Friday, March 9, 2012
Epilepsy Interview
Saturday morning there will be an interview about the interview! Denise M. Brown of Caregiving.com will have me as her guest on her Table Talk radio program on Saturday, March 10 at 7:00 a.m. (PST). We'll be talking about the interview Robert did about his seizures and epilepsy in general and why that was important for us to do. If you have more questions about epilepsy, log in to the "chat room" during the program to submit a question. To listen to the program, please click here. If you can't listen live, the podcast will be available shortly after the program finishes. Hope to see you in the chat room!
Tuesday, March 6, 2012
Epilepsy Questions Answered (Part Two)
Robert enjoyed being interviewed this past weekend. He answered my questions while snacking on a few cookies and was happy people wanted to learn about his seizures and epilepsy. He was even happier when I let him have extra cookies since we had a lot of questions to answer! Because there were so many great questions, we covered the seizure related questions in Part One and are covering the other questions here.
Q: How do you get first responders (or the public for that matter) to react positively and supportively when Robert has his seizures and you need assistance? How do you handle it when you are met with stand-offishness?
Robert: (Regarding first responders): “The ambulance people treat me nice. They’re very nice to me.” (Regarding people who are stand-offish): “People are nice to me.”
Trish: The upside of Robert having a memory problem is that he doesn’t recall the kids in school treating him differently or the time (several years ago) someone in a public restaurant witnessed him having a seizure and said, “He must be on drugs.” I have noticed when we are out and about that people will look at Robert because he uses a walker and he wears a helmet. I realize people are curious so this doesn’t bother me or Robert. For the most part, Robert and I have been treated with great kindness.
Q: Aside from Robert's epilepsy, how does he feel he's treated as a "disabled" person? Does he sense if others view him differently? If someone is cruel, does Robert meet that with humor, anger, confusion...?
Robert: “I do not get mad at them. I probably would tell them a joke or laugh or something.”
Trish: Upon further questioning, Robert says people don’t treat him differently. I asked how he was treated when he was in high school (trying to jog a few memories) and he said, “When I was in gym, I had to go to a different class. I taught the other students how to shoot pool. They liked that.”
Q: What, if anything, do people “not get”? What is the greatest misunderstanding people have about epilepsy that you have been exposed to?
Trish: I would have to agree that it isn’t so much a misunderstanding about epilepsy but more of a lack of knowledge about it. For many, many years epilepsy was feared because those with epilepsy were thought to be “possessed” and there are many countries today that are still working to dispel these kinds of beliefs. There also continues to be many misconceptions about seizures. (For instance, it is a MYTH that a person can swallow their tongue during a seizure). Something else people may not know is that epilepsy is not a disease but is instead is a disorder or condition. There are many different causes of epilepsy.
Q: Do you know of people switching to a smaller vehicle so has not to cause others harm during an accident if they have a seizure while driving?
Trish: Rules for obtaining a driver’s license vary by state but, generally, each state requires people to be seizure free for a period of time before they are able to obtain a license. Other considerations such as the types of medication a person is on to control seizures are factored into the decision to grant a driver’s license. In California, there are two types of Medical Probation. One is for drivers who have 3 – 5 months of seizure control and the other is for those with 6 months or more seizure control. I think it would be difficult to be able to drive (legally) without seizure control. I haven’t heard of people with epilepsy switching to a smaller car to mitigate the damage of an accident.
Robert never had enough seizure control to allow him to get a driver’s license. For many years, he was a master at the bus system and could walk miles to go somewhere he wanted to go. Only within the last couple of years did Robert tell me a story of how our dad once let him drive on the freeway. I could only shake my head at the thought since this was not surprising behavior from my dad. On the plus side, Robert was able to experience driving which made both him and my dad happy but I cringe at the thought of what could have happened if he had experienced a seizure and, in my opinion, do not think it was a risk worth taking.
Q: In September the committee I serve on will be holding an Emergency Preparedness (EP) fair to coincide with National Preparedness Month. What should I have at the fair to address Epilepsy and how it relates to EP?
