Ask me any question and I will do my best to answer.
Understand that I am not a doctor, I am not here to solve your medical problems.
Frankly, I am not that smart and not qualified. I can’t stress this enough:
- IF YOU NEED MEDICAL HELP, SEEK PROFESSIONAL HELP.
- If you want information about epilepsy, I recommend the epilepsy foundation (http://my.epilepsy.com/).
But if you want to ask an epileptic a question, and want an open, honest answer: Ask Away!
Right down there where it says “Leave a Reply” is where you do the asking and I’ll do the answering. Easy? Totally!
Is it true that you can swallow your tongue?
no.
http://www.epilepsyfoundation.org/livingwithepilepsy/firstresponders/basictraininginformation/faq.cfm
Good morning!
My name is Sarah Buduson and I am an investigative reporter at NewsChannel5 in Cleveland, Ohio. I am exploring a story about inappropriate responses to seizures. It appears you are well-versed on the subject. I would very much like to speak with you about this topic. Is there a number where I can reach you? I can be reached at 216-214-3188. I look forward to hearing what you have to say on this subject.
Thanks,
Sarah
Ms. Buduson;
I sent you an email (you can appreciate my reluctance to put my phone number on my website) but did not receive a response. I assume that it was too late for your article. I apologize. I hope it turned out well.
Mark
How do I prevent people from blaming me for their problems with my epilepsy? It just happened to me again when a clerk for a judge wouldn’t tolerate the 3 second delay from usage of federally funded “CapTel” telephone services in a reasonable manner following my epileptic seizures. My financial interests involve somewhere between $42 and $40,000, as the hospital just again trashed the “you only bill once” Medicare rule with a $15,000 bill through a collection agency days later, despite Medicare ruling in my favor that my interests
could only be billed in total of no more than the deductible of $1,216. Legal services laugh as if my epilepsy is a joke that limits their services involving medical billing.
Tadzio
Ah, Tadzio. I was wondering what had happened to you.
I have read this several times and I think you have two separate issues.
In my opinion your second issue is far more important:
I am not a lawyer and I think that’s what you need for the second question – and I think you know that (“Legal services laugh as if my epilepsy is a joke”). You might want to contact the epilepsy foundation for that as they could help provide legal and ADA assistance. I believe that if Medicare said that you are only responsible for $1,216 then that is all you have to pay. The hospital may WANT more money, but they are not going to get it from you. It is my understanding that Medicare is pretty strict about that – but again, you might need legal help. Call the epilepsy foundation. And keep calling until you get someone. They are good people.
As for the first part of your question (“a clerk for a judge wouldn’t tolerate the three-second delay”) I really don’t understand what is going on here. You were using the court’s CapTel phone and a clerk thought you were taking too long with your call because of a seizure? That’s just weird. Some people are just jerks. I would blow that one off and chalk it up to “inconsiderate asshole.” It happens, but there isn’t really a lot you can do.
Mark
Hi Mark, I got my CapTel telephone from Amazon-dot-com for less than $100. After a seizure, my ability to use a typewriter is the first to return, then the ability to read, then the ability to cognitively hear, and lastly, the ability to speak. On my now dead laptop, I used to use my own improvised crude stenography program to read what I couldn’t cognitively hear, and a speech synthesizer to speak for me from my typing. I now use the CapTel and iPad apps for hearing & speech (much slower and bigger gaps). When time isn’t important, I just wait for my abilities to more fully return, hopefully before the next epileptic event.
Sometimes, it is very difficult to chalk it up. Last April, another “inconsiderate asshole”, this one with Medicare’s QIO contractor, kept hanging up on me during my CapTel attempts to stop a hospital from kicking my near-death mother out. They kicked her out with Medicare’s consent, and she died within 12 hours after being kicked out (Medicare called these actions initiating a hospice care program, even prohibiting medical 911 calls).
Money wise, I’m categorically needy and judgment proof, so the vultures won’t get any good scraps from me in terms of assets. But, maybe they think I might be victorious over one of their own, and they find possible cannibalism of losing wake members appetizing.
Tadzio
Tadzio;
I like the way you write. Your stories are always full of horrific details but you seem to keep your sense of humor about it all. It took me a long time to get there.
I understand the CapTel system you use, now. To be honest, I had to google it but found some interesting reading there. Amazing what technology has to offer these days. I “come back” pretty quickly after a seizure – though I can be pretty confused for a while so technology would not help me in those instances. After a grand mal I can not be trusted for ten to fifteen minutes: I think people are different people, I often believe myself to be in other places, I see things that are not there.
Watch out for those vultures. They certainly can be a ravenous lot.
And sorry about your mom. That is really horrible.
