Monday, July 2, 2012

Things that make me grumpy

I say "epilepsy." What do you think of?

Did you think of someone drooling in a dimly lit institution? Or someone so sedated on their seizure medicines that they aren't capable of working?

Think again.

Yes, there are some patients who still fit that description. But they're rare. You want to know what most epilepsy patients look like? They look like YOU!

Yes, folks contrary to popular belief, epilepsy patients are out there living normal lives. And there's a lot of them. It's a disorder that affects 1% of humans. So imagine the Rose Bowl stadium in California. When sold out it holds roughly 90,000 football fans. And statistically speaking 900 of them have epilepsy. Some may even be playing on the field.

Current epilepsy patients in my practice include 7 teachers, 3 doctors, 5 nurses, 1 judge, 2 veterinarians, and a lot of other responsible professionals.

Very few diseases have been as maligned over time as this one has. The majority of early cultures attributed seizures to demonic possession. I'm sure many innocent epileptics were killed in horrible fashion because of this. Others saw it as an intentional punishment from the gods. The great Dr. Charcot, founder of modern neurology, reported that in 19th century France epilepsy patients were locked up in the same dark building used to house the criminally insane and mentally handicapped.


Detail from "Transfiguration" by Raphael (1516) showing a child possessed by demons. The boy's posture and eye deviation are typical of partial-complex epilepsy.


You don't have to look too far back in American history to find laws on the books that banned epilepsy patients from marrying or having children. In the mid-90's I even trained under a doctor who still believed that horseshit, and told young adults, just starting out in life, that they should never, ever marry or raise a family. That's a pretty damn devastating thing to do to someone.

Vilifying any person because of an illness is wrong, whether it's diabetes, hypertension, or cancer. But epilepsy is one in my specialty, and I'll make a stand for my patients.

I probably fight harder for the rights of my epilepsy patients than any other group. Several times a year I have to write a letter to a divorce attorney saying that a well-controlled seizure patient is perfectly capable of being a parent, because the ex is saying that it makes them a danger to kids. Or I have to reassure a family that a patient can drive, or work, or travel on a plane. Obviously, there are laws restricting some things, like driving, but the majority of patients follow them and are perfectly good drivers. Hell, they're likely a lot safer than many non-epileptic people behind the wheel.

So what brought on this rant?

Last week the U.S. Supreme Court upheld the Patient Protection and Affordable Care Act (AKA Obamacare). Now this post is NOT about the PPACA. I know a lot of people feel strongly about it in both directions, and if you want to fight about it, go to a website where you can. Because it's not what I'm talking about, or giving an opinion on.

What pissed me off was the reaction of a radio talk show host (who's not a medical doctor).

U.S. Chief Justice John Roberts has epilepsy and (under treatment guidelines) is likely on medication for this (I'm not his doctor). Big deal. So are a lot of other people.

But, as usual, there are some who'd rather smear than respect an opinion. Conservative commentator Michael Savage went on record last week as blaming Roberts' vote on - surprise - his epilepsy treatment (!) saying his writings showed "cognitive dissociation." He noted that drugs used for epilepsy "can introduce mental slowing, forgetfulness, and other cognitive problems."

Yes, Mr. Savage, they can cause these problems. You can also find similar side effects listed for most blood pressure medications, statins, and many other drugs (which, given your age of 70, I suspect you take at least one of) yet I'm not going to say your comments are due to medications. The side effect list of any drug is HUGE. But that doesn't mean everyone who takes it gets them. Quite the opposite.

My point is this: You're certainly entitled to your opinion. But just because you disagree with a man, don't go blaming it on his medications or health. It's a step backwards for all the epilepsy patients out there trying to lead responsible lives in the face of biases like yours. And, I suspect, if he'd ruled the other way you'd never have made such comments.

Since you apparently don't feel people being treated for seizures are capable of making rational decisions or serving in a responsible capacity, I'm leaving you with a list of people who have (or are highly suspected to have had) epilepsy. Perhaps you've heard of some.

Tchaikovsky
James Madison
Napoleon Bonaparte
George Gershwin
Bud Abbott
Julius Caeser
Harriet Tubman
Vincent van Gogh
Neil Young
Lindsey Buckingham
Edward Lear
Prince
Alfred Nobel
Danny Glover
Socrates
Lord Byron
Hugo Weaving
Dostoevsky
Joan of Arc
Florence Griffith Joyner

Last, I should also mention former congressman Tony Coelho, who has the disorder. He was the primary sponsor of the Americans with Disabilities Act (1990). As a young man he wanted to be a priest, but was banned from such by his epilepsy. He also lost his driver's license and health insurance because of the diagnosis.

