We're moving! (Sort of)

After some thought, I've decided to change our address. A bunch of us with epilepsy, good bloggers all of us (I hope so), have decided to come together and create a shared blog. And since we all have slightly different perspectives on our conditions, we're adopting a new name:

Epilepsy Empowered.

The subtitle for the blog is: "We are more powerful than what we have." Because we are. Facing up to our epilepsy, and owning it, we empower ourselves. We push on through our lives, and hopefully we can inspire others with and without epilepsy. That's what I think the blog will be about.

So I'll be there. So will Pam, Andrea, Jamie, and Sheri. I don't know just yet what, exactly, the system will be or what things will look like. Give us a bit of time, but I'm sure life will work itself out. It has a way of doing that.

When things are ready, I'll give you the name. But for now, a heads-up. Thanks for listening.

Do You Remember...?

I've always had a bad memory, it seems. Always. I could memorize things, no problem—that really helped on tests. But when it came to remembering that I had to take out the trash, or remembering where I'd left my pen? Utter failure. I was famous for it in my family. (I've been known to forget where I left my glasses. This is not unusual, but it once took me about five minutes of searching to realize that I was wearing them.)

That seems to be common among people with epilepsy. The UK group Epilepsy Action reports that memory problems are one of the most common reasons for people with epilepsy to seek help. (They have a great page on the subject. Have a look.) Obviously loss of consciousness during some seizures prevents you from remembering what happened, but epilepsy can also cause interference with the brain's normal memory-forming processes even in between seizures. The same unusual brain activity that can give your neurologist clues about your epilepsy when you have an EEG can interfere with memory as well. Epilepsy can make us tired, or stressed, or depressed. That doesn't help either. And if your seizures start in the temporal lobe of the brain, where your memory lives, obviously that makes things worse.

Sad man can't remember where the temporal lobe is.

Some epilepsy medications can affect your memory too. Of the five times I've changed medications, three were because I felt my memory and my thought processes going fuzzy. That really scares me, because if I don't have my memories or my thinking, what's left of me? So I fight back by switching medications.

Given that a lot of us can't do much to prevent it, how do we cope? For me, I usually forget things like "Where did I leave this?" and "What did I come here to do?" and "What errands do I have to do?" So one thing that helps me a lot is using sticky notes. Writing stuff down and leaving it every imaginable place really boosts my ability to remember.

Well, maybe not every imaginable place.

If I put something down, I also try and pause for a few seconds and say to myself, "I left my phone on the table. I left my phone on the table." Or if I go into the kitchen to get my wife a drink, I'll tell her, "I'm getting you a drink." Repeating things like that can fix them in my mind better. It doesn't completely fix things, but it does help.

For anyone who's close to someone with epilepsy, please do keep this in mind. We do listen. We try our best. But sometimes, information just leaks out. Please be patient with us. Cut us a little slack when we lose track of things. Maybe you can help us with the memory aids.

And thanks for staying by us. That's what we need most of all.

"It Could Be Worse"

When anyone is going through a hard time, it can be hard to know what to tell them. Someone gets a diagnosis of cancer, or hears that a loved one has been injured or killed in an accident - what can you say to comfort them? "I'm sorry"? "It'll be all right"? "You'll come through it"? "They're in a better place now"? What could possibly recognize the shock and the pain someone is going through, the horrible situation they've been cast into?

As an epileptic, probably the least useful such phrase I've encountered is "It could be worse." You tell someone, maybe someone close, about something that's perhaps destroying your life, or maybe only providing a series of unwanted obstacles. Their response? "Well, it could be worse".

"I had a seizure, I can't drive for the next six months."

"Oh! Well, at least you're not in the ICU. It could be worse."

Well maybe this could be worse. (Photo copyright US Navy?)

Well no, it couldn't. It COULDN'T BE WORSE DAMMIT. Thirty years ago I was in college, healthy, feeling like I could do pretty much whatever I wanted and looking forward to a life of staying that way. I was not looking forward to taking six pills a day, getting blood sucked out of my arms two or three or four times a year before mandatory doctor appointments, spending thousands of dollars a year on medication required for me just to function pseudo-normally - and let's not get into the side effects, we've done that already.

I mean, sure. I don't have the brain tumor the doctors initially feared. I'm not going into the emergency room or the intensive care unit once or twice (or more!) a year. I'm not taking four or five medications, I don't need a bed rail when I sleep, I can even drive in reasonable safety. There are loads of other people I know who are worse off than I am.

But "it could be worse"? What does that do for me? I'm not always as badly off as I think I am, but I'm not always as well as I could be either. I don't need to be babied. I don't want to be babied. But my epilepsy is real, and it has real effects on me, and I need you to get that.

Look, I get that you might not know what to say. And yes, saying something is better than saying nothing. Saying nothing at all is just cold. But you want to know what to say? Try these:

"That's rough. Need anything?"
"I hear you. Can I help?"

Just something to let me know that you sympathize, that you're listening, and that you're willing (sincerely) to be there and help out as much as you can if needed.

