Epilepsy Foundation

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Speak Up Kentucky!

This is the home page for epilepsy advocates in Kentucky! Join us in our effort to find a cure, stop discrimination and improve access to care and treatment.

Members: 34
Latest Activity: Feb 17

Discussion Forum

my daughter needs friends

Started by linda hochstrasser. Last reply by Alyssa Stepp Jul 31, 2012. 7 Replies

Results from State Rep and Governor

Started by Tammy Johnson. Last reply by Tammy Johnson Feb 7, 2010. 4 Replies

UK Neuroscience Inst..Epilepsy Center..here I come!

Started by Tammy Johnson. Last reply by Tammy Johnson Jan 26, 2010. 3 Replies

Comment Wall

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Comment by Alyssa Stepp on September 26, 2013 at 2:12pm

Stacy: Sorry it's taken me so long to respond; I was down for the first part of this week w/a HORRIBLE migraine.) If you don't mind my asking, which part of KY do you live in? If you're in central KY, the Epilepsy Foundation of Kentuckiana regularly has activities & the newly-formed Central Kentucky Epilepsy Support Network is actually having a picnic this Sunday (9/29) at the Arboretum from 2-6. I understand about trying to find your place here...I moved here from Illinois & had to find all new doctors, but the one I have now at UK has done more for me than the ones in Chicago ever did!

Comment by Stacy Edwards on September 22, 2013 at 6:36pm

Hello Everyone! I am new to the area and its been a lonely time trying to find my place here. I can not work because of my side effects but I would like to find a few groups to join that wont make me feel aquard. I would like to make a few friends to go and do these fun activities always going on around the area. My husband works a lot so im a lone a lot. I have a cat and a rabbit. I go to Philadelphia for my Neurologist because thats where I am from, but I would like to find a local doctor, can anyone recommend? 

Comment by Ana Bailey on July 29, 2012 at 9:41am

For all those mom's looking for a great neurologist, I recommend Dr. Barbara Hallinan. She is at Childrens Hospital - Cincinnati so it may be a drive for you all in Louisville and Lexington, but believe me, she is completely worth it. In addition to being a doctor of medicine, she is also a PhD so she is on-top of all new mediciations. She just diagnosed my son with a very rare form of epilepsy that most doctors wouldn't even check for. My son's seizures are now controlled with the treatment which is amazing!

Comment by Mandy Salensky on July 26, 2012 at 11:18pm

Hello Everyone,

I didn't even know this board existed. I am Mandy. Mom to two beautiful girls ages 15 and 17. My youngest has Mitochondrial Disease and Dravet Syndrome. She has had a complete corpus callosotomy, the VNS and been on just about everything possible. Unfortunately she continues to seize and go into status on us. We live in Northern Kentucky. 

Take care,

Mandy

Comment by Tracey Wangler on July 26, 2012 at 4:55pm

Brand new to this community. My daughter and I have been in denial about her epilepsy diagnosis for four years. She just had her first seizure in four years - third seizure ever, and we need a referral for a good neurologist in Louisville. She went off her meds four years ago, after only taking them for a month or so (i don't ever remember what she was on). She decided the first two seizures were a fluke and she didn't like being on meds. Now that she's of driving age and has had another seizure, she needs to get on something or at least get to the bottom of these seizures (all three of them have happened in the same spot in our house - the foyer/staircase area). I think a good neurologist might have some clues as to what is causing these. Her EEGs four years ago (she had two) were both normal.

Comment by John on March 16, 2012 at 12:37pm

Pleasure to meet all fellows people from KY. Hope to get to known all of you very well. Myself I have had seizures all my life but I don't let them stop me from doing anything. I don't drive so PT is a necessity. I also am big into swimming and all groups have supported me in my endeavors when competing. I am training for a 3.1 mile swim in Indy in June. Hopefully will finish.

Comment by Beth Walton on December 29, 2011 at 2:33am

I am considering switching neurologist due to insurance reasons. I live in Garrard Co. which is about 30 miles south east of Lexington. Anyone recommend any good neuros in Lex. My siezures are controlled by medication so I basically go for checkups and to get refill scrips.

Comment by Alicia Bell on October 9, 2010 at 10:31pm
Well got a letter from the ss office have to go and talk to them or they will call me ether or on thursday bout my ssi mayb thats a good thing. its been almost a year since my first seizure as well as when i applyed. i think that if it would have been a no that they would have told me no already. i guess ill find out soon has n e one ever got a letter sayin what they need at the ss office and that they just need to talk?? if so please let me know. im worried to death. but wish me luck. good nite all sweet dreams n god bless
Comment by Alicia Bell on September 28, 2010 at 9:24am
OMG got up this morning and freezing cold. I hate it. Well my lil girl just got out the hospital. while we we in there the hospital called me back. the disability place is waitin on them go figure. mayb they will hurry n get my papers. I need to go to the dr but in a way I dont want to because its almost been a year since my seizures started. crazy how ppl remember like a b-day or sumthing. but its not easy to foreget the day after my lil girls bday. But im scared that if I go to the dr than that will take more time for the disability ppl and if I dont than they will want me too so ether way im screwed. mayb not. but i guess ima go one of my babies has a nasty diaper on. good luck to every one. and have a very good day :0)
Comment by Alicia Bell on September 11, 2010 at 12:51am
Hello ever 1 my name is Alicia Bell im 22 years old i have three wonderful children Chloe who is 6 Lil John 2 and Jada 9 months. Jada was born Dec. 1 09 and chloes b-day is dec 10th might as well tell you lil johns huh lol june 29 any who dec 11th of 09 I had what the dr's thought was a stroke because of the way I was acting they than said it was a seizure. I feel and hit my head and my brain was bleeding in two spots so they had to fly me from mayfield ky to U of L where they done lost of test and I really dont remember none of that I do remember that I couldnt walk for a long time and I got to come home a week before christmas and it was only because I jst had a baby and it was christmas. I still have seizures they still dont know why I have them I study on it all the time I do know that if me and my hubby fight I will have a seizure if I get too happy I will go into a seizure to much stress. Im trying to get disibility. when I was younger and in school I had a learning problem Im not the best speller im kinda slow and and I was also a very sick baby. my grandma said it was RSV but i was born in 88 and the dr.s didnt know what rsv was so it was asthma. I dont drive, I dont go out. I take keppra and topamax and well alot of other meds. I keep headaches. Me and my hubby found out that we were goin to have another baby but I lost it in june I dont know if it was because of my meds or if it just wasnt met to be. Im glad that there is a place that I can just talk to sum one or people about my seizures. Im new at this. I just got out of the hospital last month had 20 seizures in a week while i was in the hospital. My hubby is scared for me to be alone like I said Im 22 years old he had a girl move in with us so she could watch me. I felt like a baby. People look at me not as Alicia but as sick Alicia and that hurts so bad. I just want to thank each and every one of you. and I hope that we can all become friends. :0) its good to know that Im not the only one with this problem I just wish they knew Y they started and Y they wont stop.
 

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