1. There are soooo many misconceptions!! Many people (and dare I say doctors, even neurologists) don't know all that much about the ins and outs of it. There are over 40 types of epilepsy. It is a spectrum of disorders, and no two are exactly alike. You can be diagnosed with epilepsy at any age.
2. 70 percent of people don't know why they have it. There are ties to PTSD, brain injuries, anesthesia, and such, but some may never know for sure.
3. Seizures can cause anything from speech issues, affecting taste smell and/or hearing, twitching, random movements, the inability to move, to grand mal seizures.
4. It's a scary situation. And it can be limiting. If you are uncontrolled in seizures, you will be told not to climb ladders, step stools, take a bath on your own, cook unattended, etc. You are also not allowed to drive per most states until you are 3, 6, or 12 months seizure free.
5. Post ictal (after affects) of seizures can last a few minutes to days. You can feel discombobulated, forget many simple pieces of information, including where you currently are, who you are with, etc. You can have Todd's Paresis, which is the paralysis of arms, legs, etc. This can last a short time or long time. Seizures are extremely tiring. It feels like a marathon...
6. Medicines do not always control seizures. In fact, I have seen numbers in the 40 percent range that are uncontrolled (I am very uncontrolled right now). As years go by, doctors start to mention VNS therapy (where an object is implanted to counter act the seizure) or even brain surgery... I speak with so many people at this crossroads on my Epilepsy facebook groups.
7. Seizures can look like a stroke. (many of mine do). My left side is weaker than my right. Sometimes I can't even feel my left side, as it has been numb in some form since last February when this started. Walking can be difficult at times and some are unable to walk eventually.
8.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.
(www.epilepsy.com)
9. Epilepsy affects over 3 million Americans of all ages – more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined.
(Please know, much of this is what I know... There are many other symptoms and after affects, but I am not as familiar with the ones I don't live with... )
One organization has helped me more than any other in this time. They help with Epilepsy education in schools, art therapy (I have participated in this 8)), camps for children with epilepsy, free and discounted health care for those with epilepsy, etc. That is Epilepsy Foundation of Texas 8)
http://eftx.org/
Yesterday, our family participated in the Epilepsy stroll at the Fort Worth Zoo!!! I really wasn't quite sure what to expect, but what I have now is an encouraged heart, hope and wonderful memories!!!
Everyone met outside of the zoo, registered and got to dance, participate in activities, and get some good information. We got there early (some of the first to register) so we had plenty of time to enjoy everything. The weather was good for most of the day (some terrible storms were in and out and threatening to rain on our parade.. but they didnt 8)). I got so much information about good doctors, possible treatments, tons of literature (Seriously, i find more out daily about epilepsy. The medical community is continuously learning more). We danced and danced... A few things that might make you laugh..... I am not all that current with most music (unless Texas Country or anything on American Idol counts 8)). I found out I cannot do the Wobble Dance, Uptown Funk etc... But teaching Kegan to kind of do the Uptown Funk dance was fun 8). I was standing with Kegan while Dave took a picture for another group. I look around for Avery and he was doing the Macarena on the "dance floor". He had such a blast too. Both the boys got to dance a lot... I made Avery dance to Twist and shout with me... (I wobbled or tried, lol...) Imagine a bunch of epileptics dance it to "shake it a baby, twist and shout... 8D" but it matches our humor about it too. Gotta laugh and make the best of it 8) So amazingly fun 8) I am so self conscious of my seizures, but I didn't have to be there, not even a little bit 8) I was safe. 8)
The walk wasn't a 5k... It wasn't even a walk all together... This is the most ingenious idea ever... You just get to walk in the zoo with friends and family at your leisure 8). Our family had a wonderful time and we made some awesome memories. My oldest was unable to go at the last minute (he had an orchestra event to attend), but we're glad we had this opportunity, to raise money for a wonderful cause, to teach others about this disease, to learn more, and to care for those in the Epilepsy community.
So, without a doubt, this was a beautiful, wonderful day!!!! I am so thankful and glad my family is supportive 8) There are so many who don't have that 8( and I send prayers, peace, love and light to you if you are in this situation.
A few more words to say in support of this wonderful cause------ Rock N Stroll!!!!!!!!!! (the theme for the walk 8D)
(For those dealing with this disease, or think they might be, I would like to speak to you for a moment... Don't be afraid to find a new doctor. It is important to work well with your doctor and for them to understand you and your communication style. If you are looking for a doctor, eftx does have a list and they can help. Also, if you are uninsured, please consider reaching out to them so that you are under a doctor's care. Just try to see if you qualify) This is a scary disease but you are not alone!!!!
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