My boyfriend has been diagnosed with JME epilepsy - what are the best ways i can support him?

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Hello everyone! My boyfriend and I have been together over a year and our relationship is strong. He has been waiting for an appointment following a grand mal seizure in late June and finally had one - they strongly believe he has JME ( myoclonic, tonic-clonic, and absence seizures). This rules him out from a job in the army he was hoping to take up in the next few months and means he cannot continue learning to drive. He is now feeling very depressed and upset at the prospect of no longer being able to do what he wanted to with his life. Although I am doing my best to sympathise and understand, I know others also with epilepsy will give the best advice on what I should do to support him in this situation. Please help. I am really worried about him.

Comments

So this is easy Pink. The

Submitted by Jazz101 on Tue, 2018-11-13 - 18:25

So this is easy Pink. The best way to figure out how to deal with others during designated medical circumstances is to envision yourself in their shoes.So (just for the sake of argument) imagine you were diagnosed with a medical condition that is very misunderstood. Epilepsy happens to be one of those conditions. How would you want those close to you to deal with you, Pink, if you were dealing with something that seems to have changed your plans?Anyone who is diagnosed with any misunderstood medical conditions first seeks a certain amount of "try to relate" from others. Relating is quite the opposite of daily sympathy. After all, sympathy will make him feel like his strength is all gone. That is the feeling his diagnosis has pretty much left in him given it's so new. So? What do you do? Well, try to do some research on Epilepsy to understand what it really is. As one of my favorite neurologist told the NY Times--"It's just neurological condition." By that it doesn't mean there won't be challenges. Challenges will be there. But to the outsider, like you, well, itshouldn't be perceived the way it was perceived, say, 20 or 40 years ago. The perception then was ancient. Today there are more individuals with Epilepsy than the average person would imagine. They just don't disclose it. There are great articles in the health section of the NY Times about Epilepsy. One cites a test that was conducted by Mayo Clinic which showed how misunderstood even neurologists once were about Epilepsy as in how to deal with individuals who have this condition. I use the term "condition" because that's what it is--a neurological condition versus say, the flu that everyone will get if you are next to them. What you're seeing right now is someone who is taking on a brand new challenge because it was so unknown to him. And that will take time for both of you to adjust because he is very important to you. For beginners, try to find a hospital with good neurological ratings if you are seeking a neurologist. US News and World Report has done their homework there. The link is:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryEpilepsy first requires finding a hospital with good ratings in neurology and neurosurgery. That's the category. The average hospital can be a bit clueless about Epilepsy. Next, it will require you seeing him pretty much as you saw him prior to the diagnosis. The only difference is he is taking on a medical challenge he never envisioned. As a result at times he probably will be a bit off. But this is why seeking a hospital with good neurological ratings is so important.The other thing? Well, allow him to feel the frustration from time to time as long as he isn't being overwhelmingly disrespectful to you. It's what you call; "I'll meet you halfway if you meet me halfway." After all, this is also a challenge for you.Try to team up with him on how you both will deal with this. And, as you can tell, there will always be disagreements in a team. As a result, be selective with areas you feel are very important. For example, this diagnosis requires seeing a specialist who deals with Epilepsy. Not all neurologist deal with Epilepsy. So make sure you find a neurologist who deals with Epilepsy.The best way to figure out how to deal with things Pink is to not set the bar very high in terms of short-term expectations. Focus more on the long-term expectations. Take me. Because my neurosurgeon outlined the upsides and downsides post surgery, I was ready for the downsides. And I took them on. Downsides don't mean they will last for life. Quite the opposite. It's about you having the patience to take it on. If at times you feel like taking a time out, do so my friend. After all, that will maintain your ability to come back and take on the challenge with more patience. I wish you both the best Pink. I will be a challenge at times. But just as army individuals try to piece together a plan to figure out how to take on their challenges, well, same here. And I commend you for asking over here. Shows you are willing to put in your best. The gentleman is lucky to have you next to him. Best Regards

