Let’s Talk About It…

It’s November! You know what that means… It’s time to talk about it!

Talk about what? 

Talk about Epilepsy of course!

Our daughter Meghan has Epilepsy so it’s important to us to spread the word about Epilepsy! 

We want to educate YOU! 

Did you know there are 65 million people worldwide that suffer from epilepsy or a seizure disorder of some kind?

Over 3 million of those people live in the United States and 300,000 of them are children under the age of 15!

Those are pretty astonishing numbers! 

Let me put it another way:

The number of people living with epilepsy or a seizure disorder is GREATER than the number of people living with Multiple Sclerosis, cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined!

You know what else is crazy…

One third of those 3 million people  live with uncontrolled seizures, because right now there isn’t a treatment available to them that works and for 6 out of 1o of those people the cause of their seizures is unknown.

So what do I want you to know about epilepsy?

I want you to know:

  • Epilepsy is a medical condition that is not contagious, but talking about it should be!
  • A person having seizures is not possessed by the devil!  A seizure is an electrical misfiring in the brain and can cause many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs. ~Epilepsy Foundation~
  • NEVER put something in a person’s mouth when they are having a seizure! Contrary to popular belief a person can’t swallow their tongue.  You are more likely to get hurt or hurt the person having the seizure, by trying to force their mouth open.

*Video courtesy of The Talk About It Foundation

  • Treat a person who has seizures no differently than how you’d treat any other friend or family member!
  • If you ever have a seizure find yourself an epileptologist you feel comfortable with and talk about your options.  You may only need a small amount of medicine to control your seizures! However there are other treatments available like VNS and even surgery.

Most important TALK ABOUT IT!  Don’t be afraid to ask questions or go online, there are lots of really great places to get information:

So are you gonna help me get the word out?

Cool!

Here are some tweetable facts courtesy of Ken Lowenberg of The Talk About It Foundation.  Use the hashtags #EpilepsyAwareness

#Epilepsy  #TalkAboutIt

If someone is having a seizure, NEVER put anything in their mouth! #Epilepsyawareness

If someone is having a seizure, NEVER hold them down or restrain them in any way! #epilepsyawareness

#Epilepsy is NOT Contagious but talking about it should be. #epilepsyawareness

#Epilepsy is NOT a mental illness. #epilepsyawareness

65 MILLION people around the world live with #epilepsy.#epilepsyawareness

NEARLY 3 MILLION people in the United States have #epilepsy. #epilepsyawareness

BETWEEN 4 AND 10 OUT OF 1,000 people on earth live with active seizures at any one time.#epilepsyawareness

There are 200,000 new cases of #epilepsy in the United States. #epilepsyawareness

ONE-THIRD of people with #epilepsy live with uncontrollable seizures because no available treatment works for them. #epilepsyawareness

For 6 OUT OF 10 people living with #epilepsy, the cause of their seizures is unknown. #epilepsyawareness

50,000 people die from epilepsy-related causes in the United States every year. #epilepsyawareness

90 PERCENT of people with #epilepsy live in developing nations. #epilepsyawareness

9 OUT OF 10 people with #epilepsy living in Africa do not receive proper treatment. #epilepsyawareness

Even One Seizure Is To Many!

 Here at Gone Bananas we’re spending the month of November talking about it!

Talking about what you say?

Talking about Epilepsy!

 November is National Epilepsy Awareness Month!

 Our Meg lives with epilepsy and after about three years of no seizure episodes she all of a sudden started having them again this summer.  So in the last couple of months we’ve taken some trips to All Children’s Hospital where she’s had a few EEG’s and an MRI to try to get to the bottom of why they’ve suddenly resurfaced.

It’s been tough couple of months for Meg because she’s now at an age where she’s knows and trying to understand it all is difficult, but she’s amazing and perseveres through everything with a smile and a positive attitude.  I LOVE that about her!

So every November and March we talk about it! 

 We talk about it because we don’t ever want Meghan to be afraid to talk about it!

We talk about it, because we’ve learned there are still so many myths associated with Epilepsy!

Did you know some people still believe Epilepsy is the work of evil spirits? 

 Crazy right?  I know!

 But unless we talk about it they will never know any different.

