dead!I also believe that you need to think positively in this life.You should always look forward and never look backwards, tomorrow is another day.
I am fine for right now.I had two seizures in the chiropractor’s office and four coming home, which knocked me down each time.Nevertheless, being “mule-headed” I got right back up!Until the last one knocked a hole in my elbow and I had to get a couple of stitches.I had to take a ride in the ambulance, which I really did not want to do.
I have had seizures for twenty-nine years.The medicine that I take is Depakene (Valporic Acid), Neurontin and Dilantin.Neurontin has been the best medicine that I ever took.
I believe this epileptic did not let epilepsy control his life.He used God to help him develop his inner strength and to look at his life in a positive way.In order to develop inner strength.You
need to have a clear mind so you can make productive goals for your life.You need to reach out for help.You cannot win this fight with epilepsy by yourself.
Hi!I am twenty-five years old.I am married and have two children.I have a six-year-old named David Cody and a one and a half-year-old girl named Morgan Elizabeth.
David had been sick for a couple of days with a cold. I remember we had a couple of feet of snow that night in January.Two of my girlfriends were visiting and we were all sitting around talking. My husband was holding David over his shoulder.I just happened to glance over at David and his eyes were rolled up in his head.I screamed to my husband, "there is something wrong with David!"At that point his whole body limbed like a rag doll. I lay him down on the floor to see if he were breathing.I could not see his chest moving, so I started to give him CPR.I knew nothing about the seizures at the time. I remember then picking David up in my arms and his little body just laying there limp.I thought he was dead!
The ambulance got there finally and rushed him to UnionHospital, in Maryland. A little while after we got to the hospital; we found out that he had a Febrile seizure.These are quite common for children his ageI was glad to hear that!During the next two years he had three more Febrile seizures, which was not too bad.
A couple months after he turned three years old, he started having seizures for no reason.The first time it happened, we rushed him to at Dupont Children's Hospital in Delaware. David had already had two at home then while the doctor was checking him out, he had another one so the doctor gave him Tegretol Rectally.They kept David in the hospital for about four days to make sure his seizures were under control. It was a very scary time for us. For the next year he did well and his neurologist saw him every three months. After about a year, he started having them again, so they increased his dosage again to four tsp. a day. This went on until he was on six tsp. a day and he started to get into the toxic range to the point where he was totally zoned out, tired.Helost interest in almost everything and could not function.
Preschool was horrible. Even after being on six tsp. a day he was still having seizures, so his doctor put him on Depakote. The doctor weaned him off the Tegretol.At this point we were very frustrated. We felt like all we could do, was sit back and watch him suffer from the side effects of the medications he was taking.At five years old, my son’s mentality was delayed.At birth they found that David's corpus callosum was thinner then a normal child's.
The corpus callosumis one of the most striking features of the brain.Its bilateralism, or organization into the largely symmetric left and right cerebral hemispheres. Each hemisphere is independently capable of processing and storing information.In humans and other mammals the corpus callosum is the main pathway of interhemispheric communication. The callosum is the largest fiber tract in the human brain, containing more than 200 million nerve fibers (axons).
It’s critical role was demonstrated by Ronald Myers and Roger Sperry in the 1950s, when they showed (in cats) that information reaching one half of the brain was unavailable to the other half when the callosum was absent.
In the 1960s in Sperry's laboratory, Joseph Bogen and Peter Vogel cut the callosum in a group of epileptic human patients in an effort to control their otherwise unmanageable seizures. The psychological follow‑up of the patients by Michael Gazzaniga, Sperry, and Bogen confirmed the earlier animal studies.Studies of the left and right hemispheres in human beings have revealed the psychological uniqueness of the separate hemispheres.
