Let me first start by thanking Mickey McCamish and Aubree Sullivan for allowing me the opportunity to share my experiences as a person with epilepsy in the newsletter and for their tireless work and dedication at the Epilepsy Foundation of Southeast Tennessee. A team effort attitude and the help of others in the metro area aids those families affected by epilepsy in various ways and opens doors to the need for increased education, awareness and funding. In the following paragraphs, I would like to share my own personal history and experiences, some clinical information and give thanks to the few of many I believe made a difference throughout my life. They have allowed me to try my best to become a problem solver rather than a victim. The key word is "TRY" as problems come in all sizes and all we can do is attempt our best to obtain a positive result. Even that is a daily battle for all of us.
As in many diseases and conditions, epilepsy is very much like a fingerprint, in that it is unique. The medical history of each person with epilepsy (types and frequency of seizures, causes, other medical indications affecting the patient) is all different. Each seizure is certainly unique...just ask someone that suffers epilepsy to share their "interesting" stories. In my case, three that come to mind I will call the "shower," "playground," and "restaurant kitchen" seizures. In most instances, I experience a secondary generalized seizure where the initial, or localized complex-partial seizure spreads, or generalizes, affecting both sides of the brain resulting in a tonic-clonic seizure (grand mal). Other times I suffer either/or types of seizure. Impairment of consciousness is the central feature of a complex-partial seizure. There may be no other symptoms or signs during this impairment, or there may be automatisms (unconscious acts) where coordinated, involuntary motor activity occurs. (e.g. verbal tics, chewing, picking at clothes, wandering) Many times my seizures will be nocturnal and vary in activity and differ in level of severity. In the case of the "shower seizure," I had been up late that evening studying some medical reports for work and went to bed around 1a.m. I "arose" from bed around 3a.m. that same night. While suffering a complex-partial seizure, I opened the sliding glass door to the balcony believing I was going to take a shower. The problem is my bedroom was on the second floor and I continued walking...over the rail and 15 feet to the ground between two sprinkler heads, thud! The "entertaining" side is, imagine walking around for help, obviously "deranged," in the middle of the night with nothing but a towel. I thought I was going to take a shower! Police didn't believe me, thinking I was strung out on drugs and I can understand why as I was still suffering the after-effects of the seizure and hard fall. It is a wonder I wasn't paralyzed or wound up "six feet under." So, on the "bright side" only a right shoulder fracture was diagnosed in the emergency room. I never knew I had the sports ability to be an Olympic diver for that performance would definitely have scored a 10 amongst the judges!!
The other story I will call the "playground" incident. My second grade class returned from recess and realized that I wasn't present. Come to find out, I had experienced a complex-partial seizure and wandered all the way back home....almost 2 miles! Incredible!! Considering the mentioned examples and dozens of more incidents, I have to figure "someone" wants me here on earth all in one piece for some divine reason. Thank you God!!
As mentioned before, the clinical specifics are quite different between all those diagnosed with epilepsy. It can begin at any age, but is often diagnosed in those under 20 or over 60 years of age. Common causes in the younger population include infections, trauma or genetics. Strokes and other indications related to older age lead to their onset of epilepsy. For some, after experiencing epilepsy they later become seizure free and this is referred to as spontaneous remission. In my case, I was officially diagnosed at the age of 7, though my history shows the first suggestion of difficulty at the age of 4. I experienced episodes of headache and abdominal pain associated with seizures where I described "monsters crawling out of my mouth." At a young age most seizures were absence (petit mal) in type, where short periods of staring and decreased alertness were noted. My mother was quoted in medical records as stating some of these episodes lasted quite some time where I was relatively unresponsive, but followed simple commands. I had no warning before this type of seizure and was completely alert following the episode suffering no postictal period. The postictal period is basically the after effects of a seizure and can range in time and severity. Studies show children experiencing absence seizures are normally diagnosed between the ages of 4 and 14. The good news is in the high majority of these cases, kids outgrow their seizures and chances are highest for those diagnosed before age 10. Though in my case, I was part of the minority (30%) that continued to suffer seizures and they also grew to become complex-partial and grand mal in type. My good news was I had very few breakthrough seizures and was pretty well controlled throughout my school years, college and 20+ years into a successful career. This is where I would like to thank my parents for raising me like any other kid. I found great satisfaction volunteering for the Epilepsy Foundations in Louisville, Ky. and Ft Lauderdale, Fla. working with parents and children trying to accomplish the same thing my parents provided me. These parents, and mine included, had every opportunity to shelter their children and/or give them reason to use their condition as an excuse. Looking back, I just never gave my epilepsy much thought and in some cases totally forgot such as when I decided to play the contact sports of soccer, football and collegiate rugby.
