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| | From: SamIam1084 (Original Message) | Sent: 4/28/2008 10:26 PM |
Hi All,
I was thinking the other day. I guess you do that while watching your baby sleep in a hospital bed. I was thinking about his future and how he will live on his own. I wonder if he'll have his own place, have a job. He talks about having a wife, not a girlfriend, a wife. I guess he's skipping that part. I wanted to ask all of you, how do you live on your own with Epilepsy? I am hoping that what you share with me will help me to understand and relax a bit about my son. I'll never stop worrying about him. I was just wondering.
Thanks,
Sam I am |
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Hi Sam I Am, I have someone here that wants to chat with you she is my MOM. She knows exatly what you are going through. If you have any questions please leave them here and I will have my Mom write you back. Now you will have to give her some typing time she does not and have never used a computer, LMBO!!!! Mom does snail mail, LOL Hugs, withangels |
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I do snail mail! LOL Say hi to your mom!
Sam I am |
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Hiya Sam. Im sure by the time your baby is grown there will be even more medical progress in controlling seizures. On an adult side, I started having seizures last year and have a wonderful suport system. My daughter has ben great to me but she is also a full time college student and I don't want her saddled taking care of me. I live in a nice building with 7 other families. 3 of them have a key to my apartment. I also have a case manager who helps me with paperwork and making sure my prescriptions, medicaid and HUD recert paperwork is completed. last time I had a seizure I realized my bills get late because for a few days I don't even know who I am, less the electric bill! I like being organized and told her the next time I have one to please keep my mail in one place and help me write out the bills until I can do this on my own again. I am learning new ways as go along. I keep post it notes around until I am better to remind me of the things I need to do. All these little tricks will be second nature to your son because he will be dealing with this on a regular basis. I know as a parent its frightening. My daughter had febrile seizures as a baby and whenever she was sick I would tip toe into her room and take her temp with an ear thermometer. When she was really sick she stayed n bed with us. I recently met someone who is not afraid of the seizures. I was more afraid or being embarrassed or scaring this man if I had one. Well I did a few weeks ago and he was great. I told him what to do and not to panic. He was so great that if I had not bit my tongue so badly I may have slept on his shoulder even longer. I bet if you spoke with someone who is the mom of someone who has seizures you may get more comforting advice for the now and present time. Take care. Lori |
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Sam, How frequent are your son's seizures is the first thing I'm curious to know? Personally, I was diagnosed with seizures when I was about 5, outgrew them for a whole 4 years then mysteriously things came back when I was 16 & I've been on meds ever since and right now I'm almost 34. Right now - Keppra, Topomax & Clobazam it's been that combination for a few years. From age 19 - now I've had all different living arrangements. Age 19-22 I was in university living in residence. First year I had one roomate, Second - Fourth I had three. After grad, I lived at home for a bit to get organized, then moved out and got my own place when I was right around 24. A one bedroom appartment that was just far enough away from my mom & dad, but about a 10 minute drive, so if I ever needed anything they were there. I was 27 when I met Rick who I'm practically married to & we've been living together for about 6 years. He's really supportive of everything. Best advice I can give to you and your son along the way - he needs to accept epilepsy as a part of his identity, and just part of who he is. He needs to be able to tell a next door neighbour, roomate, or that wife that from time to time seizures may happen & what to do when they do. Then, from there not to make a huge deal. The more he stresses over it, the more seizures he may have (stress is a major factor). Also, the more different he will feel. Also, I always grew up having not many seizures but being told living alone wasn't a great idea, until I switched to my neuro in Toronto who basically said why not! They're just seizures once in awhile (enter why I ask about frequency). As I moved out, my dad would call me at night the first few weeks just to say hi, or I'd call my parents so they knew I was ok. In addition (and yup, doctor recommended), I always carry a cell phone with me. It has all my key contacts in it - Rick's Work, Rick's Cell, Parents, Doctors. I have complex partial seizures. I've been in a few situations where people are freaked, I snap out of 'em am still a little dazed but am able to at least grab my cell phone, call Rick & say here talk to him! The one thing that does make life a lot easier for sure, is I live in a city with great public transit. A bus pass for the month costs about $60, and I can take the bus just about every where. Being epileptic, a license can come and go. To live totally independent, take that into consideration. I know Rick would love us to get a place in the country. Thing is, I'd never be able to go anywhere because it's tough for me to keep a driver's license under Ontario laws (given up on that). Being able to take a bus to work & to a grocery store & just to get basic odd jobs done helps lots. The main step is being able to tell people you're epileptic and coming up with a plan. I know my neuro in Toronto (I live about an hour from there) helped me. Hopefully, your son will have a decent medical team to help him. Until then, hopefully this makes you realize it's possible. - Erin / Godiva |
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Thanks everyone! Dom has seizures few and far between. When he does, they are pretty bad. I have come to accept that maybe when he's older that he might have to live in an independent facility. What I mean is he'll have his own apartment but with supervision. Of course he tells me he wants a wife. No girlfriend, just a wife. ha ha He also has Autism. We'll just wait and see. He's only 9 now. He has plenty of time!
