The common myths of epilepsy that I've heard are: 1. Place something in their mouth so the person seizing won't bite off their tongue and or choke on it.
The 2nd one I heard while I was in my freshman year in college. I was taking a Speech class and had to teach the classroom something for five minutes. Naturally I chose epilepsy. I spoke of my seizure experiences and told how my mom witnessed my second one. When I told them how my mother said I didn't breathe for three minutes the teacher asked, "Doesn't that mean you were dead?"
So the 1st one: do people who are seizing bite off their tongue, swallow it, and choke on it? No. More than likely they'll bite their tongue but they won't bite it off. Also, they don't swallow while they're seizing so, no they won't swallow their tongue.
2nd are we alive? Yes. While we may not be breathing our hearts are still beating, so we still have a pulse. Also, our brains are alive so obviously people seizing are still alive.
Another myth is that you need to call 911 after every seizure. No, only if the seizure lasts longer than five minutes or if they are having seizures continuously. Also, you'll need to call 911 if the person seizing does not have a history of having seizures. If someone falls and/or gets injured before or after having a seizure please stay with him/her and call 911.
Seizures are serious and are scary. They do cause damage to brain cells. Because we don't breathe during seizures our brains are being starved of oxygen, which of course, is dangerous for pregnant women too. If the woman seizing is pregnant you'll need to call 911. She could have fallen and injured her abdomen, or she might've gotten hurt while she was seizing.
When you see someone seizing:
1. remain calm. They're not freaks, they're not possessed. It's something that he/she can't help because let's be honest, who wants to have a seizure?
2. Lay him/her on their side. Because people seizing don't swallow, their spit is accumulating in their mouth and when he does stop seizing he'll need to swallow and he won't want to choke on his spit. Also, if he's on his side he's less likely to hit his head on the ground or something else.
3. Loosen his clothes if you need to. (Ties or button up shirts/jackets. Things that could be constricting his airway).
4. Time the seizure. A normal seizure will last under five minutes. If it's longer call 911.
5. Stay with him. Be calm. Be patient. A person coming out of a seizure will be confused and disoriented. Be reassuring. Be kind.
I know a few people will want to try and stop someone from seizing so you might try to hold them down. Please don't. You or the person seizing could get hurt in the process.
There is no cure for epilepsy. Unfortunately anti seizure medications don't work for everyone. People die every year from seizing in a bathtub or a pool where they drown. People lose consciousness and have a seizure while driving or get seriously injured on the fall down as they lose consciousness. I'll say it again it's not fun living with epilepsy. But you can make it easier for people like me who are living with epilepsy by educating yourself about this condition and offering support to those affected by epilepsy. Always be kind and don't judge what you don't understand.
Thursday, November 27, 2014
Tuesday, November 25, 2014
Picture Day!
So in the spirit of the holidays Jim and I decided to have the boys' pictures taken. I found this girl's Portrait Page on Facebook and she did an amazing job!
The boys were difficult, of course, but the pictures came out great anyway! James missed his nap so he was cranky. And because James was cranky Kevin was getting annoyed. We all know that when kids are upset they don't listen very well.
But regardless of the boys doing their own thing Jamie knows a great shot when she sees one. So if you haven't heard of her and you live in Florida look up Jamie Dorsey. Here's our boys:
The boys were difficult, of course, but the pictures came out great anyway! James missed his nap so he was cranky. And because James was cranky Kevin was getting annoyed. We all know that when kids are upset they don't listen very well.
But regardless of the boys doing their own thing Jamie knows a great shot when she sees one. So if you haven't heard of her and you live in Florida look up Jamie Dorsey. Here's our boys:
In case you wondered Jim wasn't planning on being a part of the pictures. He was throwing James up in the air and James loved it, as you can see.
Wishing everyone a happy Thanksgiving. May your hearts and bellies be full. And may you always remember your blessings and remain grateful.
Love,
The Panko Family
Tuesday, November 4, 2014
My Loved Ones - Living With Epilepsy
A couple of months ago I wrote my story, my epilepsy experience, for a school survey. One of the questions asked how our significant others or parents deal with this. Call me selfish but before that I haven't thought about what it was like for my parents when I lived at home, or my husband whom I live with now...
My mom used to wake me up every day for high school. She'd come in my room with my pills in one hand and a drink of water in the other. Every night before I went to bed she would ask me if I took my medicine and if I didn't I got scolded. "How hard is it to remember to take your medicine?! Do you have a death wish?!" At the time I saw her as a nagging mother but now that I'm older I see that she was worried and concerned.
My mom also picked me up from school when I was having partial seizures. One time it was around lunch time and I was trying to eat my lunch in the car. Every time I picked up the food to take a bite my arms would have tremors and I'd drop the food back onto my lap. I remember my mom saying, "Quit that! It's freaking me out!". I knew she was only half joking because she knew I couldn't help it, but after that remark I just laid the seat back and tried to sleep.
I was dating Jim when I had my last seizure. Kevin and I were living in an apartment with him in Deland. I had lost my insurance and couldn't afford my medication. I tried to avoid my triggers: stress, computers, sleep deprivation... But I needed my medicine. I called my mom to tell her I felt a seizure coming on and I was worried because I was home alone with Kevin. She said she heard the phone drop and called out for me, but when I didn't answer she hung up and dialed 911.
