A Call to Arms in the Epilepsy Fight

I just saw this story. Wanted to say something myself. I have had epilepsy since I was five and I am 50 now. I may have been genetically predisposed since my grandfather and uncle both were schiz and there were other incidences of epilepsy in the family (all covered up, of course). I started out with absence seizures, they changed to psychomotor and then to tonic-clonic and occasional partial-complex. I began taking tegretol when I was 25, switched to topamax and keppra in '97 after numerous experiments with everything in between, courtesy of the VA. Yeah, the VA. I joined under false pretenses when I was 21 and managed to stay in for three years before I got kicked out because of my epilepsy. Got caught with my phenobarb during a drug search. I still have my driver's license, only because I was old enough to get in to the system before everything had to be reported, and my Drs lie for me. I spent 17 years doing construction and maintenance work. I've had a total of 6 stitches in my life, never broken a bone. I live hard, drink hard, and never worry about dying in bed. I know that other people ain't as lucky as me, but I never let anyone tell me what I can and can't do, including my parents. My father, an anesthesiologist, stays on top of the latest research and reports to me when he hears anything new. He admires me for not lying down and rolling over, even though he doesn't approve of my drinking. My Drs at the VA support me 100%. Anyone who thinks you can't live the life w/epilepsy, just remember, never let anyone tell you what you can and can't do. Never let doctors or family members bully you. Never take bullshit from people in public places after having a seizure. Tell 'em to *** off and die. Don't let teachers patronize you, because teachers don't know anything about epilepsy. They just want to cover their butts and keep their jobs. Don't let doctors or teachers insist that your kids be overmedicated so that they can feel safe. It's the life of your kid first. Never forget it. Those teachers don't care, and if you think I don't know, well, I was a substitute teacher for almost three years. The way I saw kids with epilepsy treated was shameful. Thank God I grew up before all this litigiousness, when I could take my own pills and only my family worried about my epilepsy, not the school. When I went to school, if you had a seizure, they just called your parents and you went home for the rest of the day and came back the next. No ambulance rides, no money wasted and no humiliation. We need to go back to that kind of mentality.

Where are the walks, runs, fund-raisers for Epilepsy? Since so many are afflicted, why are more groups not united in fundraising?

Posted in response to "Agony, Hope & Resolve"

Dear Mrs. Axelrod,
I was touched by your daughter Lauren's stoty and your personal family experience. I was also deeply moved and inspired by all the articles about Epilepsy and seizures and the determination and pasion that families like yours and doctors like Orrin put into the common effort of finding the cure. It was like hearing for the first time the voice of a trapped person coming out of the rubble after several days of search, filled with hope that everybody else would listen and help dig him out. Because of the economical crisis and coincidentally the 'programmed death" of brand name medications, like Keppra, and the replacement of such for generic "equivalents", the "magic bullet" will be no more. The impact of these substitutions is unmeasurable, specially for the patients who responded well to the brand name medication and suddenly began having breakthrough seizures because of it, some even presenting on "status epilepticus". Patients like Lauren that had been seizure free, could begin to have seizures on generic antiepileptic medications and we know that in a large number of cases, once it recurrs, the seizures may be refractory to the usual therapy, often needing more than one drug, and sending everything back to square one, not even taking in consideration that in attempts to save money, the insurance companies would inadvertently increase the global economical burden of disability that these patients will impose with ER visits, hospitalizations, etc. It is once more that the voice of many is needed so somebody can rescue the desperate, specially the ones with no choice, since they don't have money to pay for the brand name and the insurance companies would not approve them, even if doctors spend countless hours trying to obtain authorization instead of spending time seeing patients, some which already waited many months to be seen. I praise Dr. Devinsky and his team for being such a loud voice as well as all the contributors for the Epilepsy edition. I hope we can be heard in congress about this issue, which has the potential to be disastrous.
Rolando Sousa, MD. Pediatric Epileptologist. NY/NJ

Its not surprising that Justice Souter wants to resign from his position. He's beginning to look more and more like Justice Stevens every day.
James Nelson
Brainerd, Minnesota

I was delighted to see that American Lion won Editor Jon Meacham the Pulitzer Prize. It was an awesome book & I was happy to read Ann McDaniel's kudos that shared a bit about the person who did that fine writing. That was on Newsweek's page 4. Then on page 9, Newsweek prints a picture of Justice Brennan & identifies it as Justice Souter. A real disappointment. The Supreme Court is too important and there are, after all, only NINE justices. Yeah, I know it's not the biggest error in the world, but you are Newsweek. If my 10th grade U.S. History students made such an error, I'd use it as a teachable moment to urge them to take nothing for granted - check your facts.
If something is written or printed in error - there's someone out there who is bound to believe it anyway (Ahmadinejad's "no holocaust" nonsense, for example. Or need I mention Bush' claim about WMDs?). Without the facts, we cannot draw reliable, accurate conclusions.
Jack Wilson, Melrose, MA