Trish: This is a great topic! Thank you for your work in this regard. Robert’s biggest challenges in an emergency situation would be:
Q: How do you get first responders (or the public for that matter) to react positively and supportively when Robert has his seizures and you need assistance? How do you handle it when you are met with stand-offishness?
Robert: (Regarding first responders): “The ambulance people treat me nice. They’re very nice to me.” (Regarding people who are stand-offish): “People are nice to me.”
Trish: The upside of Robert having a memory problem is that he doesn’t recall the kids in school treating him differently or the time (several years ago) someone in a public restaurant witnessed him having a seizure and said, “He must be on drugs.” I have noticed when we are out and about that people will look at Robert because he uses a walker and he wears a helmet. I realize people are curious so this doesn’t bother me or Robert. For the most part, Robert and I have been treated with great kindness.
Q: Aside from Robert's epilepsy, how does he feel he's treated as a "disabled" person? Does he sense if others view him differently? If someone is cruel, does Robert meet that with humor, anger, confusion...?
Robert: “I do not get mad at them. I probably would tell them a joke or laugh or something.”
Trish: Upon further questioning, Robert says people don’t treat him differently. I asked how he was treated when he was in high school (trying to jog a few memories) and he said, “When I was in gym, I had to go to a different class. I taught the other students how to shoot pool. They liked that.”
Q: What, if anything, do people “not get”? What is the greatest misunderstanding people have about epilepsy that you have been exposed to?
Robert: “I’m not exactly sure. Some people are confused about what epilepsy is. Some people don’t know what epilepsy is.”
Trish: I would have to agree that it isn’t so much a misunderstanding about epilepsy but more of a lack of knowledge about it. For many, many years epilepsy was feared because those with epilepsy were thought to be “possessed” and there are many countries today that are still working to dispel these kinds of beliefs. There also continues to be many misconceptions about seizures. (For instance, it is a MYTH that a person can swallow their tongue during a seizure). Something else people may not know is that epilepsy is not a disease but is instead is a disorder or condition. There are many different causes of epilepsy.
Q: Do you know of people switching to a smaller vehicle so has not to cause others harm during an accident if they have a seizure while driving?
Trish: Rules for obtaining a driver’s license vary by state but, generally, each state requires people to be seizure free for a period of time before they are able to obtain a license. Other considerations such as the types of medication a person is on to control seizures are factored into the decision to grant a driver’s license. In California, there are two types of Medical Probation. One is for drivers who have 3 – 5 months of seizure control and the other is for those with 6 months or more seizure control. I think it would be difficult to be able to drive (legally) without seizure control. I haven’t heard of people with epilepsy switching to a smaller car to mitigate the damage of an accident.
Robert never had enough seizure control to allow him to get a driver’s license. For many years, he was a master at the bus system and could walk miles to go somewhere he wanted to go. Only within the last couple of years did Robert tell me a story of how our dad once let him drive on the freeway. I could only shake my head at the thought since this was not surprising behavior from my dad. On the plus side, Robert was able to experience driving which made both him and my dad happy but I cringe at the thought of what could have happened if he had experienced a seizure and, in my opinion, do not think it was a risk worth taking.
Q: In September the committee I serve on will be holding an Emergency Preparedness (EP) fair to coincide with National Preparedness Month. What should I have at the fair to address Epilepsy and how it relates to EP?
Trish: This is a great topic! Thank you for your work in this regard. Robert’s biggest challenges in an emergency situation would be:
Sunday, March 4, 2012
Epilepsy: Your Questions Answered
When I asked Robert if he would like to answer questions about epilepsy for people who “read stories about him on the computer,” he got a huge grin on his face.
“I’d like that,” he said simply but the grin tells me he’s quite bemused with the idea of people reading about him. (I’ll now have to watch out for any signs of “diva” behavior).
Let’s get to the questions before I have to sort M&Ms by color or fluff up his pillows. J
(There were so many great questions which came to me through email, caregiving.com and through the blog that I will break up the questions into two posts. This first post will talk mainly about Robert’s seizures).
