Monday, June 8, 2009

RE: [epilepsy] Re: New Here



Hi Adrien,

You have got a lot on your plate -- but you don't complain.
You are fortunate that you can live with your parents -- although
I'm sure there are lots of times you would like to be on your own.

Do you have a computer that talks to you? I knew a guy who was a
accountant. He was blind and his computer talked to him.

When I was diagnosed (DX) 47 years ago my doctor told me that I
could be without szs for 20 years and they may come back. For that
reason I decided to would always stay on my meds.

When I was DX 47 years ago I had 3 daughters 2, 4, and 6 plus a
husband (now ex). I've learned a lot from this group.

By the way-- are you male or female? In the US it could be either.

Millie

> Hi Mylmy
>
> Ok thanks for welcome to the group.
>
> Ok I live in France. I am 40 years old, live with my parents
> because of my disabilities, I am totally blind, in a
> wheelchair and am epileptic. All this is because I had
> encephalitis when I was 6 years old which left me like this
> but you have to put it behind you as much as possible and I
> have done just that. Ok I have bad days and very good days
> but in the main good ones.
>
> I have the three disabilities but to be honest the epilepsy
> is the worst because I never know when it's going to play
> up. I have lots of things I would like to know about it, and
> I hope from being a member of this list I perhaps would get
> some of my questions answered.
>
> For example, when I Neal down to do anything for any length
> of time, I start to feel fitty , I have only had major
> seizure when I have been kneeling. On one occasion I was on
> the floor sorting out my book shelf when I had a fit, what
> is causing this, is it lack of circulation? Nothing may
> happen but if I meal I can guarantee that the next day I am
> going to be fitty.
>
> I know my epilepsy is a result of the encephalitis, and it
> happened over 30 years ago and the epilepsy went away for
> about 10 years but suddenly returned in 19988 and for good
> in 1992, that's when it started getting very bad and they
> had to put me on tegretol. Why did it go away and then
> return?
>
> I'll just tell you how the epilepsy effects me, firstly I
> have grandmal seizures, I have to take 1000 mls of tegretol
> retard daily. I get headaches, my arms jerk, my
> concentration goes, tired, irritable and many other
> symptoms. If I'm not careful I stop breathing.
>
> Ok that's enough about me for now, I look forward to reading
> your responses. I'm find to find this group very
> interesting, thanks for letting me join.
>
>
>
>
> Regards
>
> Adrien
>
> You can get me off list at:
> adriencollins06@aol.com
> or
> adrien_collins@yahoo.co.uk
> Or
> adrien.collins@orange.fr
>
> Speakon is a free fully self-voicing accessible multimedia
> program for
> the visually impaired, find out more by downloading the
> software from:
> http://www.a-technic.net/speakon.htm
> You can join the speakon user group by sending a blank
> e-mail to:
> speakon-subscribe@yahoogroups.com
>
> -----Original Message-----
> From: epilepsy@yahoogroups.com
> [mailto:epilepsy@yahoogroups.com] On Behalf Of
> mylmy@bnin.net
> Sent: 08 June 2009 17:41
> To: epilepsy@yahoogroups.com
> Subject: RE: [epilepsy] Re: New Here
>
>
>
> Hi Adrien,
>
> Welcome to our group. Tell us about your self. I too am
> controlled but I have learned a lot from this group.
>
> Millie
>
>> Hi
>>
>> I am also new to the list and I just wanted to say high to
> you all.
>>
>> I have epilepsy myself and although it is well controlled
> I do have
>> problems with it so I'd be interested to read your
> messages over the
>> months ahead.
>>
>>
>> Regards
>>
>> Adrien
>>
>> You can get me off list at:
>> adriencollins06@aol.com <mailto:adriencollins06%40aol.com>
>> or
>> adrien_collins@yahoo.co.uk
> <mailto:adrien_collins%40yahoo.co.uk>
>> Or
>> adrien.collins@orange.fr
> <mailto:adrien.collins%40orange.fr>
>>
>> Speakon is a free fully self-voicing accessible multimedia
> program for
>> the visually impaired, find out more by downloading the
> software from:
>> http://www.a-technic.net/speakon.htm
>> <http://www.a-technic.net/speakon.htm>
>> You can join the speakon user group by sending a blank
> e-mail to:
>> speakon-subscribe@yahoogroups.com
>> <mailto:speakon-subscribe%40yahoogroups.com>
>>
>> -----Original Message-----
>> From: epilepsy@yahoogroups.com
> <mailto:epilepsy%40yahoogroups.com>
>> [mailto:epilepsy@yahoogroups.com
> <mailto:epilepsy%40yahoogroups.com> ]
>> On Behalf Of Laura Gresham
>> Sent: 08 June 2009 02:19
>> To: epilepsy@yahoogroups.com
> <mailto:epilepsy%40yahoogroups.com>
>> Subject: Re: [epilepsy] Re: New Here
>>
>>
>>
>> i will have to ask his speech therapist about that when
> school starts.
>> we have gotten to where we can kind of read his body
> language when he
>> doesn't talk. it's so sad.
>>
>> ________________________________
>> From: Elizabeth Last NameSilva <elizabethkaron@yahoo.com
>> <mailto:elizabethkaron%40yahoo.com>
>> <mailto:elizabethkaron%40yahoo.com> >
>> To: epilepsy@yahoogroups.com
> <mailto:epilepsy%40yahoogroups.com>
>> <mailto:epilepsy%40yahoogroups.com>
