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A recent troubling incident prompts me to write this.  Maybe a little understanding will prevent what happened to me from happening to another person with epilepsy.  There are many forms of epilepsy, I have gran mal seizures, which are full body seizures while unconscious.  I am fortunate as these have been under control for the past 23 years.  So, no seizures, no problems, right?  Even though one may not have seizures, epilepsy makes itself known daily.

I hope you continue reading, if it saves even one friendship it was worth the time.

The incident.  A very affable person whom I had known in a professional capacity for 15 or more years and who also works in a separate industry that I have done business with on a couple of occasions phoned me one morning.  We had been working together on something over the past few days.  I was asleep when he called.  I answered the phone and he said who it was, both first and last name.  I did not know this person.  I didn't recognize his name nor his voice.  He knew by the pause something was amiss and stated the I didn't know who he was.  I admitted that I didn't.   He then repeated his name and told me his company name.  The link was finally made for me but the damage was already done.  He became very terse and ended the phone call abruptly.  I phoned him back several minutes later.  The first call was terminated.  I left a voice mail trying to explain on the second call.  I then wrote an e-mail.  He never responded.

This is not the first time I have drawn a blank on someone that I have known for a long period and had them walk away never to talk to me again.  When it happens it is like the death of a friend.  My inability to recall things generally happens when they are out of context or I am put on the spot, regardless of how well I know the subject.

Epilepsy is a symptom of an underlying neurological problem.  When someone with epilepsy is not having a seizure they may still have to deal with memory problems of varying severity on a daily basis.  It could be the inability to come up with a word, the inability to pronounce a word, the inability to remember an event that happened, the inability to follow a movie plot, or the inability to remember a person known for some time.  Almost everyone can relate to simple lapses of memory.  A person with epilepsy may have to deal with it on a much more frequent and severe basis.

The largest victim of this ongoing memory problem is the person's self confidence.  Fighting the doubting of oneself is a constant battle.  Wondering how the medications are affecting your life, both physically and mentally can also eat at you if you aren't careful.  I don't want you to think I am sitting here feeling sorry for myself, that is not why I am writing this.  I am luckier than most people with a disability.  I have found love, have two wonderful children that have grown to adulthood, and have had a career that allowed me to retire early.  

Epilepsy, like some other disabilities, is hidden.  People with epilepsy generally walk, talk and look like normal people.  Their brains however do not function normally, even when not having a seizure.  So if you know a person that has epilepsy and they have trouble remembering something, even who you are, cut them some slack, help them to remember, give them some context to make the connection.  Both of you will feel much better if you do.

The link is to an article that explains the memory problems related to epilepsy much better than I can:

Originally posted to ThankGodforAtheists on Mon Jan 31, 2011 at 10:21 AM PST.

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Comment Preferences

  •  My partner has epilepsy (4+ / 0-)

    ..and I sympathize very much. My partner is constantly struggling over to disclose the condition or not, for just the reasons you describe.

    Btw, my partner has had no luck with traditional drugs ("intractable epilepsy" is the term) but has reduced seizure activity by 80% by first going on a strict ketogenic diet, then switching to a low-carb/slow-carb diet. Has been effective for going on 3 years now. Just a suggestion..

    If you can find money to kill people, you can find money to help people. --Tony Benn

    by rhetoricus on Mon Jan 31, 2011 at 10:34:37 AM PST

    •  Thanks (5+ / 0-)

      Glad to hear they are having some success with control.  Good luck!

      •  I have the same disease; (5+ / 0-)

        I have found that if I tell people that I have a "seizure disorder" and then tell them that I have two seizure foci in my right frontal lobe, (I have just told them I have epilepsy and a severe kind b/c it produces gran mal seizures and b/c where it is located also can produce depression) - I do not get the same response as when I said "epilepsy".

        I have only had 6 gran mal seizures in my life (age  40) but I take lamictal/klonopin - both of which can be tiring but if I don't take them, I seem tired bc of the seizure areas also.

