Epilepsy: The Untold Story
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- Reviews
- Citation
- Cataloging
- Transcript
People often think of epileptic seizures as characterized by loss of consciousness and convulsions. These grand mal seizures actually occur in only 39-50% of people with epilepsy. Equally common, but much less well understood, are complex partial seizures, which can occur in a variety of ways, from altering consciousness so that the person may appear confused or dazed, to triggering hallucinations and complex or repetitive behaviors. Because of lack of understanding, people with such symptoms are frequently misdiagnosed as having psychiatric or emotional disorders.
Epilepsy: The Untold Stories features siz people who have Temporal Lobe Epilepsy, and who relate their personal stories of how their susceptibility to complex partial seizures has affected their relationships, employment, recreation, and self-esteem. They also suggest ways to cope with the condition. Interviews with healthcare professionals provide a clinical overview of epilepsy and of the medical means available for diagnosis and treatment.
This is an invaluable introduction to the subject for healthcare students and professionals, as well as for newly diagnosed patients and their families. It will also be a helpful tool for community outreach and for awareness training for caregivers and the general public.
'Concise yet very informative, because of the examination of the topic from physical and psychological perspectives, as well as practical ideas from both patients and service providers.' -NARPPS Journal
'Four Stars, Recommended.' -Video Rating Guide
Citation
Main credits
Joseph, Paul J. (film director)
Brown, Mark R. (film director)
Guth, Jamie (screenwriter)
Guth, Jamie (film producer)
Guth, Jamie (narrator)
Other credits
Editor, Tom Kidder; music, John Appleton.
Distributor subjects
Chronic Illness / Heart Disease; Epilepsy and Narcolepsy; Fanlight Collection; Healthcare; Mental Illness, Brain Disorders; Neuroscience and NeurologyKeywords
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[sil.] Dear, dear! How queer everything is
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to-day! And yesterday things went on just
as usual. I wonder if I\'ve been changed
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in the night?
00:00:15.000 --> 00:00:23.000
[sil.] Epilepsy? Epilepsy. I don\'t know
anything. All I know is that they have seizures
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and things like that. Seizures, uh,
need medications to not go into
00:00:35.000 --> 00:00:39.999
the seizures-type thing. Is it a, um,
something in the brain, like a, I don\'t know?
00:00:40.000 --> 00:00:44.999
If they\'re standing up, they\'ll
fall down, and they\'ll lose their
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control of their muscles. Well, it\'s pretty scary because
you don\'t know what\'s gonna happen to \'em when they\'re
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there having a fit. All I
know is that it\'s a disease.
00:00:55.000 --> 00:01:03.000
[music] I suddenly grew very
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small. I felt as if I was about
an inch or two in height,
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and everything else looked really big.
And I was trapped inside my dark
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room. And I was on the floor, so I
decided I\'d just run right under
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the crack in the door, and I would go out in
the hall and call them. And then it occurred
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to me if I call them, they\'ll step on me.
They won\'t see me. I\'ve had
00:01:30.000 --> 00:01:34.999
religious experiences wake me and
come in through the windows, as if
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a, a massive stream of light is
coming in from a deity or a god.
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And I don\'t know why I\'m taking pills
to prevent it. They are fascinating
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experiences. Or I\'ve had
experiences where the Windows
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are, are being opened in
the middle of the night,
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and I will have a, a, two deities come in
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and talk to me about what is real.
I grew up in Belmont
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and live very close to McLean Hospital, which
is a very renown-, you know, well-known
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psychiatric hospital. And I\'d be in the backseat
of the car with my family and saying to myself,
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and probably I think at one point to my mother,
\"I\'m going to end up there soon because I think
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I\'m losing my mind.\" We had one
patient who, um, his seizure
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was the sense that he was being
chased by Humpty Dumpty. And, uh,
00:02:30.000 --> 00:02:34.999
for years and years, he was taken from
one psychiatrist to another until
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he was discovered to have epilepsy
in his, I believe it was his late
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20\'s or early 30\'s. In our
parents\' time, yours and mine,
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which wasn\'t that long ago, people
with complex partial seizures
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were put in state institutions.
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We were considered crazy.
I know cases today
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where, uh,
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a friend of mine, she was misdiagnosed
for years and she was in, a, a mental
00:03:10.000 --> 00:03:14.999
institution. And they finally diagnosed
it and figured it out that she had TLE.
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If you think of the brain being able to,
you know, your imagination, you can
00:03:20.000 --> 00:03:24.999
think and see and hear and feel anything.
