www.talkaboutit.org

By far, one of the BEST websites for Epilepsy Awareness is talkaboutit.org
It is so great, very interesting (even if you don't have epilepsy) and it's easy to understand.
If you or someone you know has epilepsy, please check out www.talkaboutit.org

Stroll for Epilepsy- MARCH 24, 2012 9am!!

2012 El Paso Stroll For Epilepsy

Join us on March 24, 2012

Register Now! Donate To This Event

In Memory of PC Jordan, Jr. Sign Up Today! Ascarate Park Saturday, March 24, 2012 Registration Begins: 8:00 a.m. Stroll Begins: 9:00 a.m. *There is a $1.00 per car parking fee at the park. Each participate, regardless of age, is asked to donate and/or raise at  least $25 to cover all expenses and to receive an event t-shirt. Need help fundraising? Click here for a team packet with ideas! To become a corporate sponsor or underwriter, please click here to learn more about the benefits for your company.  Contact Phil Jordan at pcjordan@swbell.net or 915-240-4848 for more information.

A new APP for your smartphone to help you with your epilepsy! Very cool....

This new app is so great!!!
It's from Epilepsy.com, and it's called My Epilepsy Diary.
Not only can you journal your epilepsy symptoms, but it has tools to help you track your medications, vitamins, AND it has a way to set-up email and text reminders to help you take your meds on time!!! YAY! I love this feature. Taking your medications on time is critical in managing seizures.
To find out about this great app, read on!!

Introducing My Epilepsy Diary

Just create a My Epilepsy Diary profile. Whenever you experience a seizure, side effect, mood change, or other personal event related to your epilepsy, log onto My Epilepsy Diary from your browser or smart phone. Record what happened and fill in the details quickly using the many common situations My Epilepsy Diary already provides.

My Epilepsy Diary also helps you track all your medications and dosages, even for non-epilepsy medications and vitamins. You can evenset up email or text reminders to take your medications!

Before your doctor's appointment, simply print out a report. My Epilepsy Diary provides your doctor a complete, organized, and easy-to-read record of your recent epilepsy history, as well as long-term trends that show how effective your treatment has been and whether it may need to be changed.

No more forgotten details. No more complicated record keeping. No more trouble remembering your medications. My Epilepsy Diary makes managing your epilepsy, or your loved one's epilepsy, fast and easy.

Try it today!

If you need assistance, go to the My Epilepsy Diary Help page for a user guide and additional information.

Prescription Assistance

During these trying economic times, many of us are struggling to pay for prescription medications. With people being out of work- they are left without any prescription coverage. We all probably know of someone who is in this situation. Some people have to decide between paying for their medications, or paying their rent. No one should have to choose between shelter and their health.

We found a company who has helped thousands of people receive their medications at a drastically reduced cost, or sometimes, even for FREE.

SCBN, Select Care Benefits Network, is a company specializing in helping Uninsured, Low Income Americans access help with prescriptions on an ongoing basis.

Epilepsy medications are among the most expensive of all drugs. And because most epileptics take more than one medication, you can imagine how the cost can add up.

My husband's medications (Topamax and Vimpat) add up to just under $500 per month. Because these medications have helped him be seizure-free for so long, there is no way we would ever stop these medications.

Please help me spread the word about SCBN. They can help.

www.scbn.org
866-722-6479

Sheldon's first seizure- the day our lives changed forever

Personal stories are often the ones that move us the most. I hope our story helps shed some light on what it's like to live with this condition. 

It was a seemingly normal early morning in our home. My two sons were sleeping in the next room, and our alarm clock had already gone off once (Sheldon hit the snooze and got back into bed). As I lay there getting those last few moments of rest before the day was to start, I heard Sheldon making a strange sound. I rolled over, and to my shock and horror, he was having a seizure. 

His eyes were rolled to the back of his head, he was making a grunting sound, his whole body was shaking, and his head was hitting our headboard quite forcefully. 

I scrambled to grab my phone from the charger, and immediately called 911.

I straddled him, trying to wedge a pillow behind his head as I spoke to the paramedics on the phone. 

As I spoke, his seizure continued, and blood began to pour from his mouth. He was biting through his tongue. There was nothing I could do but watch in terror.

This moment was my worst nightmare. It looked like a scene out of a horror movie. 

I had never seen someone have a seizure, and for me, this was terrifying. I thought he was dying. 

To make matters more complicated- I was about 7 weeks pregnant with our third baby. 

