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katfaerie

Epilepsy and the burdens of not driving.

Here's a link to my newest blog post about my struggles with losing my license due to seizures. I'd appreciate it you could read it and shar it on FB or Twitter if you like it. Thanks in advance!

http://ktslagle.wordpress.com/2013/06/13/driving-miss-katie/

Here's another link to blog post about living with epilepsy.

http://ktslagle.wordpress.com/2013/06/05/the-epileptic-werewolf/

Thanks friends.

Comments

Re: Epilepsy and the burdens of not driving.

Have u looked into surgery? It worked for me (so far) I'm actually driving again its been 411 days sincee surgery. Believe me I understand the feelings of not driving it was a long time without it and people who drive just don' t appreciate that they can. I wish the best for u if u have'nt yet looked ino the possibility of surgery I suggest it.

Re: Epilepsy and the burdens of not driving.

What happens if I already had surgery and are no longer having seizures but your parents are paranoid about you driving? That's what I am in right now. I been seizure-free for nearly a year now and yet my parents still don't think I should drive unless for an emergency. They told me that whether I'm having seizure or not anymore, I am always considered to have epilepsy which is a disability. It's as ridiculous as saying if you are diagnosed with diabetes, athsma then you shouldn't be driving.

Re: Epilepsy and the burdens of not driving.

I am epileptic , I do drive , and it is a burden , I wish I did not need too.

in the back of my mind I still can see a crash which happen several years ago on the Golden Gate bridge in San Francisco , a Man was speeding had a seizure and plowed into the oncoming traffic , killing several peoples .

the day I feel or my MD say you cannot drive anymore I will hang the license and count my saving.

Your Parents and your MD should have a conversation He and only He can writte that letter to the DMV clearing you to drive , doing so will be his responsability and liability assuming you take the medications as directed , never touch alcohol , caffeine , Drugs etc..."you will not miss anything" and get normal night sleep .

Re: Epilepsy and the burdens of not driving.

Driving was a primary reason for surgery. work transportation freedom is imperitive. and It is my understanding that it is only a legal disabilty if you can not do your job. Also if you think in relative terms you spend a fraction of your time driving, so having an accident after long term siezure remission is statistically very small, almost to the point of an accident everyone is subject to.
Also, whenever you are with someone have them be the primary driver, I only drive to work and the grocery store. If we want to go out to eat for example then friend or family member will drive. I never drive when I have an option. My dr. And I are confident, actually he is more confident than I am that I'm safe.

Re: Epilepsy and the burdens of not driving.

I have epilepsy and have had it for 50 years. I had been seizure free for 3 years and was studying for my drivers license when I had a seizure. I also know where your parents are comming from. I too was being protected because my parents wouldn't let me join the team and play football. So i became the manager. I know how to drive and have in emergencies. When I was a teen I wanted to drive and go places. Most of my dates I had a taxi driver on standby so I know where you are comming from. Your parents are doing what they think is best for you. You do ned to understand that athesma and diabeties have little to do with what goes on in a seizure. Depending on the type of seizure you have depends on the length of time you may be a hazard. I have partial seizures and those take split seconds to last but they can go longer than 10 seconds. Focusing after then take additional time. For those split seconds you are driving could cause a wreck. I have been seizure free several times in my life and sergury can not be preformed on me because the damage is in more than 1 lobe.

Understand that you have a disability that people can't see but you have to deal with. I also know that there have been people like you that were free of seizures after sergury that had them later. Talk to your doctor and have him talk to your parents is the best thing I could tell you and deal with decissions htat are made for your protection.

Re: Epilepsy and the burdens of not driving.

I struggled with this for a long time. I was first diagnosed in 1997. I drove for many years. But I have just realized that it's not worth the risk. I could never forgive myself if I hurt anyone. So I don't drive. It's not just what my doctor says, it what I know to be true. I am afraid of brain surgery and am not interested in having any. I might change my mind someday. But right now, I'm just resigned to my life of not driving and having seizures occassionally. But basically, it sucks. We all know that. Be strong Epi friends.

Congratulations to you all for being seizure free for so long! Hazzuh!!

Re: Epilepsy and the burdens of not driving.

THANKS FOR READING! The more we all talk about epilepsy, the better!!!

Re: Epilepsy and the burdens of not driving.

