Epilepsy Talk

New Epilepsy Diagnosis — Now What? | February 6, 2020

You’re scared. Who wouldn’t be?

The docs. There are lots of terrific ones.

The tests. They can actually help to correctly diagnose your epilepsy.

I’ll die. Not very likely. 

My life is over. No, it’s not, but it will change…

And although you’ll come up against plenty of myths like “epilepsy is catching.” (Geeze!)  People with epilepsy are “challenged” and you shouldn’t expect much from them. (Wrong.)

Some of the greatest people in history had epilepsy. It didn’t stop them and it shouldn’t stop you.

Imagine how different our world would be if these people threw in the towel. Alexander the Great, Aristotle, Alfred Lord Tennyson, Van Gogh, Charles Dickens, Emily Dickinson, Lewis Carroll, Theodore Roosevelt, Bud Abbott, Richardson Burton, Prince, Margaux Hemingway, Neil Young, David Hockney, Duke Ellington, plus a host of sports figures and others.

And then there’s me. I’m not great or famous, but I had epilepsy for decades.

When I was first diagnosed as a teen, no one knew what to do with me. My parents refused to use the “E” word.

People treated me like I was some kind of pariah. I was cheerfully told I “would never amount to anything.” They wouldn’t even pay for college!

But here I am. A successful writer for more than 35 years with my own freelance business, wonderful friends, a terrific husband.

I refused to believe them. My life was not over.

(Or maybe I just wanted to prove how wrong they were.)

Yes, it took time. To learn, adjust, and adapt. But the biggest lesson was to use my own strengths to come to terms with this new lifestyle and cope.

FACT: You can either become a victim of epilepsy and let epilepsy take over your life. Or you can simply say, “I have epilepsy” and decide your own fate.

Here are my steps for “beginners”…and maybe all of us!

Step #1: Get a great neurologist. One you’re comfortable with and one who can answer your questions. In English. No mumbo-jumbo.

If you’re not comfortable with the first one, move on. Or get a second opinion.

Keep looking. There are plenty of good neurologists out there and there’s no reason to settle.

After all, this is your brain we’re talking about!

Step #2: Get an accurate diagnosis. This will help define what kind of epilepsy you have (yes, there’s a myriad of different types of epilepsy) and diagnostic testing will better target what meds you should try.

Note: There are a lot of new medicines out there. That makes the options both better and more confusing. The first drug may or may not work. You may need another drug or a different combination.

Everybody is different and we each have our own chemistry. So what works for one person may not be the answer for you.

Try to be patient and give your doc a chance. (I kissed many frogs before I found my “magical medicine mix!”)

Step # 3: Keep a daily seizure diary. Keep track of your sleeping patterns. What you eat and when. Daily activities (including stress.) Seizures themselves.

How you feel before a seizure. Triggers? Auras? Length of seizures, if you know. How you feel afterwards.

This will help both you and your neurologist better figure out what’s going on with you.

Step #4: Educate yourself and your family and friends. This will help them understand and alleviate THEIR fears.

A wonderful source of knowledge is at https://www.epilepsy.com/living-epilepsy/our-programs

At the top are drop down menus in purple. Click on them and learn everything from Epilepsy Basics and Types of Seizures, to finding your own Neurologist or Epilepsy Support Group.

You might also go to: 2020 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors https://epilepsytalk.com/2020/01/08/2020-patient-recommendations-for-top-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/ 

Step #5: Spread the word about first aid. It will help handle the fear of others who undoubtedly feel helpless not knowing what to do if you have a seizure.

And it will help them help you as well as understanding that they CAN do something about a seizure.

People want to help. Just give them the chance.

Step #6: Talk about it! I can’t even begin to stress how important this is!

Share your epilepsy and feelings with your family and friends. Also teachers, employers, colleagues.

The more people hear about epilepsy, the more they’ll know and understand.

Prejudice is born of ignorance.

Also join on-line forums and, if you can, local support groups. Find out what other people have done and what they’re going through.

Believe me, you can learn a lot from them and vice-versa. (I know I have. And the learning doesn’t stop. Or the support and caring.)

Step #7: Don’t give up! Think of epilepsy as a hurdle, not a death sentence. Life is too short for pity parties, anger, or denial.

Give yourself time, and give others time, too. Sure you’re probably scared. But so are they.

