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Medical Forum / Diseases and Disorders / Epilepsy / June 2006This makes me angry!
Hello I have partial seizures. For the first 28 years, I just ignored them. Thev never caused me or others harm. Then at age 40, when it was medically diagnosed that I have complex partial seizures, i was put on Tegretol. I have responded well to Tegretol. It helps me with my mood also. Even though I was able to live independentl without meds, it stil My seizures feel sort like a "weird feeling' in my head.....that is all.....no involuntary movements, no passing out, etc. Keep in mind that my sizures are so minor that I just ignored them for a long time. I am able to do anything *safely* during a seizure,,,,,,including riding a motorcycle. A local chapter of the EFA was having an organizational meeting at my town recently. Only three people showed up. I thought I could be of great help. When the nurse found out t hat I have cps, she went on about what i cannot do, like drive, etc. I HAVE BEEN DRIVING SAFELY FOR MORE YEARS THAT THIS IGNORANT BROAD HAS BEEN ALIVE !!! I know more about my own body than that this ignorant bitch does. She have never seen me before. In fact, she did even know my name ! Now, remember that I represented 33 % of the total audience. I will NEVER go back to another meeting of the local chapter again . (( assuming t hat this chapter even survives) Pre-judging.......that is where we get the word "prejudice". Thanks for reading > Hello > [quoted text clipped - 28 lines] > > Thanks for reading Welcome to our group, sorry to hear of your distress. But it is good that you are venting. True, she doesn't know you, but she does know that there have been people who have driven and had seizures while driving and someone has gotten injured or killed. That doesn't mean that will happen to you, but could it? I know what you mean by the funny feeling because I have had complex partial seizures, but in my case at times they have generalized and gone into tonic clonic seizures. I don't drive when I don't feel well, like if I have a flu or just feel tired out. I didn't drive when I started my new drug therapy, even though the doctor said I was safe to drive because I haven't had a seizure for over 10 years. The reason I didn't drive was because I felt like I couldn't talk or walk very well because of lack of coordination, so I didn't feel safe to drive. I was slowly going off phenobarbital, so I suspect it was because I had two AED meds online. I have adjusted to my meds, so I started driving again after several weeks. This was my choice. No one told me I couldn't drive, but I am very serious when I say I would never want to harm anyone else. We have had people on this group tell us about their own experience of driving when their seizures were not under control and they sadly have to live with tragedy. I volunteer to design and maintain the website for the Epilepsy Foundation of Idaho. People from this newsgroup and others have helped educate the public by sharing their own experiences. I invite you to listen to a few people who have advise regarding driving when seizures are not under control. Their stories are listed on this site http://www.epilepsyidaho.org/experience.htm. You will see comments from Kathryn of Massachusetts, Laurie from Idaho, and Darryl from New Zealand. There was a day when I decided to look up the Epilepsy Foundation's local office and go to the support group. I was frustrated by a vacation being ruined because of my epilepsy. I went, I vented, they listened and talked. There were only a few people. But it helped and eventually my son and I got more involved when we volunteered to design their website. I rarely have time to attend their support group meetings, but they send out a card explaining what is happening each month - who is speaking. One month they had the new epileptologist and director of the new Idaho Comprehensive Epilepsy Center. So my husband and I went and enjoyed meeting the new doctor in town. I asked a couple questions and he agreed to help me get off phenobarbital. He is now my doctor and we are thrilled to work with him. Tonight there is another meeting of the support group. My husband and I will attend. The guest speaker tonight is the webmaster for the Epilepsy Foundation of Idaho. You guessed it, things have come full circle. Now I am speaking and sharing with the group the resources on the internet. This group, alt.support.epilepsy will be one of the resources I will highlight. Sorry for the l o n g reply. Take care, Julie, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org snip she doesn't know you, but she does know that > there have been people who have driven and had seizures while driving > and someone has gotten injured or killed. That doesn't mean that will > happen to you, but could it? See what I mean ? THAT is why I usually keep my condition to myself. *Everyone* is so quick to doubt my ability to be safe. For almost four years, I drove 1000 miles per WEEK. . I have averaged 12, 000 miles on my personal vechicle for 34 ;years. I had other driving jobs. One job I averaged 1700 miles per month. Never had I had a accident from a seizure. I have had seizures while driving, but they NEVER created any problems. Even while driving a MOTORCYCLE !!! Furthermore, I have not had a chargeable accident FOR ANY REASON for 30 years. My doctor is aware that my Tegretol levels have been below therapeutic levels for aobut 5 years. Why hasnt he increased the dose? Because HE knows that I am doing fine with the *minimum* dose ( 200 mg 3x a day) ) How does he know ? From my feedback. Why is my feedback important to him ? BECAUSE HE BELIEVES ME ! I am sure anyone who has "MD" after his name would be smart enough to tell whether a patient is lying or not. I do not expect anybody to believe anything I said. BUT God knows that I am telling the truth The newly formed local chapter missed out on what I was able to offer. I *was* willing to help out any way I could. Many ppl with seizure disorders suffer fro depression. I used to have that problem. I am over my depression, I could help others overcome it by sharing with them what worked for me. Just having an ear is all it takes in some cases. Even though my seizures are not bad enough to cause any problem, I still like to do anything I can to prevent them from happening. I have read a lot about it, and have tried what I have read, and many ideas have worked for me. I started my research on this topic 20 years ago. I sat listening to that nurse for two hours yet I did not learn anything. Why? cause I already knew it!!! I could have helped other patients, or parents of patients with seizure triggers, side effects of medication, etc. No telling how many people who live in my town are afraid to come because their problem is not bad enough to cause any problem, yet if their boss found out, then that is their career down the drain. So, anybody out there reading this: If your seizure disorder is not bad enough to cause you to be a danger to yourself or to others, then KEEP YOUR SEIZURE DISORDER TO YOURSELF ! Howdy gallantman! You said that you were diagnosed with COMPLEX partial seizures. The seizures you discribe are SIMPLE partials. If you live by yourself there is a definate possibility that you are having more seizures than you