Epilepsy Talk

Who’s at Fault?  | February 21, 2022

Instead of humane and compassionate treatment, doctors, hospitals and the legal system 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, stating 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 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”? A “hospital”? Or “legal rights”?

And what does it take for someone with epilepsy to be treated with care like a real, bona fide patient?

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Resources:

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

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

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

https://www.statnews.com/2018/10/25/epilepsy-discrimination-ada-undue-burden/

https://internationalepilepsyday.org/a-story-about-a-young-woman-who-has-a-secret/

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14 Comments »

  1. Please change my email address to: maxpuckerfactor@gmail.com

    Best Regards,

    Manley

    Manley C. Butler, Jr. PO Box 8120 Roanoke, VA 24014

    Cell: 540-314-0911

    Like

    Comment by Manley Butler (BPS) — February 21, 2022 @ 2:55 PM

    Reply

    • Hi Manley, you have to change it in your registration. Just “unfollow,” then hit “follow” with the correct new address in there. Thanks very much.

      Like

      Comment by Phylis Feiner Johnson — February 21, 2022 @ 2:59 PM

      Reply

  2. …sad, yet so TRUE. Still remember (less than a year ago),
    being told by a “Neuro specialist’;
    what you’re experiencing is make believe.
    Anxiety pills, melatonin, group therapy, etc will fix you.
    Oh Really? Thank you God I have pictures of the bruises, blood, etc

    Liked by 1 person

    Comment by Robert — February 21, 2022 @ 3:11 PM

    Reply

    • I relate Robert. I have the discussion again and again with my doctor every time I want to discuss the impact having epilepsy has on my “quality of life” (or QOL). He tells me to go to therapy, adds another med for my sleep or depression (which inevitably impacts my QOL negatively). He and I are clear now that he is there to only address my health relating to whether I have a clinical seizure or not…not “the other stuff”, as he puts it. The clinical impact of epilepsy is a small part of how my life is affected negatively by epilepsy. The bigger part is given such little attention, sometimes even discounted, by my doctors…increasing, not treating, the impact of epilepsy on my QOL. It’s so deflating.

      Liked by 1 person

      Comment by Eric Roybal — February 21, 2022 @ 3:25 PM

      Reply

    • “I have pictures of the bruises, blood, etc”
      So did I that I showed to first responders on the way to the hospital and Emergency doctors who called my frequent Epileptic Seizures between 2011 and 2016 “Assault!”
      Did anything wrong happen?! Yeah, the day that my rent was paid in 2018, I took a “wasted hospital trip”( I still call it because I said out loud that I just needed sleep not to be in hospital!!) over night when I returned from there to my apartment, my lock was changed. The superintendent was again a no-show in her office or anywhere! Three teenagers hanging around her office tell me that ” if you want to get back into YOUR apartment, you better call the security or the peel police!!”
      I was panicking because I heard my Cat meowing on the other side of my apartment door! I call a “wrong” number of a person who I met the day before. She came with security!
      Only thing was that I wasn’t allowed back into MY apartment unless I had someone with me!
      My name was on the lease!!
      It was my 2nd apartment that I was in!

      I went to the building office and spoke to the people who I would normally have spoken to and spoke once and it was gossip then the second time I was told, “it’s dangerous!”

      I already had been told that I was Sexually Assaulted because I live with Epilepsy in the city that I grew up in. Then Raped in another city that their police won’t do anything about it!
      But his friends are getting back at me for having me arrested and I’ve been homeless and my Cat was ripped away from my hands as were my and his Cat care belongings!!

      I’m sick and tired of the name calling that some of the those names I have not heard since I was in middle school or earlier, French class.
      Or after 2018! I have never been accused of being “drunk or on drugs” and HAD to have a hell of a lot of blood tests at every hospital, because of the original “Mental Health” years before Covid-19.
      I’m talking about teenagers who are bored and partying and Pharm parties are the norm for them!
      They’re brought to the hospital and the rest is usually on the news media…
      That’s what I have seen while I have waited for a room with paramedics…

      I’ve been lucky enough to not have window from a Mental Health room fly on to me and the paramedics that brought me to the hospital!

      Point of me typing that was that if people don’t know what Epileptic Seizures are I’m suddenly “That person that threw a chair through the door shattering the window” making all the first responders & police on massive alert and flip out on the hospital emergency employees for what happened!!

      Those who destroyed my belongings and stole my son under IdentityThefts are loving their freedom still even though they are violent!

      They’re loving it with …

      My phone has even been Cyberbullied that I can’t even get the phone calls I’m expecting normally!!

      Like

      Comment by Tabitha — February 22, 2022 @ 2:12 AM

      Reply

      • I was in the hospital again for Epileptic Seizures yesterday. I couldn’t wake up, the paramedics weren’t too happy about that. “She’s not wanting to talk to me!” Said one who was a bully. I just bought a bottle of water to take my AEDS less than an hour before it happened.

        I keep wondering why I was locked out of my apartment and separated from my Cat, his self care and belongings and my self care and belongings to be out of my comfort zone away from animals, and sanity!!

        Why should I be abused when I was a survivor of violence?!
        Now retraumatized again and having more Epileptic Seizures that people are still making accusations that I’m drunk or stoned. Others that know that I live with Epilepsy are wondering why people are doing this ignorant blame shame on me.