        Anyway, I don't seem to have any more trouble remembering names as I do just being tired and unable to focus, and to help people understand I say that the meds for my "seizure disorder" keep me pretty tired and I get a far more sympathetic response.  I have no idea why, maybe some long lingering association between epilepsy and something Freud said, or witches or whatever; I don't care.  As long as people understand, as long as my wife and daughter are safe, I am fine.

        Interesting note; I can tell when I feel "seizurey" as I call it (usually when I haven't had enough sleep) and just like I can tell, so can my dog.  He gets all needy and starts climbing on me, licking my face and whining.  I told the vet that I think he can tell me when I am susceptible and don't drive, the vet gave me certification that "Scrub" is a "people assist" Dog and he gets to live in apartments that say no pets.

        "If you don't have time to do it right, when will you have time to do it over?" Coach John Wooden RIP

        by 4CasandChlo on Mon Jan 31, 2011 at 11:17:50 AM PST

        [ Parent ]

        •  I wonder if you really needed the certification (4+ / 0-)

          for Scrub to live with you?

          Bellow are some "bullet points" from a Justice Dept. flier "Americans with Disabilities Act: Service Animals"

          • Businesses may ask if an animal is
          a service animal or ask what tasks
          the animal has been trained to
          perform, but cannot require special
          ID cards for the animal or ask
          about the person’s disability.
          • People with disabilities who use
          service animals cannot be charged
          extra fees, isolated from other
          patrons, or treated less favorably
          than other patrons. However, if a
          business such as a hotel normally
          charges guests for damage that
          they cause, a customer with a
          disability may be charged for
          damage caused by his or her
          service animal.
          • A person with a disability cannot
          be asked to remove his service
          animal from the premises unless:
          (1) the animal is out of control and
          the animal’s owner does not take
          effective action to control it (for
          example, a dog that barks
          repeatedly during a movie) or (2)
          the animal poses a direct threat to
          the health or safety of others.
          • In these cases, the business should
          give the person with the disability
          the option to obtain goods and
          services without having the animal
          on the premises.
          Under the Americans with
          Disabilities Act (ADA), businesses
          and organizations that serve the public
          must allow people with disabilities to
          bring their service animals into all
          areas of the facility where customers
          are normally allowed to go. This
          federal law applies to all businesses
          open to the public, including
          restaurants, hotels, taxis and shuttles,
          grocery and department stores,
          hospitals and medical offices, theaters,
          health clubs, parks, and zoos.
          • Businesses that sell or prepare
          food must allow service animals in
          public areas even if state or local
          health codes prohibit animals on
          the premises.
          • A business is not required to
          provide care or food for a service
          animal or provide a special
          location for it to relieve itself.
          • Allergies and fear of animals are
          generally not valid reasons for
          denying access or refusing service
          to people with service animals.
          • Violators of the ADA can be
          required to pay money damages
          and penalties.

          •  Wow, I am slightly embarrassed to say that I did (2+ / 0-)
            Recommended by:
            HugoDog, Amber6541

            Not know that.  And, I am actually a trained attorney who has litigated several ADA cases.  I know that I have been asked why I needed him and once I told them, they wanted to see something "official" which was nothing more than a letter from (ironically) Scrub's doctor, saying he was needed.  I did not know that I had a right to have him even without the letter.

            I do know that neither my neurologist, nor Scrub's vet questioned that he would be able to tell and warn me, I have had him since he was 6 weeks old - longer than my wife or daughter and he knows everything about me, if I wake up and throw on a baseball hat, it is a weekend and we are going for a ride, he runs and gets his leash.   Get up and take a shower, work day, he pouts.

            "If you don't have time to do it right, when will you have time to do it over?" Coach John Wooden RIP

            by 4CasandChlo on Mon Jan 31, 2011 at 11:53:43 AM PST

            [ Parent ]

  •  i have the same problem... (5+ / 0-)

    But there is a way to get past the memory problem with strangers: fake it. I do this all the time.

