Employment?

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Does anyone out there have any advice about employment? I used to teach Mathematics, which came with the state's health plan. Now I've got Medicade, and if I earn over $x I'll lose that. My wife and I don't earn nearly enough to support ourselves, and it seems if I were to get hired, then "caught" we'd be worse off than we are now. I can't believe that everyone with epilepsy just discontinues working because they might have a seizure that day. What can I do?
 
Many people on this forum do work -- it just all depends on how controlled your seizures are and whether your job is safe for you and others to do. I also am a teacher (administrator of a public school's preschool program) and I do work full time although my seizures are 100% controlled at this time. I have 3 more years to work then will be eligible for my state's full retirement and I have every intention of making it!
If you can't work, perhaps you could look at being a math tutor. Since I'm not on Medicaid, I don't know the rules as to how much money you could make so I'm not sure.
Good luck. I'm sure this is very frustrating for you and I'm glad you came to us for help and encouragement.
 
Thank You

Thank You so much for responding so quickly. I've only been a member of this forum for a couple of hours! How in the world have you gotten 100% control of your seizures? If I were not with my wife or in-law's 99% of the time, I would never know when or if I've had a seizure.

Thanks,

Tom
 
Tom, Mine were infrequent to start with -- I've only had a few simple and complex partial in my lifetime and am currently 54 BUT I did have an abnormal EKG and have some scar tissue on my temporal lobe which caused them. For that reason my neurologist felt that I needed to be on medication to prevent them from getting worse. However, I also made some lifestyle changes which I attribute to advice I received on this forum. I am very careful what I eat and avoid MSG (a known migraine trigger for me) like the plague and am also working on cutting back on gluten and dairy -- eventually even eliminating it if I can. I have also started taking fish oil, magnesium and vitamin D. As a result, my migraines are better and, like I said, my last seizure was before starting medication over a year ago. I did always know when I had mine because they were preceded by an aura and I always stayed awake during them -- I could hear and understand other people perfectly; I just couldn't respond to them.
What are your seizures like?
 
I would never know they occured were it not for my wife. She points out that I do something like fail to respond to her, or just stare off into space while she speaks to me. Once, a few years ago, she noticed something occuring while I was sitting at the computer, and thought quickly to turn on the computer's camera. As she speaks to me, my responses are as though I'm a pouting, tired child (I was about 37). I often handle papers on the table or my wallet, or check my watch as though I were waiting for someone.

Tom
 
Are you on medication for yours? They don't sound all that different from mine. Are you on any medication or have you tried any alternative treatments. I know that some people on this forum have had success with neurofeedback which I intend to try at some point.
 
Yes: Depakote ER, Zonagran, & Keppra. From about 1983-1997 I went on and off Celontin.
 
mine very, I am either non responsive or convulsing, and the oh so nice deeep stare into nothing, while your boss is giving instructions. As a matter of fact I will ask to work from home on Thursday as well. My mom is in town to help me move.
 
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Perhaps there are at home jobs, via the computer that you can find.
If you made more money than medicaid that you are receiving, and did that for say 5-10 yrs, wouldn't you be allowed to return to medicaid again if you needed it? Of course that is assuming that there will still be the $$ in the system.
 
I work from home when I can't get to work because I get an aura, I get instructions in an email and do me drawings... my name is simon and like to do me drawings...
 
Tom,
I have one other thought for you about employment. Many state's are starting charter schools that are home based and done from the computer. Perhaps you could look into working in one of those situations -- you should still be eligible for medical benefits through your job if you did that. However, I guess you'd have to look into and weigh whether you'd be able to get your Medicaid back if that didn't work out.
I just know that math teachers are in big demand you might find a situation that works for you.
 
Actually, I teach special ed. :) I've never had to quit due to my seizures, and I have grand mals.
 
How in the world can you be able to teach anything, with the possibility of a seizure always being there?
 
Thanks. I've forgotten exactly what charter schools are (we learned a little about them while studying Education), but of course I can just look that up on line.