They may shy away from you, because they don’t know what to do.

Or they’ll embrace you, because you’re really still the same person, but you just happen to have epilepsy.

There’s a whole community of compassion and caring out there.

Just reach out.

Life goes on. And so will yours.

 

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23 Comments »

  1. I do not understand WHY ??? I am not able to see my comment on the E Talk link, forum or whatever you name it. Was I kicked out,? banned from using it, ? no matter what I typed, because I say how it has been according to my own life of having this seizure problem & other hardships with drugs & etc.. ? I can not figure it out as I have emailed WORD PRESS & whoever I can send an email about it, & I get nothing back from any of them. So yeah,, now what ? This does not seem to me but anything from denying me my right of my FREE SPEECH / 1st amendment. Tell me where in the ”constitution” that restricts me from not being able to speak out of any my concerns or thoughts about anything. I have a copy / book of the ”constitution” right here on this desk. I’d like to read that article,& section, or that amendment that tells me I must stay quiet. I know I have lived amny things which DOES trigger seizures over the past 6 decades, & yet what I may post, seems to never be any top issue as I know every day ”all that I have to deal with after 59 years, is SURELY a great possibility, that anyone else living with seizures MAY have to face the same things now & later when they are 60 IF they live that long. I never thought I would live pass 50, 40 or even 30, much less 59 years old if seizures were going to be with me forever, as they seem to be now after 59 years. That’s another thing,,, “”” I look for people who are OLDER than I am who HAS HAD SEIZURES FOR MORE THAN 60 YEARS & I never read about them nor m=have met them face to face to actually talk to anyone who’s had seizures for 60 years or more. Oh but there are EXPERTS I have met as doctors or have read on web sites everything in the neurology, & drug/gadget world who all but promises NO SEIZURES, if you do this & that, but they end up saying, IT’S NOT A PROMISE FOR US ALL. Really,,, And none of them ever has had a seizure to even know what having A SEIZURE IS LIKE, of any type, to a GRAND MAL & having 1 or more of them. So I have typed in my email address & my I D and I believe you know them both as you seen them when my thoughts & comments USE TO BE POSTED, & I do click the tag POST so I SHOULD see my comment listed but that never happens anymore. I guess NOBODY want to see my comments any more,,So,, Now What ? If you think this will not or can not ”’create or cause STRESS,, and that could TRIGGER A SEIZURE”’ & this all continues, and I know I DID NOT & NEVER HAVE CHANGE THINGS IN MY EPILEPSY TALK / WORD PRESS SETTINGS to cause this problem. Whatever this is all about & that is not good, no matter WHO IS NOW, and HAS BEEN the cause of it all. “”” I OWN MY 1st Amendment & right of FREE SPEECH, and only I can say or deny my comment & thoughts from being a post by saying NO to posting something today or in the future. So if this solution is just a simple click on a YES TAB from ANOTHER PERSON who hates what I say about some things,, then I suggest that YES TAB get clicked. Trust me I have NO MONEY to go any further with this, BUT nothing is impossible, as I am sure a few media outlets would like to learn how this is working for some of us, but WHO really cares for people who have seizures ? Start counting them with YOU. I comment what I do because I DO CARE what people do think & wonder too if something that I MAY NOT COMMENT ON, would affect them in a BAD way otherwise if I stayed silent. CASE & POINT,,, A mother with a precious girl around 4, had no idea what could trigger seizures even more, when a FEVER is present. She had NO IDEA about some things until I said what I did in that FB room. Did she act on what I said ? I have no idea, as I hope that girls fever did go away, & that still did not mean she would not have a seizure later, after feeling better with no fever, from eating CANNED SOUP or whatever. O’well these words I am sure were worthless to type for the past 30 minutes. BUT WHO is really effected by my words being banned from reading by others ? Not me where seizures are concern from less knowledge, but from STRESS that can change things.

    Like

    Comment by jcdavis@hardynet.com — February 7, 2020 @ 7:31 AM

    • JC this message came through. Look and see.

      Like

      Comment by Phylis Feiner Johnson — February 7, 2020 @ 9:51 AM

    • JC, it seems like this problem is causing you a lot of stress, and like you say, stress triggers seizures. Maybe for the sake of your health, you can let go of what maybe isn’t meant to be, and stop stressing about it, and start your own blog instead, if you feel you aren’t being allowed to speak here. That way you’re still exercising your right to freedom of speech.
      Take care of yourself, and please try to find the positivity (and maybe even a little humour) situations.