Life's not usually hard for me. (Like it can be for my friends Daisy and Nichole.) But it can be, and your recognition of that fact is a very basic way to help me, a way to affirm that what I'm going through isn't insignificant and harmless. Could you at least give me that much?

Baby I Can't Drive My Car

With apologies to the Beatles, at least for those of you who are old enough to remember them :-)

I've told you before about one of my first seizures while living alone. But it wasn't my very first one. That was much scarier.

When I moved out of my parents' house in 1993, I had a gray 1983 Chevy Cavalier that I was really proud of.

Like this one, only the hood actually closed.

It drove my brother and me from St. Louis to the Seattle area, and drove me back and forth to work a lot. A good car. The kind that you'd expect someone to name; but I never actually thought of doing that. (I probably would have named it Henry. Or Lucius.)

So my dad, the dentist, had recommended a dentist friend of his to look after my teeth, and after a while I decided I'd better go see him. The drive down wasn't bad. Parking in downtown Seattle was unnerving—I wasn't used to all those hills. (St. Louis isn't completely flat. Only mostly.) The dental appointment itself was what you'd expect; funny smells and uncomfortable things in your mouth. But I was used to that. It was the drive back that I didn't like.

Everett, where I was living, is about 25 miles north of Seattle, and you'd expect that the quickest way there would be I-5, which passed about a mile from my apartment and went straight through downtown. But having experienced traffic there, I decided to stay away from it and use State Highway 99, which was quieter. Man was that a good choice.

I must have been about halfway home when all of a sudden I felt the familiar tingling and numbness in my left arm and shoulder. I knew I was going to have a seizure, it was going to be the full-on tonic-clonic, and I couldn't do anything to stop it. And me driving fifty miles an hour down a major state highway.

Why, yes. Yes we are.

The last thing I remember even vaguely was slamming on the brake. I could still do that even though I couldn't move my arms anymore. I didn't have any idea of whether that would help, or what it would do, or even if I was actually just imagining it and not really doing anything. I just knew I needed to try and slow down. And then twitch, jerk, convulse, darkness.

Next thing I knew, I was in Group Health Lynnwood Medical Center. I don't remember much about it. I was fine. Not even a Band-aid. Someone had managed (apparently) to get to my car, stop it, call an ambulance, extricate my wallet and see my medical ID, and get me AND MY CAR NO LESS to the hospital. And I was fine. I couldn't have asked for a more amazing miracle. Or could I?

Once I began feeling better (I guess), I was worried about Henry. Or Lucius. Or whoever. After all, last I remembered I was flying down the highway and then jamming on the brakes. Surely something had happened.

But they said my car was in the parking garage. They even walked me out to it. Henry Lucius The car was completely fine. There was no scratch, no dent, no nothing. I was overjoyed! So who had done this for me? The people had left, they said. They had checked to make sure I'd be all right, and then they had left. I drove home, thankful, thoughtful, tired, scared, relieved.

I don't remember a whole lot of details after that. I knew I couldn't legally drive for a year. (That's a long time, in case you feel inclined to try it.) I checked out bus routes, called my insurance company to let them know the car was being parked for the rest of the year, resolved that walking would do me good. Then relaxed and felt thankful that I wasn't one of the 40 thousand or so who died that year of epilepsy and epilepsy-related accidents.

Most people don't get a miracle. Not like that anyway. I was sad that I didn't get to thank whoever it was that did this for me. I sometimes wonder about them. Who were they? Where were they going? Did they mind rescuing me? Do they ever say, "Hey, remember that guy we pulled out of the car?" I'll probably never get a chance to thank them, but it's not unlikely that I wouldn't be here without them. That's humbling.

Tomorrow is Thanksgiving in the US; I'll be leaving work and going home shortly to enjoy the holiday. As I do, I'll be remembering those of you who have stood by me in my epilepsy the last twenty-eight years, whether I know you or not. Whoever you are, whatever your reason—thank you. Thank you for everything.

Matt

Testing Testing Part 1 - EEGs

As I write this first sentence, I'm in the neuro office waiting for my first EEG since changing my meds. For those of you who don't have experience with an EEG, it's basically an electronic recording of your brain activity. A technician pastes 16, or 24, or more wires onto your scalp and hooks you up to a machine that listens for electricity coming into them from your brain. It can be as short as 20 minutes, or as long as 3 days or more. Mine is going to be an hour. 

(Note: For staffing reasons beyond my control, the exam was in fact a "routine" 30-minute EEG.)

The machine looks a bit like an octopus, with all those wires. I unfortunately didn't get a picture of me with the wires on, but I've always thought the EEG machine itself looked cool.

The Machine. Probably without Florence.

Most of the time, you're sitting (in my case, lying) down with your eyes closed. The doctor wants to get a good picture of your resting brain. I always fall asleep. They do need to try a couple of stimulus situations, though. About 1 out of every 30 people with epilepsy (about 3%) are sensitive to bright or flashing lights. So the EEG tech will set up a strobe light right over your face and strobe the light right into your eyes, to see if anything happens. You do get to close your eyes, but the light is only about eight inches from your face so it doesn't seem to make much difference. Then, they'll have you hyperventilate for two minutes. This makes me dizzy and dries out my throat, but doesn't seem to do anything else. Some people have seizures while they're having an EEG. This is very useful to the doctor, I guess; not so much fun to the patient.

