Relaxing Day on the Agenda

Talk of Seizure Disorder

I am happy to not have to mow any part of my lawn this morning and can spend the weekend relaxing, as much as my middle daughter will let me. I also am not scheduled to work until Thursday which is good and bad all at once. I say this because I not only have have work but also my middle daughter's gymnastics and Toastmasters meeting that evening. I like to stay busy although this busy seems to mean the second I get home from the meeting I must go to bed because of my extreme fear of flaring up my seizure disorder.

Before you get on to me saying that I have epilepsy, not a seizure disorder, I shall disagree with any medical label after being told epilepsy was defined as seizures that could not be controlled by medication. My seizures are fully controlled by medication and rest thus it is not epilepsy in my eyes. When I was under the age of 18 I had Grand Mal seizures that means I not only had tremors but also would throw up. I would often wake up while having a seizure and there were a few times that I would have to go into the emergency room to get extra medication intravenously pumped into me but most of the time they would end on their own within thirty seconds to a minute. The result was that my mom would make an appointment the next day with my pediatric neurologist and my  anti-seizure medication (Dilantin then) would be upped and I would be stable again at least until I grew or gained weight again. My blood levels were constantly monitored through blood tests I protested through until my step-dad offered me a pair of shoe roller skates if I did not cry. Well I did not cry and I got those brand new shoe skates the next day. After that day I took the tests like a pro and even realized that if I stare at the needle going into my arm (always my left because of the lack of full feeling on my right side) I relaxed much easier because I knew when it was going into my skin and vein.

My seizures now are classified as Jacksonian Marsh and basically mean that the tremors on my right side have remained, I am fully aware when a seizure is coming on and sometimes can sit down before the seizure occurs and if I don't I feel gravity pulling me down. In these seizures I am fully conscious and really would love to tell anyone who maybe trying to rescue me that I will be ok just give it a few seconds. The medications I have been on since I was eighteen have been Tegretol and Trileptol (other wise known as Carbamazepine or Oxycarbamazepine respectively) the only difference is the latter is the slow releasing form of Tegretol.

Once when I was about eighteen I had a seizure as I was getting ready for the day, a day I was supposed to go off to camp, which my mom immediately nixed because she got scared. The reason my mom got scared is because I had just gotten out of the shower and was brushing my hair and putting on my make-up when gravity brought me down between the bathtub and toilet (about three to six inches between the two) which is where my mom found me right side tremoring (if that is a word) and all. She initially was not scared and I could hear everything she said and I really would like to have re-assured her but I could not because the actual seizure would not allow me to communicate with her verbally. The seizure continued so long that she did end up calling 9-1-1 and all the forces came out to help (police, firefighters, and EMS) all arrived. Thankfully by then I had come out of the seizure and since I was not dressed my mom placed my towel over my body. I was lucky and was not forced to go to the hospital because once the seizure stopped my mom knew that all that need to happen was I would go to my neurologists that next week.

The only other time I can remember having a seizure like the one above was on April 15th, 1998 after a graduate school seminar that lasted a full day and a half with a homework assignment that needed to be done the night between the two days. It was the Sunday as I was in my bathroom getting ready to go out to breakfast with my husband and 2-year-old son when I felt that gravity pulling me down, this time I think I managed to sit down two seconds or so before the tremors started and rode it out like a trooper that I feel I am. After the seizure ended I finished getting ready and then stepped out of the bathroom and asked my husband if he heard me banging against the door or wall and he said 'No.' He just thought I had dropped something -- well in fact I guess I did if you count myself quickly dropping to the floor so I would not get hurt. The seizure is the last one that I had since then and now take seriously the fact that I need to get my proper sleep at night and most days a nap.

The way I stay seizure free is easy -- I make sure to take my medication as prescribed (Oxycarbamazepine) twice daily and rest when I am tired. I know that my family has a hard time with this at times because I would love to be like those regular always active moms that can go from sunrise to way beyond sunset but I cannot. My seizure disorder and cerebral palsy do not allow me to be that person. I have also had top deal with doctors here and there tell me that I could possible go off that one medication but I will always stop them their because I tried that once and it did not work then thus I shall never try again and have specifically told my family to never let a doctor talk them into taking me off the medication.

The only main drawback to the medication is the fact that extended sun-exposure does cause me to get sick from the heat and sun itself. This means that outdoor public pools are usually not an option unless my husband is able to come with my girls and I just in case I were to get sick at least I have someone to drive us home. Thus I am one that will try and find activities to do early in the morning, like walking in the early morning or near the sunset, or indoors, like bowling rather than risk my health and the safety of my kids. I know my girls have a hard time understanding but I am hoping with age that they will understand and come to appreciate the things I have done for and with them.

Writing is Much Easier...

...than giving a speech. I am a member of River Valley Toastmasters and Toastmasters International and have been a member since April and started going to meetings around the beginning of the year. I finished my third project in the Competent Communicator Handbook and about two projects in my Competent Leader Handbook. Although I have done them I feel much more comfortable sitting here at my computer writing and blogging because I do not have to worry about my nerves and how to get the words out properly so that my audience can understand me.

As I mentioned in my speech last night about Cerebral Palsy, and maybe a time or two here, there are times when it is easier for someone with my disability to write instead of speak because of the fact that a different portion of our brain is working. The truth is that your brain is a complicated organ which does many functions so when part of it dies or gets hurt due to asphyxiation (lack of oxygen) then another part maybe able to take over and each section does something different than another. Here is an illustration of the brain and its functions I found online:

This was found on: Ms. Vest's Class Psychology

I will try and look for other images that better illustrate the different functions of the brain. In the above image though I am able to at least show that speech and writing are in two different parts of the brain and thus yes there is a possibility that a person's brain may allow for speech and not writing or writing without speech depending on where the injury occurred at or before birth. 

I will say that the reverse could be true for another person with cerebral palsy sitting near me if I were actually sitting in a room with several other person's with the cerebral palsy. I do have friends that are in wheelchairs who do have the same disability who have a harder time speaking than I do and often times must have someone even write and take notes for them due to the spasticity in muscles they cannot control. I have also witnessed these same people only use computers to get their message out but some of them I have to say are smarter than me and often get frustrated when the words just don't come out the way their brain would like those same words to get out.

The same can be true with physical paralysis as well but I will leave that for another day where I will discuss why I can walk and others with the same disability cannot. For today I believe this enough  As you may see cerebral palsy is a very complex developmental disability that is not easily diagnosed and sometimes is not diagnosed up until the age of two after milestones in development are not met by the child in question.