Here are some great facts written by:  Kenneth Lowenberg

(Resource: www.epilepsy.com and www.Talkaboutit.org)

FACT: If someone is having a seizure, NEVER put anything in their mouth!

No one can swallow their tongue, that is a very persistent myth we have to end. Trying to put something in someone’s mouth while they have a seizure could significantly hurt the person. It could damage their jaw or teeth. And it is simply NEVER the thing to do. 

 FACT: If someone is having a seizure, NEVER hold them down or restrain them in any way! 

 When someone has a convulsive seizure, their legs and arms will move in a jerking fashion. This is the muscle response to the excessive electrical discharge happening in their brain. As long as the person is not in any danger, like near an object that can hurt them, it is important to let the seizure take its course — usually just a minute or two. Restraining the person may hurt them. Just make sure they are safe, and stay with them until the seizure ends. 

 FACT: Epilepsy is NOT Contagious. 

There is no way anyone can ‘catch’ epilepsy. Not possible. Ever. 

FACT: Epilepsy should NOT be a barrier to happiness and success. 

 While epilepsy varies in treatment and severity on an individual basis, one should always do their best to keep a positive outlook and strive to live the best life you can. As Greg Grunberg says, “We all have something.” And that’s true. We each face our own challenges every day. And it is up to our personal strength and our community of support in family and friends to help us through whatever we face. 

 Another reason we talk about it is because Epilepsy needs to be put on the map in the same way Autism and Cancer have, so it can receive funding for research and we can find a cure!

FACT: There are 3 million people in the United States and 50 million people around the world who have Epilepsy.

FACT:  One third is the number of people with epilepsy who live with uncontrollable seizures because there is no available treatment that works for them.

FACT:  6 out of 10 is the number of people with epilepsy where the cause is unknown.

FACT: Their are 50,000 deaths related to and 200,000 new cases of epilepsy each year.

One seizure is too many, let alone one life lost to epilepsy!

It’s time to start talking about it!

 

 

 

 

Sometimes we forget…

… to teach the people nearest and dearest to us!  We’re so busy advocating and trying to get rid of stigma’s that we forget to educate and empower our own family with the same knowledge we want so feverishly for everyone else to accept.  Today my guest blogger is my sister-in-law Denise from Run DMT, you may also know her as @Denisermt on twitter.  I have to say I was touched when I read her guest post for the first time. I didn’t realize I’d made such an impact on her at a recent family gathering we’d had at their home and I’m glad she shared it with me and also decided she’d like to share it with you.  Thanks Denise, for helping us talk about it! xx

 

 A few weeks ago, I realized for the first time that I had never talked about it.  I had never explained epilepsy or my niece’s seizures to my children.  I had never explained to them why something as innocent as flashing house lights quickly on and off to create a disco tech isn’t so innocent to an epileptic child.

During a family get together at my house, our home was with filled with laughter and good food, but in a few moments we were about to be served an important lesson.   

Using several blankets and a princess pop-up castle, the children created a tent.  Of course, all good campers need a flashlight, so Allana found a flashlight to share with her cousins.  At first the flashlight was used to scare away the spooky woodland creatures but soon the flashlight created another scare when Allana found the strobe light setting and began waving the beam from her flashlight about the living room.

When my sister-in-law spotted the dancing beam of light, she began to panic.  Instinctively, Kirsten immediately jumped up and grabbed the flashlight from Allana. 

In my teaching days, I had students with epilepsy and a few even had photosensitive epilepsy.  On field trips to amusement parks, these students were not permitted to ride rides with strobe lights and they could not be photographed with flash photography.

Like many of the lessons I taught my students in my former life as a teacher, I had forgotten this one too.  I had forgotten how harmful a flashing light could be to a child with epilepsy.  Most importantly, I had forgotten to teach this important lesson to my own children.

Fortunately (and sadly unfortunately), Kirsten has years of experience explaining epilepsy and seizures to children due to raising her own epileptic child.  “It’s like when you are watching TV and the picture gets all blurry and fuzzy for a minute and then goes back on again. That’s what it’s like for Meghan.” 

I was amazed by Kirsten’s simple explanation for a sensitive and complex subject matter.  Most of all, I was amazed with Allana’s ability to accept the information, her compassion and her understanding  for the level of seriousness a simple dancing beam of light could impact her cousin. 