      Liked by 2 people

      Comment by Marlyn — February 7, 2020 @ 3:37 PM

  2. Your comments are of no value! Why don’t u talk about the people who get dumped by there Neuro after 10yrs of waste & money, why don’t u talk about where they can get help because no insurance, only income is 600. Monthly why don’t u talk about how this foundation does nothing but refer people who don’t even return a call a disability law center who says can’t help! Your foundation in my city is so helpful they don’t return calls! This whole thing is bull & u need to stop preaching how wonderful your life can be, tell the truth no one is going to help because some reason it’s not worth the time! There is no funding because there is no one out there fighting for people with this disability, it is life threating u said more people die from epilepsy than breast cancer! Get off the computer and get out and make this more visible it’s not up to them! It’s a foundation DO SOMETHING!!!

    Like

    Comment by Glenda Bowen — February 7, 2020 @ 9:41 AM

  3. Goodmorning Phylis 😊. For what it’s worth I GREATLY APPRECIATE YOU AND THIS BLOG!! I READ IT EVERYTIME I GET A NOTIFICATION (now that I have a grasp on it as well 😘) on the flip side I SINCERELY APOLOGIZE BUT I DO NOT LIVE IN THE UNITED STATES OF AMERICA and we don’t seem to have 5th AMENDMENT HERE IN CANADA. Now with without any further I myself have been frustrated (NOT AT ALL WITH THIS GROUP), BUT MORE WITH THE PROCESS OF TRYING TO HELP MYSELF TO FIND THE PROPER NEUROLOGIST, EPITOLOGIST/MEDICAL STAFF TO HELP ME HELP MYSELF JUST SO I COULD LIVE A NICE CALM STRESS FREE LIFE!!!!! Getting upset with anyone or yourself is NOT GOING TO HELP ANYONE OF US EVER!! When you get upset you lose sight of what you trying to do in the first place (HELP YOURSELF AND SHARE WITH COMPASSION) and put yourself in the defensive in a negative fashion. Foundations are in our local cities, provinces, states and countries. This is a blog or forum not a foundation. So if by any chance anyone is upset or not prepared To help one another (as family or epileptics themselves) please there’s no need to create more unnecessary drama for this who are trying to help us. (As epileptics, family’s, professional medical personal, and loved ones) and help eachother to simply live the best positive life we can with assistance (in this site). We already have drama all around us. Why have the drama here as well. I believe everything is a choice. If your not happy here then you have a choice not to be here. That’s up to you. living with epilepsy CAN BE AND IS LIFE THREATENING OR ALTERING TO EVERYONE. So please help in a positive fashion and share positive hopeful stories and ideas with Phylis and the rest of us on this site. However EPILEPSY CONTINUOUSLY EVOLVES WITH US ALL OF OUR LIVES in one way or another!! So your aware I APPRECIATE ALL OF THE INFORMATION, KNOWLEDGE AND STORIES AND PLEASE (if BE MINDFUL AS TO YOUR WORDS AND ACTIONS) some of us DEPEND ON YOUR POSITIVE VALUED INPUT. I’m sorry Phylis but I WANT YOU TO KNOW I GREATLY APPRECIATE YOU FOR EVERYTHING!!!!!!! THANK YOU FROM THE BOTTOM OF MY HEART!!!!!!! 🙏🏼🦅😇🙏🏼😘

    Liked by 1 person

    Comment by Kathy S.B — February 8, 2020 @ 11:43 AM

    • And thank you Kathy, from the bottom of my heart, for your position, concerns, confidences and keeping things positive.

      You’re right. We are not a foundation we’re a forum/family trying to help one another. And if someone doesn’t understand that, they should not be part of the conversations.

      Crying, venting and complaining to one is one thing. Dissing is another and it hurts me greatly.

      So, as always, thank you for your energy, your positivity and for all the care and concern you share with us all.

