Purple Day

March 26 is Purple Day. Various epilepsy societies throughout the world are asking supporters to wear purple. How does wearing purple advance epilepsy awareness? Hopefully, enough people will be wearing purple that other people will get curious and ask what all the purple is about.

What it is about is that 50 million people throughout the world have epilepsy, yet there is very little funding available figure out the many root causes of epilepsy and how to manage the conditions. Even worse, few people know what to do if someone has a seizure, and many people are very fearful of those who have epilepsy. Check out Purple Day to find out more about the origins and goals of this awareness day, and the Epilepsy Foundation for more information about living with epilepsy.

I need hints and encouragement

This coming week, Carapace and I are going to go where gimps and spazzes aren't supposed to go. Yes, we are going to the beach. The plan is to camp one night, and then spend the next night in a motel so we can go home without carrying sand in our intimate regions. The motel bit I'm not worried about, as long as the room is reachable without stairs. Nor am I worried about the camping bit. Car camping is completely within my capabilities and skill set, and it won't be like we'll be away from civilization.

No, what worries me is the actual beach. I so want to be there, feeling the salt water bounce me around. But I do worry. I can't exactly swim worth crap anymore, with my shoulders always ready to slip right out of place and the one leg's tendency to float in a direction different than the rest of me is going. I don't know...how does one keep a leg from floating sideways? And then there is Carapace and her seizures. They've been pretty much under control, and I do have shoreline life vests for us both. Those are supposed to flip an unconscious person face up. I haven't used one since I was a little kid, so I don't really remember how they worked in reality. I'm hoping that with the life vests, I won't tire as fast and Carapace will have a margin of safety. Oh, and they are orange, which will make it easier for Carapace to see me despite the world being a particularly sloppy impressionist painting when she takes off her glasses. Oh, and I got her some dark goggles, too, which I hope will be good enough for her photosensitivity to not be triggered. And sunburn-prone me will be covered ankle to wrist.

So, anything else I should do to make sure we have fun and that I won't spend our time fretting? What experiences have you all had? Tell me!

Days 3 and 4, and this looks like it will be worth it

Wednesday, Carapace came to work with me and she made sure I ate just like I was supposed to. I had a piece of cheese, some proscuitto, and an onion for breakfast; beef, chicken, sour cream, lettuce and a bit of cheese and salsa for lunch; then a dinner of beef, zucchini, and mushrooms. For snack, I had chicharrones.

Today I didn't eat breakfast, what with needing to go to the store and to pay some bills before heading off to work. But lunch was roasted chicken, baby greens salad, a little cheese, and sour cream. I haven't eaten dinner yet tonight either, as it approaches midnight, though I just had a snack of chicharrones and sour cream with habanero salsa. I also had a Coke Plus today, which I had never had before. It is a diet Coke with vitamins and minerals. Other colas have been doing this for decades, but Coke just started this recently.

I split the Coke with Carapace, who was at work today, too, even though she thought she wouldn't be able to make it as she was anticipating a major brain meltdown. But it never happened! Sure, she was in pain and lost partial control of the right side of her body, but she never once went unconscious! Oh, let her tell it herself....

Butter that bacon, boy

(This salad in a bacon cup is from Not Martha)

Monday, I started the Atkins diet. I'm doing it with my daughter, Carapace, who is trying it to see if it will limit her seizures. Me, maybe I will lose weight. Or not. I'm mostly doing it as moral support. It's hard being on a diet all by oneself, and a lot easier if family participates.

I am doing it without the knowledge or blessing of my doctor, who is concerned about my cholesterol levels. Am I concerned about my cholesterol levels? No. They tend to run high in my family, yet no one seems to have any troubles until their 70s. The doctor wants me to stop eating bread and butter. As he told me what he wanted me to do, I kept pointing out that I don't eat wheat products, therefore, I have very little reason to use any sort of spreads. In an entire year, I don't quite finish off one quart of cooking oil or a pound of butter. Whatever caused my cholesterol to be too high for his satisfaction, it wasn't my diet. At least, by being on Atkins, in a couple of months, I will finally have something to give up. And I look forward to that day, because Monday's meals were tasty but way more fatty than I am used to.