During his first run for congress (1978, which he won) his opponent tried to paint him with the same insulting brush, asking voters how they'd feel if their representative was at a White House meeting and had a seizure. Mr. Coelho responded, "I knew a lot of people who went to the White House and had fits. At least I’d have an excuse."


56 comments:

Patrick said...

I am as conservative as they come, but Michael Savage was, is, and will forever be a jackass. He's in conservative talk radio because there's money to be made, the more controversy the better.

A pox on his house.

Anonymous said...

Dr Grumpy,
As a new pharmacist who once hid his epilepsy from those around him... I want to say THANK YOU. I now gladly tell people about the medicine I take, and how it has affected me. I love to clear misconceptions that people have, however I am rarely as eloquent as this post.

Anonymous said...

I entirely agree with your post. One question though:
In dogs, epilepsy is considered inherited, although not in any clear pattern like recessive/dominant.
As far as epileptic patients having children, is the trait likely heritable?
I'm sure it must be a difficult decision for people who have conditions that might be passed on, to have children or not.

Anonymous said...

Reminds me of when Jean Chretien was running for Prime Minister of Canada and his opponents ran a TV ad saying he wasn't qualified because he was Bell's palsy and it makes him look funny.

SMOD said...

Good on you.

Anonymous said...

Well done, Doc! And what about those people using anti-seizure medications "off label" for other conditions like migraines (you mentioned BP or lipid control)? Or does that not count because they are not using them for epilepsy, or migraines or (enter condition). Or of course the old, "Well, my condition is different or under better control?"

Years ago I wouldn't use the Flex Spending (FS) my school district provided. Instead of being "manned" by an outside company it was done in house by one employee. In order to get your money you had to submit RX receipts that would have to include the drug name and how much YOU paid for it. At that time we were trying every available medication to treat/control my migraines. That included medications that were primarily used for depression (which I was not and so what if I was) and narcotics for the really bad days (and no I didn't work on the days I had to take those). So, I, like so many other employees opted out of FS for that reason. While the person taking care of the program wouldn't and couldn't share the info, who’s to say if her boss, the Superintendent of Schools were to say, "Let me see the FS (or School Board Member) information," she had no job security, no union protection, or anything of the sort and would have to turn that over.

Since then, they started using an outside agency (too many people opted out) and while there's still no guarantees for those employees....they do have a better chance of their information remaining safe.

Thanks for writing this, Dr. Grumpy!

Marni said...

Bravo! I got chills reading that.

Anonymous said...

I really enjoyed reading this. Thanks for your compassion, insight, and understanding.

Sara / Aryanhwy said...

Thank you.

My now almost-3-year-old nephew started having seizures when he was 1.5 years old, and about 8 months later was diagnosed with Ring-20 syndrome. He's already got a rough road ahead of him: There's no need for it to be made rougher by all the jerks out there (though I'm sure that it will be, unfortunately).

Anonymous said...

Bravo Dr. G.

Sara / Aryanhwy said...

RE: Anonymous 6:54 AM.

It depends on the cause of the epilepsy. My nephew's resulted from a freak genetic mutation; it's rare enough that researchers are unsure whether the mutation is inherited/inheritable, but his parents were both typed, and neither of them have the mutation.

Grumpy, M.D. said...

Epilepsy can be inherited or acquired.

Anonymous said...

One reason (there were more...) behind my divorce was my ex refused to allow kiddo's seizures to be treated because Wikipedia suggested that the seizure meds would cause mental illness. Yeah ummmm no. At least the judge got a good idea of what I was dealing with Guess who has sole medical decision making authority now? Kiddo stopped having seizures (untreated, sigh) before things finalized but I will never know what damage (if any, to be fair) was caused by his bias over 3 years of seizures. A pox on the house of all bigots and deliberate fools.

Packer said...

Having seen the comments (which were not limited to just Savage in the internet sphere) I wondered if you would comment. You did not disappoint. Nicely done.

Lisa said...

"Vilifying any person because of an illness is wrong, whether it's diabetes, hypertension, or cancer. But epilepsy is one in my specialty, and I'll make a stand for my patients."

Thank you!

Anonymous said...

