Epilepsy Talk

Who’s At Fault? | January 12, 2014


Malpractice, negligence, arrogance.  The doctor’s oath of “DO NO HARM,” seems to have been forgotten.

Instead of humane and compassionate treatment, doctors and hospitals are treating epilepsy patients with little or no regard for their condition.

Here are some chilling examples:

A Dearborn doctor falsely diagnosed hundreds of kids with epilepsy and was richly compensated ($350,000 extra!) for “bringing business to the hospital.”  Many of the children were put on dangerous drugs that made them sleepy and in some cases suicidal.

A British man was abused by Christian Brothers, and locked in a mental hospital for 33 years as an epileptic.

A woman in Pittsburgh was handcuffed, shackled and restrained during an epileptic seizure because the police suspected her of being on cocaine.

A hospital in England admitted that a doctor misdiagnosed epilepsy or over-prescribed drugs for 170 children.

A woman had her Dilantin level ramped up – due to erroneous blood tests — and she ended up in a different hospital the next day on life support.

A 5-year-old boy died after being given seven times too much of an anti-epilepsy drug.

It’s interesting that whenever a crime or harm is done to a person with epilepsy, or as soon as the person’s epilepsy becomes known, the accused are veiled in immunity.

Any claims by someone with epilepsy that they have been physically abused are written off or ignored, claiming that the person cannot function properly with their degree of epilepsy, and that additional treatment is necessary to prevent the incident from happening again.

The degree of the outcome is basically irrelevant, from inflicted emotional trauma, to assault and battery, to robbery, kidnapping, rape, and murder.

And, to add insult to injury, people with epilepsy experience these atrocities at a much higher frequency, because they are regarded as having something “wrong” with them. 

The results of the harm will most likely be often written off because the person had epilepsy. Therefore they don’t “count.”

Even the number of witnesses, the degree of evidence, and the presence of law enforcement officials are basically irrelevant.  Most people tend to turn their heads and pretend nothing happened.

Well-documented cases with complete sets of video, don’t sustain punishment, legal action, correction, change in policy or even change in protocol.

And so the blame goes to the victim.  (Are they insinuating that we’re all nuts?)

This resulting denial of “equal protection under the law” is an additional abuse. 

It’s sad to know, the very “authorities’ who swore to protect, serve and save our lives, can be as deadly as the epileptic seizures we are forced to live with, everyday.

Elsewhere, this country would call such abuse as crimes against humanity.

In most states, having a seizure is technically illegal, and while prosecutions are not many, they do happen.

When prosecutions happen, many states only allow the insanity defense, which strongly implies that the government itself regards epilepsy as a form of mental illness, in addition to the prejudiced public.

Above are publicly documented stories.  The private stories below are as personally traumatizing and horrific to believe, no less prosecute…

Like the lady who was almost convinced by doctors to pull the plug on her 16-year old daughter’s life support, because they asserted her young life would no longer have any quality.

The patient who came into the ER experiencing non-stop seizures who was considered too loud and unruly, so he was placed by nurses in a room down the hall, where the staff and waiting room patients would be spared the “scene.”

Nobody took the time to check on him until 30 minutes later by which time he needed to be put on a ventilator and subsequently died.

In Quebec, patients with epilepsy were written off as “crazy” and were imprisoned in a psychiatric hospital, where they were strapped to their beds all night, kept abusively in straitjackets, or left zombie-like from too many drugs.

“I have woken up in four point restraints.  Been injected with medication that caused me to have Grand Mal seizures.  I have also been on toxic doses of AEDs, which is part of the reason why I am now so physically ill.”

“I was put in the Harborview Psychiatry Intensive Care Unit for treatment of my epileptic seizures.  Epilepsy?  No. Insanity?  Yes. Or so they concluded in their wisdom.”

“I have been denied food, meds, sleep, needed medical care, etc.  Whatever happened to healing?  Prisons get more attention, but the problem is much worse in hospitals.”

“I made a good life for myself until I tried to get help from the medical establishment.  Once they started ‘taking care of me’ and not allowing me to take care of myself, that’s when everything went out of control and I got so seriously ill, I could no longer work.”

Laws are being broken, rights are being denied, people are suffering, being abused, ignored and dying.  Exactly what is the definition of a “doctor”?  Or a “hospital”? And what does it take to be treated with care like a real, bona fide patient?

Another article of interest:

Your Hospital Rights… http://epilepsytalk.com/2010/09/28/your-hospital-rights/

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Resources:

http://www.thefreelibrary.com/Abused+by+Christian+Brothers,+locked+in+a+mental+hospital+for+33yrs…-a081236137

http://blogs.abcnews.com/thenote/2010/07/judge-clarence-thomas-nephew-derek-tasered-by-hospital-staff-family-says.html

http://www.simonbaker.me/2/hi/uk_news/england/1682630.stm

http://www.oikos.org/psychabuse.htm

http://www.mlive.com/news/detroit/index.ssf/2010/06/lawsuit_dearborn_doctor_falsel.html

http://my.epilepsy.com/discussion/987472

http://host.madison.com/news/article_b8d8d5e9-c0cb-5eb4-8cb6-de7884405f34.html

http://my.epilepsy.com/node/987537

http://www.dailymail.co.uk/news/article-1329263/Bailey-Ratcliffe-died-given-seven-times-epilepsy-drug.html

http://www.fiercehealthcare.com/story/doctor-wrongly-diagnosed-children-scam-more-money-lawsuit-claims/2010-06-15#ixzz16PIiV1pk


59 Comments »

  1. Now add the word, “autism” to the equation (which is often the case with epilepsy), and guess how much worse it is.

    Comment by Martha — January 12, 2014 @ 2:12 PM

  2. Lots, I’m sure. :-(

    Comment by Phylis Feiner Johnson — January 12, 2014 @ 2:39 PM

  3. It is just not epilepsy. Remember Michael Jackson whose doctor left the room to make a cell phone call after giving him a fatal dose.

