Epilepsy Talk

A Neurologist Talks About His Own Epilepsy… | February 3, 2019

In this eye-opening article from the New York Times, a neurologist talks about his own journey with epilepsy: his perceptions, other people’s reactions (not good) and how he decided to become a neurologist.

A wonderful account of the doctor as patient and “must” reading for anyone who has epilepsy…

http://well.blogs.nytimes.com/2011/06/23/seeing-epilepsy-from-the-patients-point-of-view/?emc=eta1

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19 Comments »

  1. That doctor knows all what we can go through every day of our life. When he said that after a part of the brain is taken away, & you can not put it back, that should be a wake up call where also adding AED’s at a very young age to a child’s life, will affect ALL BRAIN GROWTH & DEVELOPMENT that will either never grow normally or take a life time to develop as drugs only promise a LIFE TIME of living with seizures forever. That’s how it’s been for me for over 58 years since 7 months old taking all the AED’s in my life & I can never say I have ever been seizure free, not when drugs are taken forever. SEIZURE FREE to me means NO SEIZURES, NO AED’S, & NO WORRY THAT SEIZURES WILL HAPPEN. But that is a no no way to think from BIG PHARMA, CDC, FDA, & AAN who all train neurologists everywhere.

    Liked by 1 person

    Comment by James Davis — February 3, 2019 @ 1:01 PM

  2. Good on him! I’m more impressed he was able to get into med school in the first place- back in those days I’m sure they could’ve made it very difficult for him.

    And I bet you he’s one of those rare neurologists that doesn’t play down AED side effects either- many people I’ve talked to over the years, we’ve all wanted to tell our neuro at some point to take these pills for a week and get back to us before saying we should be feeling like this/experiencing any side effects etc!

    Liked by 1 person

    Comment by Katie — February 3, 2019 @ 3:55 PM

    • You sure have got that right!

      On a kind of related subject, I’m going to a book signing tomorrow about an award-winning New York Times journalist who, despite epilepsy, made it through the arduous ranks of journalism!

      Like

      Comment by Phylis Feiner Johnson — February 3, 2019 @ 4:13 PM

  3. Fascinating and much applause to the neurologist. I have been living with epilepsy for over 55 years and had a lobectomy 12 years ago. Throughout this time I was a project manager for the Navy and the Army. The Korean War Veterans Memorial in Washington DC was one of my projects. I could handle the press, veterans, and Congressional inquiries, it was my seizures I had to hide and never tell any one. I wrote a book titled “Sailing through the Storms of Seizures: Living with Epilepsy, Recovering from Brain Surgery, and Being a Caregiver” last year. It is on Amazon and listed under medical for it provides much information about the types of seizures and my experience. When it was first published I felt like I was completely vulnerable for I shared my story; something I was told never to do.

    Liked by 1 person

    Comment by Jon Sadler — February 3, 2019 @ 4:53 PM

    • Kudos to you Jon.

      As I’ve said before, I’m going to hear a lecture (actually Q&A) with a Noble Prize winning author who suffered tremendously because of his epilepsy.

      My husband (who knows of him because they went to the same college) says the author was jailed, raped and just about whatever horrors you can imagine that go with tonic-clonics in public.

      From your book “blurb” (which I just read on Amazon), you sound like quite an amazing person, in your own right.

      I’m off to order “Sailing through the Storms of Seizures: Living with Epilepsy, Recovering from Brain Surgery, and Being a Caregiver” now.

      Like

      Comment by Phylis Feiner Johnson — February 3, 2019 @ 8:46 PM

  4. Cheers to the Courageous Doctor who made successful professional career out of his difficult shortcomings & disabilities, he had to endure & conquer.
    It’s fascinating to note that some refuse to be handicapped by adversities, they never saw them coming.

    Ironic & sad to note, the very Doctors, interns & classmates who should have come to the rescue of the seizing patient, choose to abandon their own classmate to endure on his own, instead of providing medical treatment they were teaching & learing to practice.
    Unfortunately, some are the same Doctors & future Dictors filling our hospitals to medically treat the patients, knocked out by siezure.

    Thanks to the heroic doctor, many Epilepsy patients will have a hero for a doctor.

    Liked by 1 person

    Comment by BahreNegash Eritrea — February 3, 2019 @ 5:03 PM

    • I think you hit the nail on the head when you said: “Ironic & sad to note, the very Doctors, interns & classmates who should have come to the rescue of the seizing patient, choose to abandon their own classmate to endure on his own, instead of providing medical treatment they were teaching & learning to practice.”

      Perceptive, as always, Gerrie.

