Epilepsy Talk

Ode to a Doctor’s Visit… | June 22, 2017

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

 


10 Comments »

  1. So true, yet ”most” not all of these neurologists can not understand why we want a seizure free life, as they all know they could help us better to achieve that. Instead they want us there in their offices for MORE TE$T$ as they arrogantly will not help us half way to make a seizure free life happen for any of us. Tell me WHY every person who has been diagnosed with a seizure condition, like EEG’s we get, can not get a GLUTAMIC ACID TEST done for us, when it can get done in most ALL doctors offices today. That can be 80% or more of the problem why we all have seizures, & the types we have based on how glutamate levels from glutamic acid levels may balance one another & relate to these seizure patterns we all have. Even if one can not detect any seizure pattern, that alone is a pattern. Check out the following. Dr.Wilson/articles/epilepsy.com

    Like

    Comment by C D — June 22, 2017 @ 7:41 PM

    • Money talks and few listen.

      I admire Dr. Wilson’s work from when I used to write about Health and Wellness.

      Unlike many, he seems to be the real deal.

      Like

      Comment by Phylis Feiner Johnson — June 22, 2017 @ 9:41 PM

  2. in my case when people here me say that ive been seizure free for 2yrs 6months they automaticaly think i dont have epilepsy thed dont relise when i say that been seizure free means it has been controled through medication plus some people have had the op calle v.s.n for short where theres a little box fitted and at the time of taking a seizure it kicks in but epilepsy can come back at any time in your life and when it dose it controles your life a lot more than people think especily when taking part in some sports events going to cinimas and worst of all i think is having to surendure your driving licence

    Like

    Comment by Robert Kane — June 22, 2017 @ 11:45 PM

  3. Yeah. And if neurologists leave your city, requiring you to go elsewhere, they also do not give any thought about how much transportation costs you. Why don’t they subtract these other costs from your bill? Patients are NOT made of money.

    Like

    Comment by Karen — June 23, 2017 @ 1:01 AM

  4. We are in the uk and adult neurology clinic appointments are approx every nine months and a 15 minute slot!!

    Like

    Comment by Yvonne Goodson — June 23, 2017 @ 10:05 AM

  5. I can hear the frustration and totally understand, we have been in a similar boat my 12 yr old enduring endless tests and appointments, he now has a fear of hospitals and after his 6th drug tried and failed to control his seizures we have bee trying GABA supplementation, like the first post it seems to help with inhibition of glutamate levels. My son for the first time in years has been grand-mal free for nearly 3 months….this has not happened with ANY of the drugs! Please I urge all those struggling to manage their epilepsy read read and read and keep trying, Jonothan Prousky has done some research for The Journal of Orthomolecular Medicine and has 2 papers on adjunctive treatment for epilepsy. Good luck, 🙂

    Like

    Comment by jules lough — July 6, 2017 @ 6:20 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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