Epilepsy Talk

Epilepsy and Driving (A Small Rant) | October 21, 2019

For three months I was “benched”. With three more months until my driver’s license was restored.

The authorities said, if I didn’t “surrender” my license by XYZ date (with the neuro and cardiologist’s report) a sheriff was going to show up at my front door and haul me away!

So, now, not only did I have epilepsy, I was a prospective CRIMINAL with epilepsy.

If I had a pacemaker, do you think they’d take my license away? Or cancer, diabetes, etc?

Would they revoke my license if I had a car accident? Not likely.

But nooooo. I have epilepsy, so I must be punished.

Because I drove my car into the back of my garage wall.

Did I hurt or endanger anything (other than my garage)? Well, I did hurt myself, when the airbag almost crushed me.

Would 6 months without a driver’s license suddenly make me a “safe” driver?

I felt like I was under “house arrest”.

Not going anywhere. Even the dreaded grocery store. Or the pharmacy to pick up my meds. (I would suggest mail order drugs, if you find yourself in the same bind.)

And even when I qualified to have my license returned, it took our blessed bureaucracy about 6 weeks to get it back to me.

One good pieced of news. I’d served half of my term from when the “incident” occurred and I was reported.

I guess that makes me only half a criminal. 

To say I was furious is an understatement.

How many of you have been in the same situation? And how do YOU feel?

To see each state’s driving regulations, click below:

http://www.dmv.org/suspended-license.php

http://en.wikipedia.org/wiki/Epilepsy_and_driving#United_States

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51 Comments »

  1. Glad you’re okay, though! Can’t wait for my self-driving cars. It will remove so much stress from our lives.

    Liked by 2 people

    Comment by Liz Caldwell — October 21, 2019 @ 2:22 PM

  2. It’s repugnant how the withholding of the driver’s license can be used as a weapon so often. I have had a neurologist threaten to have my license yanked if I didn’t take meds (to which I was having a horrible reaction) back when I first started having seizures. Then recently, with my seizures under excellent control, I approached a neurologist about helping me titrate back off my meds which I now believe to be unnecessary. I was again told that, of course, nobody can FORCE me to take meds, but, if I wanted to titrate back, my license would have to be suspended for the duration. All of this for a seizure disorder that has been exclusively nocturnal for 35 years and a person who has a stellar driving record.

    Liked by 3 people

    Comment by paleobird — October 21, 2019 @ 2:26 PM

  3. Why would your license have to be suspended if you titrated DOWN your meds? Isn’t that bullying and a power play by your doctor?

    “If you don’t do as I say, then the penalty is going to be…”

    That’s disgusting. And discriminatory.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — October 21, 2019 @ 2:39 PM

  4. I HAD TO TURN IN MY LICENSE 5 YEARS AGO BECAUSE OF MY SEIZURES.THE LAW IN N.C. IS YOU HAVE TO GO 3 YEARS WITHOUT A SEIZURE.SO I STILL HAVE NO LICENSE.BUT THANK GOD I HAVE THE SUPPORT OF MY FAMILY AND THEY TAKE ME WHERE I NEED TO GO.BUT IT STILL REALLY SUCKS CAUSE I CAN’T GET UP AND GO WHEN I WANT TO.

    Liked by 1 person

    Comment by Angela carter — October 21, 2019 @ 3:38 PM

    • Would that not be considered to be a form of abuse by use of threats or threatening tactics of the powers that be? Maybe THOSE MEDICAL SPECIALISTS ARE THE EXACT REASON WHY EPILEPTICS CHOOSE TO NOT GO TO THEM FOR HELP!!!!! All they have to do is SIMPLY SLIP ON A WET FLOOR AND BANG THEIR HEADS AND THEIR IN OUR SHOES TOO!!!!!!! Then POOF THEIR AN “EPILEPTIC THEMSELVES”. Not that I would ever wish that ON ANYONE!! Just a thought. That is an abuse of authority and power!! OR IS IT EGO AND MONEY?!

