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@
or
adrien_collins@
Or
adrien.collins@
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-----Original Message-----
From: epilepsy@yahoogroup
[mailto:epilepsy@yahoogroup
mylmy@bnin.net
Sent: 08 June 2009 17:41
To: epilepsy@yahoogroup
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@
> or
> adrien_collins@
<mailto:adrien_
> Or
> adrien.collins@
<mailto:adrien.
>
> 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-
> <http://www.a-
> You can join the speakon user group by sending a blank
e-mail to:
> speakon-subscribe@
> <mailto:speakon-
>
> -----Original Message-----
> From: epilepsy@yahoogroup
<mailto:epilepsy%
> [mailto:epilepsy@yahoogroup
<mailto:epilepsy%
> On Behalf Of Laura Gresham
> Sent: 08 June 2009 02:19
> To: epilepsy@yahoogroup
<mailto:epilepsy%
> 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@
> <mailto:elizabethka
> <mailto:elizabethka
> To: epilepsy@yahoogroup
<mailto:epilepsy%
> <mailto:epilepsy%
> Cc: elizabethkaron@
<mailto:elizabethka
> <mailto:elizabethka
> 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%
<mailto:mylmy%
> <mylmy@bnin.net <mailto:mylmy%
<mailto:mylmy%
> 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%
<mailto:mylmy%
> <mylmy@bnin.net <mailto:mylmy%
>> <mailto:mylmy%
>> 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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