      It means a lot to me.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 8, 2020 @ 12:00 PM

      • YOUR VERY WELCOME PHYLIS 😘. I have to admit EVEN I WAS HURT TOO!! 💔. I LOOK FORWARD TO YOU FORUM EVERYDAY!!!!! Yes some days are harder than others I admit, but even in all of the chaos and whatever’s happening with me now I know I can ALWAYS COUNT ON YOUR FORUM!! 🙏🏼🦅😇💗. My grandma used to tel me “part of being a leader is being able to handle the scrutiny that comes with the position 😘”. THANK GOD/CREATOR AND MY GRANDMA I HAVE BROARD SHOULDERS!! 😉 and I’M ALWAYS WILLING TO SHARE IF I COULD!! Please BE WELL PHYLIS AND TAKE CARE OF YOURSELF!! THANK YOU FOR BEING YOU, YOUR FORUM AND EVERYONE IN IT!! I WILL ALWAYS READ IT I PROMISE!!!!! Lol as long as I CAN GET TO IT!! Lift your head up AND BE PROUD OF EVERYTHING YOU HAVE DONE AND ACCOMPLISHED AND SHARED!!!!!!! 🙏🏼🦅😇😘💞

        Liked by 1 person

        Comment by Kathy S.B — February 8, 2020 @ 12:10 PM

      • Epilepsy Talk is my life.

        You people are the reason I get up in the morning.

        It’s a labor of love and those that can see and appreciate it are my heroes.

        I put everything I can into it.

        There’s nothing more that I can do.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — February 8, 2020 @ 12:20 PM

      • Oh BUT YOU PUT MORE IN THAN YOU KNOW!!!!!!! Or that WORDS CAN EVER SAY!!!!! I completely agree with you “IT IS A LABOR OF LOVE AND AN EMENSE AMOUNT OF TIME, ENERGY AND HEART!!!!!!!”. All FOR ALL OF US AND I THANK YOU!!!!!!! Don’t let this get you down!! Allow it to make you MORE DETERMINED AND GIVE YOU STRENGTH, WISDOM, LOVE AND CARING!!!!!!! Thank you once again, take care of yourself and HOLD YOUR HEAD UP AND BE PROUD OF YOURSELF!!!!!!! I AM!! 😊🙏🏼🦅😇😊😘😘😘😘😘

        Liked by 1 person

        Comment by Kathy S.B — February 8, 2020 @ 12:36 PM

      • LOL 😂 MAYBE ONE DAY WE WILL ALL GET TOGETHER AND YOU CAN WRITE ANOTHER BOOK PHYLIS!! 😘😘😘😘😘

        Liked by 1 person

        Comment by Kathy S.B — February 8, 2020 @ 12:39 PM

    • Well said Kathy!

      Liked by 2 people

      Comment by Marlyn — February 8, 2020 @ 12:02 PM

      • Thank you Marlyn 😊, but there’s really nothing that should have had to be said. I REALLY ENJOY, RESPECT AND APPRECIATE PHYLIS’S SITE AND HER FOLLOWERS AS WELL!! We almost feel like secular family who have never had an opportunity to actually meet one another in person😘. Sometimes as a Epileptic it’s a tough call when even I have either stop or limit communication with some family members or friends. But I REALLY WANT ALL OF US TO BE OKAY AND HELP EACHOTHER THE BEST WAY WE CAN!! Because we may all be married (maybe) or have children and grandchildren, family and friends. However it’s VERY DIFFICULT SOMETIMES for EVERYONE TO EVEN BEGIN TO STAND IN OUR SHOES AS EPILEPTICS!! I just want ALL OF US TO BE WELL, CONTENT AND PROUD OF WHO WE ALL ARE!!!!! I know I’M PROUD OF ALL OF US AND PHYLIS!!!!!!! But it’s actually Phylis who COMPLETELY WHOLEHEARTEDLY DESERVES THE THANK YOU FOR HOPE, FAITH, CARING AND FRIENDSHIPS (lol and BRAIN 😘) of “EPILEPSY TALK” not me. 🙏🏼🦅😇💞😘😘😘😘😘

        Liked by 1 person

        Comment by Kathy S.B — February 8, 2020 @ 12:31 PM

  4. I don’t know if my message a few days got thru, so want to send one again.

    I was in good health and never had any health issues was a powerlifter and all of a sudden one day got hit with epilepsy in 2014. I was 55 ys old then. I was first admitted into Kaiser then moved to Stanford. My seizures wouldn’t stop so I was put into a medically induced coma and was in a coma for 3 and half months. I am fortunate that I have a wonderful wife who took care of me stood by my bedside all day long. She did not want to go home since she was afraid that she would come back next day to find out that I passed away the day before.