Sam I am |
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i had seizures since i was nine mos old went into a coma and almost died last time i had a seizure when i was 15 that was when they were changing me to another med i m 38 now and dont have any more use to take meds 3 times a day now 2 times a day my daughter is 9 she has had them since she was 7mos old and now on topmax which dr and i are weaning her off and keppra she has been seizure free for about 3 years now since we add the keppra i worried about her when she grows up too she also had autism global delay and exp lang disorder and as well as seizures cheryl |
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I started having seizures 18 months ago at age 47. they are not that often but the early ones did alot of damage. Now I am not as scared and paying attention to the signals I get. I keep a seizure diary to help me. I type anything odd and keep a small written journal as well (I can type alot faster). I keep my medical information on the fridge and by the door. I have a system that when I have a seizure my book tells me to look at note cards. I try to be humerous so I can relax. If anyone has seen the movie '50 first dates' I start out my note card with 'sorry abou your brain - everything will be ok'. I have notes to look at my laptop with the password if I forget. It helps to see that I had a setback before and after a few weeks pretty much everything comes back except some memory during the seizure itself. I have wonderful neighbors. I am one of 8 families in here and we all help each other. If I do not surface a few neighbors have my key and will stop by or call. I have been reading alot about the SR dogs and would like to get one in a few years. My daughter recently graduated from college and is back at home with me but I do not want to make her part of my system to rely on - she has her own life and I want to be independant. she will be working full time in the fall and starting grad school but will be home with me. Of course she checks to make sure I am ok but I dont want her to feel like she has to do this. I hope with time and technology we will have more warning signals either with medication that gets released in a patch if your brain signals a seizure is coming. Life is alot better for seizure patients than years ago. Lori |
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This message has been deleted by the manager or assistant manager. |
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Dear Vickie, I am kinda watching out for you here as I am an assistant of a couple groups. I would delete your last message and email SamIAm personally with your phone # if you would like to give our your number. Always in MSN Groups you never know if there are going to be "visitors" that come in and check the group out and ones that you will not trust. I know with the MSN Groups and Epilespy ones in the past we have seemed to have alot of Mortgage Rate people want to scam the Epilepsy groups. So just kinda want to watch out for you here as a friend. After you know that someone is truly going to be a good friend to you then I would say it's ok to give out your phone number when chatting in the chat room, on messenger, or through a personal email. All others hope this is a good message for all of you. Jana |
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Hi Vikie hunnie, How are ya doing? I did delete your phone # hun it is not good to put it up here, it is very dangerious. SamIAm if you did not get it I can give it to you hun. Call me or let me now and I will email it to ya hun..... Yes I know Vikie, we are both paticents and friends from NH, LOL I live in VT Thank you Jana for letting me know about this hun Hugs, withangels |
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