My heart broke to think that this stress was going to hurt my baby, or worse- cause a miscarriage. I prayed so fervently during those moments that God would protect my baby. 

With him now on the floor, the concern was keeping his airway open and clear from things that could choke him. I tried to see his mouth as best as I could- but it was impossible to roll him over very well. Sheldon is about 6 feet tall and 200 pounds- and convulsing- there was no way I could move him. 

I ran to the front door to unlock it for the paramedics who soon arrived. My kids were screaming from all the commotion- I had locked them in their bedroom with the tv on to block noise. 

Those moments are still so fresh in my mind. The shock. The feeling of being completely unable to help. And so completely terrified that something was wrong with the man I had loved for over 10 years at that point. All I could do is watch them load him onto the gurney once his seizure was over. 

They asked me a million questions, like " does he do drugs?" or "was he drinking?" "Does he have any head injuries?" "What's the last thing he said to you?"

They shined lights in his eyes - that were now bulging and completely blood-shot. 

I'll never forget the look on his face. It was so foreign to me. All his muscles were stiff and bulging, including the ones on his face. His face did not look like his own. It was different. Almost unrecognizable. I kept talking to him "Sheldon, babe, I'm here babe. " "we are all here with you" He gazed around the room, looked at me, then without warning, he swung to punch the paramedic standing over him. Luckily, the man ducked out of the way. Sheldon hasn't ever hit anyone ever in his life. For me to see him be so aggressive was strange. It scared me and hurt me. He kept swinging to hit all the men around him, grunting and wanting to stand up. Later, the paramedic explained to me that Sheldon's reactions were normal after a seizure. 

A seizure? Is THAT what that was? What does this mean? How could this happen? He hardly ever gets sick at all! Maybe a cold once a year! 

I watched them put him into the back of the ambulance as I stood there in my nightgown in our front yard. I wept bitterly and held my belly as if to be telling my unborn child to hang in there. My parents arrived shortly to stay with my kids, and I left to the hospital. I don't even remember driving there. I just remember praying. 

After an eternity in the ER and a million tests, MRI's, CT scans, etc. we came home. Our mattress was drizzled in blood, the sheets and blankets tossed about. The couches and other items in our living room moved aside as to make room for the gurney. My home was a warzone- a reminder of that horrible morning. My mom and I slowly put things back where they belonged. We scrubbed the mattress, the carpets, and the wall. We put on clean sheets, new blankets, and put all the pieces of our home together again. I hugged my children with so much love. I felt so frail- like if all my energy had been drained. I just wanted to collapse. I stared at my husband, wondering if he would have another one. I would spend the rest of my days doing that- waiting, wondering in fear. When will this happen again? Will it happen again? It did. Exactly three months later. It was at that point that he received the diagnosis- EPILEPSY. 

That big scary word that was not even a part of my conscious vocabulary- was now a word that echoed in my head all day long. I could never leave him alone. I could no longer leave the kids with him EVER. He couldn't shower unless I was home. He couldn't drive. He couldn't hold our newborn baby unless he was sitting, and accompanied by someone. We had to remove our furniture from our bedroom- in case he had a seizure in bed. Our mattresses sit on the floor. No nightstands, padding on every corner, and countless other changes had to be made. Our lives changed forever. There was no such thing as " can you go pick up some milk hun, we ran out". ALL of us had to go to the store, or none of us. I could not leave him alone, or the kids alone with him. I was the caregiver for all at this point. Kinda overwhelming. To this day, I shower with the door open, I shower quickly, and when he showers, I am constantly walking by, peeking in. I'm always on the look-out. Always wondering and waiting. 

His doctor gave us one medication,Topamax. No information about lifestyle changes that happen to those with epilepsy, treatment options, support group information, community outreach service information- NOTHING. 

It is for that reason that I want to work with the Epilepsy Foundation. I want to help those who suffer from this condition adjust to their new life, and all the things that go with it. I want to make myself available, to be a shoulder to cry on, because we did not have that. We got a ten minute consultation, a prescription for a drug, and sent home. That is just not good enough. 