think, but just are not aware of them. I am not aware of having a complex partial unless I hurt myself or it is reported to me afterwards by a witness. Dave > snip > [quoted text clipped - 47 lines] > bad enough to cause you to be a danger to yourself or to others, then > KEEP YOUR SEIZURE DISORDER TO YOURSELF ! One more thing... If you drive and ever have an accident for ANY reason... (even if you are stopped at a red light and someone ploughs into your rear end) -- If the authorities find out about your epilepsy you will be in a heap of trouble WITH THE LAW. Dave > Howdy gallantman! > [quoted text clipped - 61 lines] > > bad enough to cause you to be a danger to yourself or to others, then > > KEEP YOUR SEIZURE DISORDER TO YOURSELF ! >Hello > [quoted text clipped - 28 lines] > >Thanks for reading Yep. Being an epileptic sucks. You're subjected to more invasive questioning than an illegal alien. You're always second-guessed (judging by the other replies to this thread). Why can't society treat us like any other handicapped person? But no, they have to sit in judgment. I also must agree about the EFA. A blood-sucking bunch of leeches. All they care about is donation money. When was the last time you heard of the EFA actually doing anything for someone with epilepsy? > Hello > [quoted text clipped - 28 lines] > > Thanks for reading Hi Just reading about it makes me angry too. That rudeness from a supposed professional was inexcusable. Having epilepsy does not rule out being able to drive legally. What rules out driving is having *uncontrolled* epilepsy. If the Tegretol is doing the job for you and you aren't having any seizures, there shouldn't be any obstacle to your driving. That is under the control of your doctor/neurologist who needs to follow various laws depending upon your state or province of residence. The doctor must report your condition to the DMV and certify that you have been seizure free. Failure to report you could cause big trouble for the doctor, so it looks like he sees you as being seizure-free. Here's a website with info on the topic: http://www.epilepsy.com/epilepsy/rights_driving.html I have the same type of seizures as you do and have had them all my life, so that "weird feeling" is very familiar to me. Follow the saying in Howdy Dave's sig which translated from Latin is "don't let the bastards wear you down! > > Hello > > [quoted text clipped - 51 lines] > Follow the saying in Howdy Dave's sig which translated from Latin is "don't let > the bastards wear you down! Howdy partials! "Controlled" means seizure free. In my experience, that means ANY type of seizures -- including aura's aka: simple partials. The length of time you are required to be seizure free varies from state to state. The definition of "seizure" in this context may also vary from state to state but every state I've lived in has included simple partials. Dave >>> Hello >>> [quoted text clipped - 52 lines] > > Howdy partials! Hi Dave > "Controlled" means seizure free. That's correct. If there was any confusion with the definition, that should clarify it. Thank you. > In my experience, that means ANY type of seizures -- > including aura's aka: simple partials. I'm happy to leave all those details to the doctor and the motor vehicle department. > The length of time you are required to be seizure free > varies from state to state. The definition of "seizure" > in this context may also vary from state to state but > every state I've lived in has included simple partials. Yes. That's why I gave that website to provide facts as opposed to conjecture. Here it is again: <http://www.epilepsy.com/epilepsy/rights_driving.html> and there is a lot of other material on that site that would be of interest to him. >Howdy partials! > >"Controlled" means seizure free. >In my experience, that means ANY type of seizures -- >including aura's aka: simple partials. People always seem to forget about nocturnal only seizures - in the UK you *can* continue to have them and drive legally. There are conditions (you must have done so for 4 years without any awake seizures). >> Howdy partials! >> [quoted text clipped - 5 lines] > you *can* continue to have them and drive legally. There are conditions > (you must have done so for 4 years without any awake seizures). That is interesting. What if a person is overly tired. Would they have a seizure, similar to a nocturnal seizure? Just wondering, Julie >>> Howdy partials! >>> [quoted text clipped - 12 lines] >Just wondering, >Julie The law is pretty strict you cannot have any seizures while awake - this includes while falling asleep and waking. So if someone had one because they were over tired then you would loose your license. >>>> Howdy partials! >>>> [quoted text clipped - 16 lines] > includes while falling asleep and waking. So if someone had one because > they were over tired then you would loose your license. In California it is a little more relaxed. But then I'm talking about a bunch of liberal wacko's here.  SignatureDave Keays >> The law is pretty strict you cannot have any seizures while awake - >> this includes while falling asleep and waking. So if someone had one >> because they were over tired then you would loose your license. > > In California it is a little more relaxed. But then I'm talking about a > bunch of liberal wacko's here. I don't know much about the laws about driving and epilepsy in the USA and Canada, as I come from England. Here though, if you had epilepsy, you cannot apply to drive for at least 3 years free of a Grand-mal seizure, or at least 2 years free of a Petit-mal seizure. As I suffer from many different types of seizures, falling anytime, anyplace, and anywhere, with absolutely no kind of aura whatsoever, I certainly am not given a license to drive, and would be classed as a potential hazard to everybody else on the street (and rightly so) if I actually was given one! All the best Sofie SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ >I don't know much about the laws about driving and epilepsy in the USA and >Canada, as I come from England. Here though, if you had epilepsy, you [quoted text clipped - 6 lines] >potential hazard to everybody else on the street (and rightly so) if I >actually was given one! Hi Sofie, The law in England is that you have to be seizure free for 1 year before you can get your licence back. OR you have to have had them *only* whilst asleep for a period of 3 years or more. >>>>> Howdy partials! >>>>> [quoted text clipped - 17 lines] > In California it is a little more relaxed. But then I'm talking about a bunch of > liberal wacko's here. Sorry, amidst the sarcasm I forgot the smiley. The last sentence should be: / But then I'm talking about a bunch of liberal wacko's here. 8^) / SignatureDave Keays Gallantman45 is right on! I'm sure that he would agree that anyone with uncontrolled seizures should stay away from the business end of a motor vehicle, but epilepsy is definitely something that can differ drastically in severity. Face it, people who have documented epilepsy have fewer rights than a convicted felon ( I don't think I have to explain ). I myself like having insurance. a job, and a drivers license, all of which would be in peril if I decided to be one of the sheep. Don't want to sound mean, but this group really does seem to be a bunch of goody two-shoes. Life is full