    First of all, never say anyone's name if you can avoid it. I have four or five nicknames I keep available that are universally applicable -- boss, buddy, etc -- that can be used in a pinch.

    Never acknowledge you don't remember something basic. Given time, it will pop into your head during the conversation.

    Do not expect strangers to understand. They won't.

    On the other hand -- NEVER fake it with loved ones.

  •  Good grief. Expect you to remember them (4+ / 0-)
    Recommended by:
    koNko, millwood, Amber6541, jan4insight

    when you are woken out of sleep??

    I don't have epilepsy, but I am completely non-functional if woken out of a sound sleep. I don't even recognize my mother. The only thing that penetrates is some signal of "this is an emergency!" (tone of mom's voice, goats screaming, smell of smoke) and, even then, it takes a few moments for adrenaline to overcome my sleepstate.

    In fact, I've had phone conversations in my sleep which I do not remember.

    There are just some people who war with sleep- it's hard to get to sleep and once finally achieving peaceful bliss, the brain is very stubborn about waking up again.

    Why is so hard for some people to realize not everyone experience life the same way they do??

    I understand about the memory- I had a very sweet dog with barely controlled epilepsy. Whenever she had her grand mals, I'd spend the next week retraining her in basic commands. She knew them, but the seizures seemed to disconnect the command and action. She'd look at me with "I know that means do something, but what?"

    I just wanted to vote in the primaries. Honestly, I am much too liberal to be a Democrat.

    by WiseFerret on Mon Jan 31, 2011 at 10:48:54 AM PST

    •  In my message... (4+ / 0-)
      Recommended by:
      koNko, millwood, WiseFerret, jan4insight

      ...I told him if it had been President Obama calling, I would have responded Obama who?

      My wife, who doesn't have epilepsy, read the article I linked and said, "I have all those symptoms".  

      Like you say, everyone's experience is different.


    •  Where does... (3+ / 0-)
      Recommended by:
      koNko, millwood, 4CasandChlo

      normal behavior cross the line to abnormal behavior is always a question I believe people with epilepsy struggle with.

      •  Most people do not appreciate the "other" symptom (1+ / 0-)
        Recommended by:

        I really appreciate this diary and maybe commented to high early in it, did not mean to get off topic.  The symptom that often accompanies epilepsy, especially if the foci is on the frontal lobe is depression - if untreated.

        And since none of the treatments are perfect, there is some residual depression, at least for me, but nothing like when I do not have my medication.  I describe it as physically hurting, depression.  I feel it in my spine.

        "If you don't have time to do it right, when will you have time to do it over?" Coach John Wooden RIP

        by 4CasandChlo on Mon Jan 31, 2011 at 12:16:09 PM PST

        [ Parent ]

        •  symptoms (2+ / 0-)
          Recommended by:
          koNko, 4CasandChlo

          You're  right, it is plural.  I knew when I wrote this that I was only addressing the memory problem that goes with epilepsy and how it related to the issue at hand.  There are many others symptoms such as depression that are as hard, or even harder, to deal with.  Thanks for your posts.

          •  And I would have written symptoms in the title (1+ / 0-)
            Recommended by:

            Had I not ran out of characters.  There are a lot of symptoms people have no clue about and your diary is spot on.

            "If you don't have time to do it right, when will you have time to do it over?" Coach John Wooden RIP

            by 4CasandChlo on Mon Jan 31, 2011 at 12:32:47 PM PST

            [ Parent ]

            •  The problem (and saving grace) (1+ / 0-)
              Recommended by:

              Most symptoms are also common to other onditions or "normalcy", it's just the combination that defines the condition.

              Of course, with exception of seizures or dejavous, which are unique.

              But the main thing is self-aceptance, because you really can't change the world.

              What about my Daughter's future?

              by koNko on Mon Jan 31, 2011 at 01:37:08 PM PST

              [ Parent ]

  •  one caution (3+ / 0-)
    Recommended by:
    koNko, millwood, Amber6541

    I would caution people to not use their own amateur use of a diagnosis to make the assumption that anything related to an epileptic's mental state automatically has something to do with their epilepsy.  