    I am sure that you have also heard on the news about the girl who had a tonselictemy (sp?). They pronounced her dead. They even wrote a death certificate. She is in another hospital now. I do not know if she is still alive like the family says or if they are too grief-stricken and are in denial.

    My brother-in-law went in for a heart surgery. He was put in ICU. He had to go to the bathroom so he just got up and went to the bathroom. They found him two hours later and had to revive him. They put him on a ventilator. A few days later he was talking and the hospital said that he would be home by Dec 25,2013.
    Two days later he did die. What happened?

    Another one that made the news, the doctor decided to leave after an operation and had the nurse finish the job.

    Soon this system will have passed and their will be no more death. (Revelation 21:3,4

    Comment by Ruth — January 12, 2014 @ 4:07 PM

    • WOW!

      That’s like the guy who they put in a back room because he was causing too much of a “fuss”.

      Didn’t they at least have a “call” button?

      I pushed that button and three nurses came skidding into the bathroom.

      On the other hand, another time, I had a seizure and after pushing the “call” button, no one came at all.

      When a nurse finally DID appear, she asked me what was wrong?

      Was I depressed? Was I upset because a
      I was in the hospital? Was it the MRSA?

      If I could have, I would have punched her out!

      Comment by Phylis Feiner Johnson — January 12, 2014 @ 10:05 PM

    • yes the young lady who went into the hospital for the Tonsillectomy , is still alive , had it in the news few weeks ago , some movement is going on ..the mom wants to transfer her daughter to another hospital ..

      Comment by cathy — August 1, 2014 @ 3:57 AM

      • You know what Cathy,,, the Doctors who INFLICTED deadly malicious ordeal to the young Lady & endless grief to her family, should be arrested for ATTEMPT MURDER & face criminal justice, while the Hospitals LICENSE should be immidiatley REVOCKED to stop from INFLICTING more malicious deadly crimes on UNSUSPECTING PATIENTS.
        It’s long over due for the so-called government & “elected authorities” to PROTECT & SERVE the public they claim to represent.

        Comment by Gerrie — August 1, 2014 @ 5:11 AM

  4. I wouldn’t have believed this before I started having seizures, people do sometimes act as though I have a mental illness?!

    Comment by mickcgorman — January 12, 2014 @ 4:33 PM

  5. The reactions of my brother and two sisters when I finally got up the guts to tell them about my epilepsy: my brother the cop referred to it as a mental health issue, one sister sent me a note to never contact her or “her family” again, and the other sister is compassionate though she also seems to assume it is a mental health issue.

    Comment by Laura M. — January 12, 2014 @ 4:57 PM

    • When I was first diagnosed with epilepsy, my parents didn’t know what to do with me.

      They treated me like I was a pariah.

      (One of my step-parents was a surgeon and one was a psychologist.)

      Epilepsy was my dirty little secret.

      Like or not.

      Comment by Phylis Feiner Johnson — January 12, 2014 @ 10:35 PM

  6. As for medical professionals, in my experience they are as uneducated as the general public and just as willing to believe myths that terrify them. Nurses in the hospital during my recent hysterectomy reacted to news of my epilepsy in the same way I think they would have done so if I had told them I am a zombie. They did not know the current terms for the different types of epilepsy. They assumed that if I had a seizure while on their watch it would be a full blown “gran mal” and acted like I didn’t know my own epilepsy when I tried to explain what my seizures are actually like. I actually had some confusion and cognitive difficulties (diagnosed as epilepsy in 2004) while in the hospital but two nurses treated me like I was being trouble, raised their voices to me and asked me rude questions. I was alone in the hospital and though I felt I was in basically good hands I was scared of what would happen if I had a tonic-clonic seizure.

    Comment by Laura M. — January 12, 2014 @ 5:11 PM

    • Yup, Laura, I’ve been there. (See #3.) And it’s not a pretty place to be.

      As my doctor says: “Hospitals are places for procedures, not care.”

      The janitor probably would have known better what to do with you.

      It’s scary that we actually depend upon these people.

      And sad that we have to research and teach overselves. Become our own advocates, otherwise…

      At least we have each other.

      Comment by Phylis Feiner Johnson — January 13, 2014 @ 9:47 AM

  7. Five years of torment, three broken ribs, failure to accommodate and wrongful termination (retaliation)… that’s what my employer did to me (a public health department in Oregon) after I disclosed my epilepsy. It cost them several hundred thousand dollars to settle out of court. There was no justice…the damage was done, and money doesn’t change anything. I pray for the strength to forgiver.

    If this is happening to you, sue them and move on. But I guarantee it will not be easy.

    Comment by Tom — January 12, 2014 @ 9:54 PM

    • A public health department. That’s priceless. (Forgive the sarcasm.)

      What’s happened to humanity? Where was the EEOC?

      As you no doubt know, (but for those who don’t) Under the Americans with Disabilities Act (ADA), Employers are also required to make reasonable accommodation for a disability.