of choices - until people with epilepsy can attain full civil rights, I would think long and hard about revealing myself if I didn't have to. Think I'll take the motorcycle to work. W.S. > Gallantman45 is right on! I'm sure that he would agree that anyone with > uncontrolled seizures should stay away from the business end of a motor [quoted text clipped - 8 lines] > revealing myself if I didn't have to. Think I'll take the motorcycle to > work. W.S. Goody two shoes? Because we are concerned about injuring or killing someone? Because we don't want our rights taken away because others choose to drive when their seizures are not under control? Imagine if there are several cases where people who have epilepsy and do not have their seizures under control cause accidents, or plow down a pedestrian. This gets into the news and before you know it a law is passed that anyone who has had seizures (even though they are under control) now cannot legally drive. I like the privilege of driving, so I do appreciate it when others who happen to have a seizure disorder, as I do, respect life and others. If they should not drive - please do not drive. I believe Gallantman has indicated that his doctor approves of his driving, at least that is how I took it. And if your seizures are not causing any problems with awareness or alertness, then yes you are perfectly correct, enjoy your driving privileges. My doctor told me I could drive too while I was transitioning through meds because I wouldn't have a seizure due to the new med being there as a protection. I didn't feel like I would have a seizure, but I did feel like I couldn't walk or talk very clearly at first. So why take the chance of driving on a busy street, changing lanes, not fully focused. I could just imagine if I got into a car wreck the police would have hauled me off for being drunk. Then I would have had to tell them, I'm not drunk - I'm just drugged ;-) So I had friends and family be my wheels for awhile. Now I'm back to driving, but still listening to my body and not driving when I don't feel well. I was a bit confused about the statement Gallantman made that his med dosage was not therapeutic. To me this sounds like he is still having seizures. There is no need for rudeness from any of us, we are here for support. I just went to a support meeting where one young man was riding a bicycle, had a seizure and ended up on a busy blvd. Thank goodness someone stopped and directed traffic. Another young man recently had a car accident due to a seizure, fortunately no one was hurt, except his car. HowdyDave made a good point. "We may think that we are not having seizures, but if we live by ourselves, we may not be aware that we are having seizures, so we feel perfectly safe to drive." Take care, Julie chop > I was a bit confused about the statement Gallantman made that his med > dosage was not therapeutic. To me this sounds like he is still having > seizures. Explaination: There is a scale between two different levels. One is the maximum level. Over that level, you have too much medicine in your system. If your medicine level in your blood fall below the ninimum level, is usually means that you are not getting enough drug to to any good. When my doctor told me that my levels were low, I asked him " Does my dose need to be increased ? " His verbatim reply : " I do not know........does it ?" His point was that I had to listen to my own body. Since I was still having control, then I did not need a larger dose. Oh, it has been 232 days since i had a simple partial.....even though i am at minimum dose, and below level. I made some lifestyle changes, which I feeI is responsible for the better control. What I did might could be used by others.....it may work for them. I wonder if i still need it......but i must inform the "goody two shoes" that I will get approval from my doctor before I try it. > There is no need for rudeness from any of us, we are here for support. .......could have fooled me > chop > [quoted text clipped - 20 lines] > still need it......but i must inform the "goody two shoes" that I will > get approval from my doctor before I try it. That is great that you are finding a life style change gives you better control. And if it makes you feel better to call some of us "goody two shoes" - go for it. You can even call me four eyes if you want ;-) >>There is no need for rudeness from any of us, we are here for support. > > .......could have fooled me Sorry you feel that way, because I do care. Some day I may need more support from this group, hope you are there for me. Just because we are speaking truth the way we see it, doesn't mean we don't want to be supportive. P.S. are you still angry? Julie > > chop > > [quoted text clipped - 35 lines] > > P.S. are you still angry? yes. > Julie After taking over 30 minutes of reading the posts, I have more comments. One poster has mentioned that I am a possible troll. EVERY WORD I SAID IS THE TRUTH.. I only wish that it was NOT ture.. Another poster told everybody that you all are judging with out knowing the facts. This man is totally correct. None of you self righteous posters know the FACTS. I am suffering from severe depession. My girl left me because menopause is screwing up her thinking of me. I tried to cope with my depression by helping with the newly formed local EFA group. It only made it worse. Then I come in here, and the judgments made about me without knowing the FACTS did not help. Julie said that we are here for support.......That is what i came for, but sure as hell did not get > After taking over 30 minutes of reading the posts, I have more > comments. > > One poster has mentioned that I am a possible troll. EVERY WORD I > SAID IS THE TRUTH.. I only wish that it was NOT ture.. I don't think the 'troll' comments applied to you but to one of your supporters. > Another poster told everybody that you all are judging with out knowing > the facts. This man is totally correct. None of you self righteous > posters know the FACTS. We are all reacting to our own situations, how we handled the same situation, and how we think you should do the same. Being denied driving rights is a very important issue which would be hard to ignore. You made a post that almost required a reply but you didn't give enough facts for others. It was the same as mixing water and electricity and complaining that it wasn't comfortable. > I am suffering from severe depession. My girl left me because > menopause is screwing up her thinking of me. I tried to cope with > my depression by helping with the newly formed local EFA group. It > only made it worse. Then I come in here, and the judgments made about > me without knowing the FACTS did not help. I kept out of depression by organizing my own self-help groups. Yours was a very wise idea definitely. But you still have to deal with other humans so clashes are still possible. > Julie said that we are here for support.......That is what i came for, > but sure as hell did not get This thread has shown the difference between styles of support. In my mind her style is only good to a certain point. I am convince the vast majority of posters here thought they were providing support, the kind of support I needed years ago. If it was not the support you needed at the time, I'm sure I speak for others when I say "We're sorry". SignatureDave Keays > Gallantman45 is right on! I'm sure that he would agree that anyone with > uncontrolled seizures should stay away from the business end of a motor [quoted text clipped - 8 lines] > revealing myself if I didn't have to. Think I'll take the motorcycle to > work. W.S. Now you face it, most of those laws came about because seizures caused a few accidents somewhere. If you have an accident while having seizures, you are messing-up the playground for the rest of us! Quit feeding other peoples FUD (fear, uncertainty, and doubt) by pushing their buttons. Explain to them how those buttons don't relate to you and they are misusing them anyway. We've got to live with their stupidity just like they have to live with our seizures. I'm not talking about tip-toeing around the situation but facing it point blank. If you don't like the "goody two-shoes" approach others do, don't do it. Remember that while you don't need it, others may. If you want to live bolder than some, don't get upset unless you let the others live the way they want-- more cautiously. SignatureDave Keays "Warden Salamander" <WardenSalamander@webtv.net> wrote in message news:2460-44896693-394@storefull- > Think I'll take the motorcycle to work. W.S. I was in your shoes 7 years ago. It sucks to have epilepsy and lose your independence, especially when you are young and otherwise healthy. I had a bad car accident when I had a seizure while driving a car, and slammed into a wall going 80 MPH. Fortunately, nobody was hurt (seatbelts are good). I was diagnosed with epilepsy and hydrocephalus, underwent surgery and was given medications. I, being hardheaded, wanted to continue going to work by going on a moped. Unfortunately, the medication wasn't sufficient to control the seizures, and I wiped out on the moped, breaking my hand (helmets are good). Then a new medication was added. My epilepsy still isn't controlled... seven years have passed, medications have come and gone, and I am now trying the VNS therapy (let's hope this works). > Hello > [quoted text clipped - 4 lines] > mood also. Even though I was able to live independentl without meds, > it stil I'm not a lawyer but here is my take in California. Anytime you have seizures in the last 6 months the California DMV wants a hearing with you and your doctor. I'm told they usually go with what the doctor recommends. I'm sure the state you are in is similar. While I had an accident when I had a complex partial over 25 years ago, I got lucky and didn't hurt anyone. It was early in the morning, I plowed into a used-car lot, and was wearing a seat belt. Nobody was hurt even though I totaled 8 cars. I don't think I was very popular with the insurance company however. On the pro side: you said in another post that your doctor trusts you and knows your situation very well. Have him or her work with the DMV and they could very well find a reasonable solution. On the con side: If you are living independently you probably do not know the extent of your seizures. Don't expect the DMV to know what you don't. Get your doctor involved! > My seizures feel sort like a "weird feeling' in my head.....that is > all.....no involuntary movements, no passing out, etc. Even a "weird feeling" can cause a problem. What if you have to react to someone cutting you off (not an unusual event in Southern California)? Those feelings are even more distracting than any cell phone could hope to be. If cell phones can cause people to drive unsafely; so can auras. > Keep in mind that my sizures are so minor that I just ignored them for > a long time. I am able to do anything *safely* during a > seizure,,,,,,including riding a motorcycle. As you probably already know, just because you haven't had an accident yet doesn't mean you won't have one in the future. Remember the DMV has the responciblity to keep the roads safe. They are just doing what they are supposed to. > A local chapter of the EFA was having an organizational meeting at my > town recently. Only three people showed up. I thought I could be of > great help. When the nurse found out t hat I have cps, she went on > about what i cannot do, like drive, etc. I HAVE BEEN DRIVING SAFELY > FOR MORE YEARS THAT THIS IGNORANT BROAD HAS BEEN ALIVE !!! I think that is the responcibility of your doctors. Maybe the nurse overstepped his/her situation. A nurse is not a licensed doctor, probably doesn't have access to your medical records, and hasn't been treating you regularly. Talk to a lawyer about that one. > I know more about my own body than that this ignorant bitch does. She > have never seen me before. In fact, she did even know my name ! > > Now, remember that I represented 33 % of the total audience. I will > NEVER go back to another meeting of the local chapter again . (( > assuming t hat this chapter even survives) Neither the DMV or the EFA is not God. We shouldn't have to treat them like they were. (apologies to some posters here.) They make mistakes but they can be fought. You've got a reason to so do it! > Pre-judging.......that is where we get the word "prejudice". Yes we are "pre-judged". No question about that. But remember that the other person is a person and probably doesn't know everything yet. Include the details of Epilepsy in that list of things they are stupid about. You have the power to scare the sh.t out of people. Now use it well to let them know where they are wrong. But don't give them an excuse to ignore you. Putting them down, being unreasonable, or any kind of "verbal abuse" will give them all the reasons they need. > Thanks for reading No problem. I hope my situation helps. Mine was very similar. We lived through our seizures for 20 years and things changed when we turned 40. Very frustrating indeed. In my case they finally controlled my "uncontrollable" seizures the same year I turned 40-- over 20 years after they took my license away from me. If I could live through those 20+ years, you can live through the next score. So don't get frustrated with others, educate them. Be reasonable in their eyes and work with the authorities (both on law and medicine). SignatureDave Keays There is no need for rudeness from any of us, we are here for support. I just went to a support meeting where one young man was riding a bicycle, had a seizure and ended up on a busy blvd This is just what we don't need--a crying towel. If only the EFA would actually *do* something in its lobbying...but I guess that's a lost cause. > There is no need for rudeness from any of us, we are here for support. > I just went to a support meeting where one young man was riding a [quoted text clipped - 3 lines] > actually *do* something in its lobbying...but I guess that's a lost > cause. But sometimes those crying towels get wet when we are crying and sometimes they get torn when we are venting our frustrations. Yes, we need to listen but we also need to point-out some apparent errors that may result in grave actions. I know others will sometimes find my approaches rude and maybe that is why my self-help group from years ago didn't make it. But I'm still convinced that a combination of calm logic and brutal honesty is the best for those struggling with regular seizures. After all, that is what helped me survive on my own terms. SignatureDave Keays >> There is no need for rudeness from any of us, we are here for support. > > I'm still convinced