    My weight dropped from 180 lbs to 115 by the time I was out of my coma. I had to move around in a wheelchair for some time then on to walking with a cane before I could walk. I had to go thru physical therapy for a while since I could not even straighten my fingers or my toes. My seizures are in my left leg so I fell down a number of times before my wife could hold me up. She had a hard time holding me up, since she is of slight build. After a long time I was able to tell that I may have a seizure, so I lie down flat on the ground and take the seizure so I don’t get hurt.

    You will not believe the amount of drugs I was taking 8 tablets of lamogtrine, 6 tables of keppra, 3 tablets of pheno and still had seizures. Every day I still take 4 tablets of lamotrogine, 5 tablets of keppra gone down a on pheno now but still have to take it, otherwise I end up with grand mals. It’s been over 5 years and I still have seizures every day, 2 most of the time and have grand mals once in a while. I count myself lucky if I don’t have a seizure one day or just one minor seizure a day. I tried all sorts of stuff – ketogenic diet, herbs .. nothing worked. One thing I know for sure is that if I don’t get enough sleep I have large seizures or grand mals.

    I am not allowed to drive and my wife used to take me to the gym for a short time and have a instructor help with my workouts. We did not have the resources so we could only afford to do that for a short period. We set up a “home gym” and fortunately for me I have a friend who works out with me and helps me when I have seizures. I lift weights 3 days a week and go on walks the other days. I put on a helmet, pads on my knees, elbows and gloves on my hands when I go on walks. I look like a skateboarder and had a couple of times when somebody asked me if I lost my skateboard :-). I lie down on the ground when I sense I may have a seizure and had times when people stopped by to see if I was okay and one time they even called an ambulance. My belief is that me working out every day is what keeps me sane and not go crazy or try to commit suicide. I don’t know how my wife puts up with me since I go thru these periods when I don’t make much sense or get very angry for no reason.

    I was out of work for a long time and am trying to get back to work again. I am a software architect and am able to work from home and I keep myself busy working on some software to take my mind off thinking about my condition.

    My neurologist who is well known – Dr Fisher at Stanford has been trying to get a new device which is in research phase – tDCS which potentially can help. They tried TMS on me before and it did not work/reduce my seizure occurrence.

    Had anybody tried out this device ? https://en.wikipedia.org/wiki/Transcranial_direct-current_stimulation Apparently you can put on your head .. so I can take it home and put on my head if I sense a seizure. Let’s see if it works.

    Liked by 1 person

    Comment by prasadmok — February 9, 2020 @ 5:58 PM

    • Is this something like what you’re talking about prasadmok?

      Trigeminal Nerve Stimulation

      https://epilepsytalk.com/2013/04/01/tns-vs-vns-no-surgery/

      Or is it something else?

      Have you tried tDCS yet? Is it working?

      You’ve certainly been to hell and back. What courage both you and your wife must have. I think I would have folded my tent somewhere along the way. I’m not nearly as brave as you.

      Your perseverance is stunning. I think we could all learn a great deal from you.

      P.S. I don’t know why, but for some reason, your other reply did not come through. I’m sorry. I could have never ignored something as important as this!

      Like

      Comment by Phylis Feiner Johnson — February 9, 2020 @ 9:11 PM

  5. Dr Fisher is having a hard time getting funding from Stanford to try out this device on me. He is a great Neurologist and really cares about his patients. I heard a month back that he is about to get funding so he can see if it works for me. You can look up on youtube for some of his talks on epilepsy. One of his talks is about AI – https://www.youtube.com/watch?v=rKCqkHDx86Y as well. My seizures are not what’s normally seen – don’t occur in legs (happens to be my left leg) and although he is doing mostly research these days he is trying his best to help me and would like to try out tDCS and see if it works.

    Apparently where my seizure focus is neither tns, vns or surgery most likely would not work and is dangerous. So my only hope for now is this new device. Apparently this device was tested on a few folks in NY and it worked is a couple of cases. Hopefully it works for me – at least reduce the occurrence of seizures. There are some of these devices being sold – Amazon etc – but don’t trust any of them. They are “fake” and trying to make money out of this.