      The ADA prohibits discrimination in the workplace based on a person’s disability if the person is capable of performing the essential duties of the job.

      Reassignment may be necessary where an employee with epilepsy can no longer perform his job, with or without reasonable accommodation, unless the employer can show that it would be an undue hardship.

      The new position should be equal in pay and status to the employee’s original position, or as close as possible if no equivalent position is available.

      The new position does not have to be a promotion, although the employee should have the right to compete for promotions just like other employees.

      If you feel that you have been fired or demoted because of your epilepsy (and your company’s Human Resources Department is not able to help), think about seeing a lawyer.

      The ADA applies to all employers, employment agencies, labor organizations, and joint labor-management committees in which at least 15 employees work for each working day in each of 20 or more calendar weeks.

      Title I of the ADA provides that people with disabilities cannot be excluded from employment unless they are unable to perform the essential requirements of the job.

      An employer may not discriminate in:
      Recruitment, advertising, and job application procedures…

      Hiring, upgrading, promotion, demotion, tenure, transfer, layoff, termination, return from layoff, and rehiring…

      Rates of pay or other compensation and changes in compensation…

      Job assignment, job classification, position descriptions, lines of progression, structures and seniority lists…
      Leaves of absence, sick leave, or other leave…

      Fringe benefits, whether or not administered by the employer…

      But obviously Gerri, you didn’t get those considerations.

      Why?

      Yet you hung in there with persistence and courage.

      But, as you say, money can’t replace the damage, or compensate for what’s been so cruelly done.

      I admire you for your open mind and your willingness to forgive them.

      Comment by Phylis Feiner Johnson — January 13, 2014 @ 10:10 AM

      • Oh pee, phylis, all of us have some kind of horror . And, I have taken to calling the people/women who arrive when I push the call button, Nurslings. They do not wear little white uniforms as in the past. I wish those uniforms would make a comback, maybe in various colors of pink, blue, and lavendar: my favorite passion. I can see why they took to not wearing white. All the blood, bodily functions,etc. I only found out why I was having runny poop when a nurse, who had not ever put her hands on me said, gee, I think you have c. something something. We got rid of it when I gor home. I can’t think of a worse place to wash one’s hands than in the basin in the “semi-privsate” room.

        Comment by meesher — February 17, 2014 @ 9:07 PM

  8. And I thought I was the ONLY one TORMENTED in the hospitals, handcuffed to ER hospital bed for a week, until my good friend who knows & witnessed my seizures dozen times, STOOD UP TO ER DOCTOR & insisted the maltreament immidiately stop before taking the case over & reporting to higher agencies.
    Thanks to my friend’s brave challenge, I get to let go immidiately from “torment chamber & to Convalscent hospital” & allowed to walk-out FREE on my own choice.
    Never did I imagined my seizures could be taken for crimes, requiring “handcuffed to bed”, all in the name of medical treatment.
    Phyllis, Thanks for this timely article, NOW, I’ve come to learn my ordeal is just the tip of the iceburg.
    It’s informative & enlightening to know this nightmare is not lonely crusade for mercy.
    As surviving epilepsy is not hard enough, surviving “medical establishments” has become another nightmare to live with.
    LORD HAVE MERCY !!!

    Comment by Gerrie — January 13, 2014 @ 1:05 AM

    • Gerri, yours is a story of torture that unfortunately many a blind eye has turned away from.

      With justice a population of deaf naysayers.

      It seems your advocate friend came just in the nick of time. (Although, sooner would have been better.)

      But why do we have to go through this?

      Isn’t epilepsy, in its many forms, bad enough?

      Does another human being deserve to be tortured? (Perhaps we should ask our Federal Goverment about that.)

      And, if your friend would have reported your situation to the authorites, what would have been done?

      I’d like to say “something”, but it could be “nothing”.

      So much for faith in the system.

      What matters is that you did get out.

      But at what price? Scars to remind you of your torments.

      Comment by Phylis Feiner Johnson — January 13, 2014 @ 10:22 AM

      • And to think, the same hospital that was going to call security on me in the emergency room is the hospital that I now operate a support group out of. who’d a thunk?
        And to think that it takes us to educate our medical institutions.
        However…when I went to NYU Medical Center in New York City I was in their comprehensive Epilepsy Center and they were amazing!

        Comment by charlie — January 13, 2014 @ 11:44 AM

      • God Phylis,
        Never did in my wildest dreams did I expected “medical” establishment would turn into my torture & torment institution, when the least I expected it.
        It has been two monthes already, the physical & mental pain still hurts deep to the bones.
        Yes Phylis, After this experience, my confidence & trust to hospital industry has been shaken so bad, I wish no one ever calls Ambulance when I’m knocked out with seizure, any where in town.
        YES INDEED, My friend coming in time, witnessing the torment & approaching FACE TO FACE with the ER Doctor & insisting he knows & wittnessed my seizure dozen times before & the TORMENT MUST IMMIDIATELY STOP maid major difference in rescuing me from torture.
        As for the rest of the crowds & the medical establishment, they all seem to think I DESERV THE TORMENT & just walk by like this torture is part of EVERYDAY normal operations in the system.
        SO SHOCKING TO WITNESS, those who came & claim to “rescue me” are just part of my torment club.

        While my friend’s “threates” to report to higher agencies may NEVER have made a dent to the already entrenched system, his INTERVENTION made a whole lot difference, in convincing the ER Doctor to let me go FREE.
        I got a whole lot of respect & appriciation for my friend’s courage to intervine & save my life from the medical establishment’s torture & torment, in the name of “rescue”.