And often, with temporal lobe
00:03:25.000 --> 00:03:29.999
epilepsy, any of those thoughts
that you have can be recreated
00:03:30.000 --> 00:03:34.999
during a temporal lobe seizure.
And, um, you know, it can be
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anything. It could be smelling things. It could
be sensing, you know, things, seeing things
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that aren\'t there. Sometimes,
I\'ll smell, um, rice, in the
00:03:45.000 --> 00:03:49.999
middle of the night. And uh, it\'s unmistakable.
There is no other way to say it.
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It is rice cooking. So I\'ll get up and
go downstairs at three in the morning,
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and there was no rice. The place was deserted.
Everyone was in bed. Since within the
00:04:00.000 --> 00:04:04.999
brain, uh, the temporal
lobe is where the emotions
00:04:05.000 --> 00:04:09.999
are regulated, um, when you have abnormal
electrical activity in the temporal
00:04:10.000 --> 00:04:14.999
lobe, one\'s emotional life
becomes a roller coaster.
00:04:15.000 --> 00:04:19.999
And clearly, um, depressions can
come from out of the blue. Patients
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who are otherwise perceiving reality
perfectly normally can become quite
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paranoid, can become fearful. It was so strange
that I couldn\'t understand why it was getting
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so forceful, those emotions. So
I went to see a psychiatrist,
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and I just got worse and worse and worse.
And he tried everything under the
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sun. And all the, uh, things
that he tried, the medicines
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that he, he tried made sense
if you didn\'t think this
00:04:50.000 --> 00:04:54.999
was epilepsy. It can be mistaken for an
emo-, emotional and mental disorder.
00:04:55.000 --> 00:04:59.999
Uh, it could be mistaken as a, uh, a
heart disorder. Sometimes a seizure
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may cause a feeling of
a, a racing heart. Uh,
00:05:05.000 --> 00:05:09.999
it may be thought to be a panic or anxiety
disorder. A lot of individuals suffer
00:05:10.000 --> 00:05:14.999
for a very long time because they are
misdiagnosed and passed from one
00:05:15.000 --> 00:05:19.999
specialist to another. Um, and then
f-, finally, they may cross the
00:05:20.000 --> 00:05:24.999
path of a specialist who says, \"This sounds
odd. Let\'s send the patient to this center
00:05:25.000 --> 00:05:29.999
and rule out epilepsy. In the majority
of people that, uh, I see in my
00:05:30.000 --> 00:05:34.999
practice, the cause is
not obvious from x-ray
00:05:35.000 --> 00:05:39.999
studies or from, uh, brain wave tests.
Typical causes for partial
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seizures are head injuries, particularly
serious head injuries that result in a
00:05:45.000 --> 00:05:49.999
concussion, uh, small growths
that may develop in the brain,
00:05:50.000 --> 00:05:54.999
or in people, uh, typically
over the age of, uh, 50 or 60,
00:05:55.000 --> 00:05:59.999
uh, strokes. When I was
about, uh, 14 years old,
00:06:00.000 --> 00:06:04.999
I was around the corner,
uh, up in the woods
00:06:05.000 --> 00:06:09.999
with a good friend of mine and his little
brother. We were fishing at a pond.
00:06:10.000 --> 00:06:14.999
And his younger brother was down the
other end of the pond tossing rocks in
00:06:15.000 --> 00:06:19.999
to scare the fish down to our end.
And to make a long story short, he
00:06:20.000 --> 00:06:24.999
missed once and hit me on the side of the
head. I proceeded to bleed and almost passed
00:06:25.000 --> 00:06:29.999
out. It seemed to be that that was
the end of it, at the time. At about
00:06:30.000 --> 00:06:34.999
a year later, I started having
what I thought were nightmares.