      Liked by 1 person

      Comment by Kathy S.B — October 21, 2019 @ 3:54 PM

  5. Hi Phylis, I’m not sure if I was reading that correctly, so feel free to jump in an clarify!

    “So, now, not only did I have epilepsy, I was a prospective CRIMINAL with epilepsy.
    If I had a pacemaker, do you think they’d take my license away? Or cancer, diabetes, etc?
    Would they revoke my license if I had a car accident? Not likely.
    But nooooo. I have epilepsy, so I must be punished.
    Because I drove my car into the back of my garage wall.”

    Ok, 1. did that prang with the garage wall happen during having a seizure behind the wheel at the time? if so, then translate that to being driving out on a public road.

    2. Actually, I know people with brittle diabetes, heart conditions and types of cancers (especially metasticised with the risk of secondary brain tumours, ie risk of szs) and a variety of other medical conditions who DO get their licence revoked. In fact, any condition where there is a high risk of losing conscentration, consciousness, or slow reflexes. It’s common sense.

    I do NOT understand how people consider driving a human right, it’s a privilage, and in all the epilepsy circles I’ve been a part of, the only time we’ve never been sympathetic is towards people who carry on driving after they know full well they’ve been medically banned. We’re not unsympathetic to lousy public transport and just how devastating the loss of a licence can be, but there’s other people out there on the roads, and people who continue to drive knowing full well they are a danger, then they ARE a ‘prospective’ criminal’ as you put it, because they are making the deliberate decision to undertake an act where there is statistically an increased risk of crashing the car. In fact, when said people do end up killing innocent people they are often charged with manslaughter.

    And yes, I did drive briefly, many years ago under an very old system in my country, the driving age coinciding with the onset of my epilepsy. It was 2 year medical ban back then. I did my 2 years, got official clearance and was just about to start professional lessons when it came back and that was the end of driving forever, and it was devastating at the time. So maybe I was lucky, no licence to lose, but enough to give me a bit of empathy and I still have the occassional frustration rant when I’m stranded.

    I think being threatened by authorities like that isn’t the way to go and that’s not on, but having to surrender your licence to make sure you can stay fully seizure free for a minimum period of time is not an attack on your human rights. It’s for the safety of you and everyone around you.

    End of my rant 🙂

    Liked by 2 people

    Comment by Katie — October 21, 2019 @ 4:11 PM

    • Point well taken.

      Yes, I did drive the car into the garage wall having an absence seizure. Or at least I thought I was having an absence seizure, because I don’t remember anything until the air bag slammed me in the chest.

      I agree with your point of the dangers of someone having epilepsy being on the road. But I had been seizure-free for 25 YEARS. (Ya just never know when that beast is going to sneak up on you, do you?)

      And if I hadn’t had a seizure for 25 years, what good is 6 months without driving going to do me?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 21, 2019 @ 5:33 PM

      • “And if I hadn’t had a seizure for 25 years, what good is 6 months without driving going to do me?”

        It’s going to make sure your epilepsy hasn’t returned, that’s what. You wouldn’t be the first to be seizure free for decades and it suddenly comes back out of the blue for no reason. It’s the nature of the beast 😦

        Liked by 1 person

        Comment by Katie — October 21, 2019 @ 9:07 PM

      • Just to clarify, I loved your post Phylis. I was responding to Katie’s comment saying I found her response offensive.

        Your post hit home in so many ways. I’m currently not able to drive either and sometimes you just want to put a hole in your wall.

        Liked by 1 person

        Comment by Sierra — October 24, 2019 @ 10:35 AM

      • Whew. I was hurt when I thought your post related to me.

        Very relieved now.

        Thanks for the clarification.

        Like

        Comment by Phylis Feiner Johnson — October 24, 2019 @ 10:51 AM

    • I was very shocked to read at the end of your response that you have epilepsy. Your comment came across as very harsh and offensive in my opinion. We all have common sense. We understand why we can’t drive, or why we need to go through X amount of months before obtaining a license again.
      But I feel that you are taking her post too seriously. Those of us that lives with epilepsy and read her post can see that a big part of it was venting. Most of us have been in that same position and have our own stories to share. At the end that was the point of her post. For us to share our experiences with each other. Your lack of compassion was incredible.

