Purple Day… Awareness…

purple day

It’s purple day again… March 26th… Epilepsy Awareness…

 

A day to reflect… a day to look forward in hope… a day to help raise awareness of such a misunderstood condition…

 

You can’t swallow your tongue during a seizure. It’s physically impossible.

You should NEVER force something into the mouth of someone having a seizure. Absolutely not! Forcing something into the mouth of someone having a seizure is a good way to chip teeth, cut gums, or even break someone’s jaw. The correct first aid is simple. Just gently roll the person on one side, support their head, protect from injury, and make sure their breathing is okay.

DON’T restrain someone having a seizure. Most seizures end in seconds or a few minutes and will end on their own. You can protect the person from injury by following simple first-aid guidelines.

Epilepsy is NOT contagious. You simply can’t catch epilepsy from another person.

Anyone can develop epilepsy. Seizures start for the first time in people over age 65 almost as often as it does in children. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.

Most people with epilepsy CAN DO the same things that people without epilepsy can do. However, some people with frequent seizures may not be able to work, drive, or may have problems in other parts of their life.

People with epilepsy CAN handle jobs with responsibility and stress. People with seizure disorders are found in all walks of life. They may work in business, government, the arts and all sorts of professions. If stress bothers their seizures, they may need to learn ways to manage stress at work. But everyone needs to learn how to cope with stress! There may be some types of jobs that people with epilepsy can’t do because of possible safety problems. Otherwise, having epilepsy should not affect the type of job or responsibility that a person has.

Even with today’s medication, epilepsy CANNOT be cured.

Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn’t work for everyone. AT LEAST 1 million people in the United States have uncontrolled epilepsy. There is still an urgent need for more research, better treatments and a cure.

Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer’s, and traumatic brain injury.

You CAN die from epilepsy. While death in epilepsy doesn’t happen frequently, epilepsy is a very serious condition and individuals do die from seizures. The most common cause of death is SUDEP or Sudden Unexpected Death in Epilepsy. While there is a lot we still don’t know about SUDEP, experts estimate that one out of every 1000 people with epilepsy die from SUDEP each year. People can also die from prolonged seizures (status epilepticus). About 22,000 to 42,000 deaths in the US each year occur from these seizure emergencies.

What happens in a seizure may look different from one person to another. However, seizures are usually stereotypic, which means the same things or behaviors tend to occur in a person each time they have a seizure. The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.

People with epilepsy are usually not physically limited in what they can do. During and after a seizure, a person may have trouble moving or doing their usual activity. Some people may have trouble with physical abilities due to other neurological problems. Aside from these problems, a person who is not having a seizure is usually not limited in what they can do physically.

<http://www.epilepsy.com/learn/epilepsy-101/facts-about-seizures-and-epilepsy&gt;

 

Four years have passed since we have joined the not so exclusive club.  Four years realizing that there are still so many ways that misinformation exists… so many ways that more glamorous conditions are funded and information is given out.  Four years since Adam found my little girl laying on the floor at the bottom of the stairs (thank goodness she was sitting three steps up) in a tonic clonic seizure.  We have come a long way in four years… but we really haven’t.  I look at my babies with pride but I know that it is a specter that will shadow them forever.

 

Holding the proclamation

Advertisements

Reflections On Purple Day 2012

So… it is the day after Purple Day 2012.  Yesterday I wore my Anita Kauffman T-Shirt and my purple Buff headwear… I was reflecting on Adam’s week last week in the video EEG room… trapped… with only marginal responses.  The doctor suggested it would be a good idea to take pills.  Skinny butt said that, if he had another big seizure, he would, but unless he had one, or could have a definitive diagnosis, he would not take them.

Jump forward three whole days.  Ironically… on Purple Day… the International Epilepsy Awareness day… He had another major seizure.  He went to spend the day with his friend at a local large university.  It was a day like any other.  Late afternoon… my cell phone rings.  It’s Adam.  Adam NEVER calls me.  He texts me… he sends me jokes… he never calls…

My first thought… he got hurt or mugged…

Nope.  He had a seizure.  Sixty miles from home.  Thirty miles from me.  I know he’s 20, but he’s my little boy.

