My Fiance has epilepsy. I spend alot of time researching and learning about the condition in an effort to better his life a little. This is a serious post, In “average person”, non-specialist terms Epilepsy is a condition that effects a particular part of the brain (this is different for everyone) the seizure is the result of a misfire in this area of the brain and can present in the form of a partial seizure (or Petit Mal) or a Tonic Clonic seizure (otherwise known as a grand Mal seizure). Usually a person will experience some sort or Aura or warning sign that a seizure is on its way. Jake’s Auras are; muddled up words when he is speaking, he gets really clumsy and sometimes falls and trips over, his essential tremor (familial tremor mainly in his hands) becomes intensified and he generally just feels “off” so to speak, he complains about not feeling 100% and struggles to get over his breath as if he is having an anxiety attack. His anxiety is usually worse leading up to a fit or seizure. Luckily for us, Jake tends to only have his turns in bed, this is since he has been on his AED’s (Anti Epileptic Drugs).
Epilepsy is beginning to really effect the quality of Jakes life, and our life as a family. He is always waiting for the next fit which would be a horrible way to feel all the time. He misses out on some of the taken for granted aspects of life and parent hood for example, He inst allowed to drive. One of the Most liberating things in life is driving in the car, music cranked full blast, singing your heart out (horribly out of tune) to whatever is on. Jakey misses out on this feeling. He isn’t able to bath with our 3 month old bub without supervision, I always have to hover even though I know it makes him feel like an inadequate parent and I hate it. He cant have a beer with his mates (alcohol is a really big trigger for him, this differs for everyone) and being 23 having a beer is a big social occasion. So it is really hard, all of these seemingly insignificant situations to those of us who don’t have to think about it are some of the most missed things in the life of an epileptic.
I would love to focus on the positive, and I certainly don’t point these things out to Jake (even though I know he thinks about it) , I want him to feel normal and appreciate his life because while he does have epilepsy its not like he doesn’t have his health.
so we have come to a point where we are considering if it is better to go ahead and have brain surgery while Jake is still so young so he can enjoy his life stress free. The reason we are considering this option even though he has only had epilepsy for just over a year is because he also has a essential tremor, his epilepsy meds make his tremor so much worse (to the point where he can’t eat or drink properly) and his medications also make him feel anxious, sick and exhausted. Not to mention the type of epilepsy Jake has (left temporal lobe) is one that is very difficult to treat and get under control with medication and it will continually worsen as he ages.
We were just watching tele and one of the NRL greats Wally Lewis came on and was talking about his personal experience with epilepsy. He had the operation in 06 and has never looked back. it is a tremendously scary thing to contemplate and we need more information yet but i think its one we may just be going ahead with…