Tuesday, June 9, 2009

RE: [epilepsy] Re: New Here



Adrien,

What do you mean by having storms? What happens?

Where were you before you came to France?

Millie

> Hi Mylmy
>
> Ok I am mail.
>
> Yes I have a talking computer, plus I have a new netbook,
> Computers are my main interest nowadays. I help maintain all
> the pc's in the house and Have taken on the computer of a
> computer illiterate friend round the corner, he asks me how
> to sort things on his pc, and it's good, it helps keep me
> busy and occupied. Having the different disabilities, if you
> are not careful, you can soon get in to a rut and get very
> depressed, it's very easy to let yourself go but keeping
> occupied with talking books, magazines, computers, music,
> the radio and of course learning french helps to keep my
> mind busy. Besides, life's just far too short!!
>
> When I came to France, I got on ok because my name is french
> so it's easy for them to say.
>
> Epilepsy is strange, you can have nothing for months and in
> my case years, my last major sz was in 1997, but I still
> have the storms. In fact the neurologist thought it was
> migraine but it definitely isn't!
>
>
> 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: 09 June 2009 01:02
> To: epilepsy@yahoogroups.com
> Subject: 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 <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 mylmy@bnin.net <mailto:mylmy%40bnin.net>
>> Sent: 08 June 2009 17:41
>> To: epilepsy@yahoogroups.com
> <mailto:epilepsy%40yahoogroups.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>
> <mailto:adriencollins06%40aol.com>
>>> or
>>> adrien_collins@yahoo.co.uk
> <mailto:adrien_collins%40yahoo.co.uk>
>> <mailto:adrien_collins%40yahoo.co.uk>
>>> Or
>>> adrien.collins@orange.fr
> <mailto:adrien.collins%40orange.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>
>>> <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>
>>> <mailto:speakon-subscribe%40yahoogroups.com>
>>>
>>> -----Original Message-----
>>> From: epilepsy@yahoogroups.com
> <mailto:epilepsy%40yahoogroups.com>
>> <mailto:epilepsy%40yahoogroups.com>
>>> [mailto:epilepsy@yahoogroups.com
> <mailto:epilepsy%40yahoogroups.com>
>> <mailto:epilepsy%40yahoogroups.com> ]
>>> On Behalf Of Laura Gresham
>>> Sent: 08 June 2009 02:19
>>> To: epilepsy@yahoogroups.com
> <mailto:epilepsy%40yahoogroups.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>
>>> <mailto:elizabethkaron%40yahoo.com> >
>>> To: epilepsy@yahoogroups.com
> <mailto:epilepsy%40yahoogroups.com>
>> <mailto:epilepsy%40yahoogroups.com>
>>> <mailto:epilepsy%40yahoogroups.com>
>>> Cc: elizabethkaron@yahoo.com
> <mailto:elizabethkaron%40yahoo.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>
>> <mailto:mylmy%40bnin.net> "
>>> <mylmy@bnin.net <mailto:mylmy%40bnin.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>
>> <mailto:mylmy%40bnin.net> "
>>> <mylmy@bnin.net <mailto:mylmy%40bnin.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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