      Liked by 1 person

      Comment by Sierra — October 21, 2019 @ 10:30 PM

      • Sierra, I don’t agree.

        I was only trying to say that although I had epilepsy and haven’t had it for 25 years, I didn’t see why 6 months without a license was suddenly going to make me a “better” driver.

        Of course everyone is allowed — and encouraged — to vent. That’s part of the reason we’re here. And if you found my post offensive, I’m really sorry.

        Like

        Comment by Phylis Feiner Johnson — October 22, 2019 @ 10:59 AM

  6. I am SO RELIEVED TO HEAR YOU ARE ALRIGHT PHYLIS!! House arrest YES ALONG WITH FEELINGS OF BETRAYAL AND INCAPABLE OF TAKING CARE OF YOURSELF!!!!! There have been points in time where even I had no choice FOR THE LOVE OF MY HUSBAND AND CHILDREN when even I had no choice but to get them into emergency in my town!! TO STOP OR PREVENT THEM FROM POSSIBLE MAJOR HEALTH ISSUES!!!!! What if all we have/had is our loved one who needed to be in now and there was no other way but to take them ourselves in order to keep them alive? Makes me wonder what the powers that be would do? Or WILL DO WHEN ITS THEIR TIME TO NEED ONE OF US TO GET THEM HELP? Thank you for the courage to share you life experience with all of us. 😘

    Liked by 2 people

    Comment by Kathy S.B — October 21, 2019 @ 4:17 PM

    • Well, in a health emergency situation, I’d probably call the police (who, hopefully wouldn’t call an ambulance).

      But the feeling of helpless in not being able to HELP someone you love in a crisis is just crushing.

      That certainly is hell. Worse that being under “house arrest”.

      Liked by 2 people

      Comment by Phylis Feiner Johnson — October 21, 2019 @ 5:41 PM

      • The problem is not everyone has a phone or a cell. It too can almost be considered a luxury in certain segments of society. It just appears as though I’ve come to become content staying safely at home lol.

        Liked by 1 person

        Comment by Kathy S.B — October 21, 2019 @ 5:56 PM

      • What a person does in an emergency is either walk, or call the ambulance. I’ve walked a child with an ear infection, called the ambulance for (usually) me or anyone else . The kids were taught what to do. I have never driven due to financial reasons and, even when I was seizure -free, the side effects of the seizures and the meds for them. I also ask myself the question: if I were in the vehicle beside me and knew about my condition, would I want to drive next to me? I think about the things that I know, the side effects, the lack of focus and poor motor control, the right ankle I broke in five places having the Mother of All Seizures, and decide, Uh…nope. I’m still stuck inside. But I’ve mastered the art of ordering nearly anything online. Right now, there is a box of cat necessities, 50 pounds’ worth, on my porch. I’ll open that baby and bring it in…one piece at a time.

        Liked by 2 people

        Comment by catsissie — October 21, 2019 @ 9:39 PM

      • Catsissie, I applaud your persistence and attitude.

        I also order everything online. And as a matter of fact, I have 50 lbs. of kitty litter in the garage, waiting to be dragged in!

        Liked by 1 person

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

  7. Hi Folks – well, over here in the UK, you have to surrender your license the moment you are diagnosed with “proper” epilepsy – not just the first seizure itself. Then you have to go 12 months without any kind of a seizure before you can apply to have it returned. As I appear to have a degree of drug resistant epilepsy, I have kind of accepted that I am highly unlikely ever to get it back (aged 71!!). You’re right, it is a huge restriction on my liberty – we even had to move back to our original home in the Scottish capital city of Edinburgh which, although I love it greatly, is a far cry from the beautiful cottage we lived in in rural France for 20 years. Without a license, I just couldn’t continue to stay there where there was no form of public transport and I had to ask someone every time I wanted to go anywhere at all. I felt like a prisoner in my own home and my husband felt like a taxi driver!!! So, a year ago, we took the difficult decision to sell up and move back to Scotland. In France the law is the same – 12 months without seizures of any kind. Would I have the confidence to drive again after all this time – I just don’t know!