I remember hearing a knock at the door so I opened it. Men (it was the paramedics) came in and started talking to me and asking me questions but I couldn't understand any of it. They took Kevin and I to the hospital in the ambulance. Kevin was brave, not freaked out, and curious about what was going on.
My mom called Jim and he met us at the hospital. The doctors gave me my medicine through an I.V and once they were pleased with my levels I was discharged. They also gave me a prescription so I could buy my medicine. As I didn't have a job my mom was going to pay for it but Jim held up a hand to her then handed his card to the pharmacy, "I'll pay for it," he said. He told me later that he'd always find a way to pay for my medicine. Whether he has to sell his video game systems, video games, or our t.v because all those things can be replaced. I, however, cannot be replaced.
I have not had a seizure since that day and Jim has kept his promise. He keeps looking after me just as my mother did when I lived with her. He'll open the medicine cabinet and if I'm getting low he'll tell me to call the doctor or call my prescription into the pharmacy. He too asks me if I took my medicine in the morning and at night. What I saw as annoying growing up I now see the love and concern behind it.
Growing up I thought that epilepsy was only hard on me. After all it's my life that changed, right? No. My parents had a seemingly healthy daughter for fifteen years then their world was turned upside down also. Like me they worried where my next seizure would take place. I have no doubt that they still worry but hopefully my thoughtful, caring husband has put their minds at ease.
Some days he worries too much. It's illogical since I'm on my medication and haven't had a seizure since 2008, but fear of losing a loved one can cause a loss of rational thinking. He used to call me five times a day and if I didn't answer every call he'd come home in a panic. Now I try to text him through out the day or call him first so he knows I'm okay.
So what I gather from watching my husband and my parents worry about me is that loving someone with epilepsy is just as scary for them as it is for me. I worry that one day my meds won't be enough, that maybe I'll have a seizure while driving, or in the shower... Things my husband, reassures me, that he's thought about and worries about too.
As a mother of two handsome boys, now I worry about my sons inheriting this disorder. However, it is highly unlikely. I know I wouldn't love them any less. It would just make me worry about them even more.
Epilepsy. It changes the life of not only those who are diagnosed, but everyone around you too. So take heed: living and loving someone with epilepsy is not for the faint hearted.
My mom used to wake me up every day for high school. She'd come in my room with my pills in one hand and a drink of water in the other. Every night before I went to bed she would ask me if I took my medicine and if I didn't I got scolded. "How hard is it to remember to take your medicine?! Do you have a death wish?!" At the time I saw her as a nagging mother but now that I'm older I see that she was worried and concerned.
My mom also picked me up from school when I was having partial seizures. One time it was around lunch time and I was trying to eat my lunch in the car. Every time I picked up the food to take a bite my arms would have tremors and I'd drop the food back onto my lap. I remember my mom saying, "Quit that! It's freaking me out!". I knew she was only half joking because she knew I couldn't help it, but after that remark I just laid the seat back and tried to sleep.
I was dating Jim when I had my last seizure. Kevin and I were living in an apartment with him in Deland. I had lost my insurance and couldn't afford my medication. I tried to avoid my triggers: stress, computers, sleep deprivation... But I needed my medicine. I called my mom to tell her I felt a seizure coming on and I was worried because I was home alone with Kevin. She said she heard the phone drop and called out for me, but when I didn't answer she hung up and dialed 911.
I remember hearing a knock at the door so I opened it. Men (it was the paramedics) came in and started talking to me and asking me questions but I couldn't understand any of it. They took Kevin and I to the hospital in the ambulance. Kevin was brave, not freaked out, and curious about what was going on.
My mom called Jim and he met us at the hospital. The doctors gave me my medicine through an I.V and once they were pleased with my levels I was discharged. They also gave me a prescription so I could buy my medicine. As I didn't have a job my mom was going to pay for it but Jim held up a hand to her then handed his card to the pharmacy, "I'll pay for it," he said. He told me later that he'd always find a way to pay for my medicine. Whether he has to sell his video game systems, video games, or our t.v because all those things can be replaced. I, however, cannot be replaced.
I have not had a seizure since that day and Jim has kept his promise. He keeps looking after me just as my mother did when I lived with her. He'll open the medicine cabinet and if I'm getting low he'll tell me to call the doctor or call my prescription into the pharmacy. He too asks me if I took my medicine in the morning and at night. What I saw as annoying growing up I now see the love and concern behind it.
Growing up I thought that epilepsy was only hard on me. After all it's my life that changed, right? No. My parents had a seemingly healthy daughter for fifteen years then their world was turned upside down also. Like me they worried where my next seizure would take place. I have no doubt that they still worry but hopefully my thoughtful, caring husband has put their minds at ease.
Some days he worries too much. It's illogical since I'm on my medication and haven't had a seizure since 2008, but fear of losing a loved one can cause a loss of rational thinking. He used to call me five times a day and if I didn't answer every call he'd come home in a panic. Now I try to text him through out the day or call him first so he knows I'm okay.