The left hemisphere is normally dominant for language functions. The right one seems to be better equipped for handling spatial and other nonverbal relations. Such observations have led to theories suggesting hemispheric specialization through evolution. For example, investigators such as Gazzaniga and Joseph LeDoux suggest that human hemispheric differences can be accounted for in terms of the evolutionary acquisition of language by one hemisphere. The other hemisphere continues to process information essentially as it did in prehumans. The superior performance of the right hemisphere on certain nonverbal tests would then be attributable to the sacrifice of nonverbal processing efficiency by the left hemisphere because of having acquired language.
Research shows that double consciousness exists in split‑brain patients. Perhaps a fully integrated consciousness does not develop until a child is several years old. Research shows that the fibers of the corpus callosum do not begin to mature until one year after birth, and that the process continues until the age of ten or older. The corpus callosum has also been found to be about 11% larger in left‑handed and ambidextrous than in right‑handed people.
David also had other problems with his reflex, he had six toes on each foot.Three toes on each foot are webbed together and his two middle fingers on his left hand were also webbed together.He had surgery on his fingers in January, to separate them.It was very successful.David's been going to a school that specializes in kids with special needs. He has been going there since he was ten months old.David's fine and gross motor skills are at a four-year old level. His speech is at a three-year-old level.
At that point in my son's life, between the seizures and the medications, I started to look for alternatives to David's problem. I was not quite satisfied with what the doctors had to offer my son.It seemed like it all revolved arounddrugs and that was the extent of it.So, I went to one of my friend’s nutritionist, who firmly believes in the benefit of the Shaklee supplements.
These supplements are diet containing generous amounts of fresh vegetables, fruits, dairy products, and meat which assures an adequate intake of vitamins and minerals, which my son had been lacking all along.So I sat and talked with her about all my concerns for David.She got very excited. She said, "Marybeth, if you really get serious about rebuilding your son's state of health, this means making sure he gets his food supplements every day and change some of the things he eats in his diet.”
Naturally I went home very excited.I started him on supplements right away and got rid of all my household cleaners and replaced them with Shaklee Cleaners, which are all biodegradable and nonchemical.For the first thirty days, my sons’ body went through acleansing, because when you introduce organic foods and all those nutrients and minerals; the body will automatically eliminate toxins and start to heal. After about thirty to thirty-five days, boy, did I start to see drastic changes with David.On of the most vivid things was he had lots of energy, and he was not pale and washed out anymore. His cheeks became rosy, and started to talk more and he was showing interest again in doing everyday things like going to the playground, swimming, and socializing with other kids.There was a major improvement in his health. He was always sick with something from the time he was one to five years old and taking antibiotics at least once a month. They hospitalized him at least twice a year with pneumonia or bronchitis.He was then of course having seizures.He was a very sick child
It has been nine months since he has been on the Shaklee diet and has only been to the doctor for an ear infection once.At David's school his teachers were saying what an improvementDavid is making. They said that he stopped taking naps in class and his attention span was better.His concentration and balance showed major improvement!In as little as two months, my child went from being a very sickly, unhappy, tired and zoned out kid to being a child with energy.He is very healthy, he is alert and he has not had a seizure in over a year.He is on Depakote and we are still weaning him off the Tegretol. It is a very slow process. Let me tell you what weare currently giving David to supplement his diet:
Two tsp. a day of liquid tea (Panathonic Acid Biotin Riboxlauch Niacin vitamins A, D, B, B's, Iron)
two glasses of Soy protein (very important in brain function and energy)
2 Formula I capsule (mixture of antioxidenenls and B's that help boosttheZinc selenium immune system vitamin C)
4 GLA (essential fatty acid)
Six chewable C
2 Bett Tacarotene (builds immune system and fights against cancer)
Fiber Waters chewable‑vitamin E 200 IU (The body's natural broom. it
keeps the toxin out of the body.)
This is what I give him every day.I just poke a hole in the capsules and squeeze them into the liquid tea and he drinks it down.The reason that I chose to give the Shaklee supplements to my son is because I know that they are safe.Shaklee is the only company that does clinical studies and scientific research on their product before they market them.So when I give Shaklee to David I know that he is getting the best out there!
