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IT’S ONLY GETTING WORSE

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I have written several articles about how we need to get the word out so that people better understand epilepsy and seizures. I am not sure it is the police and professionals’ fault that they do not recognize what is happening when they see someone having a seizure. If they have never seen a seizure, how can they be expected to recognize one when it happens. We have a duty to work hard to get them the information and tools that they need. Having said that, I keep reading news stories that boggle my mind.

Incredibly, in Poland last month, a teacher actually strangled a child who was having a seizure (1). Kuba, just 12-years-old, was having an episode when his teacher, Jadwiga Piotrowska, decided that her best course of action in such a situation was to strangle the boy...

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SCOTTISH GIRL FORCED TO SLEEP IN CAGE

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Ten-year-old Sadie Fenton Hunt (1) has “West Syndrome,” a rare form of epilepsy that requires a special bed because she often bangs her head against the wall when she has a night seizure (ibid). The special bed was supplied to her by England’s National Health Service when the young girl and her mother were living in Northumberland, England. Because Sadie cannot speak or communicate effectively, that bed was considered a safety necessity in the Hunt household (2).

Earlier this year, Sadie and her mom, Effie, moved to Chesser, a town near Edinburgh, Scotland, to be closer to Effie’s mother. Edinburgh is only 78 miles from Northumberland (3) and is still covered by their NHS service...

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I AM NOT EPILEPTIC

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I had an interesting conversation the other day with my sister-in-law, Ali. She is a “care-giver” in England and she is a regular reader of my blog. She asked, “Why do you always refer to yourself as ‘epileptic?’ You are not epileptic. You have seizures.”

I should point out that Ali has been trained by the English “ETTAD,” or European project to Enable Teachers and Trainers. Their website (1) states “Terminology is important, because words reflect our attitudes and beliefs.” It goes on to state that, “It is dehumanizing to talk of people in terms of a condition. Do not talk about a dyslexic or an epileptic – it is far preferable to say he has dyslexia/ she has epilepsy. (Ibid.)”

It’s a fair point, although, presumably, none of these people are actually living...

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SEIZURES ARE A JOKE

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Once a week I Google “Seizure” and “News” and see what I get. Most of the time, the results are pretty predictable. Someone is touting a new product for epilepsy. Someone is trying to get support for a new medical marijuana bill. Someone makes the local news because some annoying story about how they were mistreated or fired over epilepsy. However, once in a while I find something completely unexpected.

Maggie O’Conner was walking her dog in Cochester, England, when she had a seizure. It happens. As an epileptic I am sympathetic. But the two people who pulled out their iphones to watch her and make fun of her were apparently not so sympathetic (1).

Ms. O’Conner woke up to see the two men filming her...

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EVEN THE SUPREME COURT WAS AGAINST US

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I have written several articles about people being fired or arrested while having seizures. As a result, I have received several emails from readers and close friends asking: “How can it be legal in the United States of America to fire someone for epilepsy?”

It isn’t. But up until very recently it was. Here’s how it came to happen.

In 1924 sterilizing epileptics was all the rage. Three thousand people were involuntarily sterilized in the United States — 2,500 in California alone (1) based on a system designed by one Harry Laughlin. In a continued effort to get rid of “defective persons,” Virginia sought to follow California’s lead and a seventeen-year-old girl named Carrie Buck was chosen to be the first citizen of that state to be sterilized under the program.

Witness...

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ARRESTED FOR HAVING EPILEPSY

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In January of this year, in Connecticut, Robert Marzullo was driving in his car with his sister when he had a seizure and ran into a curb. When the police arrived, he was “slumped over the steering wheel.” The police “gave him to the count of three” to exit the car and then fired a taser into Marzullo’s arm. His sister screamed that Marzullo is epileptic and the officer said, “I know.” The officers claimed that Marzullo still resisted arrest (1).

In Indianapolis, 2013, Randy Lynn had just finished helping his sister clear snow from a sidewalk and he was walking home when he had a seizure. Police saw him and mistook the seizure for being intoxicated. They wrestled to put him into handcuffs, shocked him with a taser and hit him on the head three times (2).

These, sadly, a...

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RIK MAYALL: Falling Down Funny

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Rik Mayall died yesterday. I was a huge fan. In the event you are too young to be familiar with Rik Mayall, or if you are not a fan of British comedy, he was the creator of “The Young Ones.” He played Lord Flashheart in “Black Adder.” He was Drop Dead Fred in the movie of the same name. He was great, a very well respected comedian in the U.K.

Rik Mayall died after a seizure. He became a seizure patient after an accident in 1998 left him in a coma for several days. “Sudden Unexpected Death From Epilepsy” took a comic genius.

(Edit: I originally posted this after Mr. Mayall’s death. Peter Richardson, a friend of his whose son was one of the last people to see him alive said that “it was a seizure of some sort.” Mr. Mayall’s wife now says that it was a heart attack...

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I NEED A JOB

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People look at me and most of the time I look normal. I act normal. To be honest, except for those moments when I am flopping around the floor, I think of myself as a pretty normal guy. Yet I cannot discount those moments as easily as people who observe me on the street do. In reality, society does not discount those moments, either. The minute a seizure occurs, our lives are changed forever. As seizure patients, everyone around us views us differently.

I understand this is a difficult statement to accept. Those who view themselves as the most “easy-going” and “accepting” of people will immediately respond by saying “I don’t do that.” Of course you don’t. You aren’t sexist, racist, homophobic, anti-Semitic or anything else either. You are a wonderful person...

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I THINK I’M DYING

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I went on vacation with some friends last week. One of them told me the story of his neighbor, Patrick. Patrick had died of “Sudden Unexpected Death In Epilepsy” (SUDEP) a couple of weeks earlier. It is a horrible story and, out of respect for the family, I don’t wish to go into much detail. Suffice to say, I contacted the family and they are private people who are dealing with unimaginable tragedy.

The point is, during the course of that conversation with my friends, our talks turned to the subject of death and epilepsy. My friends, none of whom are epileptic, really don’t understand the relationship seizure patients have with death.

Those of us who have to deal with the fact that we might have a seizure today, know that death is a very real possibility every time we have a sei...

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I’M EPILEPTIC AND I DRIVE

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To get social security (government assistance) as a seizure patient you must meet four requirements (1). For the purposes of this discussion, you only really need to be aware of two of them.

One: “We (the government) decide that you cannot adjust to other work because of your medical condition(s).” Also, in the case of grand mal seizures, you have to have more than one seizure a month (2) and/or petite mals must occur more than once a day (ibid).

A seizure patient will lose his or her right to drive after each and every seizure for six months to two years, depending on which state he or she lives in...

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