Monday, November 09, 2009

Talking About SUDEP

It is National Epilepsy Awareness month. Here are some of the participants at our local walk for Epilepsy, yesterday, in Virginia.


ep⋅i⋅lep⋅sy 
 /ˈɛpəˌlɛpsi/
Pronunciation [ep-uh-lep-see]
a disorder of the nervous system, characterized either by mild, episodic loss of attention or sleepiness (petit mal) or by severe convulsions with loss of consciousness (grand mal).





Talking about SUDEP-Sudden Unexplained Death in Epilepsy

SUDEP is caused by a sudden, spontaneous cardiac or respiratory arrest in an otherwise healthy individual with a history of seizures.


John Travolta's son died of SUDEP, although they don't say that, because Scientologists don't admit to the existence of certain medical disorders. Florence Joyner--aka "FloJo", the Olympic runner, and martial arts master, Bruce Lee, are also believed to have died from this disorder. It is on the frontiers of medicine, and has only recently been recognized and researched. Many doctors are still unaware of it.



Next to me is my friend, Jen. Her 7-year-old son Ben also died of SUDEP. Our daughter JoAnne and our granchildren, Chase and Clare, were very strengthening for us.

We are in the awkward and uncomfortable position of being the bearers of bad news. Of the 150 people present, all of whom either have epilepsy or are parents of someone with epilepsy, not ONE of them raised their hand when I asked them if they had ever heard of SUDEP.

We had never heard of it either, till the day after my son went to Heaven. But ignorance is NOT bliss. I WISH I had known. Things might have been different. That's why we decided to do this.



Pictures of Joey--trying to communicate his vitality, vibrancy and how he lived. He had epilepsy, but epilepsy didn't have him. Our son viewed his seizure disorder as an inconvenience and did not define himself by it. He knew he was in good company with Dostoevsky, Van Gogh, Julius Caesar, Napoleon, and Neil Young. This was our way of encouraging the many kids who were there whose lives are limited by seizures.


Of course, it's painful to then tell them that they are also at risk for sudden death. This was not easy to do in any way. Life is very messy.


The somber audience.


These parents already have fears for their children, and we just added to the pile. This is when you've got to be thankful for the human capacity for denial. It helps people go on when there is just too much else to think about.

They were warm and gracious and thanked us for coming. We were drained. We hope we raised their awareness and their vigilance, and prevented tragedy in some way.

And, thanks to our circle of friends, we raised way more money for the Epilepsy Foundation than anybody else. By a long shot.
That part felt really good.


Proverbs 11:14
Where there is no guidance the people fall,
But in abundance of counselors there is victory.

9 comments:

sharon said...

I like that you had a stroll instead of a walk. I am positive you touched a nerve to people about
and will give them pause for thought. We need to do what we can
which ever way it is. We found out last night they had a cancer research walk yesterday and there was no notice that we saw. It would have been good for us. Was sort of a strange day. You were on our mind from sun up to sun set. Praying that it brought you some peace.

karen gerstenberger said...

Thank you for doing this for others. I know how hard it is to get up in front of others and be "that family," the family that no one else wants to be. It takes great courage and inner resources to do it, and the fact that you did honors Joey in a deeply meaningful way. Raising funds AND awareness will help others. And I loved your remark about the human capacity for denial; ain't it the truth, sister!
All of the emotions that you listed in the previous posting seem to be so "normal" in this abnormal life. I am very proud of you and your family, for your loving hearts and your courage.

Jeri said...

You all are amazing! Looking at the pictures took me back to Joey & Rachel's road trip which seemed like such a short time ago. Cliff & I loved keeping up with their blog and living vicariously through them. Thanks for stepping out and using your pain to give an awareness of SUDEP. May God's many blessings be upon you. Love & miss you!

flowergardengirl said...

Yea!!!!!!!! Gosh you sure raised a lot of money!! That is so fantastic. And correctly you raised awareness. Seems like they stood in shock and maybe denial a bit and if they are like me will go home and google the daylights out of it.

I take Topamax twice a day and don't envy anyone who has to but it keeps me on an even level. It affects my vision, makes soda taste like it's flat, and makes your feet and hands tingle non stop---but my brain functions pretty good. Well seems I'm fooling most folks anyway. But I'm thankful for it.

I have a mild form of epilepsy from a head injury I received as a child. My form just causes auras with flashing lights.

This injury also gave me macular degeneration( which will eventually get worse but is not changed in the last six months). The Topamax is helping the seizures and the migraines but the white lights still flash at times and then I can be sleepy for a long time afterwards.

I have this form: http://news.stanford.edu/news/2009/april15/med-epilepsy-041509.html

I never knew I even had these seizures until an eye dr and an MD finally put it all together 2 years ago after 5 years of trying to figure out what was causing some crazy symptoms I was having. At first they thought it was detached retinas. So now we know I guess....

The pictures of Joey made it real for the families. They needed to see that Joey was active and going like crazy one minute---then.......you weren't at all prepared. They need to listen.

Thank you for walking for the cure!!!!!!

Gannet Girl said...

I was just driving home from running some errands and wondering when you might post about your day, knowing that you must be completely drained and exhausted. You are heroes, you know. What a gift you gave those other families, even though it may not feel like it to them.

Akul's mama said...

I just came across your blog and I am so very very sorry for your loss. I lost my three day old son and it has changed me so much. I cannot even imagine the pain you feel at losing a child with whom you have so many memories. I know that you had many dreams for his future just as we had for our Akul and your dreams and ours have been shattered. Warm hugs from one grieving mom to another.

Liza's Eyeview said...

love Joey's photo on the header and the one on the "walking" post. attempted many times to leave a comment but always getting distracted..... I am sure you are very exhausted at this time. Just want to give you a cyberhug....

Anonymous said...

A little story: "Joey Saves The Day!"
I was driving home from work in Lahaina and picked up a lady hitchhiking on the same day as your walk. I know what you're thinking, "Gary is this a habit with you?" Well actually it's not. I avoid hitchhikers on the most part but for some reason I felt a need to pick her up. Okay, she was a bit younger than me and blonde. She was a bit out of it and not sure why, hard life to be sure. She said she was heading to Big Beach and I said I could stop her off at the Pilini entrance to Kihei. From there she could hitchhike the rest of the way to Big Beach. We talked along the way. I asked her about Jesus and she said she had accepted Him as a child although her life style now wasn't reflecting that. We continued our conversation and she commented she was taking medication so I pushed the privacy envelope and asked her what the medication was for (confirming her being out of it). She said she had epilepsy. At that moment I felt like I was somehow walking with Karen and Joe. She explained to me that she had three or four seizures a month and all during the night. My heart immediately went out to her as the friends I dearly love lost a child to this disease. We came to the entrance of the Piialani and I kept on driving, not so much for her as much for a unique young man lost to this disease more than a year and a half ago. A man from parents that I love and respect immensely. Joey was here too, along for the ride! It took me another half hour or so out of my way.
She couldn't thank me enough as we arrived at Big Beach. She patted my on my back and I said don't forget Jesus loves you! Her name was Anatasia! His name is Joey!

Jennifer Stumpf said...

Thank you for raising awareness. I had never heard of this disorder until reading this post. My husband has a history of seizures although he has not had one since he was a child.