00:06:35.000 --> 00:06:39.999
I was waking up at night and screaming
and possibly even shaking at
00:06:40.000 --> 00:06:44.999
the time. So I thought they
were just bad dreams. I went to
00:06:45.000 --> 00:06:49.999
the doctor, and the doctor said,
\"You have to go have one of
00:06:50.000 --> 00:06:54.999
those EEG tests.\" An EEG is
a test that, uh, measures
00:06:55.000 --> 00:06:59.999
the electrical activity of the brain. Uh,
it\'s a study that is done by placing
00:07:00.000 --> 00:07:04.999
electrodes in a very standardized way over
the scalp and then recording, uh, the
00:07:05.000 --> 00:07:09.999
potential, electrical potential differences between
those electrodes, and doing that on a graphic
00:07:10.000 --> 00:07:14.999
form so that it\'s a dynamic study
done over time. The brain is, uh,
00:07:15.000 --> 00:07:19.999
can be thought of as composed of, of thousands
of little batteries all interconnected
00:07:20.000 --> 00:07:24.999
to one another. And, uh,
each group of batteries is
00:07:25.000 --> 00:07:29.999
responsible for some specific function or
operation of the brain, whether it\'s seeing
00:07:30.000 --> 00:07:34.999
or speaking or moving. And if a short
circuit develops in a particular group of
00:07:35.000 --> 00:07:39.999
batteries, then the function of that
group of batteries will be temporarily
00:07:40.000 --> 00:07:44.999
lost. If the, uh, nerve
cells or batteries have
00:07:45.000 --> 00:07:49.999
to do with feelings or emotions, then the
individual may feel an unusual emotion, such as
00:07:50.000 --> 00:07:54.999
panic or fear or even happiness,
impending doom, then that would be
00:07:55.000 --> 00:07:59.999
the seizure. If the experience of
the person during the seizure,
00:08:00.000 --> 00:08:04.999
uh, renders them unconscious,
that is, a blackout,
00:08:05.000 --> 00:08:09.999
it\'s referred to as a complex partial
seizure. Now that usually means
00:08:10.000 --> 00:08:14.999
that memory, uh, is affected,
that the person is unable to form
00:08:15.000 --> 00:08:19.999
new memories. And much like, uh, speaking
into a tape recorder and forgetting
00:08:20.000 --> 00:08:24.999
to push the record button, it\'s as
if nothing happened, uh, while the
00:08:25.000 --> 00:08:29.999
person was speaking or while the person was living
for that period of time. They don\'t remember
00:08:30.000 --> 00:08:34.999
it. It\'s a great deal like you
leave your television show
00:08:35.000 --> 00:08:39.999
when a commercial comes on, and you come back
and you realize you\'ve missed a lot. And
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I just notice that in life, I wondered if
people were getting a lot more out of it than
00:08:45.000 --> 00:08:49.999
I was. I was just getting little hints
because I thought, well, gee, I missed a lot
00:08:50.000 --> 00:08:54.999
of this class. I don\'t know where it went. I don\'t
have notes for half of my class or something.
00:08:55.000 --> 00:08:59.999
I realized I was missing blocks of time. You
know, I was having seizures during lectures,
00:09:00.000 --> 00:09:04.999
and I\'d be writing things and, you know, I\'d miss
probably half of a person\'s lecture. But, um, you know,
00:09:05.000 --> 00:09:09.999
I was, I managed to do OK. Then I went to
college, and it was in college that things
00:09:10.000 --> 00:09:14.999
really got worse for me. Um, I would
do things. I would be going across
00:09:15.000 --> 00:09:19.999
a very busy street,. Now if you want to think of
downtown, a street downtown Boston. And I\'d go from
00:09:20.000 --> 00:09:24.999
point A to point B having crossed this Tremont
Street or whatever and not know how I got
00:09:25.000 --> 00:09:29.999
there. I went home. I was eating a
yogurt, and I had a spoon, and I went
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home. And I didn\'t make it that far.
I then seized. And
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I guess I dropped my yogurt and spoon.
And I crossed 135, which is a main,
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main road. I managed to get across. I don\'t know
how. But I obviously made it across, luckily.
00:09:45.000 --> 00:09:49.999
I just don\'t know if cars stopped
for me and saw me crossing or not.
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I feel a seizure coming and I usually can say something.
I usually can say, \"I\'m going out,\" you know, or,
00:09:55.000 --> 00:09:59.999
or, \"I\'m going to seizure.\" And I just yell
it out. Whoever hears it hears it, you know,
00:10:00.000 --> 00:10:04.999
if I\'m at work or if I\'m at home, you know.
00:10:05.000 --> 00:10:09.999
And, uh, they tell me, uh,
because after that lil\' yellow,
00:10:10.000 --> 00:10:14.999
that little feeling, that high feeling
that I get, I don\'t remember a
00:10:15.000 --> 00:10:19.999
thing for 20 minutes. For the next
20 minutes, I do not know what I do.