Thank you. While I am as liberal as they come, I had much the same reaction to the media questioning Michele Bachmann's fitness to serve as president due to her migraines and migraine meds, as I too suffer from migraines. If one needs to use a person's medical condition to smear them, I have no need for them or their opinions.

Grumpy, M.D. said...

The thing with Bachmann's migraines pissed me off, too. I'd actually started writing a post about it, similar to this one, but accidentally deleted it, and never had time to go back and re-write it.

bobbie said...

AMEN!!!!!! Brilliantly said.

Anonymous said...

Well said, Dr. Grumpy. I gladly passed along your blog to all of my friends. The word needs to be passed on.

Moose said...

Amen.

I regularly meet diabetics who hide their disease (whether type I or II) because of perceptions that they "caused" their own disease, are simply too lazy and stupid to not get it. There are many people in the general public who seem to have no problem going up to a diabetic and explaining to them how they're going to die "too soon" and it's all their own fault. It's also hard to get employers to understand the dangers and issues involved. Once, after a very bad, very low blood sugar at work, I walked into a wall. My boss thought it was the most hilarious thing he'd ever seen and ignored my pleas for help while laughing his fool brain off. I've heard tales far, far worse than my own.


Then there are the people with a mental illness who hide it or don't get treatment because of stigma. It's still considered some kind of moral failing to have even a simple depression. I know people who are convinced that SSRIs are "Happy Pills" and refuse to take them for their depression, convinced it will change their personality. I know of someone, treated for a mood disorder for many years, whose ex-parent-in-law declares publicly that depression doesn't exist, it's just an excuse for laziness and lack of moral character.

This is, I believe, one of the reasons the 1st world USA has 3rd world health care coverage -- because people think that being ill is some kind of failure in life, instead of just a normal part of life. You hear it every day, "I don't want my tax money to go for someone else's preventable disease!" The usual examples given are diabetes and lung cancer. Except diabetes is mostly genetic, and, despite what the mass morons believe, not caused by what (or how much) you eat, and lung cancer happens to lots of non-smokers.

We, as a society, can have compassion for our members who get illnesses, or be "I have mine, screw you" jerks. Sadly, we usually choose the latter.

Nett said...

A few years back, Orrin Hatch was talking with the then President of The Epilepsy Association of Utah. He told her how he had become committed (dedicated not institutionalized) to helping people with Epilepsy. The epiphany came after he witnessed the Late Teddy Kenendy's seizure on the Senate Floor.

Sadly, sometimes, that is what it takes to change an opinion, personal involvement. I am saddened by such moronic comments, but that really is what they are: stupidity with a global audience. Tragic.

My favorite thing to shock people with: Have you had Deja Vu? Kudos to you Dr. Grumpy. I thank you and my Boy thanks you.

Mad Jack said...

Michael Savage makes his living by saying outrageous things that, he hopes, will get people all spun up. People who are spun up pay attention to Michael Savage which is vital to him keeping his current position, right along with the lifestyle that he enjoys.

I think you should emphasize a few things here. You correctly state that: The side effect list of any drug is HUGE. And it is, but most people don't know how the side effect list is derived and that knowledge is very useful. You also state, again correctly: But that doesn't mean everyone who takes it gets them. Quite the opposite. Put that closing phrase is a 128 point font and animate it. People (like thos listening to Michael Savage) really don't realize that the side effects might happen but are very, very rare.

This is a good post you wrote. Please encourage people to stay on their meds.

Burks found not guilty by reason of insanity in shooting of fellow officer

...Ms. Burks was diagnosed in October, 2008, with complex partial seizures, or a form of epilepsy.

Burks refused to listen to her doctor or take her meds.

Michelle Dulak Thomson said...

Dr. Grumpy,

Thanks for writing this. It's been said many times before, but rarely this well.

Moose,

Yeah, I think the author of Listening to Prozac has a lot to answer for.

Trish said...

Great post, Doc - well spoken. Sharing...

Maridyth said...

Anyone who makes uneducated comments about another's disability/medical condition/mental state of mind/etc. needs to just keep their mouth shut. Mudslinging tends to be so rampant, especially in the political world. If we could all just accept one another as beautifully different, maybe this world would be a much better place. Being the same as everyone else is boring. We need to embrace what makes us all different! Just my opinion.

Anonymous said...

Rock on Grumpy!

RxMomma

Anonymous said...

When I was at secondary school in the UK about 35 years ago, there was a girl I knew slightly who had epilepsy. She was expelled from the school because of insurance reasons and sent to a school for disruptive students. She was so unhappy there she shot herself. I met her a couple of days before she died and saw how utterly miserable she was. I would hope that we live in more enlightened times....