I truly believe that they introduced me to Shaklee for a reason. It was definitely a work of God!I would really hate to think of the shape my son would be in now without the Shaklee products.
I feel like I have a mission here.Think about all the people out there stricken with epilepsy that not only have to deal with the seizures, but have to deal with the side effects of the drugs!
This was a challenge, but I believe that God is in control of everything that happens in peoples lives.In know that my David is in Gods hands and God will take care of him better than anyone else!
God does everything for a reason, we just have to have faith.We just have to have faith that there is a reason behind everything God does.When were going through bad times with David.I could have blamed God, and said, "Why does this have to happen to our child?" Yet through it all I have learned how to be thankful for the little things. It has made me a stronger person and has made my husband and I a lot closer and stronger together.Greatest of all, I feel that now I can be of great benefit to other parents who have children suffering from epilepsy.
I really believethatdietsupplements and gettingrid of chemicalsinthehomeisvitaltopeoplesufferingfrom epilepsy.David has shown amazing results!
I think everything happens for a reason.David’s parents can use this experience to help others.David’s parents used their faith in God to help them through this tough period in their lives.They didn’t give up hope and they used their inner strength to search a for solution to help their son’s seizure disorder.Diet supplements may not help everyone, but in this case it was very helpful in David’s situation.
I am forty-four years old, and my first known seizure was at the age of twenty.At age five years, I had a high fever that caused convulsions.My older brother told me when he saw me have my first seizure that looked like when I was five years old and had convulsions.He was nine years old at the time.
I work at a grocery store.I do not drive and live alone.So I walk about 95% of the timeI do not want to drive.I worry about hurting or even killing somebody else.
On February 3, 1994, I went to my neurologist.I was using a new anti - convulsion medicine called Felbatol.I got a bad side effect from the medication so the doctor put me back on Tegretol.Later he added Neurontin to try to help control the seizures better.
During the change over I had a seizure while walking to work. It was cold and snowing (I fall to the left slightly, thenbackwards with my seizures) I fell and landed in the snow and slid into the street under a car.
When I have seizures, I do not become mentally aware until five to ten minutes afterwards. I never remember any of my seizures.I pulled myself from under the car and kept going to workI heard people yelling for me to stay, they were asking “ Is your head all right? ”Idid not understand because I was still dazed from the seizure. About two or three minutes later a policeman pulls over to the curb and walks over to me. He said, "Are you OK?" I said, “yes”. He said, "Don’t you know where you were, being dragged down the street by a car? I said, "A car?""He said, “You did not know it, did you?"I said, "No sir." I did know my hip area was starting to hurt and I felt I was walking funny. The police officer said, "Well an ambulance is on the way." I said, “I don’t have time, I have to get to work before .I also have to pick up my medicine before the pharmacy closes.”
By the time we were through the squad car arrived. They said, “lie on this, so we can take you to the hospital.”I said, “No thanks,” and went on to work.I lasted about a half hour.Sitting, standing, and laying down; nothing would ease my pain.
While I was trying to work, the gentleman who was driving the car noticed me. He was going to the store. He said, "Excuse me, sir.” I said, "Yes sir.”He said, he was driving the car that took me down the street.My heart ached for him,I was stunned!
I said, "Please forgive me, but I just had one of my seizures.Don’t worry, I think we both should feel lucky that it is just my hip and you did not run me over.“I feel bad when others are involved this way. It does not seem fair. This person was not doing anything wrong. We need to consider others who, by being in the wrong place at the wrong time are feeling, caring people and need help too.
Well, after about half an hour of work, I asked one of my
coworkers to call a squad car.They did and I went to get
medical attention.To this day, I still feel bad for the driver.
My area between my waist and knees are a problem.
Nevertheless, I still walk 95% of the time and work full time.
I take no pain killers.I just go on.