And at that moment, I realized epilepsy is something I should have talked about sooner with my children.

 

Living A Life With Epilepsy

Today my guest blogger is Katheryn, a wonderful lady from over the pond (in England), you may know her as @crystaljigsaw on twitter or from her Crystal Jigsaw blog.  Katheryn’s first seizure, which just happened to be in the water, is my worst nightmare and something I worry about for Meg all the time because we live in Florida.  However, while a little scary, I also think her story is full of inspiration! Katheryn is wife to a farmer, fabulous mother to a talented little pianist diagnosed with autism, an amazing writer and it just so happens she also lives with epilepsy.  Thank you Crystal for sharing your story and helping spread the word about Epilepsy!

In November 1998 I had a seizure whilst swimming in the Red Sea. It was probably the scariest thing that had ever happened to me up to that day and it changed the rest of my life forever. In May 1999, just weeks before I discovered I was pregnant with my daughter, Amy, I experienced two seizures in the same day and was then admitted to Bolton Hospital where I was diagnosed with epilepsy. Unfortunately, a diagnosis of epilepsy cannot be confirmed by one seizure alone due to the fact that a number of incidences can bring on a seizure; for example, excess alcohol, low blood sugar, lack of food intake, stress, exhaustion, to name but a few. 

I was scared. I knew that I had to change my lifestyle and knew that at almost 30 years old it was time I grew up and faced the fact that I was indeed a mortal human being and not the perpetual woman I so wished to be. When I realised I was pregnant it was suggested that I begin taking Tegretol Retard, a slow release anti-convulsant drug which would, in effect, lessen the seizures and hopefully keep them under control.  For ten years it worked.  And then in November 2009, I once more found myself in hospital after suffering a tonic clonic seizure (previously known as a grand mal seizure).

 My world was turned upside down. My daughter, now ten years old, was diagnosed with autism in October 2003 and I spent a long time blaming my own health for her condition. It has been reported that there is a fine link between autism and epilepsy, and it is not uncommon for a child with autism to develop epilepsy during adolescence. It was like having to come to terms with her autism all over again, when my epilepsy was once more thrown into turmoil. But it seemed that my own diagnosis wasn’t quite so straight forward when the next seven months saw me having more tonic clonic seizures, all a few days after the end of menstruation. Once more I altered my lifestyle, cutting out alcohol, caffeine and chocolate. Having finished writing a book last year I decided to switch off the computer and hang up the manuscript. Then in July of this year, realising the situation wasn’t getting any better even though my doctor had increased my medication significantly, I decided enough was enough and went to see a consultant privately. Within seven days of that initial appointment I had been given an MRI scan and an ECG. The MRI scan thankfully showed that I was normal. After worrying that I had a brain tumour I can assure you that the relief I felt was enormous. The ECG however, gave indications that my epilepsy was in fact photo-sensitive and according to the consultant, I had been taking the wrong medication for the past ten years.

He quickly began the process of changing this by prescribing Keppra, first in small doses whilst I decreased the Tegretol. It took four months for the weaning on/off process and I am now taking 2,000mg of Keppra per day having recently stopped taking Tegretol completely. I also resumed work on my book and having recently finished it, I am going through the editing process with a professional editor. I limit my time on the computer each day and wear sun glasses when using it at all times, and I hardly ever go outside without sun glasses on, even if it’s a dull day.

Epilepsy is a frightening condition. It causes a person to forget their surroundings, and in my case there was an incident at the beginning of this year when I didn’t even know my daughter’s name. For her it has been a difficult time as she witnessed me having a few seizures, but her love and understanding has given me a new lease of life.  Unable to drive until my doctor is satisfied with my safe wellbeing, I can’t take Amy to places. Where we live in rural Northumberland it is particularly far away from all amenities and this is something I have found hardest. Having my independence taken away from me has been a terrible strain after living most of my life relying on me to get through.

I take each day as it comes now. I feel okay but I will never be complacent about my life; I cherish each day, not as if it was my last, but as if it is the beginning of the rest of my life. I have been given a second chance at living my life, albeit under the cloud of epilepsy. Even though it has warranted me making decisions I would have chosen to avoid, I will treat it with respect. And hope it will respect me in return.