00:10:20.000 --> 00:10:24.999
It used to be 45. You might
get, uh, very, very complex
00:10:25.000 --> 00:10:29.999
behaviors that look to the outsider
as though you\'re perfectly normal
00:10:30.000 --> 00:10:34.999
and just like the, the person next to you
who\'s just going on and doing their usual
00:10:35.000 --> 00:10:39.999
things. But the difference is that you\'re,
you may be completely unaware. And this
00:10:40.000 --> 00:10:44.999
sequence of movements is uninterruptible. It\'s
not a planned sequence. It\'s just automatic
00:10:45.000 --> 00:10:49.999
behaviors that unfold. I like to go
through my purse. I\'ll go through
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my purse and see what\'s in my purse, take things
out, put things back in. I\'ll go through every,
00:10:55.000 --> 00:10:59.999
um, cabinet in the kitchen, close the doors,
open them up, close the doors, open them up.
00:11:00.000 --> 00:11:04.999
A few times, I have torn out every
00:11:05.000 --> 00:11:09.999
wire from our, uh, stereo cable television
00:11:10.000 --> 00:11:14.999
system. On one big occasion at a
convention that we had once, I
00:11:15.000 --> 00:11:19.999
decided to take off all my clothing.
That one really got me.
00:11:20.000 --> 00:11:24.999
[sil.] You don\'t know what you\'re gonna do.
00:11:25.000 --> 00:11:29.999
[sil.] That\'s what gets you with TLA.
00:11:30.000 --> 00:11:34.999
That\'s what people say to me.
You don\'t know what you\'re
00:11:35.000 --> 00:11:39.999
going to do, and it\'s scary as hell.
00:11:40.000 --> 00:11:44.999
[sil.] You can go out
onto Washington Street
00:11:45.000 --> 00:11:49.999
and take your clothes off
in the middle of Washington
00:11:50.000 --> 00:11:54.999
Street. You can go out on Washington
Street, go over to Filene\'s
00:11:55.000 --> 00:11:59.999
Basement, and start ripping off everything and
walk out the door, get arrested. You don\'t
00:12:00.000 --> 00:12:04.999
know. Rita had a seizure, and
it was in the middle of a mall
00:12:05.000 --> 00:12:09.999
area. And Rita stopped right
in the middle of the street
00:12:10.000 --> 00:12:14.999
she was walking. So meanwhile,
the cars are coming.
00:12:15.000 --> 00:12:19.999
Mother is directing the cars around Rita.
She\'s got Rita in one hand. She\'s directing
00:12:20.000 --> 00:12:24.999
the cars in the other hand. She\'s watching
traffic. She\'s watching Rita. And
00:12:25.000 --> 00:12:29.999
Rita started to take off her shirt now because
Rita is, oh, I\'m sorry, Rita is tired, and
00:12:30.000 --> 00:12:34.999
she\'s, she\'s unbuttoning, and she\'s getting
ready to go hit the sack. Mother is
00:12:35.000 --> 00:12:39.999
totally frustrated. She can\'t handle this.
It scared her to death because she\'s never
00:12:40.000 --> 00:12:44.999
seen, you know, just stop anywhere
in the middle of everything
00:12:45.000 --> 00:12:49.999
and go ahead and have your seizure time. To
describe a person with temporal lobe epilepsy,
00:12:50.000 --> 00:12:54.999
it\'s very, very difficult because, you
know, uh, everybody has their own
00:12:55.000 --> 00:12:59.999
personality as well as, you know, like,
depending on what part of the temporal lobe is
00:13:00.000 --> 00:13:04.999
affected. So it could take any number of turns,
you know. Just like there are many different
00:13:05.000 --> 00:13:09.999
shades of brown hair or blonde hair or red
hair, for that matter, there are many
00:13:10.000 --> 00:13:14.999
different shades of temporal lobe epilepsy.
If we feel that the individual,
00:13:15.000 --> 00:13:19.999
uh, is likely to have had a seizure, then
we rely on certain, uh, diagnostic tests to
00:13:20.000 --> 00:13:24.999
determine whether there is an identifiable
cause underlying it. And, uh, to that end, we
00:13:25.000 --> 00:13:29.999
rely quite heavily on x-ray studies of
the brain. And as time has gone by,
00:13:30.000 --> 00:13:34.999
we\'ve gone from rather crude tests to
much more sophisticated tests, uh, uh,
00:13:35.000 --> 00:13:39.999
which, uh, the most modern of which
is the MRI scan. Certainly, MR was a
00:13:40.000 --> 00:13:44.999
major advance. MR technology came
about, uh, five, six years ago, and
00:13:45.000 --> 00:13:49.999
the advances in there are still happening.