        This experience made me hope & pray to NEVER seek hospitals, whenever my seizures strike.

        I would rather survive my seizures on my own, than having to be tormented & tortured for my seizures, by the very establishments claiming to rescue me from my seizures.

        Comment by Gerrie — January 14, 2014 @ 2:57 AM

  9. A bit of a contradiction, wouldn’t you say?

    Why were they going to call security on you? Were you a bad boy? ;-)

    Comment by Phylis Feiner Johnson — January 13, 2014 @ 3:09 PM

    • No they didn’t call security (though there was an officer in the building). They restrained me (breaking my ribs in the process), then they called for an ambulance. A week later they suspended me for being violent and attacking the coworker who restrained me. My attorneys said “you can’t make this stuff up.” There are so many details. Thank God it’s in the past now.

      Comment by Tom Waltz — January 13, 2014 @ 10:00 PM

      • The past does not heal the present.

        The onerous threats were abusive and most likely meant to “scare” you into being a “good boy” while they broke three of your ribs.

        To say this is unconscionable is an understatement.

        I’m both happy and relieved you got good legal help. But what’s done is done. Broken ribs and all.

        Comment by Phylis Feiner Johnson — January 14, 2014 @ 11:39 AM

  10. Good to see some exposure on the exploitation of unwitting subjects who suffer epilepsy. May I further disclose hidden criminal activity here in Toronto Ontario Canada. Medical records and X-rays at http://www.thewhyfiles.net/mkultra4.htm#update discloses unauthorized covert lobotomy and brain implant experimentation (Dec. 9,1969 & Jan. 27,1972, at 14 & 16 years of age) without informed consent, nor parental knowledge, while under the guise of treating epilepsy. (ie-”scar tissue removal”) This information not only correlates with Manchurian Candidate developmental research, according to The Mind Stealeras by Samuel Chavkin, and The Mind Manipulators by Alan Scheflin, it also correlates with the CIA – MK-ULTRA project of psychosurgical and brain implant research upon unwitting subjects. Those subjects being myself, and other children who suffer epilepsy at the Toronto Hospital for Sick Children. I recall neurosurgical wards 5-G and 6-G, full of children with various cranium incisions and casts on their heads, screaming verbal profanities at DR. Harold Joseph Hoffman, for what he had done to their brains. I still suffer PTSD, when screaming verbal profanities during a local cranium incision, when I could not tolerate the sound of my skull cracking apart. It should be recognized as most cruel, criminal, sadistic,evil and extremely inhumane as to impose lobotomy upon a child who suffers epilepsy, when the historical research of lobotomy upon psychiatric patients demonstrate adverse effects of “seizures and cerebral hemmorrahaging”. It has been most difficult as to disclose this crime when subjected to major damage control, obstruction, and concealment by the authorities such as the Ontario College of Physicians and Surgeons, and our police, who state they cannot protect he public regarding this assault, when there is no co-operation with the government. Dr. Harold Hoffman is noted for having 15,741 children under his care between 1964-1998. It would be fair to suggest that anywhere between 10% to 1/3, have been unwitting subjects of unauthorized brain surgical research. (1500-5000 children) More disturbing, every year across Canada, 2400-4600 people die, as a result of status epilepticus, the number one adverse effect of temporal lobectomy. I know of Ms. Daphne Lowinski, another patient of Dr. Hoffman, who back in 1990-1991, at ten years of age, was subjected to unauthorized right temporal lobectomy, after her parents were only informed of scar tissue removal. Ever since, Daphne is disabled with further uncontrolled seizure disorder. Whats going on at Sick Kids is no indifferent than the child abuse in Quebec, where the Duplesiss orphans were falsely labeled and exploited for unauthorized CIA MK-ULTRA LSD and lobotomy research. The only way I could survive this brain mutilation, was by spending 20 years before the courts as to recognize marijuana for medical necessity, and having our marijuana laws declared unconstitutional Dec. 10,1997, by Justice Patrick Sheppard, which was further upheld by the Ontario Court of Appeal July 31,2000. Would appreciate to locate other unwitting subjects of Hoffman and Sick Kids. This injustice needs to be addressed. Terry Parker Jr.
    HSC #414895
    http://www.thewhyfiles.net/mkultra4.htm#update http://www.ontariocourts.on.ca/decisions/2000/july/parker.htm

    Comment by Terry Parker Jr. — January 13, 2014 @ 7:14 PM

    • There are hideous stories like this. I will quote another member’s account:

      Burning Memories

      “From what I can remember, I was around the age of 7 years old.

      My mother, trying to understand my problem, took me from one doctor for 6 months, trying to get a diagnosis.

      I understand now that my mother didn’t know what to do, so after getting advice from those doctors who had no professional knowledge of my condition, the only thing she knew to do was commit me to a State Hospital in Traverse City Michigan, formerly known as North Michigan Asylum.

      Back then, few doctors had knowledge about epilepsy or any neurological disorders for that matter. Neurology was fairly new in the medical field.

      So most everyone diagnosed with Epilepsy was sent to places like this where we were treated like we had leprosy.

      I was there from approximately 1963-1968, between the ages of 7 to 11. I remember being taken to the hospital by my mother and step father, but I really don’t remember how I felt after I was left there.

      I just felt a chill setting in when we first turned onto the drive off the highway.