My particular EEGs are pretty boring, mostly. Once a year or so, I go into a room, get my scalp measured and marked off with a pencil (which is painful—your scalp wasn't really meant as drawing paper), get wires pasted onto my scalp, lie down on a hospital bed, and then mostly close my eyes and lie there listening to the tech click away with keyboard and mouse. It's a good thing they want you to fall asleep. But they're the best quick view my neuro has into what's going on with my brain, so I deal with it.

Besides, who would miss a chance to get off work to take a nap?

The Epilepsy Foundation of America has (as usual) a really good quickie discussion of an EEG with more information available.

National Epilepsy Awareness Month

November is National Epilepsy Awareness Month in the United States. The Epilepsy Foundation of America is encouraging people to take part in awareness and fundraising events. I've convinced my workplace to do a fundraiser, and I'm going to be tweeting and Facebooking facts about epilepsy throughout the month.

Epilepsy is one of the most widespread of the "invisible illnesses"; it affects nearly 3 million people in the US, and 50 million or more worldwide. Yet research on epilepsy is drastically and chronically underfunded. Please, if you are in the US and you get a chance, consider getting involved in one of the events sponsored by the local branch of the Epilepsy Foundation. We need you and we'll be glad to have you!

Pachygyria, Heterotopia, And Other Weirdness

Do you guys know what the brain looks like?

Not this one. Although I do ask, "Gee, Brain, what do you want to do tonight?"

 It looks like a big wrinkled blob of meat:

 

Yeah, kinda gross.

Still, everything has its place and function, and the brain is really really cool when it works right. Which, of course, means that when it doesn't, things can go really wrong. Including having seizures.

If you look at the sliced-up part of the brain there, you'll see that the brain has two kinds of tissue: the inside is called the white matter and the part around the edges is called gray matter (even though it looks pink to me; maybe someone was colorblind?) The bumpy parts on the outside are called gyri and the cracks in between are called sulci. Oh, and the two halves of the brain you can see? They're connected in a few places, the most important being the corpus callosum, near the bottom of the brain right in the middle.

I couldn't find an actual picture, but this is what it looks like on an MRI.

Bear with me guys; I know you probably weren't expecting an anatomy lesson but I promise this is relevant.

The brain gets sorted into gray matter outside and white matter inside during about the fourth month of pregnancy, and the gyri and sulci develop from about the fourth to sixth month. The corpus callosum starts developing about the fifth or sixth month and continues at least through birth.

Unless of course you're me. Then things go every which way.

For nearly twenty-five years, nobody could understand why I was having seizures. Then my neurologist finally (FINALLY) said, "Let's have a high resolution MRI and see if we can figure it out."

They stuff you in this for 45 minutes. It makes a ton of noise
and magically sees inside your skull.

When the report came back, I read it before the doctor did (I worked in the radiology clinic, so I could do that :-) ) There were all kinds of words I didn't know: pachygyria, dysgenesis, heterotopia. I was a bit scared.

Basically here's what happened: Before I was born, when my brain was developing, that gray matter didn't make it all the way out to the outside of my brain where it belongs. I have big lumps of gray matter on the inside - gray matter heterotopia. Because all that gray matter is on the inside, the stuff on the outside is thinner than it's supposed to be, and my gyri are spread out wider than they should be and the sulci are shallower - that's pachygyria. Finally, it looks like my corpus callosum did not develop correctly. Go back up and look at the picture. See the bulb at the back and the hook at the front? Not there on mine.

Now most people with these conditions, as severe as mine are, have seizures early in life: as early as age 3, and almost certainly by 9 years old. My seizures didn't start until I was 20. I'm lucky there. And very lucky indeed that I didn't experience the intellectual deficits and learning disabilities people with these conditions nearly always do. My neurologist, when he saw the report from the MRI, said, "Go home and thank your parents for your good genes!" The neuroradiologist looked at the pictures, then looked at me, and said "Are you sure this is you?"

So there are a lot of worse things that could have happened to me, and I am thankful every day that they didn't. I did thank my parents for what they had passed down to me, and I have a lot more respect than I did for my brain, which somehow finds a way to function well above normal when by all rights it shouldn't even be able to get to "normal". I feel better about myself, and about my epilepsy, than I did before I knew what was going on.

About 2 out of 3 epilepsy patients, though, don't know why they have epilepsy, and never will. For you guys, I look with awe at your bravery. I really do. And so should everyone. Something terrible has happened to you, for no apparent reason, with no apparent cure, and yet you find a way to slog along through life; even to be happy and smile. You're amazing, you know? Don't forget that.

And you guys without epilepsy? You're great too. But pay attention to those around you. They may be going through more than you know.

---

I want to call out my friend Daisy Robson, a fellow epilepsy blogger. She's recently been in the ICU and is still recovering from having a hideous lot of seizures. She and her mom, in particular, have really gone through hell in the last week. If you could just keep them in mind; pray for them if you pray. They could use it. Thanks!