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Medical Forum / Diseases and Disorders / Epilepsy / May 2004

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Epilepsy: The Invisible Disability

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g-mal - 24 Apr 2004 23:41 GMT
Epilepsy is well known but is not often well understood. Around
350,000 people may have epilepsy in Canada; Epilepsy is a recurring
disruption of brain function that results in seizures, or ‘fits'.
These fits range from absence seizures (which can be mistaken for
daydreaming) to seizures involving loss of consciousness (Grand mal)
convulsions, abdominal pains, periodic vomiting, frothing at the
mouth, respiratory arrest, also the physical
exhaustion and sleep, which can be followed by more severe seizures,
and then a loss of recent memories… this is my life, and I live it
from "black out" to "black out".

Unlike the "dark ages", today the neurological disease is widely known
and in some cases can be treated with drugs, or surgery. (Although I
am still prevented from being a productive member of society) Due to
the severity of the "attacks" the people of an earlier era's would
have labelled me with having a demoniacal personality, and I would
have been killed to protect the people of that time, or they would
"Drill" into my skull to release the demons.
Today there is a more "humane" way of handling those with my condition
(I personally think the attitude of society changed due to the "shame,
guilt, and the "skeletons in the closet" were cast into the light of
being) there are the drugs, that have a certain amount of side
affects, and there is sterilizations for those who request it, (in the
mid 1960's they wouldn't ask, they would just do it after placing a
person in a mental hospital for the rest of their lives, not to
mention the daily fear of "shock Therapy" ) also the  removal of brain
tissue is still being "practiced" today, I was told that it would
leave me in a "vegetative state" for the remainder of my life, due to
fact that it is not localized, but the whole brain is affected.

When someone with epilepsy endures periods of intense emotional
distress they can react by
Having a seizure, and this can often impair his/her role as a student,
worker and a member of society. This has produced psychological
frustrations, conflicts, and the complications of
Serious limitations of education, for how can they be taught if they
can forget that easily?
(Or in some cases… why should they?)--(I have heard that one before!)
I believe we as a society are far from resolving the
misunderstandings, and the dispelling of ignorance's and fears that so
often complicate the proper management of this disease, such as
employment, and other matters in life that a "normal" person takes for
granted, but to me they are privileges that I can never experience
Employment presents several special problems, such as limitations on
driving, the handling

Of machinery, and climbing on to high places, therefore this often
limits the work activities

Available to me. A far greater still is the unwillingness of most
employers to hire Epileptics,

Considering the past attitude's in society this is not at all
surprising.

A major factor is the liability insurance coverage used by most
employers, even though the

Employer may be sympathetic he/she is hesitant because of the fear
that the employment would adversely affect their "workmen's
compensation insurance" ratings and premiums
They feel that not only am I " a danger to myself, but a danger to
others" (I have also heard that before)
So how exactly am I suppose to find a job if it's illegal for me to
hold licence to drive, or get a job without lying about my medical
history, which I have done in the past just to "feel normal"… if just
for a little while.
And to think today that we call ourselves an "ADVANCED NATION".
M - 25 Apr 2004 09:16 GMT
>Employment presents several special problems, such as limitations on
>driving, the handling

>Of machinery, and climbing on to high places, therefore this often
>limits the work activities
[quoted text clipped - 17 lines]
>history, which I have done in the past just to "feel normal"… if just
>for a little while.

Get the job, then mention the epilepsy as an aside whilst you're signing
the contract. The employer is then in no position to withdraw their
offer.

I'll never forget the look of horror on a previous employer's face when
I did this, and there was nothing he could do :)

Signature

Malcolm    

turbinado - 28 Apr 2004 22:20 GMT
Yesterday I had to warn my teacher and my classmates that I was at risk of a
seizure, to let them know NOT to phone an ambulance if it happened. Of
course, nobody said anything nasty (I have never yet had that happen, except
for my mother-in-law), but things got a bit quiet for a few minutes and I
was horribly embarrassed...

> Get the job, then mention the epilepsy as an aside whilst you're signing
> the contract. The employer is then in no position to withdraw their
[quoted text clipped - 5 lines]
> --
> Malcolm
gaross - 28 Apr 2004 23:10 GMT
 I think you were around (before) when I mentioned I had received a
Prescription for Lorazepam 1mg Sublingual (Ativan in Canada).   I don't know
(also) if that would work for your type of szr.
  When I needed it, one tablet dissolves under the tongue, and enters the
bloodstream there.  My aura would clear within about 10-15 minutes, although
it also acted as a sedative, so would make you tired also afterward.   G.