So what I gather from watching my husband and my parents worry about me is that loving someone with epilepsy is just as scary for them as it is for me. I worry that one day my meds won't be enough, that maybe I'll have a seizure while driving, or in the shower... Things my husband, reassures me, that he's thought about and worries about too.
As a mother of two handsome boys, now I worry about my sons inheriting this disorder. However, it is highly unlikely. I know I wouldn't love them any less. It would just make me worry about them even more.
Epilepsy. It changes the life of not only those who are diagnosed, but everyone around you too. So take heed: living and loving someone with epilepsy is not for the faint hearted.
Sunday, November 2, 2014
Seizures - Epilepsy Awareness part 2
A grand mal seizure is when a person loses consciousness and their whole body starts jerking uncontrollably. Now you you can see why this is so dangerous. People with epilepsy have no way to stop it and no telling when the next one will occur.
My second seizure happened at home in my parents bed. I was getting ready for school when I started having tremors in my arms. I went to the kitchen to tell my mom and she told me to go back to bed. As I turned to leave my legs gave out from beneath me so my mom walked me to her bed where my dad was sleeping. Before she left she woke up my dad and told him to watch me. Once again I had a bad headache so I closed my eyes to go to sleep. That's all I remember.
My dad said he was on the verge of falling back asleep when he heard me call out "not again". He rolled over to me and I started seizing. He then called for my mom. She timed it, saying it was under three minutes. She said I stopped breathing, my lips were blue, I was shaking, and I was foaming at the mouth. She said when I stopped I didn't open my eyes for five minutes. She then called out my name and tried to talk to me but I had a blank stare on my face and didn't respond until after fifteen minutes.
Until the doctors got my medication and dosage right I continued to have partial seizures at school. I would be in Chorus trying to hold our music when I would have tremors in my arms and I'd throw the paper every which way. Then I'd get a pass to the nurse's office where I'd call my mom to come get me. Another time I was in Health class. We were walking down the hallway to our classroom when my legs gave out from beneath me. My friend, Jon Lewis, walked with me to the nurse's office and stayed by my side until my mom came.
It never got any easier. They're always embarrassing and for a moment you wonder what happened. After I would have tremors in my arms I'd have a pins and needles sensation coursing through my arms.
My grand mal seizures often took place in public places because I'm stubborn and don't want epilepsy to control my life. Fortunately they never occurred while I was driving or on the stairs. I've had one at Pizza Hut, Pine Ridge High School, my work (Convergys), and at the airport. My friend said she looked up to me because if she had Epilepsy she'd be too embarrassed and afraid to leave the house. My response to that was that my fear was being alone while having a seizure. At least in public there's people around to help.
However, now I'm lucky enough to be seizure free since December 2008! My neurologist is keeping me on Keppra as it works for me and there's no bad side effects! As there is no cure for epilepsy I'm glad that western medicine has come this far! I only hope that their medicines and knowledge of epilepsy keeps evolving so that maybe one day there will be a cure for epilepsy.
My second seizure happened at home in my parents bed. I was getting ready for school when I started having tremors in my arms. I went to the kitchen to tell my mom and she told me to go back to bed. As I turned to leave my legs gave out from beneath me so my mom walked me to her bed where my dad was sleeping. Before she left she woke up my dad and told him to watch me. Once again I had a bad headache so I closed my eyes to go to sleep. That's all I remember.
My dad said he was on the verge of falling back asleep when he heard me call out "not again". He rolled over to me and I started seizing. He then called for my mom. She timed it, saying it was under three minutes. She said I stopped breathing, my lips were blue, I was shaking, and I was foaming at the mouth. She said when I stopped I didn't open my eyes for five minutes. She then called out my name and tried to talk to me but I had a blank stare on my face and didn't respond until after fifteen minutes.
Until the doctors got my medication and dosage right I continued to have partial seizures at school. I would be in Chorus trying to hold our music when I would have tremors in my arms and I'd throw the paper every which way. Then I'd get a pass to the nurse's office where I'd call my mom to come get me. Another time I was in Health class. We were walking down the hallway to our classroom when my legs gave out from beneath me. My friend, Jon Lewis, walked with me to the nurse's office and stayed by my side until my mom came.
It never got any easier. They're always embarrassing and for a moment you wonder what happened. After I would have tremors in my arms I'd have a pins and needles sensation coursing through my arms.
My grand mal seizures often took place in public places because I'm stubborn and don't want epilepsy to control my life. Fortunately they never occurred while I was driving or on the stairs. I've had one at Pizza Hut, Pine Ridge High School, my work (Convergys), and at the airport. My friend said she looked up to me because if she had Epilepsy she'd be too embarrassed and afraid to leave the house. My response to that was that my fear was being alone while having a seizure. At least in public there's people around to help.
However, now I'm lucky enough to be seizure free since December 2008! My neurologist is keeping me on Keppra as it works for me and there's no bad side effects! As there is no cure for epilepsy I'm glad that western medicine has come this far! I only hope that their medicines and knowledge of epilepsy keeps evolving so that maybe one day there will be a cure for epilepsy.
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