      As I got older, I came to realize some of the things I didn’t understand as a kid while I was in Traverse City State Hospital.

      These “hospitals” were never intended for curing, healing or, for that matter, even improving anyone’s illnesses.

      We were locked up and used as a guinea pigs to try medications in the “testing stage.”

      Believe me, they didn’t hesitate when it came to try untested medication. There was times I was pumped so full of meds I couldn’t walk straight, and it usually just made my seizures worse.

      I was on Milorill and Thorazine, which did nothing to control my seizures. Thorazine was used for some patients as a punishment, just like Haldol which was outlawed for sometime here in the states, or at least in California, because it was considered a deadly drug.

      Now I hear it’s back in use. But I remember everyone who took it turned into a zombie

      If I had a seizure, they would give more med’s and lock me in the seclusion room.

      Sometimes if I had a seizure in the seclusion room, a nurse or attendant would come in and slap me around, some used a belt on me. I still have scares from that, even after 43 years.

      My privileges were always close the bottom level because I tried to escape so many times.

      I guess I was considered a “flight risk” so I wasn’t allowed to got out much, because they never knew when I’d take off. For that matter, I didn’t either. I just turned and walked away.

      But it seemed like they almost always had someone waiting for me either before or shortly after I made it off the grounds.

      I ran away a total of 3 times, but I can remember the 3rd time best…

      We were all talking and then out of the blue and without a word, I turned around and walked away.

      It seem that there was hardly anyone else on the grounds, so I started walking back toward the farms.

      By the time I got to the edge of the field, I was face down on the ground with 2 attendants standing beside me.

      One was holding me down with his foot.

      I was brought back in restraints and thrown into a cold, empty, seclusion room. (I can never forget the sound of the big steal door slamming.)

      About an hour later the fat nurse came in and made me strip off my clothes. Then she grabbed my arm, spun me around and threw me against the wall.

      She yelled at me to stand still while she stuck a needle in my ass, shot me full of Thorazine (the “punishment” drug) and then left.

      Minutes later I was off in nowhere land. (Now I know why some of the boys walked around like zombies.)

      A few days later I had a seizure. After that, some attendants came in and started kicking me around and beating on me.

      I don’t think they ever told my mother about my escape attempts.

      One time I was sleeping with my arm hanging over the side of the bed and a rat bit my thumb.

      The night nurse gave me a shot and that was it. I still have the teeth marks on my thumb.

      Back then, there may have been some Patients’ Rights and laws, but enforcement was as good as obsolete. Mainly because, what happened at Traverse City State Hospital, stayed there.

      We were informed this more than once, and most of us were told to keep our mouths shut.

      No one in my family knows 90% of what happened there.

      There were 3 porches there that were referred to by staff and nurses as “The Balcony.”

      Standing behind that heavy gauge steal mesh was like being locked up in a zoo.

      I remember kids being locked out on the balcony in the winter time for not doing something right.

      One winter, there was a young boy locked out there for spitting out his late night medication. He was left out in the cold all night. In the morning when he was discovered, he had pneumonia and could hardly breath.

      After that, he disappeared and his name was never brought up again.

      I also remember hearing about deaths that happened late at night but they were hushed up, the word never got out.

      Most of this is behind me so please, don’t think that I’m looking for sympathy because I’m not.

      I guess you could say that I’m still soul searching.

      I’d have a guilty conscience if I felt sorry for myself, because there are millions of people worse off than me. I live life the way I can live it and try to make the best of it.”

      There’s more to his story — about boys going into this room, given experimental treatments and never leaving again.

      They were human guinea pigs and many of them died in the name of research. (Or maybe punishment.)

      Michigan State hospital has been closed down, but there’s a group of “alumni” who made it through and connect to share their stories and even photos of their incarceration.

      I can’t find the website, but you get the general idea.

      There’s also an article on Marijuana here. I doubt it will tell you anything new, but it might tell you about some efforts to make medical marijuana “legal” in the US.

      Medical Marijuana — It’s Here To Stay

      http://epilepsytalk.com/2013/12/01/medical-marijuana-its-here-to-stay/

      Comment by Phylis Feiner Johnson — January 14, 2014 @ 1:17 PM

      • OMG! Mike’s dead. He died last October at the age of 60.

        He had just gotten married to the love of his life (his words) and when he got home, his house was robbed, empty.

        He said he’d be back on Epilepsy Talk and/or email me as soon as he got a computer.

        I wondered why I didn’t hear from him. We were close. I even asked him to be a moderator.

        I thought maybe that’s why I didn’t hear from him. Avoiding the question/answer? :-(

        Excuse me while I have a complete meltdown.

        Comment by Phylis Feiner Johnson — January 14, 2014 @ 1:38 PM

      • Please accept my condolences.

        Comment by Terry Parker Jr. — January 14, 2014 @ 9:07 PM

      • Dear Phylis, I hear ya, back in 1979, I was a idiot for trusting neurologists Dr. Peter Carlen and Maryanne Lee, when being a volunteer during a study entitled “THE EFFECTS OF MARIJUANA ON SEIZURE ACTIVITY IN MAN”. It was my lawyer Marlys Edwardh who set this study up, only to be subjected to a non-therapeutic cannabinoid study which only administered the psychoactive property tetrahydrocannabinol delta nine (THC-9) while under the guise of consisting of all of the natural cannabinoids such as cannabidiol (CBD) which is well recognized for it’s anti-convulsant effectiveness. Most repugnant that our medical and legal profession profit from the suffering and exploitation of those who suffer epilepsy. Interesting, how this psychosurgical research at HSC took place after the US Dept of Justice, Law Enforcement Assistance Administration (LEAA) put out six billion dollars towards “psychosurgical research”, in 1968. More mezmerizing, is how this exploitation of epileptic subjects is acceptable with the Epilepsy Associations. Is’nt life a bitch, if you suffer epilepsy.