IT IS NOT GOOD ENOUGH! Every patient that gets this diagnosis should get information on everything from local support groups to free transportation options offered by the city (epileptics cannot drive). I can only imagine those who are not as fortunate as we are. Those who live in poverty or who cannot speak the language well enough to know what EXACTLY is happening to them. SO much work to do to change this broken system. But I'm up for it. :)

For Veterans with love-Post Traumatic Epilepsy

WHAT YOU NEED TO KNOW

• Traumatic brain injury (TBI) is a common form of injury in servicemen and women
• returning from Operation Enduring Freedom (OEF) and Operation Iraqi Freedom (OIF).
• It is the leading injury among these servicemen and women.
• Post-Traumatic Epilepsy (PTE) is a seizure disorder that is caused by TBI.
• The Risk of PTE increases with the severity of the TBI.
• There are available resources to help veterans and family members receive accurate
• information regarding PTE and TBI.

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• 1.64 million soldiers have served in the current Iraq and Afghanistan conflicts 
• 320,000 of these soldiers will experience traumatic brain injury (TBI)
• Between 15 percent and 34 percent of TBI patients have post-traumatic epilepsy, and active military rates can be as high as 52 percent
• Between 48,000 and 169,000 soldiers serving in Iraq and Afghanistan are expected to develop post-traumatic epilepsy (PTE)

• 
  

WHAT IS TRAUMATIC BRAIN INJURY (TBI)?

A traumatic brain injury occurs when a person's brain is physically injured, usually by sudden force. With military members, this injury is often the result of a concussive blast or explosion. The frequent use of improvised explosive devices (IED) increases the changes of exposure to such risks. Because the damage is internal, there may be no visible head wound.

There is a wide range in severity of TBI; some individuals can recover completely without medical intervention while others may have permanent and total disability.  Any brain injury, whether mild, moderate or severe, should be checked out by a doctor. The Risk of post-traumatic epilepsy (PTE) increases with the severity of the TBI.

WHAT IS POST-TRAUMATIC EPILEPSY (PTE)?

PTE is a seizure disorder that is caused by TBI. It is most likely to occur after an open or penetrating wound to the head, but sometimes it can follow a closed head injury. The incidence of PTE is highest in the military because soldiers are at a higher risk for TBI than the general population.

Seizures are characterized by a sudden change in movement, behavior, sensation or consciousness produced by an abnormal electrical discharge in the brain. Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. Epilepsy is also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy.

Epilepsy Centers of Excellence

The VA has funded the Epilepsy Centers of Excellence. The Centers of Excellence are charged with: (1) establishing a national system of care to all veterans with Epilepsy, (2) educating veterans and others in their lives impacted by Epilepsy about high quality Epilepsy care, (3) providing health professional education and training in order to deliver the highest quality of standard of care to veterans with Epilepsy, (4) utilizing national VA and other databases in order to inform providers and policy makers in Central Office about health care delivery and health policy decisions, (5) conducting state-of-the-art research about Epilepsy, and (6) implementing an informatics backbone to meet the above objectives.Click here.

CONNECT ₂CARE

Early diagnosis and treatment are important, but military personnel may underreport mild TBI to avoid removal from combat situations or active duty and go undiagnosed. The role of family and other caregivers is critical to help facilitate and encourage early diagnosis and treatment.

Diagnosing PTE is a multi-step process and treating epilepsy involves many different people. The team may include the primary care physician, nurse, social worker and specialists such as neurologists. 

The Epilepsy Foundation has created the Veterans Outreach Program that is designed to:

1. provide education on the link that exists between traumatic brain injury (TBI) and epilepsy, and
2. increase the numbers of veterans who are screened for TBI.Traumatic Brain Injury and Epilepsyis a pocket‐size booklet that has been designed to educate veterans and their families about the relationship between TBI and epilepsy. To recieve a copy, email info@efa.org or call 800-332-100

More Resources

There are more resources available in our online store. You can purchase apparel, books, pamphlets, CDs, DVDs, and more. There are also FREE materials, but you do have to cover the cost of shipping & handling.

epilepsyUSA article

Landmark Study Shows Epilepsy/Brain Injury Impact in Veterans(page 13)
From auto accidents to wartime wounds, penetrating head trauma is the leading cause of new-onset epilepsy in young adults, with up to 30,000 new cases per year in the United States.

Epilepsy facts and statistics!

Did you know that almost 500,000 Texans have epilepsy? Half a million people!!!

With 3 million cases in the U.S., that is a huge percentage we make-up here in Texas. Ask me how you can help!!!

Epilepsy Facts Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide. In two-thirds of patients diagnosed with epilepsy, the cause is unknown. Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors. In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures. The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal. It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. The mortality rate among people with epilepsy is two to three times higher than the general population and the risk of sudden death is twenty-four times greater. Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, mental retardation, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes. There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy. Historically, epilepsy research has been under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy. For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.