Mark
I just finished reading your book (which was excellent btw and i think you should write a full length novel). I have a general question i cannot find any answers to and a few questions specific to you.(forgive me, i am very nosy and curious). What does an epileptic with Conic Tonic (grand ma)l seizures do when they have a warning aura in public, alone, and at school? For you specifically, what do your peti mals look like? Are they a complex partial or simple partial that effects you motor functions? I wasn’t sure which because you said you didn’t remember them and didn’t always distinguish between the two in your book. Like when you fell in the shower and hit your head. Did you have a C/T or partial? Now that i think about it you may not know since you were unconscious or don’t remember. Can you which type you have by how you feel afterward? Are the recovery times different? If you even read this, Thanks!
Wow. That is quite a question.
First of all, i do not feel qualified to tell you what YOU should do when you feel a seizure coming on. We all do different things. For myself if have time to do anything, i don’t seem to have time to do much of anything other than look for a place to have a seizure that won’t hurt. I look for carpet or maybe someplace that isn’t in the middle of a crowded room. To be honest, i don’t even seem to make it all that often. I am not pleased to tell you that i have had more than a few very public seizures.
Most of them seem to effect my motor functions in one way or another. I can’t really tell you what happens when i am “out” but i certainly end up on the floor, i lose control of my bodily functions here and there, and i have been told that i jerk around sometimes – though that seems to be a rarity these days. My wife says that i mostly just lay there now.
I know that i didn’t distinguish between what kind of seizures i was having in the book. That is because i have no idea what kind of seizures i was having for a long time. I was mostly alone, living out of my car and in hotel rooms and i genuinely have little idea what was going on at that time. There was a lot of waking up in strange places thinking, “wow – that was weird.” I can’t tell you what kind of seizures i was having. Except for a few rare instances where people saw me, a large part of those seizures were just me. I don’t think i would have done much about them if i had not gotten into those car accidents which were probably scarier than i really express.
I remember the shower fairly well (not the seizure – but waking up). i felt HORRIBLE when i woke up in the shower. To be honest, i thought i had hurt my back. I was in a terrible position, face pressed against the wall, water on…just not good. I crawled into bed and took a nap.
I had no idea i had hit my head until i woke up in bed (naked, tired…the usual “post seizure” thing). My head was stuck to the pillow from dried blood. It was weird.
The funny thing is i was worried about it. I thought that the hotel would throw me out thinking that i was some weird guy who was up to something strange…horrible day, hurt – had to go to the hospital – and i was worried about what the hotel would think.
Yes, the recovery times are different. Sometimes i wake up and i am pretty ok within ten or fifteen minutes. Sometimes i feel kind of “out of it” most of the day. I have no idea what the difference is, and i have been having these for almost thirty years. I can usually tell right away what the deal is going to be…
I can tell you that it doesn’t upset me anymore…this is just something i deal with…
my wife tells me i still have some issues about epilepsy – which is fair enough. But i don’t rant and rave about it all the time. I think i am ok with it all. It does help talking to people, i think.
Thanks for taking the time to read the book and sending me a comment. I am trying to redo the book. It was a good first effort, but i really do think i can make it better.
Thanks again,
Mark
I am amazed you even read my questions, let alone answered them.That has really made my day! First, thank you for your open and honest answers to my rather…in-your-face questions. I’m sorry if they made you uncomfortable and I will respect your privacy. I’ll admit I wrote them off the top of my head impulsively because i was excited. So thank you for replying to them. I asked about the specific type because when i looked up peti mal seizures all i could find were absence seizures (which to my knowledge do not cause falls but everybody is unique). It makes sense you may not know if you are unconscious, have no memory or are alone. i’m surprised your doctors could not tell you more. I imagine those wrecks were terrifying, but God works in some very non-subtle ways and i’m glad it happened before you or someone else was seriously hurt. I agree with you about the book, and i want to thank you for sharing your story. It is an excellent and honest look into epilepsy and i will keep an eye out for the next one . Again I thank you for taking time out of your day and replying to some fairly personal questions. I hope I’m not annoying you. Hey I didn’t know the comment box got bigger. God bless you, watch over you, protect you and keep you safe.
I try very hard to answer everything. Feel free to ask me anything you want…i will endeavor to be as open and honest as i can – and as quick as i can…sometimes it takes a couple days – but i think i do a pretty good job…
i know what you mean about finding information about the different kind of seizures…i had a really hard time with that at first as well. it has certainly gotten better (when i started there was no internet) but there is still a real problem getting information for: i have petit mal, i have grand mal, i have absence seizures, etc…if you google – you are really kind of stuck with “epilepsy”…it’s very frustrating…
email me – and i will send you the re-write of the book for free…thank you so much for taking the time to comment…
please tell others to read the book – and feel free to give it away for free…
mark
I tried to send you an email, but it did not work. It could be me (I’ve never been very successful with emails) or something. Where or who should i send it to?