Breakfast: 2 eggs, cooked in butter, one cup half decaf coffee
Snack: boiled egg
Lunch: A fatty pork chop and 2 cups of lettuce, with an olive oil dressing and cheese
Dinner: Who can eat dinner after all that fat? It took me all afternoon to eat lunch.
I have drunk a lot of water today, which I don't normally do, so I guess that's a benefit that I wasn't expecting.

I did breakdown and have a handful nuts, which I understand are a bit too carby for this stage of the diet. But I wasn't driving 30 miles home without something for my brain to burn.

Tomorrow, I'll try for more cheese and some zucchini. Doesn't that sound nice? Zucchini with cheese and proscuitto.

I'm really looking forward to more vegetables in two weeks time.

Looking for Something to Read?

Go read Happy Fun Spaz. Encourage her to keep writing.

Thank you.

Isn't Yahoo in violation of the ADA?

According to Yahoo's service agreement, there is no recourse for people who have seizures from exposure to their blinking ads except to stop using their service:

A SMALL PERCENTAGE OF USERS MAY EXPERIENCE EPILEPTIC SEIZURES WHEN EXPOSED TO CERTAIN LIGHT PATTERNS OR BACKGROUNDS ON A COMPUTER SCREEN OR WHILE USING THE SERVICE. CERTAIN CONDITIONS MAY INDUCE PREVIOUSLY UNDETECTED EPILEPTIC SYMPTOMS EVEN IN USERS WHO HAVE NO HISTORY OF PRIOR SEIZURES OR EPILEPSY. IF YOU, OR ANYONE IN YOUR FAMILY, HAVE AN EPILEPTIC CONDITION, CONSULT YOUR PHYSICIAN PRIOR TO USING THE SERVICE. IMMEDIATELY DISCONTINUE USE OF THE SERVICE AND CONSULT YOUR PHYSICIAN IF YOU EXPERIENCE ANY OF THE FOLLOWING SYMPTOMS WHILE USING THE SERVICE: DIZZINESS, ALTERED VISION, EYE OR MUSCLE TWITCHES, LOSS OF AWARENESS, DISORIENTATION, ANY INVOLUNTARY MOVEMENT, OR CONVULSIONS.

This is ridiculous. It would be a simple matter for them to include a preference for non-blinking, non-strobing ads and backgrounds. Shame on Yahoo.

Subway Hero

I suppose everyone has heard the story of Wesley Autrey's heroic act by now. And I certainly have no intention of arguing that Autrey was anything other than heroic when he rescued Cameron Hollopeter from the oncoming train.

But...

If you ever come across a person having a seizure, you don't stick anything in their mouths. Never, never, never. This is something that my daughter lives in fear of, that some helpful soul will come across her while she is defenseless and stuff a spoon in her mouth. Stuffing a pen in the mouth is equally Not the Right Thing to Do. If you don't believe me, believe the Epilepsy Foundation.

So, what should you do? It's easy, and you don't need to be particularly heroic:

Move anything dangerous out of the way.

If the person is in a dangerous place, like the middle of the road or the edge of a subway station or face down in a puddle, move the person having the seizure out of the way of harm, just like you would for anyone else you find in a dangerous place.

Wait with the person to keep panicky sorts of helpers from stuffing things in their mouth or doing CPR or other inappropriate things.

Do not restrain the person having the seizure.

Seizures generally don't last more than five minutes or so, but afterwards, the person who had the seizure will likely be tired and maybe a bit fuzzy. Ask them if they would like a chair, a drink, a bite to eat. Ask if they would like you to stay with them for a bit. At this point, they will be able to tell you what they need. Believe them when they say they're OK.

Now, isn't that easy?

Thanks.