But, um, it basically allowed us to
00:13:50.000 --> 00:13:54.999
look at parts of the nervous system and
image parts of the nervous system in
00:13:55.000 --> 00:13:59.999
ways that would confirm that something had
happened to the brain. And if a patient
00:14:00.000 --> 00:14:04.999
is having a seizure or about to have
a seizure, the functional imaging
00:14:05.000 --> 00:14:09.999
will look different, uh, in the area
that supports the seizure than it would
00:14:10.000 --> 00:14:14.999
if the patient were at rest and, and
feeling normal. One of the roles of the
00:14:15.000 --> 00:14:19.999
neuropsychologist in the examination
is to determine whether you
00:14:20.000 --> 00:14:24.999
can pinpoint the area or areas of the
brain that are affected by the epilepsy
00:14:25.000 --> 00:14:29.999
based on their pattern of performance on
a series of tests of different mental
00:14:30.000 --> 00:14:34.999
functions. We look at attentional
functions. We look at
00:14:35.000 --> 00:14:39.999
memory. We look at language
abilities because we\'re looking at
00:14:40.000 --> 00:14:44.999
the functioning of the left side of the brain.
We look at, uh, visuo-spatial abilities,
00:14:45.000 --> 00:14:49.999
which looks at the integrity of the right
side of the brain. And we look at reasoning
00:14:50.000 --> 00:14:54.999
and abstraction ability. And each
of these areas has some implication
00:14:55.000 --> 00:14:59.999
for brain networks and how they\'re
functioning. Surgical treatment of,
00:15:00.000 --> 00:15:04.999
of seizures is considered to be an option
in the event that none of the available
00:15:05.000 --> 00:15:09.999
medications, uh, have
been effective for a, a
00:15:10.000 --> 00:15:14.999
particular individual. Whether
it was because of side effects
00:15:15.000 --> 00:15:19.999
that the individual couldn\'t tolerate or
because simply they did not stop that person\'s
00:15:20.000 --> 00:15:24.999
seizures. Things got to the point where I was doing
things that I didn\'t know I was doing and putting my life
00:15:25.000 --> 00:15:29.999
in my hands. You know, a neurologist had said to
me, \"I think you might be a good candidate for
00:15:30.000 --> 00:15:34.999
surgery.\" This was at the Lahey Clinic in,
um, Burlington. And at the time, I, I just
00:15:35.000 --> 00:15:39.999
looked at him like he slapped me across the face, like,
\"You\'ve got to be kidding.\" It was in September.
00:15:40.000 --> 00:15:44.999
I\'ll never forget that. And, uh, you
know, I just walked away saying, \"Brain
00:15:45.000 --> 00:15:49.999
surgery?\" You know. Um, \"They\'re touching my
brain?\" My right arm, my right, you know.
00:15:50.000 --> 00:15:54.999
My left arm, fine, but not my brain,
you know. I\'m not gonna be me.
00:15:55.000 --> 00:15:59.999
I think a lot of people fear
surgery, uh, for epilepsy
00:16:00.000 --> 00:16:04.999
for several reasons. One is there
is a lay population understanding
00:16:05.000 --> 00:16:09.999
of, uh, of surgery on the brain.
And I think patients oftentimes
00:16:10.000 --> 00:16:14.999
mistake lobotomies and that type of
psychosurgery for the type of ep-, type of
00:16:15.000 --> 00:16:19.999
surgery that\'s done for someone who
has epilepsy. Uh, epilepsy surgery
00:16:20.000 --> 00:16:24.999
[is very different than that. And epilepsy surgery,
what we\'re trying to do is remove damaged nervous
00:16:25.000 --> 00:16:29.999
system, portions of the nervous system
that are generating seizure discharges.
00:16:30.000 --> 00:16:34.999
I\'ve considered it and followed
a couple of people on it,
00:16:35.000 --> 00:16:39.999
my concern being that if you
do it, you can\'t undo it.