that a combination of calm logic and brutal honesty is the > best for those struggling with regular seizures. I like those terms! I'm certain you would agree, and I read it as such, that you mean that last sentence to say that "brutal honesty" can only follow *after* the "calm logic". That part was absent from this thread. This thread has been a horrible example of the ability to "support" and a failure of this so-called "support" group. A fellow seizure sufferer came here to discuss a situation that had him very frustrated. I'm sure he was hoping for reasoned discussion as opposed to what had been inflicted upon him. However, there has been zero in the way of "calm logic" and in asking polite questions to clarify his circumstances. What there has been is the "brutal honesty" component without any real effort to determine what applies and what does not. It's been disgusting! I've got a suggestion. If so many of you want to talk about the dangers of epilepsy and driving, then why don't you start your own damn thread about it instead of dumping on any poor soul who mentions the same 2 words in the same post. Color me very angry and totally disgusted. >>> There is no need for rudeness from any of us, we are here for support. >> [quoted text clipped - 5 lines] > that you mean that last sentence to say that "brutal honesty" can only > follow *after* the "calm logic". That part was absent from this thread. Any harshness was calculated to be helpful. It was not meant to be rude. As understandable as his frustration is, I've seen many people in real life who considered "calm logic" to be a useless "goody two-shoes" approach. It was implied in Gallantman45's post and stated later by someone else. To me that is an indication that someone needs the niceties to be packed away for the moment. That person already has so many defense mechanisms in place that they will deflect any attempt of kindness. It happened to Julie's post. "Calm logic" was used many times over. How the situation could cause problems and what the laws were in other commonwealths (not knowing where Gallantman45 was from made it difficult to give precise examples). > This thread has been a horrible example of the ability to "support" and > a failure of this so-called "support" group. A fellow seizure sufferer > came here to discuss a situation that had him very frustrated. I'm sure > he was hoping for reasoned discussion as opposed to what had been > inflicted upon him. However, there has been zero in the way of "calm > logic" and in asking polite questions to clarify his circumstances. Sometimes support means honesty. One example of when it helped me was when I had a small fall-back in 2003 (a small cluster of seizures) there was only one person in my life who sat down and told me about how I was having seizures and was dangerous on the street. Without him I never would have known. It was hard but necessary. Unfortunately that honesty can be misunderstood as rudeness. That person was not rude to me and I don't believe any posters in this thread were rude either (myself included). Getting just a little back on-track here; My 2003 set-back is rather relevant to this thread. My doctors claimed that the seizures were nocturnal and therefore we could possibly convince the court that I could drive. They saw no harm. But I didn't want to replay my accident in 1981 (?) so I hung up my keys. Soon after I got my license back, an elderly driver hit the accelerator and plowed through a crowd just as I did to a car lot. It did occur to me that without that person I mentioned, I could have been in that news story. I'm glad that person in my life was "brutally honest" with me. > What there has been is the "brutal honesty" component without any real > effort to determine what applies and what does not. It's been disgusting! There were several cases of "calm logic" in this thread. The reasons the OP's situation may be dangerous, the reason the laws exist, and why the nurse reacted as she did was explained very well. I don't think there were any personal attacks to Galantman45. I did come close to rudeness when responding to the open hostility Warden Salamander showed. But I didn't even start to approach it when responding to Galantman45. > I've got a suggestion. If so many of you want to talk about the dangers > of epilepsy and driving, then why don't you start your own damn thread > about it instead of dumping on any poor soul who mentions the same 2 > words in the same post. Maybe we did hijack this thread and that I apologize for being a party to it. > Color me very angry and totally disgusted. I'm sorry you disagree with my ways, but that is what helped me in the past and I thought it was called for in this thread. SignatureDave Keays >>>> There is no need for rudeness from any of us, we are here for support. >>> I'm still convinced that a combination of calm logic and brutal [quoted text clipped - 5 lines] > > Any harshness was calculated to be helpful. It was not meant to be rude. How is a recipient to know the difference? > As understandable as his frustration is, I've seen many people in real life who > considered "calm logic" to be a useless "goody two-shoes" approach. It was > implied in Gallantman45's post and stated later by someone else. To me that is > an indication that someone needs the niceties to be packed away for the moment. There are/were too many ambiguities to read it that way, imho. A rapport needed to be developed and questions asked - not lectures given. > That person already has so many defense mechanisms in place that they will > deflect any attempt of kindness. It happened to Julie's post. Because it immediately implied that he should not drive, without getting the facts - the very issue he was in a rage over and had posted about. The reaction was predictable. > "Calm logic" was used many times over. Where was that? > How the situation could cause problems > and what the laws were in other commonwealths (not knowing where Gallantman45 > was from made it difficult to give precise examples). I'm the one who tried to add balance by pointing out that he may very well be driving legally and offered a website where he might be able to locate the applicable laws. I was hopng that he might respond with more details, but it looks like he had already been scared off by then. >> This thread has been a horrible example of the ability to "support" and >> a failure of this so-called "support" group. A fellow seizure sufferer [quoted text clipped - 4 lines] > > Sometimes support means honesty. Twisting reality is not honesty! We simply do not know enough about his situation. It could easily be the case that his seizures are totally controlled. The only thing that was raising a suspicion was that his serum levels are below "theraputic range". That is only a guideline. He knows whether he is having seizures or not, simple and/or complex, in the same way that he reported having them when he was first diagnosed. He hasn't suddenly lost the means of knowing and doctors can only go by what is reported to them which was the case back then and now. He takes his tegretol on an ongoing basis in obvious recognition that he does have a seizure disorder. I'd like his clarification of the above and it's one way of reading what he said. I'm intentionally attempting to give a counterbalancing interpretation to the