Q: Does Robert like coming over to our house for the Rocky Road Ice Cream or to visit the animals and us? (Thanks for the question, Hubby).
Robert: “I like seeing the animals a lot and I like Rocky Road Ice Cream also so I like both. And I love both of you.” (Aw, shucks).
Q: What does it feel like when you have a seizure?
Robert: “I’m just out. Completely.”
Trish: Robert’s seizures are called “Complex Partial Seizures” in which he loses consciousness (and will fall if he’s standing). He does not convulse but does twitch his hands or tug at his clothes. His seizures have changed through the years (for instance, before his brain surgeries, his seizures were the Tonic Clonic type – formerly known as Grand Mal).
Q: Can you see or hear anything around you during the seizure?
Robert: “I don’t think so.”
Q: Are Robert’s eyes open during a seizure?
Trish: The first time I was asked this question, I actually didn’t know. I am so busy timing the seizure, saving dinner plates from falling on the floor or catching him for a soft(er) landing, that I hadn’t noticed. Now I know: Robert’s eyes stay open during a seizure.
Q: Does it hurt when you have a seizure?
Robert: “No, it does not hurt.”
Trish: I have to jump in to say that although the seizure itself does not hurt, he has had plenty of injuries during a seizure that have caused him pain afterward. He has a very high tolerance for pain which is sometimes problematic in determining whether or not he’s hurt. When Robert lived independently, he was hurt much more frequently when having a seizure (one reason he no longer lives independently). During seizures, he has hit his head (several times requiring stitches), fallen on a lamp (severely burning his arm because no one was around), drowned resulting in a three-day coma and has broken his jaw – just to name a few. So, although the seizure itself doesn’t hurt, the after effects sure can!
Q: How does it feel before and then after a seizure?
Robert: Before: “I feel normal. Sometimes I can feel it coming on.” After: “I feel okay. I feel fine.”
Trish: When we were talking more about this question, he explained that he isn’t more tired after a seizure. Then he proceeded to fake a snore (always with the jokes!). I have noticed, though, that he can be quite tired after a particularly long seizure (or cluster of seizures). Each person with epilepsy is different but many are pretty tired after a seizure.
Q: Robert, do you ever know when you’re going to have a seizure and if you do, can you prepare for it by sitting down in a safe place?
Robert: “Sometimes I can feel it come on and sometimes I can fight it off.”
Trish: Robert went on to tell me that he can prepare for it by sitting down but I have actually never known him to do this. I don’t know if it’s because his processing of everything is slow or if there just isn’t a lot of time to realize he’s having one and then be able to do something about it.
Q: Based on Robert's having about five over the weekend when you witness the seizures, would you estimate an average of two a day?
“I’d like that,” he said simply but the grin tells me he’s quite bemused with the idea of people reading about him. (I’ll now have to watch out for any signs of “diva” behavior).
Let’s get to the questions before I have to sort M&Ms by color or fluff up his pillows. J
(There were so many great questions which came to me through email, caregiving.com and through the blog that I will break up the questions into two posts. This first post will talk mainly about Robert’s seizures).
Q: Does Robert like coming over to our house for the Rocky Road Ice Cream or to visit the animals and us? (Thanks for the question, Hubby).
Robert: “I like seeing the animals a lot and I like Rocky Road Ice Cream also so I like both. And I love both of you.” (Aw, shucks).
Q: What does it feel like when you have a seizure?
Robert: “I’m just out. Completely.”
Trish: Robert’s seizures are called “Complex Partial Seizures” in which he loses consciousness (and will fall if he’s standing). He does not convulse but does twitch his hands or tug at his clothes. His seizures have changed through the years (for instance, before his brain surgeries, his seizures were the Tonic Clonic type – formerly known as Grand Mal).
Q: Can you see or hear anything around you during the seizure?
Robert: “I don’t think so.”
Q: Are Robert’s eyes open during a seizure?
Trish: The first time I was asked this question, I actually didn’t know. I am so busy timing the seizure, saving dinner plates from falling on the floor or catching him for a soft(er) landing, that I hadn’t noticed. Now I know: Robert’s eyes stay open during a seizure.
