Thursday, January 26, 2017

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.

Wednesday, January 11, 2017

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.