    Liked by 2 people

    Comment by Margaret Hay — October 21, 2019 @ 4:27 PM

    • It’s sad when you have to surrender your independence — and even your lifestyle — to epilepsy.

      But, it looks like you’re being a real good sport about your very difficult decision.

      If something happened to Arthur, I’d probably move into town or the city because, not only am I reluctant driver, I can’t drive at night either.

      Ever since I got my license back (and this was years ago), I’ve been a very skittish driver and drive only close to my house.

      Driving is no adventure. It’s a means to an end for me.

      Liked by 2 people

      Comment by Phylis Feiner Johnson — October 21, 2019 @ 5:49 PM

      • Well Phylis lol we’re both almost in the same boat. COURAGEOUS 😊🦅🙏🏼😘

        Liked by 1 person

        Comment by Kathy S.B — October 21, 2019 @ 6:07 PM

    • Goodafternoon Margaret 😊. Well there are a lot of thing shake our confidence and foundation sometimes. However not to sounds (too rebellious) lol I figured whatever anyone can do I can TRY MY BEST to do better. Honestly sometimes I win and sometimes I lose, but at least I tried. Even if trying meant not necessarily trying (or driving), but at least having or recovering my own form of independence. Just as a form accomplishment 😊💗 P.S. lol 😂 doesn’t mean I would drive though!! Lol 😂

      Liked by 2 people

      Comment by Kathy S.B — October 21, 2019 @ 6:15 PM

  8. Hi Phylis and Kathy – thanks for your support and encouragement – as always, Phylis! As I’ve said before on the Forum here, I’ve always tried to look for “something” positive out of the bad things that go with having epilepsy. In this case of having to move back to the “big, bad city” of Edinburgh(!!), I tell myself that at least I have Marks and Spencer and John Lewis (our UK equivalent of Macy’s and Bloomingdale’s, I suppose) at the end of a short city bus journey: in France, I had to do everything by mail order – mind you I spend a lot more money this way which doesn’t make my husband quite as happy!!!!!!

    Liked by 2 people

    Comment by Margaret Hay — October 21, 2019 @ 6:32 PM

    • LOL! I “tithe” to Amazon!!! 🙂

      Liked by 2 people

      Comment by Phylis Feiner Johnson — October 21, 2019 @ 6:39 PM

    • Goodafternoon Margaret 😀. I think in this case we both need to WHOLE HEARTEDLY THANK PHYLIS!!!!! So thank you Phylis 😘. However from me “Kathy” thank you as well Margaret 😊💞. My husband and I actually had an exchange student from France way back in the year 2000. I REALLY ENJOYED the teachings and learning we all were able to give eachother for that summer 😘😘💝💝😘🙏🏼🦅💞. Sometimes we just take things and eachother forgranted and never TRUELY take the time to get to know eachother simply as people with their own gifts and appreciate the learning experiences we have to give eachother good and bad 😘💝💕

      Liked by 2 people

      Comment by Kathy S.B — October 22, 2019 @ 3:55 PM

  9. I can think of much worse things to tithe to!! Happy shopping!!

    Liked by 2 people

    Comment by Margaret Hay — October 22, 2019 @ 3:26 AM

  10. I lost mine for a Year when I was first diagnosed, but living in London makes things a lot easier, also you qualify for a free pass for public transport while you are without a licence. Touch wood I haven’t had a seizure since, but if I do it will be 18 Months without a licence…Such a pain..!

    Liked by 3 people

    Comment by Shelly — October 22, 2019 @ 4:12 AM

  11. Hi Shelly – I do so sympathise – it’s rotten to feel “dependent” on others no matter how willing they are to help. As I said, I’ve kinda had to accept that I’m without it for good but I still hate it. Fingers crossed for yours being returned.

    Like you, Phylis, I say 3 cheers for our public transport over here – it is overall just great. As an “oldie” (but goldie?), Edinburgh Council gives me a free bus pass anyhow so I’m OK regardless of the epilepsy but the availability of the service itself has made a huge difference to my life. I feel I’ve some control over my own life for the first time in years.