one-sidedness I've seen here. > One example of when it helped me was when I had > a small fall-back in 2003 (a small cluster of seizures) there was only one [quoted text clipped - 3 lines] > person was not rude to me and I don't believe any posters in this thread were > rude either (myself included). I don't see how that applies to the current situation. It takes a lot of unfounded assumptions to make it fit. > Getting just a little back on-track here; My 2003 set-back is rather relevant to > this thread. My doctors claimed that the seizures were nocturnal and therefore [quoted text clipped - 4 lines] > mentioned, I could have been in that news story. I'm glad that person in my life > was "brutally honest" with me. And that's fine and that's your situation. However, one size does not fit all. >> What there has been is the "brutal honesty" component without any real >> effort to determine what applies and what does not. It's been disgusting! > > There were several cases of "calm logic" in this thread. The reasons the OP's > situation may be dangerous, the reason the laws exist, and why the nurse reacted > as she did was explained very well. Lectures, lectures, lectures with no attempt to get the facts. The nurse is ignorant as far as I could see without added information. > I don't think there were any personal > attacks to Galantman45. I set that out there by itself so we could talk about it. Could anyone fail to interpret that as implying that someone had made the claim that there had been a "personal attack"? I haven't seen one myself. > I did come close to rudeness when responding to the open hostility Warden > Salamander showed. But I didn't even start to approach it when responding to > Galantman45. Please don't think that I was dumping on you because it was your post on the physical thread that I responded to. My post was directed to the general audience, I had to put it somewhere, and you presented some interesting points to start off on. Apologies if I led you to think otherwise. >> I've got a suggestion. If so many of you want to talk about the dangers >> of epilepsy and driving, then why don't you start your own damn thread [quoted text clipped - 7 lines] > I'm sorry you disagree with my ways, but that is what helped me in the past and > I thought it was called for in this thread. As above. You are not under personal attack! Sorry. My statements apply to the group in general and only if anyone sees themself, then please take it to heart. chop > Twisting reality is not honesty! We simply do not know enough about his > situation. It could easily be the case that his seizures are totally controlled. [quoted text clipped - 9 lines] > said. I'm intentionally attempting to give a counterbalancing interpretation to > the one-sidedness I've seen here. I could not have said it better myself. Your post hit the target. >>>>> There is no need for rudeness from any of us, we are here for support. >>>> I'm still convinced that a combination of calm logic and brutal [quoted text clipped - 31 lines] > > Where was that? HowdyDave: "You said that you were diagnosed with COMPLEX partial seizures. The seizures you describe are SIMPLE partials." "If you live by yourself there is a definite possibility that you are having more seizures than you think, but just are not aware of them. "I am not aware of having a complex partial unless I hurt myself or it is reported to me afterwards by a witness." "If you drive and ever have an accident for ANY reason... (even if you are stopped at a red light and someone plows into your rear end) -- If the authorities find out about your epilepsy you will be in a heap of trouble WITH THE LAW." Paul F: "What if a person is overly tired. Would they have a seizure, similar to a nocturnal seizure?" Sophia: "Here though, [in Canada] if you had epilepsy, you cannot apply to drive for at least 3 years free of a Grand-mal seizure, or at least 2 years free of a Petit-mal seizure." myself: "In California it [the law] is a little more relaxed." "Anytime [in California] you have seizures in the last 6 months the California DMV wants a hearing with you and your doctor." "Have him or her [your doctor] work with the DMV and they could very well find a reasonable solution." "If you are living independently you probably do not know the extent of your seizures." >> How the situation could cause problems >> and what the laws were in other commonwealths (not knowing where [quoted text clipped - 5 lines] > locate the applicable laws. I was hopng that he might respond with more > details, but it looks like he had already been scared off by then. I hope he wasn't "scared off". But then being too soft could deter him from coming back also because it was just repeating the same touchy-feely thoughts. It is a delicate balance that has to be maintained. >>> This thread has been a horrible example of the ability to "support" and >>> a failure of this so-called "support" group. A fellow seizure sufferer [quoted text clipped - 15 lines] > his tegretol on an ongoing basis in obvious recognition that he does > have a seizure disorder. If we didn't know reality (according to you) how can we judge honesty? With the exception of one sub-thread, nobody referred to his medical/serum level. That can't be truly known by anybody (Galantman45 included) without looking at lab results or his medical records. But his reaction to them was well known. I only know I had a seizure when I wake up in a weird place like the ER or an ambulance. I needed other peoples input to know. Justification was too easy: "I was tired and anybody could loose their bladder", "my tongue hurts because I must have bit it while eating or chewed it in a dream", and the list goes on. Galantman45 was in a situation where justification could be fatal to him and bystanders. No, we don't know that it would happen but from his posting but over justification was a strong possibility. > I'd like his clarification of the above and it's one way of reading what > he said. I'm intentionally attempting to give a counterbalancing > interpretation to the one-sidedness I've seen here. According to another post, there was already plenty of "tip-toeing" in this thread. In that sub-thread I was more direct and judgmental than I usually am ("face it ..."). >> One example of when it helped me was when I had >> a small fall-back in 2003 (a small cluster of seizures) there was only [quoted text clipped - 11 lines] > I don't see how that applies to the current situation. It takes a lot of > unfounded assumptions to make it fit. Anecdotal evidence is always in question. But this was a case where driving a vehicle required extra caution. That was what this thread was about. By qualifying my antidote (earlier statements about the state I live in I was trying to offset the fact that this may not apply to him. Not only are some medical facts missing but so were the specifics of the law itself. >> Getting just a little back on-track here; My 2003 set-back is rather >> relevant to [quoted text clipped - 14 lines] > And that's fine and that's your situation. However, one size does not > fit all. True. But I didn't claim it to be. I was saying I personally had experience with a this situation: deciding whether to drive or not while seizures are a possibility. Actually this is very relevant because my location (southern California) is