Thanks Mom and Dad for keeping me out of special education classes at a crucial time and allowing me to excel in local high school and later college curriculum. Thanks to my second grade teacher, Mrs. Jackson, in regards to the same subject. She was years before her time in understanding learning disabilities and truly made a difference at such a young age. The origin of my seizure activity was determined to be the left anterior (front) temporal lobe. It is involved in auditory perception amongst several other functions such as long-term memory and the processing of speech and vision. Though not clinically determined 40+ years ago, my doctors "hit the nail on the head" when I was diagnosed having an auditory handicap at the age of 7. With the help of teachers and learning to educate myself "my way" I overcame it and learning seemed to become easier as I aged. A funny note, though it wasn't funny at the time, was during cram sessions before tests, I might suffer a seizure due to stress and my memory would be wiped clean. Even with these uphill battles I was still able to maintain a 3.0+ average in high school and college as A's, B's and C's all seemed to make their way to my report card depending on the subject and number of seizures. Though, my mother seems to never let me forget the D minus I received in conduct while in 4th grade!!
As stated previously, my seizures were pretty well controlled through drug therapy for the high majority of my life. I took part in high school and collegiate sports, graduated with a B.S. in Business Administration at a major university and went to work with two well-respected companies, which are leaders in their industry, over 20+ years. The latter company was in the medical device arena involving rigid fixation (i.e. plates, screws, hooks, rods, etc.) for trauma and reconstructive surgery. I worked in the maxillofacial (from the neck up) division and was also involved in launching the spine line of products for several years. Big or small, I attended surgeries to provide clinical advice and support during the "bony work" or reduction of fractures. Believe me, after the thousands of trauma and reconstructive cases I have witnessed and been a part of, you learn not to feel sorry for yourself. Well, that statement was being put to the test beginning in 2006 when I fell two stories off the balcony as described before. I tried to convince the ER that I was "sleepwalking" for insurance record purposes, but to no avail. It didn't matter as "the wheels began to fall off" in a short period of time in regards to my health. I found myself in medical centers 7 times all related to epilepsy, and my last visit was 11 days at Jackson Memorial in Miami, Fla. just recently. My health was spiraling out of control and my life was at risk. I must have been a cat in my past life as 4 - 5 lives have definitely been spent. I look at this as a positive and can only do the things that are in my control in attempts to improve and lessen the number and severity of seizures, especially this past year.