How do I find one skinny little (6 feet tall) boy on a huge college campus?  You keep calling since he is awake and kind of alert and see if he can help you navigate.  Fortunately his friend got out of class and helped, too.  I was never more relieved than when I saw them walking across campus… his friend steering him the way I used to when he was little and playing with his game boy.

So… now we start the Lamictal and see if that keeps him from seizing again… and we start counting officially… we are one day seizure free for him… 19 months seizure free for Amandya… the adventure  continues…

Starting To Turn Austin Half Marathon Purple

Went for a ‘run’ this morning.  It’s 40 degrees.  It’s raining.  I’m determined to be ready for the half marathon on February 20th… one day shy of the seizures that led directly to Amandya’s diagnosis.  With any luck at all… 9 days after we reach the 6 month mark.

Saying that I know is tempting fate…

My ‘run’ this morning wasn’t as long as I was hoping, but the cold got to my problem child arm and I caved.  I made it just over 3 miles.

I’m pulling together my outfit for the run.  Shirt is coming in the mail that I will wear… I’m keeping an eye out for Dankin leggings… tights… whatever they are called… that are purple.  I have purple socks that I think will be good enough to keep my feet warm… and my hoody shoud be here either today or first of the week… yay.

It kind of irritates me that epilepsy (since we have an epilepsy foundation somewhat locally) isn’t one of the popular charities… so I am going to be a one woman band wagon.  I keep thinking that, given the fact that I’m ‘running’ with feet considerably puffy and wrists that ache on a good day, maybe my being in your face would be a good thing… at least inspire someone other than Adam (who seems to think I’m a big deal anyway)…

all in due time.

Brick Walls Hurt

I’m not sure, quite, what I was expecting… but continuously running into brick walls hurts a lot lately for some reason.

I am trying to find a venue for Purple Day 5k.  It is to the point that I am considering shortening the name…. since I’m getting ABSOLUTELY nowhere with Round Rock.  I finally got bent this morning (thank you work for giving me the extra day off) and pushed until I got a human at the parks and recreation department.  Not that it was a good thing… actually, it was kind of a way sucky thing… they told me that they had a better thing that MIGHT be going on in the park that weekend and I couldn’t plan on having it that weekend at all.

Okay… is there another place…

Well… you could try but it will cost you $55 an hour for police plus $17 an hour for their cars and you need at least 2 of each (humans and cars) to handle traffic IF you can find a place that “we” will approve but it isn’t likely.  And well… we won’t even consider talking to you about what the next steps are until after you turn in the paperwork and the $50 (oh wait… you can’t do that because we are TRYING to redo the forms… well… you can submit them twice with two different $50 fees).

There are no events in the whole month of march on the calendar.  So I guess maybe really is a maybe.

So… now I’m struggling to find a location… again.  And I’m now looking at Georgetown to see if they are more user friendly.  I’m trying to see if the hospitals can help, too…

I can’t get the local Epilepsy Foundation to accept any help from me (but they are WAY TOTALLY understaffed… gee, I wonder why… could it be because they ignore people who knock on the door to help?).  We are already in July and they haven’t quite figured out if they are even having a November race for Epilepsy awareness month… hmmm… volunteered to help with that, too… but… well… they don’t need planning help but maybe if they actually get around to having one I can volunteer to help out at the race… maybe…

Why don’t people try to be activists?  I wonder.

I turned in my entry to try to be the Face of Purple Day 2011… The question was what does Purple Day mean to me…funny… I was limited to 100 words… It was hard to find a way to tell them what they mean to me.

What do they mean?