        Comment by Terry Parker Jr. — January 14, 2014 @ 9:34 PM

  11. Thanks God, We got this website to share our painful experience, for the establishments has proven to be another ordeal to overcome.

    Comment by Gerrie — January 14, 2014 @ 3:20 AM

  12. Have any of you, who are having so many seizures, asked your doctor for another medication for you? Have you tried Sleepy Time tea to relax your brain? It really helps me.

    I empathize with all of you. I had a major problem with a hospital. Rather than causing me more problems they sent me to a hospital to die. It was a hospital with a bad reputation for medical care. They thought if they could save my life, it would build up the hospital. As you all know, I Am Still Here.

    I had been to that hospital several times before and they knew my terrible seizures. Now, I am having only absence seizures.

    Now, I have worse neurological problems as Phylis knows. The Sleepy Time tea works for Parkinson’s Disease. It calms down my nerves.

    I hope you look up Revelation 21:3,4. It gives me the knowledge that my illnesses will go away someday soon. Go to http://www.jw.org and start a Bible Study for free at your home and convenience. We accept everyone, including people with epilepsy.

    Comment by Ruth — January 14, 2014 @ 8:55 AM

  13. Being treated like a leper is a horrible feeling. I am not making excuses for these doctors but, when it comes to the medicine, remember, until the right kind and the right dose is found, we are all lab rats. That being said, I have always gotten the impression that drs. are afraid of epileptic patients.

    Comment by Debby Heinz — January 14, 2014 @ 8:59 AM

    • The doctors are afraid of us because they don’t know what to do.

      Maybe if they try enough meds, something will work. (There sure are enough out there!!!)

      But it’s always a crap shoot.

      Believe me, I kissed a lot of frogs before I found my “magical medical mix.”

      And I realize I am one of the lucky few, both with my meds and my neuro!

      Comment by Phylis Feiner Johnson — January 14, 2014 @ 1:49 PM

      • Phylis,
        Understandabley, the Doctors & emergency rescue crew may NOT always know the answers to our seizures, but RESORTING to physical & mental torture, torment & abuse, in the name of “medical treatment” makes the whole ordeal far more painful, than trying various drugs to get the right chemistry to stop the seizures.

        Having survived to as many seizures & tried as many medications I could care to count, the “medical establishment” physical toruture in the name of “rescue”, has become too painful to survive & overcome.
        I would rather have my seizures on my own little corner than having to be tormented for my seizures by the very medical establishment coming to “rescue me” from my seizures.

        Comment by Gerrie — January 14, 2014 @ 9:17 PM

  14. Gerrie,

    I love “I would rather have my seizures on my own little corner than having to be tormented for my seizures by the very medical establishment coming to “rescue me” from my seizures.”

    If it is any solace, the EFA has an aggresive campaign to educate First Resonders, Educators, Nurses, Fire Fighters and Police Personnel.

    But there are far more of them than there are of us.

    A close friend of mine actually had her partner stand in front of the driveway to prevent EMT’s from coming in.

    I had a seizure at the orthopedist and he called in the marines. (Not on my turf, baby!)

    It must have been a slow day at the hospital (just a mile away) because six of them arrived with oxygen tanks and all kinds of mysterious gear.

    But by that time, I was sitting in the chair and Arthur warded them off.

    Then he gave the doc an earful. In front of the entire waiting room.

    And he commanded the orthopedist to call my neurologist.

    It was priceless!

    Comment by Phylis Feiner Johnson — January 14, 2014 @ 9:41 PM

  15. As I read through the horror stories here, I am astonished that we seem to be back in the Dark Ages! Hippocrates knew that epilepsy was caused by some sort of malfunction in the brain, but people today (even M.D.’s) in some areas seem to know nothing.

    People with autism often have cards printed out which carry a brief description of autism, and what to expect (namely, don’t expect them to answer all your questions reliably, because they have difficulty processing language). “Don’t talk louder, my hearing is extremely sensitive, and I will still have difficulty processing language.”

    I suggest that people with epilepsy do the same thing: print up some cards with a brief description of epilepsy. Keep them in your wallet and be ready to hand them out to the ignorant. Something like: “It’s caused by excessive, uncontrolled electrical activity in the brain.” And include a list of some (only some) of the famous people who functioned at a very high level, between their epileptic seizures.

    It’s a start.

    Comment by Martha — January 15, 2014 @ 10:14 AM

    • P.S. — and don’t forget to add that ANYBODY can have a seizure, given the right conditions.

      Comment by Martha — January 15, 2014 @ 10:16 AM

    • Here, for your enjoyment, is a (partial) list of the “Epilepsy Hall of Fame”.

      http://epilepsytalk.com/2009/09/13/epilepsy-hall-of-fame/

      But you have to ask yourself, how many people know history? How many people READ?

      The EFA has wallet sized First Aid cards. The only problem is Medics are prohibited to go into your handbag or look in your wallet, if you’re unconscious.