> Yesterday I had to warn my teacher and my classmates that I was at risk of a
> seizure, to let them know NOT to phone an ambulance if it happened. Of
[quoted text clipped - 11 lines]
> > --
> > Malcolm
g-mal - 29 Apr 2004 20:21 GMT
> I think you were around (before) when I mentioned I had received a
> Prescription for Lorazepam 1mg Sublingual (Ativan in Canada).   I don't know
[quoted text clipped - 20 lines]
> > > --
> > > Malcolm

Is this Drug costly?
gaross - 29 Apr 2004 22:38 GMT
> "gaross" <> wrote in message
news:<_YVjc.8258$huU.4061@news04.bloor.is.net.cable.rogers.com>...
> > I think you were around (before) when I mentioned I had received a
> > Prescription for Lorazepam 1mg Sublingual (Ativan in Canada).   I don't know
[quoted text clipped - 4 lines]
> >
> > > Yesterday I had to warn my teacher and my classmates that I was at
risk of  a
> > > seizure, to let them know NOT to phone an ambulance if it happened. Of
> > > course, nobody said anything nasty (I have never yet had that happen,
except
> > > for my mother-in-law), but things got a bit quiet for a few minutes and I
> > > was horribly embarrassed...
[quoted text clipped - 9 lines]
>
> Is this Drug costly?

 They usually only prescribe it in lots under 30? tablets.   I don't have a
receipt handy (since last time I got it was about 1995),  but with the
prescription charge at the pharmacy it was about 1/3? the cost of 200
tablets of Tegretol or Frisium (Canadian Dollars).    It seemed to me the
Prescription Filling cost (~$9.) was almost as much as the pill cost. I
can't find a recent receipt since it's been a while since I last filled any.

  I think they're part of a set that are potentially habit forming,  but
when I was uncontrolled for Complex Partial type szrs.  I used only one or
two per week at first (when I had an Aura),  later I got down to one each ~2
weeks or longer, and last I used was just ahead of my Daughter's wedding
(no point having a szr. There! ) in ~2001.
   I took some with me to Hawaii and back and didn't need any to compensate
for the Pressure Change when they started up the Plane.  (My szrs. used to
be worse during rapid Pressure Changes in the air.)
   I think Lorazepam is listed under the Medications Glossary of Ep.
Foundation of America site -- http://efa.org    G./
g-mal - 29 Apr 2004 20:18 GMT
> Yesterday I had to warn my teacher and my classmates that I was at risk of a
> seizure, to let them know NOT to phone an ambulance if it happened. Of
[quoted text clipped - 11 lines]
> > --
> > Malcolm

HA-HA-HA-HA..That is funny[LOL], Malcolm,....youput a big smile on this face.
G-mal
----------
M - 29 Apr 2004 23:19 GMT
>> "M" <webmaster@need.to.remain.anon> wrote
>>
[quoted text clipped - 6 lines]
>> >
>HA-HA-HA-HA..That is funny[LOL], Malcolm,....youput a big smile on this face.

I agree it may be funny - he had no way to back out, and as I'd been
honest he couldn't dismiss me for failure to disclose. But the fact that
it's true and that we have to resort to such tactics implies there's
still a long way to go in terms of public acceptance of epilepsy.

There are many other conditions/illnesses with similar public phobias,
and I stress that I would not wish them on anyone, but I must admit to
wondering sometimes whether writing "HIV+" in the medical section of a
job application would be an advantage over writing "Epilepsy".

Political correctness (in UK at least) carries a lot of weight if you
can get it attached to your condition. All it needs is publicity -
recent TV footage of four happy little boys all in need of bone marrow
transplants produced a truly massive public response within hours.

Some conditions (which I will not name) have reached the situation where
it is 'trendy' to suffer from them.  Not so for epilepsy, and the
balance of research, funding and awareness is sadly not proportional to
the occurrence of the condition. As the heading says, it is invisible.
I'll use invisible ink on my next job application form.