    For instance, if I were to say to someone, "Mmmm, remind me of your name again,"  it would be irresponsible of that person to just assume that it was something to do with epilepsy.  

    Sometimes things are just forgotten.  

    forecasters of disasters show proofs that show they're right, but you can block out anything counting each fluorescent light...

    by otto on Mon Jan 31, 2011 at 11:05:35 AM PST

    •  agreed (0+ / 0-)

      There can be many contributing factors to any memory recall issue.  So which of my memory problems relates to epilepsy versus normal?  Who knows.  But the daily frequency and severity of the loss is not "normal" and lies elsewhere.  Epilepsy is a known 37 year old diagnosis.  I don't assume it is the center of all my memory problems but it is a major player.

      •  I was being self serving (1+ / 0-)
        Recommended by:
        I have actually had someone on the Dkos in the past make a judgment about my mental ability to think rationally.  The user based his thinking on the fact that I take Phenytoin, and he saw some side effects that he thought indicated I had difficulty thinking.  

        Also everyone thinks that those with E will seize at the slightest flashing lights.  That's something I feel the need to clarify frequently.  

        forecasters of disasters show proofs that show they're right, but you can block out anything counting each fluorescent light...

        by otto on Mon Jan 31, 2011 at 12:43:39 PM PST

        [ Parent ]

      •  We have both. (0+ / 0-)

        Simple lapses of memory just as anyone would, and biologically triggered events.

        Actually, I can differentiate them very well but have learned to treat them the same because on a practical level, the effect is.

        What about my Daughter's future?

        by koNko on Mon Jan 31, 2011 at 01:39:17 PM PST

        [ Parent ]

  •  excuse me if i sound angry.. (3+ / 0-)
    Recommended by:
    geonerd, koNko, Amber6541

    One of the hardest things to deal with for me, as someone with epilepsy, is people who say "oh, I do that too.''

    you don't. it's different. In fact, i have memory problems like everyone else. then i have memory problems connected to epilepsy. it is very hard to explain, but they are totally different. i can tell the difference.

    i have had both gran mal and petit mal seizures. with petit mal, you can go into staring spells. "Oh, I stare off into space too,'' people say to me. I response, don't. you don't's different. and then they nod at me with this knowing look of, "oh, you're just being silly, I know exactly what it's like. i do that too.'' don't. i've never been quite sure why people think they understand the neurological chaos that goes on with epilepsy, and can knowingly say -- yah, me too. i have what you have too. and then, i have a very different, much worse version that is linked to epilepsy.

    and the other horrible thing people say ALL THE TIME: OH! my dog has epilepsy! i dont quite know why, but that always pisses me off.

  •  My wife underwent surgery at the Texas medical (2+ / 0-)
    Recommended by:
    koNko, Amber6541

    here to remove a small malignant scar/growth that was the cause of her seizure in her temporal lobe over 2 years ago.

    She has not have seizure since then but she has this feeling that it will come back.

    I believe the surgery was successful because the doctor mapped her brain before and after the surgery to make sure her memory and speech were not affected and I believe they were not because she talks more than before (just kidding)

    I don’t believe hers was a gran mal seizure, but have you considered surgery? I am not sure, how but I can give you the names of the doctor that conducted the operation. (I don't want to post their name publicly here). They are great.

    I am really praying for you. I can understand where you are coming from.

    God Bless.

    •  it depends on the nature of the scar... (3+ / 0-)
      Recommended by:
      koNko, Engine 08, Amber6541

      what your wife had was seizures as a symptom of another medical problem.

      it's very very rare that you can have a surgery to excise the scar if it is epilepsy. the scar is often too diffuse and too hard to find.

      that is why they remove larger pieces, rather than a scar. and even afterwards, unless they got it all, the seizures can continue.

      the only surgery that works every time for people with epilepsy is something called a split brain surgery, where the basically separate the two sides of the brain so they can't talk to each other. but, there are lot of problems with that.

      so, a lot of times, medicine is the only option.