      One thing that’s truly helpful is a necklace from the Medical Alert Foundation. http://www.medicalert.org/

      Although it’s not the most stunning jewelry in the world — you COULD keep the necklace kind of hidden in your blouse — they have saved many lives. (See comments below.)

      Medics recognize it and you can change your information, when needed. (Like if your meds change.)

      They also know whom to contact, especially if you end up in the hospital.

      The price for membership is $30 a year.

      And if you have an “Advance Directive,” they will include it with your information — FREE.

      Another life-saving option is the Medical Text ID https://www.hopepaige.com/text-id.aspx a powerful Medical ID in case of emergency.

      It assigns you a unique personal identification number (PIN) that you can wear on a key chain, or snap-on device that can be worn on clothing.

      The PIN is linked to an online account that you can set up on their secure iB Web site. Your online account has information about who you are, what medications and allergies you have and up to ten emergency contacts.

      I know it sounds a little extreme, Martha, but it works.

      Comment by Phylis Feiner Johnson — January 15, 2014 @ 12:19 PM

      • Thanks! Very useful information. I will follow up.

        Comment by Martha — January 16, 2014 @ 12:02 PM

  16. Even with the best services, the most compassionate
    care, the most well-thought out decisions, the most superior, finest, highest quality, topnotch, unrivaled, unsurpassed, most helpful and with the best intentions … what strikes me is…
    even competent, experienced, expert, proficient, efficient, responsible, trustworthy, skillful, intelligent, up to date on all medications for all different kinds of patients …

    Doctors are practicing medicine. Practicing.Practicing.

    Comment by Wilma Cogliantry — March 11, 2014 @ 6:35 AM

    • Wilma,
      “Practing medicine” should turn into “practing” torment & torture in the name of medical treatment.

      While Doctors may “practice” medicine, laws, regulations, standards & legal obligations had to be in place, protecting the helpless patients who entrusted their well-being to the very Doctors, Hospitals & medical industry who swore to “DO NO HARM”.

      Without established laws set to protect the patients & holding Doctots/Hospitals ACCOUNTABLE for “practicing medicine”, patients are left at the mercy of “Health-Industry”, set to PROFIT from the patient’s misfortunes.

      Besides dispensing license to “practice” medicine, the government needs to ENFORCE LAWS protecting patients.

      Comment by Gerrie — March 11, 2014 @ 9:00 AM

      • Correction,
        Practicing medicine should NOT turn into “practing” torture & torment, in the name of medical treatment.

        Comment by Gerrie — March 11, 2014 @ 9:07 AM

      • I am sorry, but I think that is a grossly unfair statement. First off I think it is too generalized. I have been an epileptic for over 40 years and I was a guinea pig for many years with different medicines. I went through hell. But that doesn’t mean that the doctors were torturing me. They were working at trying to control my seizures. People who expect to be coddled because they have seizures and treated with kit gloves while the doctors work hard to help should wake up and put their big person pants on.

        Comment by Debby Heinz — March 11, 2014 @ 10:24 AM

  17. And then there are those (mostly techs) who don’t even have a license!

    “Doctors not licensed to practice medicine in California are allowed to practice medicine in California as long they restrict their decisions to injured workers who claim on-the-job injuries.

    This convenient niche is favored by insurance companies and acquiescent utilization review companies retained by the insurance companies. They argue that utilization review doctors aren’t practicing medicine.”

    http://www.sfgate.com/opinion/article/How-to-practice-medicine-without-a-license-3197673.php

    Comforting, eh? :-(

    Comment by Phylis Feiner Johnson — March 11, 2014 @ 10:30 AM

    • Debby,
      Have your Doctors “HANDCUFFED” you to hospital bed for a week in the name of “practicing medicine”, because you are having COMPLUSIVE GRAND MAL SEIZURES ???

      Haven’t you ever heard of “medical malpractice”?

      Where do you draws the line, between “medical treatment” & torture/torement in the name of practicing medicine?

      What makes “licenced” Doctors any different than Voodoo Doctors, licenced to “practice” medicine?

      Debby, Great to know, you haven’t had to go through, what many of us has been through.

      Comment by Gerrie — March 11, 2014 @ 7:38 PM

      • Thanks Gerrie. It concerns me to read comments that suggest neurologists are not capable of making bad decisions or neglecting their professional obligation to treat their patients with the respect and care we deserve…we’re the ones paying them. I too had an experience with a doc (at a “comprehensive epilepsy center”) that caused my separation from them. When I confronted them, she insisted I was in the wrong. I later discovered from another neurologist that it was the doc who failed me. I was fortunate to not have been seriously injured as a result of the seizures I experienced.

        Comment by Tom Waltz — March 13, 2014 @ 5:28 PM

      • YES TOM,,, We didn’t ask to have seizures nor did we ask to be treated like criminals, when are knocked out with seizures.
        Thanks to my good friend visiting me & standing up to emergency room hospital Doctor, FACE TO FACEE. I got let go from being handicuffed to hospital bed.
        All these time, I was concerned with controlling my seizures & worried about the “NEXT SEIZURE”.
        Now, I’m more concerned & worried about the abuse, maltreatment, torture & torement from the “HOSPITAL” industry more than from my seizures, I started carrying “DO NOT CALL AMBULANCE” card on the cover of my wallet.
        Let’s hope, The good-meaning people will heed my plight posted on my wallet, before calling Ambulance & face another ER HOSPITAL ordeal.
        Begging to let go from ER Hospital should NOT justify for criminal maltreatment, in the name of “practicing medicine”.
        The AUTHORITIES dispensing “license for health industry”, need to enforce the very laws they crafted to ensure “public safety”.
        Anythingless is gambling with the very lives, the “authorities” claim to represent.