So this is easy Pink. The best way to figure out how to deal with others during designated medical circumstances is to envision yourself in their shoes.So (just for the sake of argument)  imagine you were diagnosed with a medical condition that is very misunderstood. Epilepsy happens to be one of those conditions. How would you want those close to you to deal with you, Pink, if you were dealing with something that seems to have changed your plans?Anyone who is diagnosed with any misunderstood medical conditions first seeks a certain amount of "try to relate" from others. Relating is quite the opposite of daily sympathy. After all, sympathy will make him feel like his strength is all gone. That is the feeling his diagnosis has pretty much left in him given it's so new. So? What do you do? Well, try to do some research on Epilepsy to understand what it really is. As one of my favorite neurologist told the NY Times--"It's just neurological condition." By that it doesn't mean there won't be challenges. Challenges will be there. But to the outsider, like you, well, itshouldn't be perceived the way it was perceived, say, 20 or 40 years ago. The perception then was ancient. Today there are more individuals with Epilepsy than the average person would imagine. They just don't disclose it. There are great articles in the health section of the NY Times about Epilepsy. One cites a test that was conducted by Mayo Clinic which showed how misunderstood even neurologists once were about Epilepsy as in how to deal with individuals who have this condition. I use the term "condition" because that's what it is--a neurological condition versus say, the flu that everyone will get if you are next to them. What you're seeing right now is someone who is taking on a brand new challenge because it was so unknown to him. And that will take time for both of you to adjust because he is very important to you. For beginners, try to find a hospital with good neurological ratings if you are seeking a neurologist. US News and World Report has done their homework there. The link is:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryEpilepsy first requires finding a hospital with good ratings in neurology and neurosurgery. That's the category. The average hospital can be a bit clueless about Epilepsy. Next, it will require you seeing him pretty much as you saw him prior to the diagnosis. The only difference is he is taking on a medical challenge he never envisioned. As a result at times he probably will be a bit off.  But this is why seeking a hospital with good neurological ratings is so important.The other thing? Well, allow him to feel the frustration from time to time as long as he isn't being overwhelmingly disrespectful to you. It's what you call; "I'll meet you halfway if you meet me halfway." After all, this is also a challenge for you.Try to team up with him on how you both will deal with this. And, as you can tell, there will always be disagreements in a team. As a result, be selective with areas you feel are very important. For example, this diagnosis requires seeing a specialist who deals with Epilepsy. Not all neurologist deal with Epilepsy. So make sure you find a neurologist who deals with Epilepsy.The best way to figure out how to deal with things Pink is to not set the bar very high in terms of short-term expectations. Focus more on the long-term expectations. Take me. Because my neurosurgeon outlined the upsides and downsides post surgery, I was ready for the downsides. And I took them on. Downsides don't mean they will last for life. Quite the opposite. It's about you having the patience to take it on. If at times you feel like taking a time out, do so my friend. After all, that will maintain your ability to come back and take on the challenge with more patience. I wish you both the best Pink. I will be a challenge at times. But just as army individuals try to piece together a plan to figure out how to take on their challenges, well, same here. And I commend you for asking over here. Shows you are willing to put in your best. The gentleman is lucky to have you next to him. Best Regards

