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Helping my brother cope...
Fri, 01/23/2009 - 10:31My brother Joseph (19) was dignosed with epilepsy a little over a year and a half ago. He still has problems admitting that he has it, and it's very hard for him to actually say the words, "I have epilepsy."
Over the last year and a half though, he was done a lot to help himself control his seziures. He exercises daily, eats healthy, and trys to get plenty of sleep. (the only problem with that is his meds make him have bad nightmares, every night.) Within the last five months my brother has lost around 55 pounds, and is more physcially fit than I have ever seen him in my life.
Joe is to the point in his epilepsy where hes still angry at all the stuff he can't and won't be able to do until his seziures are under control. My brother loves to cook, hunt, drive...and so much more, and I know he is frustrated that hes not allowed to do anything.
I want to let my brother know that it is alright that he has epilepsy, that he will be okay, and that he can still live his life. I just need help reassuring him that he will eventually be able to stand on his own to feet.
I love my brother Joseph very much, out of all five of us, we are the closest. Ever since he got disnosed, we have become even closer, and my brother is my best friend. He tells me all his thoughts, fears, and stories, and vice versa. I want to do everything possiable to help him through all of this.
Any advice on helping out my brother would be great.
Shenoah Norem
(16 yrs old)
Comments
Re: Helping my brother cope...
Submitted by thatonegirl on Wed, 2011-05-25 - 00:47
I'm a 23 year old college student living in FL, and I was diagnosed with epilepsy when I was 8. It was hard being 16, 17 years old and not being able to get my drivers license like all of my other friends, but that is pretty much the only thing that hinders me.
It does irritate me sometimes when I want to go out to a club or something, and people get worried because of the flashing lights, (when actually, less than 2% of epileptics are affected by lights).
But I graduated. I've published short stories, and won dance competitions for a long time. I don't live with my parents, and if I can't get a ride from friends, I take the bus...thats just life.
I have friends. I go to school. I eat what I want.
I may not ever be able to drive, and I can't make people care as much as you do...and become educated...but a seizure isn't the end of the world, and I'm not going to let it stop me, and your brother shouldn't either. And it definitely isn't anything to be ashamed of. "Those who mind never matter, and those who matter never mind."
If anything it makes for interesting group conversation, trust me.
So don't worry. It just means you, and a good nuerologist standing behind him. If he takes his meds every day, he'll be fine. :)
Re: Helping my brother cope...
Submitted by skillefer on Fri, 2009-01-23 - 16:07
Hi Shenoah! It's not unusual for people to go through a time of being angry. Just curious....how well controlled are the seizures? I ask because if they are under control, then there is no reason why he can't cook or try to get his drivers license. I have grandmals. And, up until a recent med. change, I was having about one every 6 weeks. But I still cooked, did dishes, drove, and did other things. Of course, I also had a good idea when my seizures were going to hit. For me, it was hormone related. Does your brother know what causes him to seize? If so, then perhaps he can avoid what triggers his seizures. If he doesn't know what causes him to have a seizure, then he might try to keep a journal. In it he should record the following information:
1. Food and drink (what he consumes, when , how much)
2. Sleep (how many hours per night)
3. STress (any stress lately? What does he do to relieve it?)
4. Odd feelings (when, odd smells/sights/tastes/sounds/feelings?, deja vu, fogginess or spaceyness, migraines, etc....)
5. Seizures (when, where, how long was it, what was he doing just prior...)
What he'll want to do is keep track of that info for a while...then look back to see if there's a pattern. For example, does he only have a seizure on days when he drinks more then 2 cups of coffee? Stuff like that. Other common triggers are :lack of sleep, stress, too much caffeine, flickering lights or patterns, etc... By doing some investigating on his own, you may find that his mood lightens. :) It will help relieve some of the helplessness that he's feeling. Also, has he been to the doc since his weight loss? If not, he might want to consider doing that and having his blood levels checked. any large weight gain or loss can effect the amount of meds that they have to take.
Hi Shenoah! It's not unusual for people to go through a time of being angry. Just curious....how well controlled are the seizures? I ask because if they are under control, then there is no reason why he can't cook or try to get his drivers license. I have grandmals. And, up until a recent med. change, I was having about one every 6 weeks. But I still cooked, did dishes, drove, and did other things. Of course, I also had a good idea when my seizures were going to hit. For me, it was hormone related. Does your brother know what causes him to seize? If so, then perhaps he can avoid what triggers his seizures. If he doesn't know what causes him to have a seizure, then he might try to keep a journal. In it he should record the following information:
1. Food and drink (what he consumes, when , how much)
2. Sleep (how many hours per night)
3. STress (any stress lately? What does he do to relieve it?)
4. Odd feelings (when, odd smells/sights/tastes/sounds/feelings?, deja vu, fogginess or spaceyness, migraines, etc....)
5. Seizures (when, where, how long was it, what was he doing just prior...)
What he'll want to do is keep track of that info for a while...then look back to see if there's a pattern. For example, does he only have a seizure on days when he drinks more then 2 cups of coffee? Stuff like that. Other common triggers are :lack of sleep, stress, too much caffeine, flickering lights or patterns, etc... By doing some investigating on his own, you may find that his mood lightens. :) It will help relieve some of the helplessness that he's feeling. Also, has he been to the doc since his weight loss? If not, he might want to consider doing that and having his blood levels checked. any large weight gain or loss can effect the amount of meds that they have to take.