        Comment by Gerrie — March 13, 2014 @ 10:01 PM

  18. “The report also outlined “abusive” use of medication and restraints. A third of patients sleep attached to their beds, some unable to turn around, forced to sleep on their backs all night.”

    http://www.oikos.org/psychabuse.htm

    Comment by Phylis Feiner Johnson — March 11, 2014 @ 8:00 PM

    • Phyllis,
      Never in my wildest dreams & nightmares did I ever imagined, I will be handicuffed to emergency room hospital bed, when I needed medical attention the most.

      Thanks to epilepsy, I’ve learned hard lessons from the “hospital industry”, which may never suite for criminal industry.

      Totally repugnant.
      There had to be a way to STOP these legitimate-torture disguised for medical treatment.

      Comment by Gerrie — March 13, 2014 @ 10:28 PM

  19. Yes, I agree. And yes, it IS difficult to see you shackled to a hospital bed.

    But, as I said, the legal authorities blame the abuse on the patient. It must be OUR fault because we’re “out of control”.

    It doesn’t matter if there are witnesses, videos, testimonies and all kinds of well-documented proof of abuse.

    Most people tend to turn their heads and pretend nothing happened.

    And so the blame goes to the victim. (Are they insinuating that we’re all nuts?)

    Comment by Phylis Feiner Johnson — March 14, 2014 @ 10:53 AM

    • Phyllis,
      It’s time to FIGHT BACK in court of law, collecting every Epileptic case of medical maltreatment & malpractice.
      Having seizures is NOT our falt nor do we ask for torture & torement in the name of medical treatment.

      SOME BODY GOT TO DRAW THE LINE SOME WHERE, Enough is enough.

      We don’t have to be treated like CRIMINALS for being knocked out with seizures.

      Comment by Gerrie — March 14, 2014 @ 12:03 PM

  20. Not to sound lame, but I think that’s what education and public awareness are all about.

    The Epilepsy Foundation is seeking to educate everyone from EMT’s, firefighters, police, etc…what a seizure is, what it looks like and what they can do.

    Will it work? Probably not in our lifetimes. :-(

    Comment by Phylis Feiner Johnson — March 14, 2014 @ 1:29 PM

    • What ever happened to House Resolution 398?

      Comment by Tom Waltz — March 15, 2014 @ 12:28 PM

      • Tom,
        Laws & education is only good for law abiding citizens willing to learn & do the right thing.
        Enforcing the law, holding the CRIMINAL INSTITUTIONS tormenting patients accountable for their crimes & STOPPING the crimes disguised for medical treatment is the ONLY protection & assurance the public could pray for.

        Comment by Gerrie — March 15, 2014 @ 6:36 PM

  21. From what I can deduce the Latest Action: 10/30/2013 Referred to the House Committee on Oversight and Government Reform.

    Do I have the right resolution or am I way off target?

    If so, could you please send me a link? Or tell me how stupid I am?

    Comment by Phylis Feiner Johnson — March 15, 2014 @ 3:36 PM

  22. Good God! I live in New Zealand and one of our most famous writers, Janet Frame, was put in a mental hospital and almost given a lobotomy because she had epilepsy but that was in the 1920s. She only died a few years ago but she wrote lots of amazing books – fictions and autobiography. I thought the world had moved on since then. Obviously not if this sort of thing is still happening. We might be a bit behind the times with availability of funded epilepsy drugs but, as a nation, we are great at acceptance, awareness and educations around disorders like epilepsy. Our children are taught that epilepsy is a disorder like many others and we accept and celebrate people for their differences, no matter what they are. I feel very sad reading the above statement and suddenly very glad that I live where I do. I have had epilepsy all my life (I am 45) and I have been well looked after. I feel very grateful for that!

    Comment by Brigitte Diessl — August 1, 2014 @ 5:28 AM

    • Brigitte,
      Thank you for sharing your UPLIFTING & INSPIRING story.
      In this age of advanced TECHNOLOGY & SCIENCE, luck of education or information is NOT the real reason behind the MEDICAL MALIPRACTICE.

      Outright criminal negligence & deliberate abuse of helpless patients is the main culprit of of TRILLION DOLLAR HEALTH INDUSTRY committed to make more money than curing medical disorders.
      Health industry lucking LEGAL OVERSIGHT, higher moral standard, compassionate concern, community bonding & professional devotion to cure for medical disorders & difficulty is NOT different thancriminal institution, gambling with human lives for profit.

      Comment by Gerrie — August 1, 2014 @ 6:17 AM

      • Gerrie, my doctor wisely said: “Hospitals are for procedures, not for caring for you and making you well.”

        Maybe.

        Comment by Phylis Feiner Johnson — August 1, 2014 @ 7:52 AM

  23. Brigette, You are blessed and lucky. But as you say, it isn’t 1920 any more! (Although here, sometimes you wouldn’t know it!)

    You might enjoy “The Epilepsy Hall of Fame”, an interesting role call of famous folks with epilepsy through the ages.

    http://epilepsytalk.com/2009/09/13/epilepsy-hall-of-fame/

    Comment by Phylis Feiner Johnson — August 1, 2014 @ 6:07 AM


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    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I've also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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