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Epilepsy: Fighting For A Cure

June 27, 2010 5:00 PM

More Americans are suffering from epilepsy than Parkinson's, cerebral palsy and multiple sclerosis combined. Katie Couric reports on a disease that may not be getting the attention it deserves.

Epilepsy: A Fight For The Cure
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by kittens12 December 26, 2011 5:49 PM EST
i have severe epilepsy. i was diagonsed at sixteen. i am now on my third anti seizure med with very little seizure control. me and my doctor are considring vns now.
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by martysmom2011 July 27, 2011 11:55 PM EDT
To all of the families dealing with epilepsy:

I just want to say I applaud your bravery to keep trying to help those suffering from this disease. I had friends and went to school with people who suffer from epilepsy so I have personally seen how it can affect a person.

Through all of the negative just remember the promise held out in
Isaiah 33:24 that soon "no resident will say 'I am sick.'"

I look forward to that time I just wanted to pass that on as a bright glimmer of hope until then.

Take care and I wish the best as you continue to care for those suffering.

Sincerely,
ACH
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by julzieluv April 19, 2011 9:19 AM EDT
My husband has epilepsy. He takes no medicine. The medicine is just no good for the body. When he has one coming on, I just give him Magnesium Serene in the powder form. He takes one drink and it completely goes away. That's all that is needed! Magnesium. I encourage multivitamins, so he takes a B multi and just started a magnesium calcium supplement, but the powder form when he has one completely stops it. I don't know why people are trusting these worthless prescriptions?
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by foxglove77 July 10, 2010 7:45 PM EDT
Thank you CBS, Katie Couric and the Axelrod family for bringing this much needed story to the public awareness. I started having blackouts at 14 , and had my last at 32. I was one of the lucky ones. But it was not easy. I graduated from trade school in 1976, and jobs were not easy to come by. But I have worked hard, and had some very good people in my life which meant alot. I have helped someone who had a seisure once. He fell and hit his head. Everyone just stood there. I said call 911.

Even though I haven't had and seisures in almost 30 yrs my doctor insists I still take the medications, go for visits, and report all to the regisrty of motor vehicles. (Where they treat you like you have some awful disease.) Why are people so crual. I hope the medical field will realize there are those with severe and not very severe issues, and try to help them all.

I don't drink, so I won't me stopped for driving drunk. But they get treated better then someone with epilepsy.

And please say to President Obama. What is this county turning into. We watched the news the other night and a luxury county club of some sort was built with money from money outside the USA, and the person or persons donateing the money got citizenship. Look into that story please.It should never happen. This is America !
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by genevieve8974 July 9, 2010 1:29 AM EDT
My brother had his first seizure 1.5 years ago it was scary he has been on Depakote ever since and has never had a seizure. I am thankful that we have be blessed to not go through the months of watching him have a seizure and not know whats going on anymore but i still don't go through the day without worrying if he could have one and no one be there to help him, thats why i became involved in donating money to find a cure for those who aren't as lucky as my family and have to watch their loved one have a seizure everyday. so i'm glad epilepsy is becoming more aware and i pray for you all who deal with this daily
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by barsmi July 2, 2010 11:28 PM EDT
I had seizures for 44 years. At the age of 54, I became seriously ill- I had trouble walking, thinking clearly,loss of feeling, and began stuttering. after 4 mos. of searching for answers, we called the Mayo Clinic in AZ. I went through weeks of testing, monitoring brain waves (audio/video) in a hospital setting), The team of neurologists/brain sugeon agreed that I was a candidate for surgery and the felt they could cure me. Surgery was done a month later and2 and1/2 yrs later- I AM CURED!No seisure meds anymore! I am truly blessed It was likely that my seizures were caused by meningitus as an an infant. The surgeon removed 4 inches from my left temporal lobe. There was a good chance I would be be in a wheelchair had I not had surgery. Surgeons told me that it was like a "volcano waiting to errupt" in that area of my brain. I am doing very well today- took about 18 mo. to fully recover.I highly recommend the experts at Mayo clinic- They specialize in living w/ epilepsy, driving, etc.
I hope this gives hope to someone out there!
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by 7SmilethruIt8 July 1, 2010 12:10 PM EDT
I have epilepsy myself. Mine started at 12yrs though. My dr. had me try every anti-convulsant available but I'm allergic to most anti-convulsants so they only made mine worse. They attempted to give me brain surgery in I think it was 1997. I was the same age as she was!!!My father is in community theatre and even when my seizures were really bad I would be helping them. I was only there because my parents didn't want to leave me at home alone though. I could never dance or do many of the things others could. The music helped me to cope and my memories of actors are one of my inspirations!
It REALLY caught my eye that her mother mentioned how she calls out for her! I used to do that too!!!
At the time I had epilepsy sooo bad that I couldn't ever think, so I did not really understand the seriousness of it. I had bruises all over me though. I had to get glasses that bent because I would break so many glasses that my parents could afford to get new ones for me all the time. I had pads on my bed, etc. I broke my nose a couple times...etc.
I was depressed though when my seizures didn't go away and I had looked forward to that for so long.
Same thing goes for driving and doing alot of the things that others can.
I went back in 2003 after having up to 100 seizures a day and had brain surgery again. My brain surgery was the type when they actually took out a piece of my brain. I woke up with my left side temporarily paralyzed. I had to relearn to do everything. The left side of my neck didn't work so they would not allow me to eat whole foods until it did.
I went around in my wheelchair singing songs from musicals that I had learned because everyone looked so sad.The songs and memories that I had from theatre would help me to cope later on.
A friend of my mothers wanted to teach me to paint and thought that it would be good therapy for me before the surgery.I was excited to learn but now that my left side did not work...I thought that I wouldn't ever paint.Rehab. was the first place that I painted.
After alot of rehab. etc. I went for awhile not having seizures at all but I still had to take meds. Just not as many.
My seizures came back though just in another form. I woke up a couple times with blood on me from biting my tounge so much. That happened after I tried to work for a year.I couldn't take the stress. Now I have non-convulsive seizures but they aren't as bad as the convulsive ones.
I paint now as therapy and have often donated 100% of the paintings to different foundations, etc. I think it's funny when people don't understand why I donate 100%. What price can you put on a life!? Besides I can't do math well.
I REALLY REALLY wish that I could have my own show one day. I made a painting for 911 and if I knew where to donate it or had a place to hang it and put it on display I could help. There is a story behind why I made that painting.
I met someone at the post office that lived in NY during the 911 event. He lost a friend there and told me about it, how that was why he moved here. I went home and made that painting.
After brain surgery it is very odd. I paint in many different styles. I've actually now been published a few times because I used to write for a magazine. Although I wasn't paid and had to research over and over before I would know the meaning of things. I hope that one day, I can help my family by getting a job online. I still can't drive and can't walk as often because I am in pain now. I go from being able to think one day to not being able to think the next. It's very odd!! Just as they mentioned on here...I wish that they had the money to research more because if they did. I think that even years after having brain surgery if there's some sort of activity in the brain it should be researched.
I'm going to an Epilepsy Surgery reunion next month that I look forward to. I'm donating alot of my paintings, some jewelry that I have made. :) I love knowing that I have helped to put smiles on peoples faces. :) I can't wait to see my nurses after something like that they become like family.
It's wonderful to see that she is doing so well!!! :) I've dreamt of a place like that but could never afford it.
Plus there are only some days when I can't think and others that I think fine, others that I think WAYYYYYYYYY to well.
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by crestedibis June 30, 2010 8:36 AM EDT
Kennith, the cretin Couric.
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