    Liked by 1 person

    Comment by prasadmok — February 9, 2020 @ 10:19 PM

  6. Thanks for the explanation, confirmation AND the
    heads-up.

    I wonder where they get the “technology” to create the
    tDCS that are fake?

    I’m just throwing things out here…

    What about DBS (Direct Brain Stimulation)?

    Although it sounds like you and Dr. Fisher have run the whole gamut.

    Sigh.

    Like

    Comment by Phylis Feiner Johnson — February 9, 2020 @ 10:52 PM

  7. Apparently tDCS is not something you put on and it works. It causes some sort of stimulation and has to be tailored – set at a certain frequency/level that works for different cases. So you have to experiment with it to see what works. It was used for different purposes than epilepsy before. Not sure if this device is a variation of what’s existed before. I trust Dr Fisher’s judgement and I believe DBS would not work for my condition. As you can see from his research (you look at all his videos on youtube) he spent his lifetime studying epilepsy. I am actually fortunate that I was his patient. I probably would not have survived if it wasn’t for him treating me.

    Don’t worry about my reply not coming thru. I don’t care much for wordpress. I am a software guy 🙂 If you need any help with software I would be more than happy to help. You are helping a lot of folks with similar conditions. It helps to talk to folks who understand what epilepsy means and how it can change their whole life. I am very familiar with AWS – have knowledge of Scala, Java etc, but these days work mostly in Scala.

    Liked by 1 person

    Comment by prasadmok — February 9, 2020 @ 11:54 PM

    • You’re the best. In all ways. Brave, persevering, smart and even noble.

      My husband is my tech support. But I created my website from WordPress because it was the only format that I could understand, format and write to.

      It’s OK. Except it has an overenthusiastic spam filter that seems to block people and comments at will.

      Much like a naughty editor run amok.

      Thanks for your patience and understanding. Not to mention the education. 🙂

      Like

      Comment by Phylis Feiner Johnson — February 10, 2020 @ 12:05 AM

  8. I detest labels and try to avoid them, but “disabled” hit me hard. I have had epilepsy all my life, was re-diagnosed rather recently. My first response was to make a joke out of it.

    Doctor: This means, of course, that you are disabled.
    Me: Where do I get one of those blue parking tags?
    Doctor (sternly): It’s not that kind of disability.

    But at home I cried. Nothing had changed except that a word I had applied to other people now was applicable to me. It was no longer Them, it was Us.

    There is a certain amount of grieving involved in the transition. Better not to ignore it.

    Liked by 1 person

    Comment by HoDo — February 10, 2020 @ 11:28 AM

    • Yes, the grieving is inevitable. And yes, I agree, it’s them against us.

      I was treated like a pariah and even my parents refused to use the “E” word.

      Among them was a psychologist and surgeon. You would think they’d know better.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — February 10, 2020 @ 11:38 AM

    • I am surprised that you are not able to get a blue parking tag. I am not allowed to drive due to my condition but got one so my wife can park in those disabled parking spots when she takes me for a haircut or go to the hospital ..

      I am not sure if you have a good neurologist or not. I was initially admitted into Kaiser when I suddenly ended up epilepsy and started having these seizures. The docs there just wrote it off as though this was some sort of flu. Fortunately my wife got me into Stanford where I was seen by a well known Neurologist who knew exactly what I was going thru.

      It is very difficult to accept the fact that you are not the same person you were before. Don’t let anybody put you down. It took me a long time to accept the fact that I am not the same person I was before. I used to lie, get angry when people could not comprehend what I was going thru. Life goes on. I even had times when I wanted to commit suicide but thinking about how it would effect my wife and kids stopped me from doing that.

      In my case, I work out, walk spend a lot of time on my computer so I can take my mind off my “disability”. Maybe doing something you like would take your mind off your condition.

      You WILL get better over time and get to understand how you can cope with your condition.

      Liked by 1 person

      Comment by prasadmok — February 10, 2020 @ 12:35 PM

      • Oh, I came out of the closet long ago. And yes, I did try to kill myself. And yes, I’m doing something I love — Epilepsy Talk is my passion! 🙂

        Liked by 1 person

        Comment by Phylis Feiner Johnson — February 10, 2020 @ 3:43 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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