      Like

      Comment by Phylis Feiner Johnson — February 3, 2019 @ 8:50 PM

  5. Dr. Brien Smith is certainly a hero.

    Liked by 2 people

    Comment by BahreNegash Eritrea — February 3, 2019 @ 5:14 PM

  6. A neurologist I saw years ago was epileptic, but it didn’t seem to change his attitudes as to how others felt about epilepsy He never showed any concern as to the opinions of others Not having experienced VNS, he sure thought everyone would have good luck with it; I know a person who had it done, and results were no change whatsoever from how he had been. He still is unable to drive.

    Liked by 1 person

    Comment by Karen — February 3, 2019 @ 5:47 PM

    • Perhaps he was a doctor in deep denial?

      Or resentful of making people well, when he couldn’t “cure” himself?

      Or maybe just an ordinary “dud” of a doctor.

      Like

      Comment by Phylis Feiner Johnson — February 3, 2019 @ 8:53 PM

  7. I certainly applaud Dr. Smith and assume he’s more empathetic and supportive than Dr’s without epilepsy. He is lucky the medications, stigma or stress of potential seizures did not significantly impact his practice.
    My own practice as a psychotherapist was cut short not just by seizures but by med. side-effects. A therapist should have excellent recall and listening skills, not drug or seizure induced memory problems, or the potential to scare already vulnerable clients with a seizure.
    Kudos to Mr. Eichenwald ( A Mind Unraveled), an exceptionally skilled journalist and author with epilepsy who wrote a fascinating book. He’s quite a trouper, yet he brought up one of the scariest aspects of epilepsy, our complete vulnerability during a seizure and potential for sexual molestation ( man or women). This issue is glossed over in the epilepsy community and makes epilepsy even more traumatic than it already is.

    Liked by 1 person

    Comment by skolly9 — February 3, 2019 @ 7:13 PM

  8. OMG Skolly. I’m going to meet Mr. Eichenwald ( A Mind Unraveled), tomorrow.

    And I have a close friend who had to give up her practice as a psychotherapist, after brain injury from a botched surgery.

    I’m not where you are, but I feel for where you’ve been. It must be a tough road that can only be traveled with courage and bravery.

    Like

    Comment by Phylis Feiner Johnson — February 3, 2019 @ 9:00 PM

  9. Yes, many challenges. One idea I’ve always pondered is that of peer counseling for people with epilepsy. Somewhat on the spectrum of AA, where people with epilepsy get a”sponsor” to assist them with the many challenges awaiting them. I do not have alcohol issues myself, but have attended meetings as a social worker, and a “sponsor” hangs in there and supports you with your individual needs. Thoughts? What would Mr. Eichenwald think? His thoughts on trauma and abuse of people with epilepsy?

    Liked by 1 person

    Comment by skolly9 — February 3, 2019 @ 10:31 PM

  10. I don’t know Mr. Eichenwald, but if I get to talk to him tonight, I’ll ask him.

    I think, it’s a brilliant idea that could be started locally, then perhaps expanded nationally through the various chapters of the EFA.

    We already have support groups. Why not take it one step further?

    There also a “buddy system” possibility…

    Like

    Comment by Phylis Feiner Johnson — February 4, 2019 @ 8:35 AM

  11. I think it is just a nightmare that medical students do not understand epilepsy. The doctor had a hard time with educated people and went through the same BS if being stereotyped that the rest of us go through.

    Liked by 1 person

    Comment by Jill Whiting — February 4, 2019 @ 10:24 AM

    • Jill, I don’t even think ER doctors really understand epilepsy or other seuzure disorders. I was asked a whole bunch of questions and thought I answered correctly. I didn’t realize I had incontinence, chewed my cheek and hurt my ribs. I was still postictal. I told my husband he should check me over and answer the questions if he’s there.
      When my friends mom had her first seizure a few months ago, I was floored when I heard she had been asked about end of life directive in ER. She is in her 80s, and otherwise healthy.

      Liked by 1 person

      Comment by Marlyn — February 4, 2019 @ 8:19 PM

      • It’s common in most cases to ask about medical directives whenever you’re in the hospital.

        I know it’s happened to me.

        Advance Health Care Directives and Living Wills

        https://epilepsytalk.com/2015/07/26/advance-health-care-directives-and-living-wills/

        As for the medical question go-round, it’s always best if you have someone who’s actually seen your behavior, especially when you’re asked questions you’re unable to answer.

        Morale of the story, try not to go to the ER alone. Because you’re right. In most cases, they don’t have a clue about you. 😦

        Liked by 1 person

        Comment by Phylis Feiner Johnson — February 5, 2019 @ 10:55 AM

  12. One would think in the medical field, doctors would know better and also respect one of their own.

    Like

    Comment by Phylis Feiner Johnson — February 4, 2019 @ 11:35 AM


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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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