Last month my new neurologist told me my only hope for being able to drive again with complex partial seizure epilepsy would be to have surgery. I had an MRI to see if there might be something to do surgery on. The thought of surgery was terrifying, but the thought of never being able to drive again was worse. Well, "good news"! Like 90 % of patients with epilepsy, the MRI was normal. Not a surgical candidate. Not even a choice about it. There you go.

I read your blog and it made me cry. I miss those days of just going to the store alone, or driving up to a mineral spring for the day, or having tea with a friend. I hate asking people for a ride and so I am very isolated. I have been left stranded at my office late in the evening by taxi drivers who never showed up.

So, no, Katie, you are not alone. I hope that helps a teensy bit.

Re: Epilepsy and the burdens of not driving.

I understand where most of you are comming from. I also know what it is like not driving. But then I have been dealing with my epilepsy for over 50 years which is longer than some of you have been alive. I also know that medications today are targeting certain parts of the brain and are not downers like the ones I was taking when I was a teen and into my 20's.

Understand that advances are being made now that can assist in stopping the seizures. So do as some of us older folks have done and deal with your handicap. I have had friends tell me I shouldn't have been working. I let them know I was able to do everything they were and do it better when it came to the work we were doing.

What can be helpful is doing resraech and Creating a essay or paper on Epilepsy showing the different typs and causes. Some info on medications and deffinately state what to do if someone is in a seizure. Talk to schools or companies and let them read it or maybe even have you read it to their employees.  The essay I wrote in jr high was read to the whole school in an assembly. I had to read it in from of every class my english and scince teacher had. I then gave it to the vice princeable who had it read in assemblies for I know the next 8 years.

Also understand that back in the 60's there were people who put epileptics away in homes.

I can say that I wouldn't be alive today if it weren't for a Mothers prayer. 

Re: Epilepsy and the burdens of not driving.

i started with epilepsy when i was about 12 or 13 , but like any other normal teen i did get a drivers lic. at the legal age at that time it was under control , i would have 1 to 2 a year it was not as a big deal as some others , but when they happened i couldnt drive for an amount of time or it just got to the point i didnt have a doctor or go to the hospital any longer fear of them taking my lic. away about 10 years ago i got to the point where i was so tired of hearing i cant do this or that because of my epilepsy so i applied to truck driving school , went through the school took the test and had a class A cdl for 3 years , that is a scary thought i know , but it felt natural to me , like i was born to drive a truck i was so good at it , due to a family member telling my boss of my medical problem i lost my Lic. i lived in the hills of Kentucky after that and i was having seizures every week 3 to 4 times a week for a time of 2 years , it was so bad i could not even work or do anything with having one , im not sure if it was the high terrain i lived in or the stress of not being in a truck , that caused this , i was put on disability for this reason sure didnt feel like much of anything but a waste of time , and went through a dark depression , at the end of the 2 years i ended up in upstate NY closer to family and since i have been in NY i have had 1 seizure that was 3 years ago , i had to retake my DL test and finally got to drive a car again , i know some would think i am only thinking of myself because i drive , but im one of the lucky ones when it comes to epilepsy i can feel the seizure come on before it happens i have about a 10 15 min window from the time i start feeling ill just say strange , so i have plenty of time to get off the road before someone gets hurt or i hurt myself , anyway 6 months ago i got a letter from the DMV that said im no longer on the medical program because i have been seizure free for such a long time , this has never happen to me before but i was excited about that letter , i only see my doctor once every 6 months now just for refills , and i have been doing great , but this scares me , im able to do a lot more than before , and everyday its in the back of my head when in the next one , and at the same time im wanting back into my 18 wheeler again , after much debate and research i found out in NY i can get a CDL but only for intrastate , meaning i have to stay in NY , and that would be fine but there are 2 problems with it , i could never get hired from a company with this and wouldnt make near enough if i did , so im not , i have had my struggles through life with this and driving , it has been a battle but for now i can say im winning , when will the next seizure happen i dont know , but it will , i do know that , so since lights dont bother me , im a photographer for now , i travel a lot , and it can pay the bills , i have 5 great kids that i love very much , and a wife that supports me in whatever i do ,this is my story and if anyone reads this and wants to be a truck driver dont i had to lie and cheat my way through to get to that point , its not worth the trouble , and good luck to everyone , thanks for reading