00:16:40.000 --> 00:16:44.999
If you take a pill, hopefully over two days
or three days, it\'s passed out of your
00:16:45.000 --> 00:16:49.999
system anyways. And then for you,
whoever you are, yourself can come back
00:16:50.000 --> 00:16:54.999
to who you are. I\'d rather take a pill
because I don\'t wanna have somebody
00:16:55.000 --> 00:16:59.999
probe around in my brain. I don\'t wanna give them
that much power over me. It\'s this part of me
00:17:00.000 --> 00:17:04.999
that wants to be, OK. What if
they make a mistake? What if they
00:17:05.000 --> 00:17:09.999
do something wrong? Well, it\'s been 16 years
since I\'ve had my surgery, and, knock on wood,
00:17:10.000 --> 00:17:14.999
wherever it is. Uh, and I do have to do
that because you still think that you may
00:17:15.000 --> 00:17:19.999
have a seizure. That\'s still with a person
that\'s, you know, been seizure-free. But,
00:17:20.000 --> 00:17:24.999
um, I haven\'t had a seizure since my operation.
They had found out that my seizures were coming
00:17:25.000 --> 00:17:29.999
too close to my short-term memory, and that
it would be too much of a risk to operate.
00:17:30.000 --> 00:17:34.999
So I was a little frustrated then. Most
of the people in the meeting are under
00:17:35.000 --> 00:17:39.999
control, whereas I\'m not yet. I\'ve told them
before that I tried to be a candidate for
00:17:40.000 --> 00:17:44.999
surgery and that it\'s just, it\'s
just not working right now for me.
00:17:45.000 --> 00:17:49.999
But, um, I wish it would because
I\'m getting really frustrated
00:17:50.000 --> 00:17:54.999
with this. Um, oftentimes, young men
00:17:55.000 --> 00:17:59.999
with seizure disorders will describe that, you
know, how can you go out on a date if you
00:18:00.000 --> 00:18:04.999
can\'t drive? Um, do you explain
to a woman on the first date
00:18:05.000 --> 00:18:09.999
that you have epilepsy which is why you can\'t
drive and that\'s why you\'re kind of taking
00:18:10.000 --> 00:18:14.999
public transportation that evening? What if
it\'s not the way you wanna introduce yourself
00:18:15.000 --> 00:18:19.999
to a new person who you\'re hoping to, uh,
develop a relationship with? It\'s very
00:18:20.000 --> 00:18:24.999
difficult. They would ask me, \"Do you drive?\" and
I would say no. And sometimes, that would turn
00:18:25.000 --> 00:18:29.999
them around because if I go, \"Geez, I don\'t wanna go out
with you. I would always have to come chauffeur you
00:18:30.000 --> 00:18:34.999
and pick you up.\" When we first moved
to the location that we are living now,
00:18:35.000 --> 00:18:39.999
um, I went around, you know, the
neighborhood and introduced myself. And
00:18:40.000 --> 00:18:44.999
that\'s why I know I\'m known
as friendly me, I guess.
00:18:45.000 --> 00:18:49.999
And I made friends with a woman around the
00:18:50.000 --> 00:18:54.999
corner, and uh, oh, I\'d go in and we\'d
chit-chat and we\'d visit and, uh,
00:18:55.000 --> 00:18:59.999
we go for little walks, and we became,
you know. We were starting up a
00:19:00.000 --> 00:19:04.999
nice little friendship. And, uh,
then one day, I had a seizure.
00:19:05.000 --> 00:19:09.999
I had told her about the seizures.
And, uh, within a few
00:19:10.000 --> 00:19:14.999
minutes, we started talking, and
I was feeling fine. And I was,
00:19:15.000 --> 00:19:19.999
we were talking about the seizure, and then
she told me that she couldn\'t handle them
00:19:20.000 --> 00:19:24.999
and that she thought we better
stop seeing each other.
00:19:25.000 --> 00:19:29.999
They\'re scared first and confused. But then
once I go in and explain it to them what
00:19:30.000 --> 00:19:34.999
happens when I seize, they learn to
accept that they\'ll be all right.
00:19:35.000 --> 00:19:39.999
And I said, \"Look. If I do this and that, if I
just blank, don\'t worry about it. I don\'t have
00:19:40.000 --> 00:19:44.999
the grand mal. I don\'t fall. There\'s
nothing to be afraid of.\" Um,
00:19:45.000 --> 00:19:49.999
it\'s helped some, but sometimes, it
just doesn\'t help any. Sometimes
00:19:50.000 --> 00:19:54.999
still, they just don\'t wanna have anything
to do with me. So it\'s their loss.
00:19:55.000 --> 00:19:59.999
And they get nervous, I mean,
because you could do all
00:20:00.000 --> 00:20:04.999
kinds of things in the middle of that afternoon.
You could end up, literally, the show of the day,
00:20:05.000 --> 00:20:09.999
all right? And I\'m not laughing at this.