known for being a place that living is difficult without driving a car. I know the need spoke of very well. I know how being told you can't drive is an attack to the ego, makes you feel sub-human, and makes the logistics of living almost impossible. But caution must override pain in this case. >>> What there has been is the "brutal honesty" component without any real >>> effort to determine what applies and what does not. It's been [quoted text clipped - 8 lines] > Lectures, lectures, lectures with no attempt to get the facts. The nurse > is ignorant as far as I could see without added information. Based upon what the OP said, there was nothing wrong with stating that he should work with his doctor and the DMV. The majority of other posts were not "judgments" or "lectures" but people did point-out potential problems that were overlooked by the OP. It was not an attempt to lecture anybody but a self-help group like this needs the input from others who went through similar situations and is therefore able to see things in a different light. Holding back is sometimes a disservice to other person even if it is uncomfortable to us. Believe me it was uncomfortable. Also, the we really can't judge the nurse or the DMV. We don't know what facts they had in their hands at the time. I still say the doctor is the one who had the responsibility to step in and provide additional information and educated opinions to them. hence my prodding him to have his doctor work with the DMV. >> I don't think there were any personal >> attacks to Galantman45. > > I set that out there by itself so we could talk about it. Could anyone > fail to interpret that as implying that someone had made the claim that > there had been a "personal attack"? I haven't seen one myself. I am being a little defensive since I knew I was on the border of acceptability (but still on this side). I made a conscious decision to step out of my usual box and expected someone to react negatively. It looked to me like rational possibilities were being deflected from the start and something different was needed. >> I did come close to rudeness when responding to the open hostility Warden >> Salamander showed. But I didn't even start to approach it when [quoted text clipped - 6 lines] > interesting points to start off on. Apologies if I led you to think > otherwise. ditto my response above But I do want to add that their seems to be some laundry that needs to be aired-out: When is "help" helpful and when is it harmful. Thank you for giving us that chance. >>> I've got a suggestion. If so many of you want to talk about the dangers >>> of epilepsy and driving, then why don't you start your own damn thread [quoted text clipped - 13 lines] > to the group in general and only if anyone sees themself, then please > take it to heart. I still don't think the rest of the thread deserves any criticism, it was me who was questionable (but still necessary). Please recognize that we seem to have different methods but we are both trying to help. I'm sure that could be said about other posters. SignatureDave Keays <snip> >>> "Calm logic" was used many times over. >> Where was that? > > HowdyDave: > "You said that you were diagnosed with COMPLEX partial seizures. > The seizures you describe are SIMPLE partials." What's the point? How much should or can he say in one post. > "If you live by yourself there is a definite possibility that you > are having more seizures than you think, but just are not aware > of them. "If" a lot of things. How about getting some facts? > "I am not aware of having a complex partial unless I hurt > myself or it is reported to me afterwards by a witness." And the OP doesn't already know that? > "If you drive and ever have an accident for ANY reason... > (even if you are stopped at a red light and someone > plows into your rear end) -- > If the authorities find out about your epilepsy you will > be in a heap of trouble WITH THE LAW." Looks like an agenda with scare tactics. and on & on & on, sigh! <snip> > I hope he wasn't "scared off". But then being too soft could deter him from > coming back also because it was just repeating the same touchy-feely thoughts. > It is a delicate balance that has to be maintained. You don't want my thoughs on that. <snip> >>>> logic" and in asking polite questions to clarify his circumstances. >>> Sometimes support means honesty. [quoted text clipped - 14 lines] > looking at lab results or his medical records. But his reaction to them was well > known. What's that I hear? I know exactly what my own blood serum level is the day after they draw blood. What is so hard to comprehend about that? I also know that it also has recently dipped below therapeutic range and I am taking measures to raise it. Now don't get in a tizzy over that and start lecturing me about the dangers of driving because I don't drive and haven't for several years. > I only know I had a seizure when I wake up in a weird place like the ER or an > ambulance. I needed other peoples input to know. Justification was too easy: "I [quoted text clipped - 4 lines] > bystanders. No, we don't know that it would happen but from his posting but over > justification was a strong possibility. Assumptions,assumptions,assumptions, and all with an agenda behind them. Watching the nonsense in various posts on this thread leaves me trusting Galantman45 a lot more than those posters. >> I'd like his clarification of the above and it's one way of reading what >> he said. I'm intentionally attempting to give a counterbalancing [quoted text clipped - 3 lines] > thread. In that sub-thread I was more direct and judgmental than I usually am > ("face it ..."). I wasn't easily able to locate that and memory doesn't serve. >>> One example of when it helped me was when I had >>> a small fall-back in 2003 (a small cluster of seizures) there was only [quoted text clipped - 13 lines] > Anecdotal evidence is always in question. But this was a case where driving a > vehicle required extra caution. That was what this thread was about. I repeat my objection. You are assuming that it applies to Galantman45 (medically!). > By qualifying my antidote (earlier statements about the state I live in I was > trying to offset the fact that this may not apply to him. Not only are some > medical facts missing but so were the specifics of the law itself. Yes, that's right. >>> Getting just a little back on-track here; My 2003 set-back is rather >>> relevant to [quoted text clipped - 22 lines] > to the ego, makes you feel sub-human, and makes the logistics of living almost > impossible. But caution must override pain in this case. Your mind has wandered off-topic. You're not talking about the case at hand. >>>> What there has been is the "brutal honesty" component without any real >>>> effort to determine what applies and what does not. It's been [quoted text clipped - 9 lines] > Based upon what the OP said, there was nothing wrong with stating that he should > work with his doctor and the DMV. He isn't already? > The majority of other posts were not > "judgments" or "lectures" but people did point-out potential problems that were > overlooked by the OP. How do you know they were "overlooked". That's assuming facts not in evidence. > It was not an attempt to lecture anybody but a self-help group like this needs > the input from others who went through