I told you about my high fever, but that is not the source of the
seizures (or not the main source).Sometime between 1953
and 1962 I had a hit on the head above the right eye; so hard
that the retina right ripped and partially detached from the
optic nerve.This may be one of the causes of my epilepsy.
My right frontal lobe is where my seizure’s starts.When the
doctors look in my right eye they said they could do nothing
because the detachment was not fresh enough.I started to
fall on the left side first.I knew this because its my left hip
that’s hurt from the falls 98% or more of the time. It was not
until 1973 my first known seizure occurred.
My neurologist told me that I 'm not a candidate for surgery.It was not worth the risk because my seizures are under good control with medicine.I dropped from hundreds of seizures a year to two or three dozen.So I am close to seizure‑free.I also have auras’. My auras are really scary, the taste in my mouth is terrible and my tummy feels like I have gas in it.I get goose bumps from head to my toes with the exemption of the very top of my head.
I think epilepsy has put quite a few obstacles in this gentleman’s life, but as you can see he has not let having epilepsy get him down.He has focused on the positive aspects of his life and this has given him the strength that he needs to go on with his life.He has accepted that he has epilepsy and he knows epilepsy is a part of his life.This is why he is able to cope with his epilepsy.
The weather has been perfect for me to get out and get busy. The only downside is that I overdo the work or play and finds me with a head that feels like a sparkler on the fourth of July.I noticed three things you said in your last letter that I can relate to:
1. Those without seizures do not understand completely. I use to tell my doctors, "I wish you could live one month with my symptoms Maybe then you be more sympathetic." You’re right! Family and friends listen, but they do not really understand!Only another person with the problem can fully understand what we go through.That is my big problem.People think I should be the "superman” I used to be.I cannot.They do not understand why.I try to keep going, but I am destroying my body.I have fallen so often during the last few years, it is a wonder I can still walk.I used to like to stay on the road, and do weekend trips. I know now, a 50-mile trip will put me in bed for a day or two.I do not like my brain feeling like oatmeal, sparking, or feeling like it’s spinning in six different directions, in addition to all the other symptoms.I do not like feeling bad, so I am avoiding things that hurt me.People do not understand.
2. You mention about what is “Normal." I have had doctors ask me if I feel normal after taking a different medication.I replied, " What is normal?”“What is normal for you surely is not normal for me." Stacey, I thought I was normal for twenty-eight years.You know why you have seizures, and I don’t.I guess the only difference is that you are not in the dark and you knew you had a problem since youth.
3.Mind over matter ...when I was much younger and into the martial arts, I learned a great deal about mind over matter.I could direct pain out of my body by focusing on something else. I used to be able to obtain an 8-hour sleep in five minutes.(Sounds goofy, but it works.)I know all about mind over matter, but when the mind does not function right, you cannot control anything.When my brain shorts out, I am done.No control, I am at the mercy of what happens next.I have tried to control the seizures. I have not been able to, so far, any more than the medication controls it. I will not give up. I still do more than I should, but that is me.I never give up.I do not like having no control of my thoughts. Sometimes I have no thoughts at all.I also experience temporarily andshort termmemory loss.This started five to seven years ago.This is not good either.
I feel like you have a good handle on life. You make the most out of life that you can.I wasted too many years, trying todeny my problem, then being depressed.I’m now trying to figure what the future holds for me.
I am stubborn, I will not give up and I keep Jesus in my heart. It did not matter how tough it was; when my life did a one hundred and eighty degree turn, he was the only one who understood.He was the only one that was there when I needed someone the most.
I believe this epileptic is still struggling with epilepsy, but with the help of religion and by reaching out to other epileptics she has begun to see the brighter side of life.She has opened her heart and her mind and has begun to listen to what other epileptics have to say.She realizes that she is not the only one who feels the way she does.
Your words and sentiments travel through the space and continuum of time to add clarity to purpose and meaning to life. In revealing this physical condition, you also bring out the human struggle to overcome and become---God's own creation. We are vessels of hope, not to be shielded under a bushel for no one to see.