Q: Does it hurt when you have a seizure?
Robert: “No, it does not hurt.”
Trish: I have to jump in to say that although the seizure itself does not hurt, he has had plenty of injuries during a seizure that have caused him pain afterward. He has a very high tolerance for pain which is sometimes problematic in determining whether or not he’s hurt. When Robert lived independently, he was hurt much more frequently when having a seizure (one reason he no longer lives independently). During seizures, he has hit his head (several times requiring stitches), fallen on a lamp (severely burning his arm because no one was around), drowned resulting in a three-day coma and has broken his jaw – just to name a few. So, although the seizure itself doesn’t hurt, the after effects sure can!
Q: How does it feel before and then after a seizure?
Robert: Before: “I feel normal. Sometimes I can feel it coming on.” After: “I feel okay. I feel fine.”
Trish: When we were talking more about this question, he explained that he isn’t more tired after a seizure. Then he proceeded to fake a snore (always with the jokes!). I have noticed, though, that he can be quite tired after a particularly long seizure (or cluster of seizures). Each person with epilepsy is different but many are pretty tired after a seizure.
Q: Robert, do you ever know when you’re going to have a seizure and if you do, can you prepare for it by sitting down in a safe place?
Robert: “Sometimes I can feel it come on and sometimes I can fight it off.”
Trish: Robert went on to tell me that he can prepare for it by sitting down but I have actually never known him to do this. I don’t know if it’s because his processing of everything is slow or if there just isn’t a lot of time to realize he’s having one and then be able to do something about it.
Q: Based on Robert's having about five over the weekend when you witness the seizures, would you estimate an average of two a day?
Saturday, March 3, 2012
Epilepsy Q&A: Call for Questions
We've been in the routine of having Robert over to our house most every weekend. We enjoy having Robert here and he loves being here with us and the animals. Robert looks forward to coming over on the weekends and even though I tell him each weekend, "I'll pick you up next weekend to come back over" he calls me every Friday to ask if he's coming over and at what time. Lately, the calls have been coming earlier and earlier in the day – I think he likes coming over! (My guess is it's the never-ending supply of Rocky Road Ice Cream). :-)
Robert has always wanted to educate people about epilepsy. I've become sort of his “PR” person in this regard since he can't use the computer and his ability to communicate is much slower now. Lately, I've been asked a few questions about his seizures and about epilepsy in general so I will write a Q&A blog post this weekend and want to invite you to let me know if you have any questions Robert or I could answer. Since he's here (and right now pretty full from spaghetti & ice cream), I'll ask him anything you'd like and I'll post the answers sometime on Sunday (barring any unexpected emergencies).
As a disclaimer, we're not medical professionals or experts in the field of epilepsy. We're just people who have lived with it (Robert) or witnessed it (me) our entire lives. If I don't know an answer, I'll do my best to research the answer.
My only rule: Don't be afraid to ask questions! Robert and I want to answer anything you've ever wondered about epilepsy or seizures so please don’t be afraid of offending us. Also, remember that no question is stupid. Ask away!
Robert and I look forward to your questions.
Robert has always wanted to educate people about epilepsy. I've become sort of his “PR” person in this regard since he can't use the computer and his ability to communicate is much slower now. Lately, I've been asked a few questions about his seizures and about epilepsy in general so I will write a Q&A blog post this weekend and want to invite you to let me know if you have any questions Robert or I could answer. Since he's here (and right now pretty full from spaghetti & ice cream), I'll ask him anything you'd like and I'll post the answers sometime on Sunday (barring any unexpected emergencies).
As a disclaimer, we're not medical professionals or experts in the field of epilepsy. We're just people who have lived with it (Robert) or witnessed it (me) our entire lives. If I don't know an answer, I'll do my best to research the answer.
My only rule: Don't be afraid to ask questions! Robert and I want to answer anything you've ever wondered about epilepsy or seizures so please don’t be afraid of offending us. Also, remember that no question is stupid. Ask away!
Robert and I look forward to your questions.
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