I\'m just saying that all the attention was
00:20:10.000 --> 00:20:14.999
on the bride. However, this lady over in the audience
just had a seizure and has been rolling around for
00:20:15.000 --> 00:20:19.999
half an hour. OK? They\'re worried.
They don\'t know what to do with it.
00:20:20.000 --> 00:20:24.999
They don\'t know how to treat it. \"Should we invite her
the next time? Should we be put through the scare
00:20:25.000 --> 00:20:29.999
again?\" You know, that kind of thing. Unless they\'ve known
you for a long time, uh, you could get that kind of a
00:20:30.000 --> 00:20:34.999
thing. You know that something
happens, and you know that it\'s wrong.
00:20:35.000 --> 00:20:39.999
It\'s nasty. You don\'t talk about it.
And it\'s still there.
00:20:40.000 --> 00:20:44.999
It\'s still out there. That is something we are
trying to break. People are still putting
00:20:45.000 --> 00:20:49.999
spoons in the mouths of people having
the grand mal seizure, the tonic-clonic
00:20:50.000 --> 00:20:54.999
seizure. They\'re still putting things in the mouth.
People still think the only two seizures that
00:20:55.000 --> 00:20:59.999
exist are the grand mal seizure and the
petit mal seizure. They don\'t know
00:21:00.000 --> 00:21:04.999
that there is anything else, and there\'s many, many,
many types of seizure activity. It really does
00:21:05.000 --> 00:21:09.999
help if there is anybody
who understands what TLE
00:21:10.000 --> 00:21:14.999
is. If there is people that just
like you for your ebullient happy
00:21:15.000 --> 00:21:19.999
self, those people are like empty
00:21:20.000 --> 00:21:24.999
eggshells. There is nothing there.
They can\'t support you.
00:21:25.000 --> 00:21:29.999
They can\'t help you. If anything ever happens,
they\'ll crack, and then they\'re gone.
00:21:30.000 --> 00:21:34.999
The employment program that we have here
helps the, the people with epilepsy
00:21:35.000 --> 00:21:39.999
find positions. We do in-service
programs where we go to
00:21:40.000 --> 00:21:44.999
the community. Um, uh,
we go to corporations
00:21:45.000 --> 00:21:49.999
and we talk to the employment people about what, what
it\'s all about, what epilepsy is all about because
00:21:50.000 --> 00:21:54.999
they have, uh, workers that have it.
They found that my biggest problem
00:21:55.000 --> 00:21:59.999
is going through that initial interview
or interviews when it does come
00:22:00.000 --> 00:22:04.999
up about a medical disability
and it gets mentioned.
00:22:05.000 --> 00:22:09.999
You know, you don\'t have to lie about
it all the time. Just say truthfully,
00:22:10.000 --> 00:22:14.999
\"Yes, I have a disability. I\'m taking
medication,\" and then you won\'t go beyond
00:22:15.000 --> 00:22:19.999
another interview. Technically, they
shouldn\'t do it. It\'s against the law, I
00:22:20.000 --> 00:22:24.999
know. But they\'ll come up with another reason.
Either the position is closed or they\'re,
00:22:25.000 --> 00:22:29.999
they didn\'t make enough money to put together
the nine positions that they said they were
00:22:30.000 --> 00:22:34.999
gonna have, and we didn\'t get a position.
I have my own
00:22:35.000 --> 00:22:39.999
business manufacturing rainwear products
that I have designed and sporting goods.
00:22:40.000 --> 00:22:44.999
I was at, in the beginning, dealing
with a venture capital company
00:22:45.000 --> 00:22:49.999
because the business was expanding. And
they were very excited about the product,
00:22:50.000 --> 00:22:54.999
and we\'ve been working together for almost
a month. I told him that I had epilepsy.
00:22:55.000 --> 00:22:59.999
And I told him the type of epilepsy, and I did all the
explaining, how it wasn\'t anything to worry about,
00:23:00.000 --> 00:23:04.999
and the type of epilepsy that I have,
but I wanted him to be aware and,
00:23:05.000 --> 00:23:09.999
uh, just in case I had a problem when
we were together. And he thanked me
00:23:10.000 --> 00:23:14.999
for telling him. He appreciated it.
He was very nice. A week
00:23:15.000 --> 00:23:19.999
later, I get a telephone call from the
comp-, from the venture capital company.
