MARCH IN WASHINGTON, D.C. IS MORE THAN CHERRY TREES, IT'S ALSO FOR PEOPLE WITH EPILEPSY

     Not many people know that March 26th is EPILEPSY AWARENESS DAY!  Tiffany Kairos and everyone else with epilepsy knows.  That is the day we walk through Washington, D.C. asking everyone to be more aware to epilepsy. The National Walk for Epilepsy was a dream for Tiffany to attend.

    Tiffany had her first seizure when she was sixteen.  When she turned twenty-two, Tiffany finally was officially diagnosed with epilepsy after having uncontrolled Grand Mal, Absence, and Complex Partial seizures.

     More information on different types of seizures:
http://www.webmd.com/epilepsy/guide/types-of-seizures-their-symptoms

     The year Tiffany planned her trip to walk in Washington, D.C., she found herself making a trip to the hospital instead.  She started having multiple back to back seizures and ended up in ICU.  Having Chris, a strong and loving husband, helped her recover in time to make it to the walk.  He also was there with her every step.  Tiffany wrote this,

     "Sometimes when we think things are falling apart, sometimes things are in actuality falling exactly into place. Epilepsy is without question a difficult challenge. Yet, I'm thankful for all that it has taught me and continues to teach me each day. Educating and advocating for this cause that I live with is something that I love to do and I plan to do so long as I live until a cure can be found for us all. We are in this together. "
     Tiffany started TEN, The Epilepsy Network.  She uses TEN to spread Epilepsy Awareness and to give information to keep everyone up to date.  The Mayor of Cincinnati, Ohio: Cleveland, Ohio: and Dayton, Ohio along with the Governor of North Carolina declared the month of November as Epilepsy Awareness Month.   They received a letter from Tiffany asking them to bring awareness to epilepsy.

Tiffany Kairos is one of my HEROES.  Thank you for all you have done for EPILEPSY AWARENESS!!

I WISH I THAT TYPE OF EPILEPSY, ODD HUH?

     Some people say music comes from the heart.  Other people say
music comes from the soul.  I know someone who writes music form his brain.  My friend, Guy Stoker, writes music and songs following a seizure.  There hasn't been any written before or during a seizure.  Most of his songs are all in reference to the experience of having EPILEPSY.
     Other than writing music, Guy Stoker has written articles that have been published in journals.  One article is in the journal Epilepsy and Behavior 2013.
     His albums, Ictal Variations and Although You Cannot See Me, are on iTunes and CD Baby.  His album Ictal Variations was reviewed by Nicola Swanborough in 2014.  Mrs. Swanborough is with the National Epilepsy Society.
     The Arts Project Epilepsy Foundation Minnesota will feature the Ictal Variations album, and Guy will be giving a video conference lecture at the launch of the event.  Beyond Seizures was an epilepsy art exhibition held by London Brain Project held in 2014 and featured Ictal Variations as one of the exhibitions.

     Not able to stop and smell the roses, as the saying goes, In 2008 The North Devon Branch (Guy's support group) was awarded Epilepsy Action National Branch of the Year.

     Guy Stoker is another amazing person that doesn't let EPILEPSY keep him from showing his TALENT.  Every time I hear his music or talk to Guy, I am a little jealous.  I know that sounds odd.  I stare for thirty seconds during my seizures.  When I come out of my seizure, I thank goodness do go back to what I was doing.  I WOULD LOVE TO WRITE MUSIC!

PAGEANT CONTESTANT AND MARATHON PARTICIPANT IN A WHEELCHAIR

     Pamela Bell is strong willed and persistent to get what she wants.  She is a mother of two sons and a grandmother of four.  Pamela was diagnosed with CAUDA Equina Syndrome making her paraplegic.  The nerves in her lower back (between T-10 to T-12 disks) are damaged due to an injury.  She can stand for a few minutes but is not able to walk.  This makes her paraplegic and mobile in a wheelchair.

     Rapid eye movement had been bothering Pamela for years.  The doctors she saw wanted to say, "It's all in your head".  Not until last year after having a video EEG did they finally diagnose her with petit mal seizures.  You can find video EEG information here:

     http://epilepsy.med.nyu.edu/diagnosis-treatment/eeg/video-eegmonitoring#sthash.RtTBe2G9.dpbs

 

   During this time Pamela was proving that her wheelchair didn't keep her from achieving goals she had set for herself.  She participated in the Wheelchair Marathon Roller for the Wounded Warriors in Jacksonville, NC.  Every year in Asheville, NC there is a Miss Wheelchair NC Pageant.  Pamela has been a contestant  in 2007, 2012, and 2014. She had her first grand mal seizure last year.  Her doctor thinks it is stress related.  Every year Pamela goes with a group called Life Rolls On to the coast.  She catches waves on her surf board.
 
      Now she has her own store called Vera Armetta's Design.  There she designs wedding gowns and formal gowns for ladies in wheelchairs and regular gowns.  The dress shop is in N.C.

                                                                                                                                                                                       

             

     

     

     

BRYAN FARLEY IS A PHOTOGRAPHER WITH A CAUSE

     It takes a twinkle in the eye to know when to capture the image you have been waiting for.  Bryan has that twinkle and teaches a class in California when he isn't traveling finding eventful activities throughout California.  He doesn't travel just to get the pictures of a lifetime to brag about.  He has a cause.  He writes a blog about epilepsy and shows it through his photographs here: http://bryanfarleyphotography.com/blog/ 

     Bryan, like millions of others, has epilepsy.  He raises his voice and shows his cause through his photography.  Every year in Washington,D.C. there is a walk to raise money and awareness for epilepsy.  I have never seen anything being mentioned about the walk on the Nightly News with Tom Brokaw or the Today Show.  Bryan will post many pictures of people walking or even running.  Some people do not even appear to have epilepsy.  Rick Harrison from the Pawn Stars walked in March this year.  You can see Bryan's collection of pictures here: http://bryanfarley.photoshelter.com/gallery/2014-National-Walk-for-Epilepsy/G0000SrIg6Xxoas0/C0000CF6b.6Zv53Y.

     Bryan is a HERO to me for what he has done for EPILEPSY!!  Please take time for me and him to read his blogs or view his photography web site:  http://bryanfarley.photoshelter.com/ .

Please, everyone if you would leave a post on his site that would be wonderful and appreciated. 

     

 

 When your fifteenth birthday comes you can't wait until Driver's Education!  The day you turn sixteen you go straight to the Division of Motor Vehicles!  Of course you pass the test.  You sit straight and tall, and smile pretty when they take your picture for your license.  Either you got a car for your birthday, or you just want to show off your license while you are working to buy a car.  You have DRIVING PRIVILEGES.
     People with uncontrolled EPILEPSY DON'T!!  Who knew that?  People should say thank you because we don't want to drive and have an accident.  No one needs to get hurt.  One thing though,we hate waiting for our "chauffeurs" .

      I can list plenty of embarrassing reasons:
            1. when you make someone wait, you feel bad
            2. you punched out on time at work, but leave late because you don't drive
            3. after an appointment, you either stand outside or sit back down in the waiting room
            4. people ask out of sympathy "do you need a ride" when they see you waiting
            5. you make appointments around other people's schedules

     Don't feel bad for people with EPILEPSY.  We are STRONG!  Ask anyone and they will tell you like I will, "I am stronger than you think because of everything I have had to go through."  Well, I ought to say numbers 1-5 are about me.

Watching Chef Dennis, David Amerland, and Joshua Berg I posted G+ helps us to communicate with new people since we can not come and go as we please.  DRIVING PRIVILEGES!

Roxanne Davenport, "Seize"ure The Day!