By now, you have figured out that poor health circumstances severely affect other facets of ones life. The number, severity and long post-ictal periods following my seizures proved too much. My body demands rest for up to 36 hours and cerebral side-effects last for an additional 2 to 4 days. My speech is slurred, memory is poor and I am basically "slow." Boy! What a change from hardly setting foot in a hospital (except for work), seeing few doctors and considering my epilepsy no different from a common cold. Until recently, I wasn't very familiar with the term "Status Epilepticus" or SE episode. I have suffered 4 - 5 SE episodes in the past 2 years but the last two recent incidents over a short period of time really brought attention to my declining medical situation. Status Epilepticus is a life-threatening condition in which the brain is in a state of persistent seizure. It is basically an extended or prolonged seizure. This is even referred to as early as 1000 BC where the severity of the condition was documented. An author refers to the devil falling on the victim (seizures) in a given day....no more than 7 times, he will be spared.....if the devil falls on him 8 times, he may not be spared. Guess I can feel good about "beating the devil" going far past 8 seizures during both of these past two SE episodes I experienced. The mortality rate of status episodes and chances of brain damage are closely correlated with age. Some studies quote the overall death rate of status episodes as 22% to 28 %. It lessens with young adults (13%) and increases with the elderly (38%). The definition of Status Epilepticus is a condition where seizures break through so frequently that the patient does not fully recover from the previous seizure before suffering another episode. It is also traditionally defined as a single episode of 30 minutes of continuous seizure activity. Since the majority of seizures last 1 - 3 minutes, EMS should be called if a seizure lasts more than five minutes, or if the person has several seizures back to back without recovering fully between them.
In late July '09 I suffered a Status Epilepticus episode lasting from 3:30a.m. to 8:30a.m., having 2 - 3 grand mals per hour or around 12 total seizures in that time frame averaging 4 - 5 minutes each. Some seizures lasted over ten minutes, while others were short in duration and several were concurrent (side by side) episodes with no recovery time between them. Before that particular incident, I had suffered 2 - 3 previous SE episodes since 2008 but never quite this bad. I had always told my loved ones that it was not necessary to call the paramedics, but to just clear the area and let nature run its course followed by perhaps making me feel comfortable after the seizure such as a damp cloth. In retrospect, if a person with epilepy begins suffering an abnormally long seizure (5 minutes with no signs of stopping) or has multiple seizures without recovering between the episodes, medical help is advised. Good thing I actually had my last Status Epilepticus this past June 2010 on a medical campus as my doctors said things were very touch and go for several hours. I would like to thank Dana and my brother, Chris. While living in South Florida, Dana has witnessed several of my more severe seizure incidents including the last I referred to at Jackson Memorial in Miami, Fla. Thanks for your support! Within a few hours that morning, I suffered no fewer than 10 - 15 severe seizures, one lasting more than 20 minutes and many I had not had time to recover before experiencing the next one. As in 80% of SE cases, the huge majority of these seizures were grand mal in type except for the initial complex-partial where I wandered into traffic. In the ER, I was losing all color and turning gray, so the doctors and staff were seriously concerned for my life. Attending surgeons told me days later in my room "You need a change," and to "move to family and loved ones if possible." Basically, they were prescribing me a medical sabbatical to increase the chances of improving my declining health.
So here I find myself in Chattanooga where I grew up in the 60s and 70s. I have family here, friends and continually find myself running into those I haven't seen in several years or even decades. It has been fun catching up and certainly has had a positive effect on my health. Thanks Cessna, Steve and Bev, Tyson and several others for picking up where we left off so many years ago. Thanks Mom, Dad, Chris and the rest of the family for all your love and support. There are so many others that have shown their love and support too, for instance L.D., Pat and Karen. Chattanooga has changed and improved in so many ways that I am only now experiencing it as I have lived in other metro areas for quite some time. After the conversations with doctors that it might be in my best interest to change my circumstances and perhaps geographical locations I heard the song by Bon Jovi, "Who Says You Can't Go Home," and I took it literally. Presently, I am in the beginning of a study for a new drug that hopefully will take control of my seizures with fewer side effects. I was a candidate for an implant in Miami and my current decisions and opportunities are my last attempt to avoid surgery. Thank you Dr. David Rankine, local neurologist, Lynn and staff for your continued support and hopefully seeing me reach the goal of seizure freedom. I am confident that will be a reality and my years of medical experience will be put to use; I just would like it to happen sooner than later. Lastly, I look forward to becoming involved in the Chattanooga area and being of help in any way for the advocacy of epilepsy bringing increased education, awareness and anything positive for the cause.