00:23:20.000 --> 00:23:24.999
\"We\'re sorry. We\'ve decided we
can\'t go with you. Good luck.\"
00:23:25.000 --> 00:23:29.999
It\'s like going to a place where an apartment is for
rent, and suddenly, you walk up to the door, \"Rita
00:23:30.000 --> 00:23:34.999
McLaughlin,\" and they say, \"I\'m sorry. The
apartment was rented yesterday.\" You know
00:23:35.000 --> 00:23:39.999
what was their reason? There are some people
in the community who you\'re never gonna
00:23:40.000 --> 00:23:44.999
educate, people who are scared, people who hold prejudices.
But I think that there are enough people out there
00:23:45.000 --> 00:23:49.999
who are willing to, um,
learn about epilepsy,
00:23:50.000 --> 00:23:54.999
who are willing to try to modify jobs so that
if they think that they have an individual
00:23:55.000 --> 00:23:59.999
who is a capable individual and who can be a
valued employee, um, they may be willing to
00:24:00.000 --> 00:24:04.999
try to tailor a job so that
they can, um, hire that
00:24:05.000 --> 00:24:09.999
person. Working at Babson I do like. I\'ve been there
for five years now, and I\'ve been all over the
00:24:10.000 --> 00:24:14.999
area in that club. I first started
working in the, um, lounge because
00:24:15.000 --> 00:24:19.999
I liked to be around people, and I
liked to cook and serve people. So I
00:24:20.000 --> 00:24:24.999
was there first. And then, um, my seizures
began to pick up a little bit. So
00:24:25.000 --> 00:24:29.999
they had a meeting. And they cut
my, um, hours back and had me
00:24:30.000 --> 00:24:34.999
leave the lounge because they were too worried
that I would hurt myself by cutting myself or
00:24:35.000 --> 00:24:39.999
spilling hot food. And, um,
they, luckily, they found
00:24:40.000 --> 00:24:44.999
some other position for me there. They just didn\'t
totally let me go, which was very nice of them.
00:24:45.000 --> 00:24:49.999
When you have an illness hit
you, you don\'t have any time
00:24:50.000 --> 00:24:54.999
for training. You\'ve got to break right
in, find out what\'s going on, or
00:24:55.000 --> 00:24:59.999
sit there in a daze. Rita approached this
thing with all the legitimacy that I think
00:25:00.000 --> 00:25:04.999
it could ever be approached with. Uh,
she found out there was an Epilepsy
00:25:05.000 --> 00:25:09.999
Association. She went in. She found out there
were support groups. She became a part of those
00:25:10.000 --> 00:25:14.999
support groups. And I honestly said that
this is something that I have been given to
00:25:15.000 --> 00:25:19.999
deal with. All right. I can do it.
I can deal with it.
00:25:20.000 --> 00:25:24.999
But I need a little help, and
I\'ve gotten it. First, I was
00:25:25.000 --> 00:25:29.999
ups-, I was denying it. Then I was
angry and \"This is unfair\" kind of
00:25:30.000 --> 00:25:34.999
thing. And then I, uh, I accepted.
00:25:35.000 --> 00:25:39.999
I still would, would much rather
be in the state of denial, but,
00:25:40.000 --> 00:25:44.999
you know, there\'s people that have worse
problems than I do. I think I\'m pretty
00:25:45.000 --> 00:25:49.999
lucky. They are not only illness.
They are not only individuals
00:25:50.000 --> 00:25:54.999
with cognitive deficits and
emotional problems. But many of
00:25:55.000 --> 00:25:59.999
these people indeed lead
lives that are productive.
00:26:00.000 --> 00:26:04.999
They are able to find jobs
that, in which they can
00:26:05.000 --> 00:26:09.999
work and be productive. Um,
they\'re oftentimes enormously
00:26:10.000 --> 00:26:14.999
talented people in terms of artistic talents.
So that I think that we need to look
00:26:15.000 --> 00:26:19.999
at these patients as people
and to see the whole profile.
00:26:20.000 --> 00:26:24.999
To a great extent, it is treatable.
It is nothing to be ashamed of.
00:26:25.000 --> 00:26:29.999
It is a condition that really, uh,
is something that you live with
00:26:30.000 --> 00:26:34.999
your whole life but that can be managed
with proper medications or with surgery.
00:26:35.000 --> 00:26:39.999
And that, um, people with epilepsy are
just like everybody else, except they have
00:26:40.000 --> 00:26:44.999
epilepsy. And that once there
is a greater social acceptance
00:26:45.000 --> 00:26:49.999
of individuals with epilepsy, um, I think
it will make it easier for everybody.
00:26:50.000 --> 00:26:55.000
[music]