Tom
 
I guess I can still teach because honestly, I decided a loooong time ago that I wasn't going to let E have complete control of me. I read the articles and talked with my doctor and decided that I was going to treat it like any other medical condition. Like asthma or diabetes. People with asthma and diabetes hold jobs and interact with others. Why couldn't I? Like them, I have a medical condition that requires that I take medicine and make some lifestyle changes. That's doable. :) A pain in the butt sometimes, as I have a big sweet tooth and love to stay up late, but I prefer not having seizures to watching a rerun on TV. So I guess in the end, I just chose to live my life. And not let my medical condition dominate my life. Yes, it required that I make some lifestyle changes...but you know what? I enjoy driving to work and interacting with other adults. I tell my students that I have E and what the seizures look like and how to help me every year. Actually, every semester. Have I had seizures in school? Yes. Several. But because I told my kids what they look like and how to help me, they don't freak out. My administrators are great, and understand if I have to leave early in the day due to a seizure. i'm usually back the next day. Because I'm knowledgeable about my seizures and react in a calm manner to questions, so do the people around me. They just figure that that is part of my life. Not something to stress out about and freak out about. You're going to find that other people will follow your lead in figuring out how to react to your epilepsy. If you look stressed out when you tell them, they might react in the same way. Just a quick note, as I have to get back to a class.... :)Feel free to PM me. :)
 
Hi Tom,

I have considered quitting work myself but don't know how my husband and I would make it either. I have very frequent seizures. I don't go a day without having at least 15, of course mine could be like the way you describe or they can lead into tonic-clonic. Mine start off as complex partial and can lead to something more serious.

I do work full time but I tend to lash out at people and do weird things like try to run out the building with mine so it is freaking my co-workers out and I am afraid if it keeps continuing then I am going to be let go. But I am hanging in there till I get let go because I can't afford to go without insurance and I know you have to wait in my state for Medicare to kick in. I think it is a year after disability.

I work for two attorneys but they are not is Social Security law. I have days that I don't know how I have gotten anything done due to the partial seizures. Some days they just keep happening over and over for hours. It is so weird.

Anyway, I do like the tutoring idea. Many kids are horrible in math including myself as a child, and you could be helping kids get an education and make some side money. I think it is just a great idea! I hope your problems are solved soon and welcome to the forum.

tam bam
 
Tom,
I don't know what the situation with charter schools is like in North Carolina but, here in Kansas, we have a lot of online schools springing up to help kids who need an alternative approach to finish school. I would suggest that you check with the North Carolina BOE to find online schools in your area. You could then start contacting the schools directly. If those kind of schools exist in NC like they do in Kansas, I would think you might have some luck. Math teachers are in short supply here.
As far as the tutoring goes, I'd talk to math teachers at your local secondary schools and ask them to refer students to you.
I do agree with Skillefer though. It is up to us to decide how/if we want to be defined by our seizures.
 
Hi! I'm a teacher, too. I teach middle school language arts, and have simple partial seizures. I can understand everything going on, but it's hard to respond as I can't talk right or find the right words, and the right side of my body shakes. I have a seizure plan in place with my administration and discuss it with my kids at the beginning of each school year. I teach the procedure for "What to do if the teacher has a seizure.." just like I teach all of my other procedures. I often compare it to a fire drill or tornado drill; we don't necessarily expect one to happen or know when it might, but we know that we are prepared and what to do should one occur. I've had seizures during class before, and the plan went off without a hitch. The really fun one that I had was during parent teacher conferences....oddly enough, the kids handled it better than the adults did!
 
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Good God! 15 a day! How could you possibly work anywhere? I may have 1 per week, and there only for about a minute- sort of dazed out, tonic- clonic, I guess. I just asked my wife about the numbers, only to find out I'd had one this afternoon. Stress may be a provoking factor. You must have an extremely patient employer.
 
I despair ever working again. While it is good to finally know what is going on after having these problems since 1997. Due to not being able to afford a neruo(they demand$275 cash up front) looks like I wont be recieving further tests or any treatment. :)

Sorry to rant but there it is.
 
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