>> Cc: elizabethkaron@yahoo.com
> <mailto:elizabethkaron%40yahoo.com>
>> <mailto:elizabethkaron%40yahoo.com>
>> Sent: Sunday, June 7, 2009 6:32:14 PM
>> Subject: Re: [epilepsy] Re: New Here
>>
>> between the childhood aphasia (like adult altizmers Im
> sorry I can't
>> spell very good this evening) and her anxiety thats what
> the speech
>> therapist diagnosed it as. She does get it back its just
> frustrating
>> as can be till it happens.
>>
>> ____________ _________ _________ __
>> From: Laura Gresham <greshamlaura@ yahoo.com>
>> To: epilepsy@yahoogroup s.com
>> Sent: Sunday, June 7, 2009 5:55:56 PM
>> Subject: Re: [epilepsy] Re: New Here
>>
>> I was never told that is what it was. My little Aeidan
> goes days
>> without talking also, generally after heavy seizure
> activity or too
>> much excitement (i.e. being in the sun).
>> Laura
>>
>> ____________ _________ _________ __
>> From: Elizabeth Last NameSilva <elizabethkaron@ yahoo.com>
>> To: epilepsy@yahoogroup s.com
>> Cc: elizabethkaron@ yahoo.com
>> Sent: Sunday, June 7, 2009 4:15:54 PM
>> Subject: Re: [epilepsy] Re: New Here
>>
>> My 6 and half year old daughter is unable to talk at times
> after her
>> seizures.. They said she has childs apasia bout the same
> thing your
>> talking about. It takes up to 48 hours to regain her full
> functioning
>> conversations back. But she does get it back.
>>
>>
>>
>> ____________ _________ _________ __
>> From: "mylmy@bnin.net <mailto:mylmy%40bnin.net>
> <mailto:mylmy%40bnin.net> "
>> <mylmy@bnin.net <mailto:mylmy%40bnin.net>
> <mailto:mylmy%40bnin.net> >
>> To: epilepsy@yahoogroup s.com
>> Sent: Sunday, June 7, 2009 3:36:58 PM
>> Subject: Re: [epilepsy] Re: New Here
>>
>> Nancy,
>>
>> Yes, my doctor knows this because my daughters call him or
> his stand
>> in after they have been called. He has never seen me when
> I can't
>> talk. (It usually happened on a weekend and he is not
> available) to
>> see me anyway.
>>
>> 6 years ago I was admitted to the hospital and had an MRI,
> Ultra
>> Sound, CScan and an EEG. Then he thought I had a TIA
> (small stroke)
>> but everything happened like before. The last time 2 years
> ago I asked
>> him if it was a TIA or a sz. He thought it was a sz. He
> didn't see me
>> either time until Monday morning.
>>
>> I usually go in Monday morning and he checks me out. By
> then I am
>> talking again but he can tell that I am not quite my usual
> self and I
>> am not to drive. Between my daughter and I
>> -- we tell him what happened. (At least what little I
> remember and
>> whatever anyone else has seen of me). He sends me to get a
> blood test
>> to see if my meds are low.
>>
>> You will have to remember I don't have many szs. My last
> one was 2
>> years ago and before that it was 4 years.
>>
>> Millie
>>
>>> does your dr. understand this.. maybe I should see
>> another dr but he
>>> is suppose to be the best. Nancy
>>>
>>>
>>>
>>>
>>> ____________ _________ _________ __
>>> From: "mylmy@bnin.net <mailto:mylmy%40bnin.net>
> <mailto:mylmy%40bnin.net> "
>> <mylmy@bnin.net <mailto:mylmy%40bnin.net>
>>> <mailto:mylmy%40bnin.net> >
>>> To: epilepsy@yahoogroup s.com
>>> Sent: Sunday, June 7, 2009 1:31:34 AM
>>> Subject: Re: [epilepsy] Re: New Here
>>>
>>>
>>>
>>>
>>>
>>> Nancy ,
>>>
>>> When I was diagnosed (DX) 47 years ago I had grand mal
>> szs.
>>>
>>> About 15 years ago they changed to more like complex
>> partials--
>>> according to what I read. I start out by acting like I
>> don't hear you.
>>> Since I live alone I sleep a lot. Other wise I am
> probably
>> sleep
>>> deprived. I walk to places I don't remember later. If I
> do
>> talk my
>>> friends know I am not my usual self. Then I have trouble
>> talking (my
>>> brain isn't working right.)-- then I can't talk at all.
>>> This is usually over the course of 2 days. My girls say
> my
>> brain is
>>> scrambled. -- Then like a light switch-- my brain turns
> on
>> again.
>>>
>>> I have sent out instructions to people in my building
> that
>> when I am
>>> not my acting my normal self -- to call my 2 daughters
> who
>> live in town.
>>> It takes about a week to be my usual self. My last one
> was
>> 2 years ago.
>>>
>>> Millie
>>>
>>>> thanks for the input that I have complex partial seizues
>> or tempole
>>>> lobe.
>>>> as my dr really does not know. but I do not pass out.
>> after I have
>>>> one I am feeling reallyweird, like everything is really
>> far away.
>>>> even things up close are far away. and most of the time
>> it last all
>>>> day. It affects my eyes as I can not see. sometimes it
>> is in just
>>>> my right eye and sometimes in both. He did say the right
>> side of my
>>>> head is worse, by all thetes he has giving me. Most of
>> the time I
>>>> know I amhaving having one but alot of times it just
>> comes on me and
>>>> it is crazy. is there anyone else that has these
> simtoms.
>>>>
>>>>
>>>
>>>
>>>
>>>
>>>
>>>
>>> [Non-text portions of this message have been removed]
>>>
>>>
>>
>> [Non-text portions of this message have been removed]
>>
>> [Non-text portions of this message have been removed]
>>
>> [Non-text portions of this message have been removed]
>>
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