    Liked by 2 people

    Comment by Margaret Hay — October 22, 2019 @ 12:49 PM

    • Sorry Shelly, I just realised that you already have your license back – so I just hope you can keep it – not least because it will mean that these stupid seizures are behaving themselves.

      Liked by 2 people

      Comment by Margaret Hay — October 22, 2019 @ 12:52 PM

    • I am SO HAPPY TO HEAR THAT FOR YOU MARGARET 😘. Lol I come from a TINCY TOWN in Canada with a “BIG HEART!!” ❤️❤️. More like a “hamlet to yourself Margaret 😘”. But I am also in your boat as to feeling “DEPENDANT ON OTHERS” and I completely agree with you “IT CAN BE AWFUL!!”, but on the other hand every time you do go out it’s a milestone simply because YOU HAD THE COURAGE TO GO OUT!! Alone!!!!! That’s the courage and strength of NOT ONLY TEACHING BUT SHOWING THE WORLD YOU BRAVENESS WITHOUT LIMITATIONS!! GOOD FOR YOU!!!!!!! 😃🦅💞😘😘😘😘😘

      Liked by 1 person

      Comment by Kathy S.B — October 22, 2019 @ 4:03 PM

  12. Hi all if been epileptic for 35yrs now. I’m Nocturnal epileptic & so have to be 12months clear before driving. Iv had my licence emitted & revoked over the years but have always voluntarily given up my licence when iv had a seizure. At the end of August I had 3 Nocturnal seizures & was admitted into hospital. They found out the reason why they happened ( Diarrhea, Dehydration!! ). My GP suspended my driving licence for only 6month as there was a specific reason why it happened. I surrendered my driving licence & got a Disabled train card & bus card too. Just to say thaty thought I had a viral infection that gave me diarrhea but the test were all clear & we realised it was the herbal tea I’d recently started taking that done it.

    Liked by 3 people

    Comment by Leroy — October 22, 2019 @ 1:41 PM

    • Wow. Herbal tea (either directly or indirectly) was the reason for your seizures? And I thought herbal teas “helped”. Just goes to show.

      But, in light of things, it was smart of you to surrender your license, when you did.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 22, 2019 @ 1:55 PM

  13. My daughter just miraculously walked away from her second car accident with a broken sternum and back. Each time she has waited double the amt of time VA requires. I dont think she should ever drive again….its not worth it. She agrees!

    Liked by 2 people

    Comment by Lynn — October 22, 2019 @ 3:52 PM

  14. Funny how a “drivers license” can be a RIGHT OF PASSAGE to some and to others “A MILESTONE OR A SENSE OF ACCOMPLISHMENT WE NEVER WE COULD EVER GET!!”. In essence it’s a luxury (or trophy) to people such as ourselves. To others it’s a cough up of money and to us we almost ARE OVERJOYED IN HANDING MONEY OVER!!

    Liked by 1 person

    Comment by Kathy S.B — October 22, 2019 @ 4:12 PM

  15. Yes I believe it about the herbal teas!! I’ve just always made it a first to learn what I can and can’t consume at all!!!!!!! Especially because I was an epileptic who liked LOTS OF sports!!!!! My thing that SHOCKED ME was we can even fall DANGEROUSLY OW ON SODIUM!! Lol and CHLORIDE!!!! Not even vitamins are safe sometimes!! Just a thought

    Liked by 2 people

    Comment by Kathy S.B — October 22, 2019 @ 4:16 PM

    • A sodium level in your blood that is too low is dangerous and can cause seizures and coma.

      That’s because a lack of sodium causes your body’s blood volume to decrease.

      This, in turn, will lead to a corresponding decrease in your blood pressure level.

      Low blood pressure can also cause your heart rate to increase, as well as light headedness and sometimes shock.

      Low blood sodium levels can also affect your brain, which is highly sensitive to changes in sodium levels.

      Losing sodium quickly is a medical emergency. It can cause stupor, unconsciousness, seizures, coma and even death.