The Evil Receptionist said...

Thank you for this. My son started having seizures at two, and we tried nine different combinations of meds and the Ketogenic Diet before we could get his seizures under control. He was prone to drop attacks and wore a helmet. More than once, people would shuffle away from us because they were afraid of "catching" what he had.

Thankfully, he's been off of meds for almost two years now (he's 11, nearly 12) and while he does still have some delays, he's a remarkable kid who can do whatever the other kids can do.

Thank you for advocating for your patients.

Anonymous said...

Damn, you left Dostoyevsky off your list! How could you?

WonderfullyFi said...

Bravo

Grumpy, M.D. said...

He is on the list! I just used one of the alternative spellings.

Vivien said...

My primary school best friend had epilepsy. In grade 6, her meds were changed so many times, she had to repeat. Today, she is awesome, owns her own home, drives and plays sport at a high level of competition.
Mr Savage is an ignorant ass wipe who deserves nationwide public humiliation.

Anonymous said...

Hi Dr. Grumpy,

Thank you so much for your comments. My best friend from college has seizures, and I'm horrified at what she, as a talented and responsible person, has had to go through to keep her job.

Melissa

SongBird said...

I found this charity collecting knit dolls for kids diagnosed with epilepsy - interestingly enough, the post about it was about three below yours about this in my RSS feed reader.

Purple Stitch Project

I'll be making several and sending them along.

SongBird

Brad said...

Well said, Dr. Grumpy. I am a 4th year medical student and it is my wish to one day fight as fiercely for my patients. The head of the neurology department at my school once said, "I am an angry and aggressive advocate for the patient." Clearly you two share the same spirit. Bravo, sir.

Anonymous said...

Its sad that the majority of epileptics portrayed in the movies are the dramatic "falling on the ground, frothing at the mouth and shaking violently" type since there are so many other types out there. But I guess that's more visually dramatic.
Your post reminded me of the a young guy I graduated junior high alongside. Mark was actually a couple of years older then us but had been held back due to an intellectual disability. He had a very severe form of epilepsy; so severe he wore a crash helmet constantly and had an aide follow him everywhere carrying a bean-bag. The other kids tended to avoid him because they thought he was weird. I took the time to talk to him and quickly found he had the most gentle, quiet, shy soul. I guess we bonded because I had a physical disability and had also experienced being shunned and mocked by other kids.
I remember just how proud Mark was on graduation day when he stepped up alongside us...Mark died two months later after having a seizure in the bath-tub.

Anonymous said...

Oh, so he is. My apologies.

BeadHappy said...

You did great Dr. Grumpy. Thank you.

Anonymous said...

Another name for your list - doctor and Nobel laureate J Robin Warren

Captain Crab said...

Thanks from an epileptic!

kathy b said...

Great post Doc.

That's Great post, Doc.
Not postdoc

Anonymous said...

Why can't more doctors be like you? I went untreated for migraines for years because doctors wanted to blame my problems on womanly anxiety, a bias I believe which is taught in medical school and which Mr. Savage (who btw is shunned by conservative talk show hosts because his personality is like large grained sandpaper). I could possibly be shunned even now for taking an anti-seizure medication off label to treat them. Mine btw before treatment could get so bad that they would resemble strokes. You should have seen people running from me in case they caught the lazy and brain degeneration.

Ms. Donna said...

As someone who has survived (with just about everything working) a stroke, I applaud you. This is a sore spot for me as I am about to visit my primary care doc in 30 min because my state, commonwealth or whatever got wind of the stroke.

Now the DMV requires my doc to fill out a form. Being a cautious doc (the best kind) she needs me to come in outside of my 2X-year appointments to fill that out. She does a basic exam fill out the form, has her staff fax it back.

I understand the state, commonwealth or whatever being cautious, but perfectly healthy people get strokes, too! Why don't they have to get a form filled out.

...OK, off soapbox ...

Anyway. Mr. Savage needs to be checked out carefully by his local DMV. I suspect he's had some brain damage.

Neuroscience PhD said...

Thanks for taking a stand for those with epilepsy. Because of people like you, my 6 year old daughter is growing up in a world where her seizure disorder is considered to be just another health concern like allergies or asthma, rather than an ostracizing condition.

Frantic Pharmacist said...