Thank you Newsweek for your dedication of the magazine to the struggle of epilepsy! I have not seen anything about it in such detail from a prominent news source before!. Your articles covered the medical aspects and the negligence of our resources to finding a cure, beautifully. However the financial burden, the sociological implications were not covered in depth. According to the Epilepsy Foundation in a recent article approximately $40billion are spent by patients for seizure control just in the U.S. 85% of people with seizures have them under control, and 15% do not. Of the $40 billion the 15% spend 85% of the money used for gaining control, while the 85% who are under control, spend 15%. Add this to the burden of joblessness in this 15% group and you can see the problems they have managing to keep solvent. The social services don't comprehend the severity, since adequate nutrition is essential to seizure control. Stress control is also, and being poverty stricken and constantly afraid doesn't help either. Having an uncontrolled seizure condition is like living with a stalker within. I have had seizures for nearly 50 years and am amazed each day that I awaken that I have awakened. Everyone I know that has been dealing with this problem has died. The judge at my divorce hearing said "I looked good to him"" so gave me minimal support. When I look at the want ads, I cross out the jobs that require driving, heavy machinery usage, and the jobs too far from me, and I am left with few if any to explore. That and the fact that I sleep more than most people limits me further.there is still a great deal of prejudice about hiring "insurance liabilities" to say nothing about the fact that most people do not have a clue about how to respond if a seizure should occur. I again want to thank you for your informative articles; I plan to copy them and send them to all I need to deal with in hopes they will gain some insight into my life.
Sincerely,
Susan Ballard
Syracuse, New York

"Have We Softened Up On Torture" I'm going to ask anononimity or a fake name on this as I fear retribution by Federal Govt people - I worked for the US Food and Drug Administration as an Inspector-Investigator , and Officer on both Coasts of USA. In our offices in Los Angeles, when LSD was first coming in illlegally for parties, etc. fro Vanada ,I bellieve, a group of Inspectors set up to out Prescription Drug sales by Drug Stores and Street peddlers( we called them "Gum Shoes"- and two or three of themnottoo swift re which kind of doors of motels,hotels, office to bang in withtheir bodies- so wore braces or ties supporting broken shoulders and/or caollar bone- most ofthose men were ,or took, transfers over to Burae ofNarcotics. more busts and glory,maybe, but definitely more money! We had tapes of someof their "rilling" sessions done inmotel rooms nearbyour offices..and I'd say right now that in those years (easrly 60's) there was a god dealof torture or almost torture to obtain information and statements from alleged drug dealers, etal...Then before that when I was in US Marine Corps during Korean scrape (1951), we received severla reservists from NYC area a- two orthree were NYC Plicmen and they bragged of their torture tactics, some just to be sadistic, I think,others toobtain confessions or staements.. Many US people, and their officials, are not above torure to obtain eveidnce- often thrown out by the courts or unable to be subsatntiated!! Maybe we aren't really shocked by torture, nor are we any goody two shoes! Clyde D Beaty SSGTUSMCRET DURHAM< NC

RE: Epilepsy and "Convulsions" I took twoor three bullets through myhead, knocking out a brainlobe and damaging other areas and my skull. Doctors (1951-52) warned me and my spouse of possible convulsions- even topoint I carried a large tbspn in my shirt pocket so could jam inmy mouth to prevent swallowing of tongue, etc! and put me on prophylactic medicines of phenobarbital and dialntin..a standrad treatment in those days I beleive. The phenobarb after a bit "reversed " onme and I after several bad falls inmy house in early morning hours when up to study and gotowork, begab to raelly act in reverse and I was high as all get out worse than a drunkon alcohol! Epilepsy ,I was told, has special spots on brain that trigger the seizures it causes, convulsions may come from Epilepsy alright, but can come fromother damages to the head and brains. I think??? Clyde D Beaty SSGT USMCRET 100%SC Disability, Durham,NC 919 225 9980

There was a 'deep past cause' behind this negative matter that really occured.
So therefore in what we can see or hear; As a consequence of this, we are witnessing
the present day effects; Which is beyond physical reform and comprehension.

It is quite obvious that these people need 'sincere genuine help' and positive support;
I strongly recommend to anyone, to pay a vist to these three websites.
"They are:- www.poetry4charity.webs.com www.wix.com/givehelp/donate www.4wisdom.synthasite.com

Please! Spread the good word in what you have read & heard. All for love."

I have a 19yr old son who has struggled with Epilepsy for 10 years, unless you have walked in their shoes, it is so hard to understand the frustration a person with Epilepsy has to endure in their daily lives. I appreciate Newsweek using this for their cover story as this condition has been pushed aside rather than talked about and discussed as easily as cancer or diabetes. We will not cease in our search for an answer to the why's and what do we do now answers for ALL who suffer from this condition. K Crofoot, Slaton, Tx

What an Enlightened article in Newsweek regarding Epilepsy. My 14 yr. old daughter had her first Grand Mal when she was 9. Since then it has been an uphill battle that just recently & cautiously we feel we have the right combo to control her seizures. More than that though, I want to thank you for bringing up the daily struggles of side effects from the meds or mini episodes that have affected her daily life,especially in school. I will be bringing the mag into her school for the guidance counselor to read so that she might enlighten other teachers so they have a better understanding of her mood swings (which at 14 I have trouble distinguishing between)or times that she tells them she "just does'nt feel right". We have never used Epilepsy as a crutch for my daughter but would appreciate a little more understanding on the schools part.

Regarding the review of Disney's "earth," I agree that very young children should probably skip the movie for now, but children should not automatically be excluded from the subject of nature simply because of "nature in tooth and claw." Today's kids are far too protected as it is, and let's not forget: it's "nature RED in tooth and claw...and that red ain't ketchup.

I am 47 years old and have lived with epilepsy all my life. Always wondered why we didn't get the funding like the other conditions did. Epilepsy is scary to live with. You don't know what it's like to do something and be carefree. It's like you're always in the grips of Epilepsy. They need to research it, cure it, and fast. If there's anything I can do as far as research or giving you answers to unanswered questions, I would be more than happy to. My e-mail is pengu1n13@yahoo.com