      Unless the cause is obvious, a variety of tests are needed to determine if sodium was lost from your urine, diarrhea, or from vomiting.

      Liked by 2 people

      Comment by Phylis Feiner Johnson — October 22, 2019 @ 5:10 PM

      • Maybe from simply drinking too much fluids a day?

        Liked by 1 person

        Comment by Kathy S.B — October 27, 2019 @ 1:23 PM

      • You really can’t drink too many fluids a day, unless you really overdue it. And then, you’ll dilute the effectiveness of your meds.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — October 27, 2019 @ 1:56 PM

      • Lol yes I FOUND THAT OUT THE HARD WAY!!!!! But what people DOCTORS AND MEDICAL FIELD DON’T REALIZE is exactly how much all that medication MAKES OR MADE ME NOT EVEN THINK OF EATING PERIOD!!!!!!! therefore I was told “not to sweat period!!”. I lost CRAZY WEIGHT in just two weeks. Please understand to short/long term effects of medication on your bodies!! And THE IMPORTANCE OF WHAT YOU ARE CONSUMING!!!!!!! 😘🙏🏼🦅💗

        Liked by 1 person

        Comment by Kathy S.B — October 27, 2019 @ 2:14 PM

  16. Dec. 2016 was my daughter’s last seizure. Just received a letter from the FL Dept Motor Vehicle requiring the following to be completed & returned within 45 days…or else…her license will be revoked?. They want a 5 page medical form completed and signed by her neurologist, a copy of her last EEG results, and lab work results for proof to show her keppra levels are maintained and she is compliant. Is this even legal? Feels way out of line and discriminatory.

    Liked by 2 people

    Comment by Jill Sassone — October 24, 2019 @ 9:45 PM

  17. OMG. I would say that’s more than a little discriminatory. Remind me to never drive in Florida.

    And all of this was to KEEP her license? Not to restore it? (As if THEY could even read an EEG!)

    “All” I had to turn in was a neurologist and a cardiologist’s report. Of course it took them 6 weeks AFTER the due date to get it together enough to process and restore my license. (And no sheriff was threatening to break down their door!)

    But that was after I lost my license. It wasn’t to maintain it! 😦

    Like

    Comment by Phylis Feiner Johnson — October 24, 2019 @ 10:03 PM

    • I don’t even know where to begin with that. Twice, the ER and my neurologist told me not to drive until I had their approval, and both times I complied. I suppose if they thought I might drive they would have reported me, but instead they trusted me. I guess I’m one of the lucky ones.

      Liked by 2 people

      Comment by Marlyn — October 25, 2019 @ 6:29 PM

  18. When I was first diagnosed at 33, my license was taken away for 1 year of being seizure free. I was FIRED from my job for being unable to perform all of the necessary task of my job even though friends and my husband were driving me to and from work.

    Liked by 1 person

    Comment by Jennifer — October 28, 2019 @ 10:20 AM

    • Jennifer, I’d call that discrimination of the first order.

      As long as you are able to perform your job, or one similar to it, employment should not be denied.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — October 28, 2019 @ 10:23 AM

    • I’m with you Phyllis! I have auras giving me a warning, mine are just at night, and I never had one behind the wheel. And every state has different laws so I’m VERY restricted in my new job requiring constant driving in new states. I ended up moving and not disclosing with my new job.
      I was recently in a horrible car accident, not my fault. The man who ran the red light apparently had prior serious traffic violations. Why don’t we go after the bad drivers.

      Liked by 1 person

      Comment by Jennifer — October 28, 2019 @ 10:29 AM

  19. It’s good that you have nocturnal seizures. (As good as that can be!)

    But as someone with epilepsy, you have to be vigilant about not only your own capabilities, but the drivers around you.

    One missed step, and someone could be fatally injured.

    Like

    Comment by Phylis Feiner Johnson — October 28, 2019 @ 10:45 AM

  20. I have been benched twice

    Liked by 1 person

    Comment by Hector J Santos — November 3, 2019 @ 3:54 PM

  21. 😦 😦 😦

    Like

    Comment by Phylis Feiner Johnson — November 3, 2019 @ 3:56 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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