They have given me the support that I need in this fight.  Michelle Caplan emails me and she always seems to know when I’m at the point where I want to beat my head against the wall.  She makes me smile when it is really hard to smile.  Purple Day (purpleday.org) has never turned away anything that I think I might want to do to raise money or awareness.  They have been there to listen, to talk, to allow me to flex my fledgling wings of activist in any way that I can figure out to flex them.  What do they mean?  They mean that I have a virtual lifeline when I’m feeling really low.  I want desperately to raise this money for them…   and that is why I feel frustrated at the brick walls, slammed doors and flat out ignored communications that I get and I feel like I get.

No… I won’t give up.

If I have to create the outer-mongolia purple day 5k… I will raise awareness for Purple Day and for Amandya and for everyone who doesn’t understand, anyone who is being diagnosed… anyone who is suffering the ignorance, stigma and fear of being a person with epilepsy.

okay…

I will put my soapbox away and try to find more help out there somewhere…

Running A Half Marathon

Well, I did it again (or is that Oops, I did it again???)… I signed up to “do” the half marathon… no, not the princess half… I AM GOING TO DO THAT ONE SOMEDAY!!!… I wonder if they will ever have a purple princess…

I’m signed up to do the Austin Half Marathon Feb 20, 2011 (a mere month before Purple Day).

I’m trying to figure out how I can raise money for purple day during the race….

and I’m trying to convince myself I’m not an idiot.

I’ve figured out that running like this is kind of like giving birth… I remember how much it hurt doing it last time… but you know… it would be nice to do it again…

Purpleday email update…

I got this email this week from the purpleday people…

The Purple Day 2010 Slideshow is here! Visit the Purple Day (www.purpleday.org) homepage to view incredible photos from around the globe!
A special thank you goes out to everyone who submitted photos from Purple Day 2010. We could not have done it without you! We would also like to thank Kara DioGuardi (Bug Music, Inc.), Marti Frederiksen (Sienna Sienna Songs), Universal Music Group, and Canadian artist Suzie McNeil for the inspirational song “Believe”.
Purple Day 2010 was the largest global epilepsy awareness day ever! Oh, and the best part? It is only growing bigger! If you have not already, please check out the Ambassadors of Purple program and apply to become a Purple Day ambassador in your region.
Thank you again to all of our fantastic Ambassadors, Partners and other epilepsy advocates for creating the buzz that got the purple message of epilepsy awareness heard globally.
Visit the Participants Page to see the phenomenal support we received this year and visit our Media Page to check out Purple Day media coverage from around the world.
Please join us in celebrating Purple Day 2011! Plan your own Purple Day event or bring purple power to your school or workplace. For a list of event ideas, please click here.
Questions? E-mail events@purpleday.org.
Thank you for supporting epilepsy awareness around the world. Together, we can make the globe purple.
Sincerely,
The Global Purple Day
Planning Committee
www.purpleday.org

Feeling like a failure

Not sure if I’m feeling like a failure exactly, or maybe just like everything I’m trying to do is pointless.

We are 3 weeks from our last seizure, so that is good.

Adam is getting ready to graduate, so that is… what it is… good and bad both.

I got my membership accepted at the Epilepsy Foundation (that only took… 3 months).  Really… it takes THREE MONTHS to join a support organization.  I realize they are probably way understaffed but geeze… thanks for being there…

OH… and I got an email (form letter, not even a good mail merge form letter… thanks for the PERSONAL touch… or even PRETENDING you read my mail) from Senator Kay Bailey Hutchison.  I tried contacting HER back in February (again… it took a QUARTER of a year to bother to read my email) to try to declare March 26 Purple Day in Texas.  I guess I should be flattered that someone as important as she is bothered to even have some peon in her staff send me a response, but… really… if you can’t be bothred to do is sooner, don’t even bother.  All it does is prove how unimportant we, the people who elect you, really are.

OH… and the Visitor’s bureau can’t help me… at all… in any way… with the Purple Day 5k.  We are also not important enough to draw people to stay in hotels, so we don’t count to them.  THIS one I at least kind of understand but I was actually told that we weren’t important enough so we didn’t get any help.

I am not working on the city administration people… with a dejected heart…

Previous Older Entries