Great post. One of our customers was very frightened because her 20-something son had suffered an unexplained seizure. The football coach of the University of Minnesota had a seizure on the sidelines of a game at about the same time. I was actually surprised to learn that 1 in 10 people may have an unexplained seizure in their lifetime, whether or not it is chronically treated as 'epilepsy.' There shouldn't be a stigma attached. As for the idiot Mr. Savage -- I wouldn't expect any better from the likes of him.

Anonymous said...

My brother had epilepsy and there was a TON of stigma back in the day. He had been diagnosed as an infant and my parents were told to institutionalize him (they didn't).

M said...

My first summer as a Camp Director, a child at my camp had a seizure. He's triggered by splashes of water in his face, and as much as you prepare for it it's frightening. But, G runs and plays just like any kid and is in no way affected by his medications. Lord help his mother though-- he wants to be an Olympic swimmer.

Mrs J said...

This just breaks my heart, no one should feel that alone. I raised my boys to know that a person is not to be judged by their condition or lack of but by their character. It helped that their stepdad was quadroplegic and he encouraged them to ask any question and learn about the condition. He passed away in 98 and they grew up to treat all people equally.

Anonymous said...

kudos grumpy. did raphael really paint a boy? ok... gynecomastia...but those hips?

Anonymous said...

Thanks!

I read the news of what Savage spouted off in another venue and immediately thought 'somebody sue the pants off that jerk' because clearly Mr. Roberts' personal and confidential medical information had been so made so widely available that the information was been broadcast on the airwaves.

And, then I thought about how in this modern day and age that things came to be that people thought that having epilepsy made them any less able to make a sound decision.

And, then finally, I concluded that 1. if Mr Roberts had let it publicly be known that he has epilepsy that he has probably done more for funding for brain disease than he ever realized in publicly making a decision about government involvement in health care/treatment options, or 2. if Mr Roberts had not let it widely be known that he has epilepsy, he perhaps has to a less extent done more for public perception of specific jackasses on the airwaves than anything anyone else could have done for an integral concept of American sensibility of fairness and support of someone who might be facing societal 'underdoggedness'.

A Japanese friend of mine had been a great soccer player until he was hit on the head, which caused epilepsy. He didn't want to be labeled as someone who was 'not right in the head' and at his young age had trouble adhering to his prescribed medical treatment, and making regular anti-seizure appointments for labs and assessment.

Not taking meds caused no end of problems. Life got better for him when he realized he had a choice of being a person with epilepsy or 'an epileptic'.

Anonymous said...

Very educational post and you brought up things that I had never even thought of. I didn't realize that epileptics felt like they had to keep quiet about their disorder like those of us with mental illness do, because of the stigma.


You sound like a great neurologist that really advocates for their patients, even though they say and do dumb things at times.

Lena said...

I was never diagnosed with epilepsy (err, I don't think--I should try to find my medical records) but I suffered from petit mal seizures as a child until around puberty, as did my older sister and my mom. I'm an adult who's been through all kinds of experiences, and still, my worst memories are those of people's reactions when I'd have a seizure. So thank you for this post...people are still so ignorant.

I know it's gotten better. When my mom went through it, she'd be punished and/or mocked for "spacing out." It wasn't until she had a grand mal that it occurred to anyone that something was wrong.

Brit said...

Thank you! My father-in-law has epilepsy, and for a period of time we suspected my husband did as well. He (my father-in-law) is a successful businessman, a religious leader and a great parent. There is nothing villainous or mentally slow about him. And no his epilepsy did not cause them to stop and worry before having kids. Currently his epilepsy means a few doctor appointments and some daily pills. Truthfully it is not that big of an issue in his life.

Anonymous said...

Wow, thank you from an epileptic and I had to get a letter from my neuro for driving. He acted like he's never been asked for this, but now I know better. I wish you could be my neuro.

Aeris said...

Yes, some (but not many) types of epilepsy are inherited. Also, both seizures and anti-seizure meds are dangerous for a fetus in a pregnant mother.
However, intelligence (ie stupidity) is also inherited. Poor driving is more dangerous to a fetus. Drugs and alcohol and smoking are more dangerous. Diabetes is awful.
You see my point.

Asal Sepassi said...

Thanks Dr. Grumpy, its nice to have someone stick up for epileptics. I've had professors tell me I shouldn't be a doctor (it's too high stress for epileptics) and neurologists tell me there's no stigma to epilepsy anymore.

Thanks for making me feel less crazy.:)

 
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