        I was looking for books before too. Almost all the books that I have been looking for are still unavailable to order and are never in stock.
        I found that there are Diabetes books but maybe one or two books about Epilepsy. The book that I bought long ago was a charitable book written by a Neurologist in Australia donations to the Australian Epilepsy Foundation. The most expensive book was almost $200.00.
        Why, are there no books in bookstores about Epilepsy?!
        I found several books of something else I live with…
        But where I am I wasting my time. I was living on my own with a 🐈Cat(always) and friends were over. My mum came over to visit before her body well … 🐾 🕊🕊🍀.
        People that don’t know me have been harassing me and abusing my fur baby since I/we relocated to my/our second apartment reluctantly.

        There I heard so much that I never knew or should have heard before but they wouldn’t let us go!
        The words, “stop! Enough!” They ignored!

        They only heard themselves when they were stoned as they said out loud.. Hense the reason why they continually stole from my apartment!
        I was refused to go back in to my first apartment where most of my belongings were that I couldn’t move on the first try, nor did I want to!!
        I was to stay in my apartment that Is what I was told to do!
        There was no one that I could call to cancel lease!!!!!!!

        My friends knew where I lived! My family and friends knew where I lived.

        Whistlers bring bad luck and toxic waste!!!

        Like

        Comment by Tabitha — February 25, 2022 @ 12:10 AM

  3. Thank you for sharing!

    I have not experienced anything yet that has caused the police to be involved…emphasis on the word YET!

    I’m curious to read more about “In most states, having a seizure is technically illegal, and while prosecutions are not many, they do happen”. Do you have any links that have any information about this?

    Liked by 1 person

    Comment by Eric Roybal — February 21, 2022 @ 3:13 PM

    Reply

  4. Thanks to The Americans with Disabilities Act, this has been mitigated.

    Discrimination again epileptics in the workplace has been deemed illegal.

    Driving with epilepsy is at the discretion of the state motor vehicle laws and the attending doctor. Each state has its own rules.

    There are subtle and not so subtle discrimination incidents at play wherever you go. And many of us have stories that could raise the hair on your head.

    So, even though they may not be publicly documented, you can tell from the “private” stories that epilepsy abuse is still alive.

    Like

    Comment by Phylis Feiner Johnson — February 21, 2022 @ 3:32 PM

    Reply

  5. Yes, it is the children, especially with their parents being so unaware of what these drugs WILL DO, and the parents trust so much in their kids doctors no matter what, and the kids suffers for it all. I remember that all too well what was happening to me 55 years ago. After around 17 years old, I was finally given MY VOICE & THOUGHTS to been heard, and THEY DID hear it, as they stupidly said to me,, YOU should have mentioned this before,, & I’m like OH REALLY ? i asked HOW COULD I HAVE SAID ANYTHING WHEN I WAS NOT ALLOWED TO SAY 1 WORD IN THOSE VISITS ? See people it is all a MIND CONTROL GAME when kids are their patients, and they PARENTS TODAY better allow their kids to SPEAK OUT LOUD !!! THAT”S RIGHT,, because if they are like I was in the 60’s & 70’s they are getting OD’d on every drug thy are taking as I was in those days.It’s the PARENTS that must make sure that their kids ARE ALLOWED TO ASK THEIR DOCTOR THEIR FEARS & QUESTIONS, or else FEAR of everything as long as seizures are in A CHILD’S LIFE will always be a part of their life, but in the REAL WORLD if a neurologist does not have seizures, HE OR SHE will never know HOW to answer the REAL LIFE WITH SEIZURES questions, to a child or adult as my neurologist admits that to me at 61 years old today. So the PARENTS can NOT be the blame when they do not know what CAN or WILL happen to anyone when OD’s are used for more times than not to trying to stop seizures. But WHEN a person no matter the age says what they feel like from taking too many drugs,,SOMEBODY LISTEN to them, especially these neurologists who are to have the answers. QUIT & STOP practicing for once. None of us are mice or rats NO MORE.

    Liked by 1 person

    Comment by James D — February 21, 2022 @ 3:35 PM

    Reply

  6. I did not really “like” this. I have been very protective of Rose because of this sort of thing.

    Liked by 1 person

    Comment by Flower Roberts — February 21, 2022 @ 5:30 PM

    Reply

  7. Anyone who trusts the medical mafia is delusional. There is NO MONEY IN CURES, CURES ARE NOT A GOOD BUSINESS MODEL.

    Liked by 1 person

    Comment by Tom — February 21, 2022 @ 6:32 PM

    Reply

  8. Lucking independent oversight & advocacy agency empowered to seek justice for the victims of neurological disorders & medical malpractice, one wonders how many voiceless victims of Epilepsy has quietly perished in silence in the hands of rogue doctors employed under negligent institutions “established to care for the wellbeing of the helpless patients”?
    It’s just hard to imagine how these crimes could be taking place in a civilized world with a lot of tears to shed for animal cruelty but no concern for humanity.
    May God have mercy on human race.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — February 22, 2022 @ 4:44 AM

    Reply

  9. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — February 22, 2022 @ 10:50 AM

    Reply

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I 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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