So this is easy Pink. The best way to figure out how to deal with others during designated medical circumstances is to envision yourself in their shoes.So (just for the sake of argument) imagine you were diagnosed with a medical condition that is very misunderstood. Epilepsy happens to be one of those conditions. How would you want those close to you to deal with you, Pink, if you were dealing with something that seems to have changed your plans?Anyone who is diagnosed with any misunderstood medical conditions first seeks a certain amount of "try to relate" from others. Relating is quite the opposite of daily sympathy. After all, sympathy will make him feel like his strength is all gone. That is the feeling his diagnosis has pretty much left in him given it's so new. So? What do you do? Well, try to do some research on Epilepsy to understand what it really is. As one of my favorite neurologist told the NY Times--"It's just neurological condition." By that it doesn't mean there won't be challenges. Challenges will be there. But to the outsider, like you, well, itshouldn't be perceived the way it was perceived, say, 20 or 40 years ago. The perception then was ancient. Today there are more individuals with Epilepsy than the average person would imagine. They just don't disclose it. There are great articles in the health section of the NY Times about Epilepsy. One cites a test that was conducted by Mayo Clinic which showed how misunderstood even neurologists once were about Epilepsy as in how to deal with individuals who have this condition. I use the term "condition" because that's what it is--a neurological condition versus say, the flu that everyone will get if you are next to them. What you're seeing right now is someone who is taking on a brand new challenge because it was so unknown to him. And that will take time for both of you to adjust because he is very important to you. For beginners, try to find a hospital with good neurological ratings if you are seeking a neurologist. US News and World Report has done their homework there. The link is:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryEpilepsy first requires finding a hospital with good ratings in neurology and neurosurgery. That's the category. The average hospital can be a bit clueless about Epilepsy. Next, it will require you seeing him pretty much as you saw him prior to the diagnosis. The only difference is he is taking on a medical challenge he never envisioned. As a result at times he probably will be a bit off. But this is why seeking a hospital with good neurological ratings is so important.The other thing? Well, allow him to feel the frustration from time to time as long as he isn't being overwhelmingly disrespectful to you. It's what you call; "I'll meet you halfway if you meet me halfway." After all, this is also a challenge for you.Try to team up with him on how you both will deal with this. And, as you can tell, there will always be disagreements in a team. As a result, be selective with areas you feel are very important. For example, this diagnosis requires seeing a specialist who deals with Epilepsy. Not all neurologist deal with Epilepsy. So make sure you find a neurologist who deals with Epilepsy.The best way to figure out how to deal with things Pink is to not set the bar very high in terms of short-term expectations. Focus more on the long-term expectations. Take me. Because my neurosurgeon outlined the upsides and downsides post surgery, I was ready for the downsides. And I took them on. Downsides don't mean they will last for life. Quite the opposite. It's about you having the patience to take it on. If at times you feel like taking a time out, do so my friend. After all, that will maintain your ability to come back and take on the challenge with more patience. I wish you both the best Pink. I will be a challenge at times. But just as army individuals try to piece together a plan to figure out how to take on their challenges, well, same here. And I commend you for asking over here. Shows you are willing to put in your best. The gentleman is lucky to have you next to him. Best Regards

So this is easy Pink. The

Submitted by Jazz101 on Tue, 2018-11-13 - 18:26

So this is easy Pink. The best way to figure out how to deal with others during designated medical circumstances is to envision yourself in their shoes.So (just for the sake of argument) imagine you were diagnosed with a medical condition that is very misunderstood. Epilepsy happens to be one of those conditions. How would you want those close to you to deal with you, Pink, if you were dealing with something that seems to have changed your plans?Anyone who is diagnosed with any misunderstood medical conditions first seeks a certain amount of "try to relate" from others. Relating is quite the opposite of daily sympathy. After all, sympathy will make him feel like his strength is all gone. That is the feeling his diagnosis has pretty much left in him given it's so new. So? What do you do? Well, try to do some research on Epilepsy to understand what it really is. As one of my favorite neurologist told the NY Times--"It's just neurological condition." By that it doesn't mean there won't be challenges. Challenges will be there. But to the outsider, like you, well, itshouldn't be perceived the way it was perceived, say, 20 or 40 years ago. The perception then was ancient. Today there are more individuals with Epilepsy than the average person would imagine. They just don't disclose it. There are great articles in the health section of the NY Times about Epilepsy. One cites a test that was conducted by Mayo Clinic which showed how misunderstood even neurologists once were about Epilepsy as in how to deal with individuals who have this condition. I use the term "condition" because that's what it is--a neurological condition versus say, the flu that everyone will get if you are next to them. What you're seeing right now is someone who is taking on a brand new challenge because it was so unknown to him. And that will take time for both of you to adjust because he is very important to you. For beginners, try to find a hospital with good neurological ratings if you are seeking a neurologist. US News and World Report has done their homework there. The link is:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryEpilepsy first requires finding a hospital with good ratings in neurology and neurosurgery. That's the category. The average hospital can be a bit clueless about Epilepsy. Next, it will require you seeing him pretty much as you saw him prior to the diagnosis. The only difference is he is taking on a medical challenge he never envisioned. As a result at times he probably will be a bit off. But this is why seeking a hospital with good neurological ratings is so important.The other thing? Well, allow him to feel the frustration from time to time as long as he isn't being overwhelmingly disrespectful to you. It's what you call; "I'll meet you halfway if you meet me halfway." After all, this is also a challenge for you.Try to team up with him on how you both will deal with this. And, as you can tell, there will always be disagreements in a team. As a result, be selective with areas you feel are very important. For example, this diagnosis requires seeing a specialist who deals with Epilepsy. Not all neurologist deal with Epilepsy. So make sure you find a neurologist who deals with Epilepsy.The best way to figure out how to deal with things Pink is to not set the bar very high in terms of short-term expectations. Focus more on the long-term expectations. Take me. Because my neurosurgeon outlined the upsides and downsides post surgery, I was ready for the downsides. And I took them on. Downsides don't mean they will last for life. Quite the opposite. It's about you having the patience to take it on. If at times you feel like taking a time out, do so my friend. After all, that will maintain your ability to come back and take on the challenge with more patience. I wish you both the best Pink. I will be a challenge at times. But just as army individuals try to piece together a plan to figure out how to take on their challenges, well, same here. And I commend you for asking over here. Shows you are willing to put in your best. The gentleman is lucky to have you next to him. Best Regards