    •  Thanks but... (1+ / 0-)
      Recommended by:

      no one is opening my head up.  Besides, it has to be very localized to do a procedure like that.

  •  My daughter.. (0+ / 0-)

    has epilepsy.  It has been an up hill battle.  Thank you for your essay.  

    •  How old is she? (0+ / 0-)

      Depending on the type it usually peaks mid-teens to mid-twenties (was in my case) and becomes managable.

      But yeah, opening up with others sometimes is importiant.

      What about my Daughter's future?

      by koNko on Mon Jan 31, 2011 at 01:46:33 PM PST

      [ Parent ]

  •  I have to somewhat disagree (0+ / 0-)

    We Epileptics do have to deal with certian problems - not the least of all the ignorance and fear surrounding our condition and having to internalize our feelings about that - but I'm not sure we are so different than people with other conditions.

    My way is to depend on a routine to manage the practical issues such as medicine, to set reminder alarms on my mobile phone, to carry a small notebook and pen to make myself small note (the importiant thing is to get the habit) and to apologize when I can't remember someone's name ("Sorry! I'm so forgetful!").

    To me the harder part used to be my own fear of discrimination, hiding my condition and feeling inferior about that as you say. I overcame this by talking with my friends and eventually, I guess I finally accepted it myself and then it just became the "new normal".

    So writing a diary is a good step toward shedding those feelings.

    The truth is, most people we meet never know and never need to know, but those close to us should and sometimes they have to be the ones to adjust and accept that, aside from a few symptioms, we are just like anyone else.

    Me: Husband, Father, Brother, Son, Friend, Collegue.

    So ordinary.

    What about my Daughter's future?

    by koNko on Mon Jan 31, 2011 at 01:28:02 PM PST

    •  The point of the diary... (1+ / 0-)
      Recommended by:

      ...was to bring awareness to non-epileptics who may know one that there is more to the condition than having seizures.  Family and close friends have probably been informed of further issues.  Co-workers, etc. may only know that one has seizures but not anything beyond that.  

      It appears you are handling life well and I congratulate you and wish you well.

      And yes, aside from a variety of seizures types, potential memory loss, depression, drug side effects, etc., we are just like anyone else.

      •  Agreed. (0+ / 0-)

        And my depression ended with the realization that, although I was "abnormal" and had a few handicaps, I also have some talents and positive personal characteristis some other "normal" people lack, hence my comment about the "new normal".

        To be honest, we do face general fear and discrimination in society at large and have to live with that while trying to educate and change minds, so I do appreciate your diary from both angles, and it seems there are enough of us willing to speak-up to change a few minds.

        Maybe when we get to DK4 we an form a group to address this subject and others where people need to cope with such health problems. I'd certianly be willing to ontribute a diary with my own thoughts and experiences.

        In fact, why my comment took a dissenting viewpoint is I do want to let people know that we are, pretty much "normal" except that we tend to develop some copings skills others have no need for.

        To be honest, whitnessing a grand mal seizure can be a very scarey experience for onlookers, many of whom feel helpless to deal with a situation beyond their control. Knowing what they can/should do helps, but we do have to deal with genuine human fears.

        "We" including us epileptics and our ocasiuonal fear of the future.

        Yes, I am lucky. As long as I take medication my occasional events are limited to momentary memory loss or at worst, dejavou & disorientation. Things could be and have been worse: when I was a teenager in China, there was not adequate medication at the time so it was a burden to my familly and a problem for me at school.

        But ultimately, facing that pressure proably made me a more understanding person in some respects - I don't judge others by their medical conditions.

        Stephen Hawking being the great positive example for people to consider.

        Just another human.

        What about my Daughter's future?

        by koNko on Tue Feb 01, 2011 at 12:04:24 AM PST

        [ Parent ]

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