Epilepsy Talk

Ode to a Doctor’s Visit… | February 22, 2019

They forget that we live 365 days or 8,760 hours a year with our illness…

We see them for four 30 minute visits or 2 hours in that year while we’re struggling…

We spend time planning in anticipation of this precious, important moment…

We invest hope and sometimes fear into the event…

We have often orchestrated endless tests and other Doctors’ assessments in order that instruments will be tuned to perfection…that they might render us an orchestral visit…

The Doctor will listen to us as we have observed our condition relentlessly and respond with the respect due, to the information we offer and know what is needed…

That is what we ask.

By Sally Komar


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  1. This is so true and if you live with family members they also spend everyday and every hour preparing for the next episode. My husband has been wonderful and deals with the stress of anticipating my next seizure. As for doctors I finally found one that spends time listening to me and how I manage my seizures….

    Liked by 1 person

    Comment by Deborah — February 22, 2019 @ 10:29 AM

  2. Well, I don’t have health insurance and I haven’t seen a neurologist in over ten years. I guess this post doesn’t apply to me.


    Comment by Brian Wallace Refford — February 22, 2019 @ 10:36 AM

    • I’m so sorry Brian.

      Perhaps this link can help:

      Josh Provides.org. Financial assistance for those living with epilepsy and other seizure disorders and their families who are in need of help to pay for all or a portion of the expenses they incur for:

      Transportation expenses to and from home, school, medical services and employment, through the purchase from or through third parties of gas cards, bus passes, taxi cab cards, or other third-party transit options plus:

      Prescription medication — Medical services — Seizure response dogs — Seizure detection devices — Seizure prediction devices.

      Also included are other technologies, methods, and devices which are recommended by the patient’s medical doctor and are not covered by private medical insurance, other reimbursement plans, or government-funded programs, i.e. Medicaid benefits and Medicare benefits (but not insurance premiums) http://joshprovides.org/get-help/how-joshprovides-can-help/


      Comment by Phylis Feiner Johnson — February 22, 2019 @ 11:11 AM

  3. This is so true, and I’ve got 50 yrs. of experience to show for it. And nothing was more frustrating than to wait months to see a specialist only to find his or her specialty was in sleep problems, or child neurology, or
    Parkinson’s, or etc. Nothing wrong with that, mind you. But if you’re not a specialist in adult epilepsy, then say so and refer me to someone who is! 😦

    Liked by 1 person

    Comment by Mel Mitchell — February 22, 2019 @ 11:24 AM

    • Probably, you should be sure you’re seeing an epileptologist.

      They specialize in nothing but epilepsy.


      Comment by Phylis Feiner Johnson — February 22, 2019 @ 11:29 AM

      • After more than 35 years of dealing with adult idiopathic epilepsy and many, many neurologists, I can say that none of them were epileptologists. They do exist?? Do you have a worldwide list?

        Liked by 1 person

        Comment by Andy — February 22, 2019 @ 11:54 AM

  4. It’s hard to come by well-informed people in this particular topic, however,
    you seem like you know what you’re talking about!


    Liked by 1 person

    Comment by July 2019 Printable Calendar — February 22, 2019 @ 12:18 PM

    • Thanks. I research a lot to get there. Something I learned long ago when I was working for a Health and Wellness company.

      Believe it or not, you really DO have to back up those claims, or the FDA can come after you!


      Comment by Phylis Feiner Johnson — February 22, 2019 @ 2:34 PM

  5. Andy, I do have a list with some epileptologists on it:

    2019 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors



    Comment by Phylis Feiner Johnson — February 22, 2019 @ 2:00 PM

  6. I just don’t like them and have no reason to trust them (long story but they brought on themselves many years ago) so I don’t see them unless there’s some major change to my situation. Just had a good 6 years break from mine and didn’t miss him one bit 🙂 Family doctor can prescribe my meds. I am lucky to be in a situation to be able to make that decision for myself, I know.

    Liked by 1 person

    Comment by Katie — February 22, 2019 @ 4:06 PM

    • Well, if it works for you.

      After all, you know your body — and your brain — best! 🙂


      Comment by Phylis Feiner Johnson — February 22, 2019 @ 5:29 PM

      • Pretty clued up on my brain and the way I react to the meds after a few decades, yes, but I also know when it might be a good idea to get things reviewed as I did recently. It probably helps that I’m more or less out of treatment options so it’s a pointless exercise seeing a neurologist outside of an acute situation, not a lot they can do.

        Liked by 1 person

        Comment by Katie — February 23, 2019 @ 7:52 PM

  7. Katie, what do you mean you’re out of treatment options?

    Epilepsy And Complementary Medicine…



    Comment by Phylis Feiner Johnson — February 23, 2019 @ 8:25 PM

  8. Since my diagnosis 17 years ago I’ve learned a lot about those doctor visits. It’s okay to be a little demanding…more info please! And the neuro wont know everything, and if they act like they do, that’s not a doc I want.
    My hubby has gone on almost every appt with me. And we found a GREAT neurologist who is never in a hurry, & really cares! So when it was time to make a decision for surgery, I was very much at ease.

    Liked by 1 person

    Comment by Suzanna Price — February 26, 2019 @ 11:38 AM

    • How smart that you’ve learned to be your advocate and not to just follow “directions”.

      Even though you have a great neuro now, it’s great to do your own research, know what you want and be prepared to discuss your issues when you go in.

      And having a second pair of ears is a great advantage.

      I do that with my husband, too.

      Just so I can ask the questions he may not remember and sometimes even take notes.


      Comment by Phylis Feiner Johnson — February 26, 2019 @ 3:01 PM

  9. I have learn some just right stuff here. Definitely price bookmarking for revisiting.
    I wonder how much attempt you place to create any such wonderful informative web site.

    Liked by 1 person

    Comment by Situs Capsa Susun — March 5, 2019 @ 2:00 AM

    • Thanks so much for the compliment, Situs. As for your question, I just research, research, research.

      It’s something I learned in my other life as a Health and Wellness writer.

      If you haven’t already, please feel free to join our (ever growing) family.

      To subscribe to Epilepsy Talk and get the latest articles by email, simply go to the bottom box of the right column and click on “Follow”


      Comment by Phylis Feiner Johnson — March 5, 2019 @ 9:19 AM

  10. My old doctor I had just seen people with seizures I had him for 15 years the doctor have now it will be two years she had only exam me twice

    Liked by 1 person

    Comment by Donna gilson — May 1, 2019 @ 10:00 PM

  11. Oh Donna, that’s pitiful. 😦


    Comment by Phylis Feiner Johnson — May 1, 2019 @ 10:05 PM

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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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