Does anyone have advice on how to help family understand E?

[Boozer]

I haven't totally been diagnosed with epilepsy. The doc is sure I am having seizures but I have to see the neurologist on the 2nd of Oct for more testing. Long story there. I have a lot of memory problems and black out for most of the time short periods frequently everyday. My family support is lacking and I feel alone in my struggle. Mostly they don't understand seizures at all. I don't know what to do. Does anyone have any advice?

 

[Nakamova]

There's a lot of ignorance about epilepsy, but many people become more understanding and supportive once they learn what epilepsy is all about. If you think your friends or family members are open to learning more, you could direct them to informational websites such as http://www.epilepsyfoundation.org/livingwithepilepsy/parentsandcaregivers/index.cfm, or ask your doc to provide some printouts with basic info about epilepsy. Are there epilepsy support groups in your area? Those can help too.

 

[sassi]

Any books of literature that you can grab up will be helpful as well. Giving them as much information as possible is good but it's also up to them to listen. You can lead them to the information but you can't make them listen. I couldn't make my dad listen until I seized and he saw me in the aftermath. I sincerely hope that this isn't the case for you and your family, that they'll become more supportive although I know how it feels with family not being all the supportive. There are probably several books out there but I'm unsure as to which one would be the best.

 

[Boozer]

Thanks guys. I talked to my kids a little yesterday evening. Mostly they are scared. They don't understand but do know that death can occur. My boyfriend doesn't want to hear about much until we have a doc say this that or the other thing. It's like it doesn't matter that I am having trouble right now only when there is a diagnosis. Even though the doc has said they are seizures of some sort. It just gets frustrating esp with the memory problems and my speaking during a seizure and when I do I say things that make sense but aren't exactly correct. For example yesterday I told my boyfriend that I will get $100 per kid for school supplies from the cyber school they go to ... then later I corrected myself when i was with it and told him what it really was is $100 twice a year total for school supplies. A big difference but still similar. I do this sort of thing all the time. A frustration for all of us. I know things will get better once I start AED medication if it works it's just holding on until then. Thanks again.
Erin

 

[KaySara]

Its difficult to get family to understand what we are going through. My family have no idea. Two weeks ago I came out of a fit and I was so 'normal'. I hadnt felt so like me since before I was hit by E 18 yrs ago. Oh to be normal and happy. My daughter, married with children, couldnt understand me, looked at me, chekced my temp, was so happy for me, the energy I had, It was living. I explained to my husband how I loved them, how I was feeling then and how I felt when hit by my bad moods after a seizure which was usual, these bad mood swings, fits of depression make for such a miserable life and the fatigue.....oh isnt it hell....I am going to ask my specialist, I see her on Tuesday next, about marijuana, I have been reading up on it and it sounds good to me, anything that offers any hope I am willing to try, Imagine driving again.....One must be positive instead of crying.......

 

[Boozer]

I have good days and bad days. But right now it's more bad than good. The month of July was a good month for me. I felt pretty good for most of the month. August has been relentless. There are times that I am so tired I can't even sleep. And I agree the mood swings are just as relentless. Well, I am having difficulty writing this so I will stop for now. Wish you luck with your doc.
Erin

 

[Crash]

There's a lot of ignorance about epilepsy, but many people become more understanding and supportive once they learn what epilepsy is all about. If you think your friends or family members are open to learning more, you could direct them to informational websites such as http://www.epilepsyfoundation.org/livingwithepilepsy/parentsandcaregivers/index.cfm, or ask your doc to provide some printouts with basic info about epilepsy. Are there epilepsy support groups in your area? Those can help too.

I think what Nakamova has said is perfect advice and putting it in layman's terms,you need to separate the chaff from the truth.Once you have done that it will give you a point from where to start asking the right questions and more importantly receiving the right answers and also understanding them.Don't let yourself be put down and always keep your chin held high.Also there is always C.W.E everyone hear is great and will do their very best to help,all the best.Keep us posted on how you are getting on!

 

[Aftershock]

I used these two comparisons for my friends... "in my head, it is like a computer with a bad hard drive, some times it is a small error but keeps running ie absence seizure, missed or wrong words, or forgetfulness. If the error is enough is bad enough the computer re-boots its self (I have grand mal seizures) and the part they see is the bodies response to the re-boot, all the twitching and grunting is like a sneeze, I can't stop it or control it. I told them toward the end I will pass out but. the only thing they could do is make shore they help me to the floor so I don't fall and hurt myself. I also told them it sounds bad but I am not in pain. We have all had PC problems and most can relate. The sneeze part and no pain put my kids at ease. I hope my experience helps

 

[Boozer]

Thanks. I never really thought about explaining it that way. Of course I will have to learn a little bit more about what kind of seizures I am having first. But that analogy works great.
Erin

 

[notime]

I will try my best, but lets just say I have a stubborn relative who refuses to accept a confirmed diagnosis of primary generalized seizures. My father is extremely difficult to deal with, and first day I went to see the neurologist, he was complaining on the way home about it. He still doesn't think it is epilepsy, even though the EEG confirmed it.

What I did was when he went into the office I explained to the neurologist how he doesn't accept it, and assumes it's other things as syncope, sleep apnea, and other conditions and my dad got extremely angry over that. The neurologist explained it to him though in simple terms so he could understand, but he still doesn't believe the doctor. The doctor even told him why I make noises when I have seizures, and why it isn't sleep apnea.

I finally bought a book, epilepsy 101 The Ultimate Guide for patients and Families Perfect, and still he didn't acknowledge and assumes it's my life style instead of epilepsy. I usually showed him youtube, research, videos of seizures, and so forth and he assumes that it's garbage and lies. I even showed him Hippocrates on the sacred disease talking about epilepsy, then he got offended because he talked about religion...

Perhaps you can educate them using one of these steps, it didn't help me. I wish people wouldn't be so close minded... Oh well though.

 

[Boozer]

I'm sorry that your Dad is so upsetting. It's too bad that some people just will not accept the truth. It really sounds like you have tried your best to give him the information needed to be informed. Just know you have done your best and that is really all you can do. Maybe in time he will come around and accept the seizures. Right now my family doesn't even want to talk about it. Instead of saying I had a seizure they would prefer me to say it was a blonde moment. (No offense to anyone who is blonde) I don't know if this is their idea of humor or what. So now I just laugh and say it was a blonde moment. I want to take the whole family to see the neurologist when I have more answers. Wish me luck.
Erin

 

[Aftershock]

so I am just a bag of meat in a chair, but I am a "people watcher" notime, I knew a guy that had a downs son. He would volunteer "his son was that way because the mother was a pot smoker" Now marijuana has never been found to mutate DNA! He refused to consider that half of the childs genetics came from him. I don't know all the details of his sons condition but he seemed to have this "macho" denial that he could be 50% responsible for the condition. He knew enough to care for his son, but his bravado kept him from learning everything about his sons genetic condition. epilepsy is genetic unless of certain damage.I don't know if this applies, but I thought I would offer this observation...