Epilepsy Foundation

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Speak Up Missouri!

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

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Lets start a support group, anyone in?

Started by jennifer key. Last reply by Theresa Davidson Jun 19, 2013. 9 Replies

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Started by stacy prentice. Last reply by Kerri Thogerson Sep 2, 2009. 2 Replies

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Comment by Carlton Zeigler on February 27, 2014 at 1:31pm

Connie

Your report is thorough enough for graduate school.  

One of the primary reasons that the Epilepsy Foundation exist, is to serve as a resource for those of us.  The foundation gathers this information and gives it to those who call.  It also provides other services, that varies per location. 

Your local office has served you well.  You have been provided with contact information to the very types of organizations that I would have suggested.  

I do suggest that he be upgraded from a neurologist to an elipetologist as quickly as possible.  The mood swing are quite common.  Epilepsy patients have their own special, rather percicious,  type of depression, called "Postictal" depression.  Unfortunately seizure medications can contribute to this depression.  In fact, if he had let an epileptologist treat his epilepsy, he would not have been given prozac.  At his seizure rate prozac is a very bad idea.  Among its most common side effects; are drowsiness, dizziness (which are both side effects of epilepsy medications), and SEIZURES.  That's right, prozac can actually give you seizures.  He has made a very good choice to start seeing a more appropriate doctor.

I understand that he is likely comfortable with where he is living, but he should consider living in or near a more urban area.  Urban areas provide access to services.  I grew up in a suburb, but when I left my parents home, I moved even closer to the city.  Being near public transportation allows me to work (when I am not hospitalized due to seizures).  I need to be close to my doctor.  "Out in the country" is not an option for me..

I did something similar to your "Votec".  I was trained to use a number of business computer applications.  

You have made some great choices about his future.

Carlton

Comment by Connie Baker on February 27, 2014 at 7:44am

Good Morning Carlton,

My son is 28 yrs old.  Has had seizures (grand mal) for 5 yrs now, takes Topimate (sp?), generic for Topamax.  He has seizures anywhere from 1 or 2 a month, a few times 2 in 1 day to 4 mths apart.  He has never made it past 6 mths.  So therefore, he can't drive, loss his job when this first started happening, has mood swings, and I would say depression.

Tried disability several times, even had a lawyer once and went to court and still denied.  For his depression I got him to go to see a counselor a couple of times and he went to see a psychologist, who gave him Prozac to take, but it gave him bad headaches and quit taking and don't want to go back to either one.

His fiance and their 7 yr old daughter moved out last December, because she was tired of his mood swings and his hatefulness towards her.  He lives in the country, there a few neighbors close by, but they stay to them selves.  His brother is staying with him now. I live 30 miles away from him.

My question when I first got on here, was how did others who have epilepsy go on with their lives, is there help out there that I don't know about, etc. What services are available?   I am tired, he won't try to do things on his own.  He doesn't have internet access and now doesn't have a cell phone because he got mad when it didn't get service on time and broke it.

He has finally gotten medicaid and is going to see a neuro 3/26.  The votec is Vocational Rehab.  Told they help train you in a job and help you find one.  Meet with them 3/6.  Just found out about another organization about a week ago and called on it, Coalition for Independent Living, they help with living arrangements, jobs, have an appt with them 3/5. As far as the EF, when I called them to find help all they did was give me other places to call to try to get help.

Hope I got everything.  Got to get ready for work. Thank You.

Comment by Carlton Zeigler on February 25, 2014 at 4:15pm

St. Louis
4406 St. Vincent
Saint Louis, MO 63119
(314)781-4949 or (800)264-6970

Kansas City
6400 Prospect Ave, Suite 300B
Kansas City, Missouri 64132
(816)444-2800 or (800) 972-5163

Email: epilepsy@stl-epil.org

Comment by Carlton Zeigler on February 25, 2014 at 4:11pm

Juanita

Connie

Whereas I am late to this discourse, would you please catch me up to speed?  How old is her son?  What is his medical status?  Does the son live alone?  What services are available?  Is there a local chapter of the foundation in her state?  Where do you live Connie?  Is there a state rehabilitation organization (government sponsored) ?

Comment by Juanita Stephens on February 25, 2014 at 12:49pm

Carlton, I believe Votec is Vocational Rehab, I could be wrong not sure. Seems like her son is unable to help himself and needs assistance , Connie is not sure how to help or if she even should. 

Comment by Carlton Zeigler on February 25, 2014 at 9:24am

Connie

What is the "Votec".  I am just trying to get a better understanding of your issues. 

Comment by Juanita Stephens on February 24, 2014 at 1:00pm

Connie, sounds like you have done just what you need to do. Sometimes those closest to us are not the ones to accept help from. I do hope they can help him. 

Comment by Connie Baker on February 24, 2014 at 11:54am

Sorry guys...I thought Carltons question was for you Juanita?  He has an appt with the Votec Rehab on 3/6.  Right now, I am having to do most of the calling, as he got mad at his phone and broke it.  My son lives about 30 miles away from me.  

I also called an organization Fri., called the Coalation for Independent Living or something like that.  Anyways, really got my hopes up with them.  A case worker is to get ahold of me this week to set up a time. From my understanding they help with living arrangements, jobs, with filing for disability, etc.  I think that is what he needs, someone besides me to help him through this.  We butt heads alot, don't know if it because I'm mom....and us moms, I guess, think we know everything!

Did I answer your questions?  Hope so.  Is there something else I should/need to do?  

Comment by Juanita Stephens on February 19, 2014 at 9:04pm

Connie, as Carlton asked what is holding you back ? Did you get the number is he unable to call ?

Comment by Carlton Zeigler on February 19, 2014 at 4:55pm

Juanita

What is the issue that is holding you back?  Is it a time problem ?

 

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