similar situations and is therefore able [quoted text clipped - 3 lines] > Also, the we really can't judge the nurse or the DMV. We don't know what facts > they had in their hands at the time. I don't recall his mention of the DMV. > I still say the doctor is the one who had > the responsibility to step in and provide additional information and educated [quoted text clipped - 45 lines] > > I still don't think the rest of the thread deserves any criticism, But I obviously do. > it was me who > was questionable (but still necessary). You are too harsh with yourself and you were just one of the players. > Please recognize that we seem to have different methods but we are both trying > to help. I'm sure that could be said about other posters. That's the objective, but I wonder if "we had to destroy the village in order to save it" applies in this case. > <snip> >>> >>>> "Calm logic" was used many times over. >>> Where was that? [snip] >> "If you live by yourself there is a definite possibility that you >> are having more seizures than you think, but just are not aware >> of them. > > "If" a lot of things. How about getting some facts? I consider the facts what the OP said. We will probably never have adequate access to the actual data so we can verify the facts. All we know is what the OP says. Even if the driving authorities, the nurse, and his doctor post here we will never know about his living arrangements. >> "I am not aware of having a complex partial unless I hurt >> myself or it is reported to me afterwards by a witness." > > And the OP doesn't already know that? That is not the impression I got from the OP. >> "If you drive and ever have an accident for ANY reason... >> (even if you are stopped at a red light and someone [quoted text clipped - 3 lines] > > Looks like an agenda with scare tactics. I think using the term "scare tactics" to deflect focus on the argument at hand would qualify as setting up a "straw man". > and on & on & on, sigh! <snip> > [quoted text clipped - 5 lines] > > You don't want my thoughs on that. Considering the reason for the sub thread; yes I do. I'll probably argue with them but that is healthy. > <snip> >>>>> logic" and in asking polite questions to clarify his circumstances. [quoted text clipped - 21 lines] > What's that I hear? I know exactly what my own blood serum level is the > day after they draw blood. What is so hard to comprehend about that? You and I are unusual there. I know very few people who seek that information. I have had many comments on my collection of my own medical records and my usual refusal to accept the doctors terms without any research on my part. I say "usual" because there are two areas I will abide by anothers judgment; I will not adjust my prescription on my own and I will listen to others when the consequences may put others in peril. > I also know that it also has recently dipped below therapeutic range and > I am taking measures to raise it. Now don't get in a tizzy over that and > start lecturing me about the dangers of driving because I don't drive > and haven't for several years. I didn't consider it. You seem to be very well informed and I assume (red-flag waving) you have a cool head about medical issues. >> I only know I had a seizure when I wake up in a weird place like the >> ER or an [quoted text clipped - 14 lines] > Watching the nonsense in various posts on this thread leaves me trusting > Galantman45 a lot more than those posters. Assumptions are the only thing possible in a virtual environment. We probably both know what "assume". But we have no choice but to use them. That is why fraud is so easy online. Assuming what Galantman45 said was true, he does appear to be justifying his current behavior. But I am only assuming he is not a troll and he actually did act the way he stated. But I could be wrong here. You have decided to put your trust in Galantman45, that is your prerogative. It is mine to think he is human and open to erroneous thoughts and behaviors. >>> I'd like his clarification of the above and it's one way of reading what >>> he said. I'm intentionally attempting to give a counterbalancing [quoted text clipped - 7 lines] > > I wasn't easily able to locate that and memory doesn't serve. You are right. The term "goody two-shoes" was used not "tiptoeing" and the comment was about the ng as a whole and not this thread specifically. I guess I didn't verify enough facts in that case. "Don't want to sound mean, but this group really does seem to be a bunch of goody two-shoes." - WardenSalamander >>>> One example of when it helped me was when I had >>>> a small fall-back in 2003 (a small cluster of seizures) there was only [quoted text clipped - 17 lines] > I repeat my objection. You are assuming that it applies to Galantman45 > (medically!). No. While he did claim certain ictal phenomenon, me and others were asking ethical questions. [snip] >>>> Getting just a little back on-track here; My 2003 set-back is rather >>>> relevant to [quoted text clipped - 31 lines] > Your mind has wandered off-topic. You're not talking about the case at > hand. I was trying to state why I thought I did not wander off. You may disagree about the degree of relevance, but I did not go OT here. >>>>> What there has been is the "brutal honesty" component without any real >>>>> effort to determine what applies and what does not. It's been [quoted text clipped - 12 lines] > > He isn't already? Not according to his own statements. >> The majority of other posts were not >> "judgments" or "lectures" but people did point-out potential problems [quoted text clipped - 3 lines] > How do you know they were "overlooked". That's assuming facts not in > evidence. That was implied in his post. If he gave these facts any consideration he didn't mention it in his post. >> It was not an attempt to lecture anybody but a self-help group like >> this needs [quoted text clipped - 10 lines] > > I don't recall his mention of the DMV. He didn't, that came later in the thread. But issues about an ability to drive is in the realm of the DMV. At least it is in California and I assume elsewhere also. >> I still say the doctor is the one who had >> the responsibility to step in and provide additional information and >> educated >> opinions to them. hence my prodding him to have his doctor work with >> the DMV. [snip] >> I still don't think the rest of the thread deserves any criticism, > > But I obviously do. I never questioned whether you did or not. I was stating my position not yours. >> it was me who >> was questionable (but still necessary). > > You are too harsh with yourself and you were just one of the players. Thank you. I was apparently more sensitive than others. >> Please recognize that we seem to have different methods but we are >> both trying >> to help. I'm sure that could be said about other posters. > > That's the objective, but I wonder if "we had to destroy the village in > order to save it" applies in this case. To quote another; You don't want my thoughts there. Besides, this seems like another attempt at a "straw man" argument. SignatureDave Keays <snip> Could we do both of ourselves a big favor and drop it at this point? It's gotten quite circular and is pretty much a waste of both our time which I have all too little of already. Thanks.
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