So this is easy Pink. The best way to figure out how to deal with others during designated medical circumstances is to envision yourself in their shoes.So (just for the sake of argument)  imagine you were diagnosed with a medical condition that is very misunderstood. Epilepsy happens to be one of those conditions. How would you want those close to you to deal with you, Pink, if you were dealing with something that seems to have changed your plans?Anyone who is diagnosed with any misunderstood medical conditions first seeks a certain amount of "try to relate" from others. Relating is quite the opposite of daily sympathy. After all, sympathy will make him feel like his strength is all gone. That is the feeling his diagnosis has pretty much left in him given it's so new. So? What do you do? Well, try to do some research on Epilepsy to understand what it really is. As one of my favorite neurologist told the NY Times--"It's just neurological condition." By that it doesn't mean there won't be challenges. Challenges will be there. But to the outsider, like you, well, itshouldn't be perceived the way it was perceived, say, 20 or 40 years ago. The perception then was ancient. Today there are more individuals with Epilepsy than the average person would imagine. They just don't disclose it. There are great articles in the health section of the NY Times about Epilepsy. One cites a test that was conducted by Mayo Clinic which showed how misunderstood even neurologists once were about Epilepsy as in how to deal with individuals who have this condition. I use the term "condition" because that's what it is--a neurological condition versus say, the flu that everyone will get if you are next to them. What you're seeing right now is someone who is taking on a brand new challenge because it was so unknown to him. And that will take time for both of you to adjust because he is very important to you. For beginners, try to find a hospital with good neurological ratings if you are seeking a neurologist. US News and World Report has done their homework there. The link is:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryEpilepsy first requires finding a hospital with good ratings in neurology and neurosurgery. That's the category. The average hospital can be a bit clueless about Epilepsy. Next, it will require you seeing him pretty much as you saw him prior to the diagnosis. The only difference is he is taking on a medical challenge he never envisioned. As a result at times he probably will be a bit off.  But this is why seeking a hospital with good neurological ratings is so important.The other thing? Well, allow him to feel the frustration from time to time as long as he isn't being overwhelmingly disrespectful to you. It's what you call; "I'll meet you halfway if you meet me halfway." After all, this is also a challenge for you.Try to team up with him on how you both will deal with this. And, as you can tell, there will always be disagreements in a team. As a result, be selective with areas you feel are very important. For example, this diagnosis requires seeing a specialist who deals with Epilepsy. Not all neurologist deal with Epilepsy. So make sure you find a neurologist who deals with Epilepsy.The best way to figure out how to deal with things Pink is to not set the bar very high in terms of short-term expectations. Focus more on the long-term expectations. Take me. Because my neurosurgeon outlined the upsides and downsides post surgery, I was ready for the downsides. And I took them on. Downsides don't mean they will last for life. Quite the opposite. It's about you having the patience to take it on. If at times you feel like taking a time out, do so my friend. After all, that will maintain your ability to come back and take on the challenge with more patience. I wish you both the best Pink. I will be a challenge at times. But just as army individuals try to piece together a plan to figure out how to take on their challenges, well, same here. And I commend you for asking over here. Shows you are willing to put in your best. The gentleman is lucky to have you next to him. Best Regards