Signature

Malcolm    

Dawn Compton - 01 May 2004 05:21 GMT
>I had to warn my teacher and my classmates
>that I was at risk of a seizure, to let them know
[quoted text clipped - 3 lines]
>mother-in-law), but things got a bit quiet for a
>few minutes and I was horribly embarrassed.

You are lucky.  Ever since people at my high school (bad news goes
around quickly) found out I had epilepsy (not technically diagnosed, but
I show the same problems), I have lost a lot of friends, my classmates
treat me like an alien, and my teachers treat me like a piece of glass.
gaross - 01 May 2004 17:05 GMT
> >I had to warn my teacher and my classmates
> >that I was at risk of a seizure, to let them know
[quoted text clipped - 8 lines]
> I show the same problems), I have lost a lot of friends, my classmates
> treat me like an alien, and my teachers treat me like a piece of glass.

 Hi.  Something new to learn about Living with Epilepsy.  You haven't "Lost
a Lot of Friends".   Those were not "Friends".    They were just people
hanging around with you.
   Friends would not have Left You because of a change in your Health or
your Circumstances.  You will find Other Friends.   And Those will be **Real
Ones this time.

   Stick around here for a while.  That's why we're here.
  Others will have opinions or ideas about what you can do if you want to
educate or 'retrieve' some of the 'Friends' who left when you weren't 100%
up to their standard.   Not everyone here reads the group each day, so Read
your message threads over next 3-5 days and there may be additional ideas
the others add as they read your post.
   G./
M - 01 May 2004 17:22 GMT
>  Hi.  Something new to learn about Living with Epilepsy.  You haven't "Lost
>a Lot of Friends".   Those were not "Friends".    They were just people
>hanging around with you.

A very good point.

>    Friends would not have Left You because of a change in your Health or
>your Circumstances.  You will find Other Friends.   And Those will be **Real
>Ones this time.
>    G./

And one which maybe we all need reminding occasionally.

Signature

Malcolm    

Dawn Compton - 02 May 2004 06:40 GMT
Gaross wrote:

>Something new to learn about Living with
>Epilepsy. You haven't "Lost a Lot of Friends".  
>Those were not "Friends".   They were just
>people hanging around with you.

I have learned this NOW, but at the time, I felt like I had lost a lot
of friends.  That is what I meant by what I said.

>Not everyone here reads the group each day,
>so Read your message threads over next 3-5 >days and there may be
additional ideas the
>others add as they read your post.

I do not check this newsgroup except for weekends mainly.  Occasionally
if I have a few minutes to spare, I post through the week.
g-mal - 05 May 2004 17:05 GMT
> Gaross wrote:
>
[quoted text clipped - 13 lines]
> I do not check this newsgroup except for weekends mainly.  Occasionally
> if I have a few minutes to spare, I post through the week.

I remember... when Iwas going to university,the teachers,and my fellow
students were treating me like the plague,but I didn't care what they
thought...they will never understand it...like WE do. just press on,
andknow that someones cares. can I count on you?
Dawn Compton - 08 May 2004 05:08 GMT
Ray wrote:

>I remember... when Iwas going to university,
>the teachers,and my fellow students were
>treating me like the plague,but I didn't care
>what they thought...they will never understand
>it...like WE do. just press on, andknow that
>someones cares.

The teachers have been really good.  My two really good friends have
been supportive.  A lot of the administration and most students are the
problems.

>can I count on you?

If that is a question directed towards me, then yeah.
g-mal - 08 May 2004 19:24 GMT
> Ray wrote:
>
[quoted text clipped - 12 lines]
>
> If that is a question directed towards me, then yeah.

then you count on me
Mary Fisher - 14 May 2004 22:38 GMT
> The teachers have been really good.  My two really good friends have
> been supportive.  A lot of the administration and most students are the
> problems.

So things have got better for you, Dawn?

Mary
Dawn Compton - 15 May 2004 06:06 GMT
Mary wrote:

>So things have got better for you, Dawn?

No not really.  For more info, read the thread I started called "My
Latest News".
g-mal - 27 Apr 2004 21:19 GMT
> Epilepsy is well known but is not often well understood. Around
> 350,000 people may have epilepsy in Canada; Epilepsy is a recurring
[quoted text clipped - 64 lines]
> for a little while.
> And to think today that we call ourselves an "ADVANCED NATION".

Too long?
 
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