So this is easy Pink. The best way to figure out how to deal with others during designated medical circumstances is to envision yourself in their shoes.So (just for the sake of argument) imagine you were diagnosed with a medical condition that is very misunderstood. Epilepsy happens to be one of those conditions. How would you want those close to you to deal with you, Pink, if you were dealing with something that seems to have changed your plans?Anyone who is diagnosed with any misunderstood medical conditions first seeks a certain amount of "try to relate" from others. Relating is quite the opposite of daily sympathy. After all, sympathy will make him feel like his strength is all gone. That is the feeling his diagnosis has pretty much left in him given it's so new. So? What do you do? Well, try to do some research on Epilepsy to understand what it really is. As one of my favorite neurologist told the NY Times--"It's just neurological condition." By that it doesn't mean there won't be challenges. Challenges will be there. But to the outsider, like you, well, itshouldn't be perceived the way it was perceived, say, 20 or 40 years ago. The perception then was ancient. Today there are more individuals with Epilepsy than the average person would imagine. They just don't disclose it. There are great articles in the health section of the NY Times about Epilepsy. One cites a test that was conducted by Mayo Clinic which showed how misunderstood even neurologists once were about Epilepsy as in how to deal with individuals who have this condition. I use the term "condition" because that's what it is--a neurological condition versus say, the flu that everyone will get if you are next to them. What you're seeing right now is someone who is taking on a brand new challenge because it was so unknown to him. And that will take time for both of you to adjust because he is very important to you. For beginners, try to find a hospital with good neurological ratings if you are seeking a neurologist. US News and World Report has done their homework there. The link is:https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryEpilepsy first requires finding a hospital with good ratings in neurology and neurosurgery. That's the category. The average hospital can be a bit clueless about Epilepsy. Next, it will require you seeing him pretty much as you saw him prior to the diagnosis. The only difference is he is taking on a medical challenge he never envisioned. As a result at times he probably will be a bit off. But this is why seeking a hospital with good neurological ratings is so important.The other thing? Well, allow him to feel the frustration from time to time as long as he isn't being overwhelmingly disrespectful to you. It's what you call; "I'll meet you halfway if you meet me halfway." After all, this is also a challenge for you.Try to team up with him on how you both will deal with this. And, as you can tell, there will always be disagreements in a team. As a result, be selective with areas you feel are very important. For example, this diagnosis requires seeing a specialist who deals with Epilepsy. Not all neurologist deal with Epilepsy. So make sure you find a neurologist who deals with Epilepsy.The best way to figure out how to deal with things Pink is to not set the bar very high in terms of short-term expectations. Focus more on the long-term expectations. Take me. Because my neurosurgeon outlined the upsides and downsides post surgery, I was ready for the downsides. And I took them on. Downsides don't mean they will last for life. Quite the opposite. It's about you having the patience to take it on. If at times you feel like taking a time out, do so my friend. After all, that will maintain your ability to come back and take on the challenge with more patience. I wish you both the best Pink. I will be a challenge at times. But just as army individuals try to piece together a plan to figure out how to take on their challenges, well, same here. And I commend you for asking over here. Shows you are willing to put in your best. The gentleman is lucky to have you next to him. Best Regards

By the way, the "easy" I

Submitted by Jazz101 on Tue, 2018-11-13 - 18:26

By the way, the "easy" I started out with wasn't to say there won't be challenges. In medicine easy is sometimes the best of the available options. That means even the best has its down days.

My boyfriend has been diagnosed with JME epilepsy - what are the best ways i can support him?

Comments

So this is easy Pink. The

Submitted by Jazz101 on Tue, 2018-11-13 - 18:25

So this is easy Pink. The

Submitted by Jazz101 on Tue, 2018-11-13 - 18:26

By the way, the "easy" I

Submitted by Jazz101 on Tue, 2018-11-13 - 18:26

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