Living, Learning and Helping

WEBVTT
00:00:27.820 --> 00:00:30.059
Welcome to Between Two Sparks, a podcast sharing
00:00:30.059 --> 00:00:32.340
honest conversations about life with epilepsy
00:00:32.340 --> 00:00:34.759
brought to you by the Epilepsy Foundation of
00:00:34.759 --> 00:00:37.780
Kentuckiana. Each episode brings together real
00:00:37.780 --> 00:00:40.240
experiences and expert insight to explore what
00:00:40.240 --> 00:00:43.159
it truly means to live with epilepsy. Whether
00:00:43.159 --> 00:00:45.479
you're personally affected, supporting someone
00:00:45.479 --> 00:00:48.280
who is, or just here to understand more, you
00:00:48.280 --> 00:00:52.229
are in the right place. Welcome friends. In today's
00:00:52.229 --> 00:00:54.909
episode, we talk to Sonia Ferguson, who is our
00:00:54.909 --> 00:00:57.170
Director of Client Services at the Epilepsy Foundation
00:00:57.170 --> 00:01:00.670
of Kentuckiana. Sonia has a very unique perspective.
00:01:01.109 --> 00:01:03.590
As many people working in the epilepsy space
00:01:03.590 --> 00:01:07.290
do, she not only is employed by the Epilepsy
00:01:07.290 --> 00:01:09.629
Foundation of Kentuckiana, but she also has a
00:01:09.629 --> 00:01:13.489
son living with epilepsy and had a very unique
00:01:13.489 --> 00:01:16.489
diagnosis. I can't wait for you to hear her story
00:01:16.489 --> 00:01:18.510
and all of the incredible things that she does
00:01:18.510 --> 00:01:22.709
at the foundation. Welcome Sonia to Between Two
00:01:22.709 --> 00:01:24.730
Sparks. Thank you so much for joining us today.
00:01:25.530 --> 00:01:28.230
Thank you for having me. I'm so glad you're here.
00:01:29.269 --> 00:01:33.109
So Sonia is our Director of Client Services and
00:01:33.109 --> 00:01:36.950
she is total rockstar and supports so many people
00:01:36.950 --> 00:01:41.109
throughout the month. But you kind of have a
00:01:41.109 --> 00:01:45.400
unique viewpoint here with epilepsy. So tell
00:01:45.400 --> 00:01:48.000
us a little bit about yourself and what you do
00:01:48.000 --> 00:01:50.319
here at the foundation, but also kind of what
00:01:50.319 --> 00:01:52.819
your personal connection is with epilepsy. Sure.
00:01:53.219 --> 00:01:56.780
So again, thanks for having me here. This is
00:01:56.780 --> 00:01:58.939
very, very nice. I really love what you have
00:01:58.939 --> 00:02:01.959
done. But yes, I'm Sonya. I'm the Director of
00:02:01.959 --> 00:02:05.370
Client Services here. Also a social worker, so
00:02:05.370 --> 00:02:08.590
kind of that umbrella of client services and
00:02:08.590 --> 00:02:11.449
just making sure people are supported and taken
00:02:11.449 --> 00:02:15.409
care of. Been here a little bit five years now.
00:02:15.810 --> 00:02:21.949
Time flies. Yay! So five years. My personal connection
00:02:21.949 --> 00:02:25.949
with the foundation is before working here during
00:02:25.949 --> 00:02:30.229
COVID, our son was diagnosed with epilepsy. So
00:02:30.229 --> 00:02:34.110
he is now 11. He was diagnosed at five. So before
00:02:34.110 --> 00:02:36.590
even working here and knowing that I was gonna
00:02:36.590 --> 00:02:40.270
eventually land here, we knew nothing about seizures
00:02:40.270 --> 00:02:44.330
and epilepsy to a certain extent. We were dealing
00:02:44.330 --> 00:02:46.710
with COVID and just maneuvering through life
00:02:46.710 --> 00:02:49.789
and trying to figure out things. So I always
00:02:49.789 --> 00:02:51.889
say at work when I'm speaking with my families
00:02:51.889 --> 00:02:54.629
and people that are affected by epilepsy that
00:02:54.629 --> 00:02:57.930
it's not just work, but this is also personal
00:02:57.930 --> 00:03:02.080
to me as well. That's kind of how the story had
00:03:02.080 --> 00:03:06.199
started with us here. Yeah. So you kind of, you
00:03:06.199 --> 00:03:10.000
kind of got thrown to the wolves and a very unique
00:03:10.000 --> 00:03:13.280
timeframe. And, you know, at this point, I think
00:03:13.280 --> 00:03:16.099
everybody refers to things as before COVID, during
00:03:16.099 --> 00:03:21.159
COVID and after. And so during COVID times he
00:03:21.159 --> 00:03:24.439
was diagnosed. You didn't really know anything
00:03:24.439 --> 00:03:27.639
about epilepsy. So what, what was that feeling?
00:03:27.789 --> 00:03:31.430
like because I know it's it's kind of a whirlwind
00:03:31.430 --> 00:03:34.770
when anybody gets diagnosed but during that time
00:03:34.770 --> 00:03:38.360
frame I can't imagine. Yeah it seems like it
00:03:38.360 --> 00:03:42.379
was so long ago yet it was not kind of in a sense.
00:03:43.620 --> 00:03:46.280
Obviously COVID was very challenging for a number
00:03:46.280 --> 00:03:50.439
of reasons so the feeling was very isolated.
00:03:50.879 --> 00:03:53.620
And there was so much fear around everything
00:03:53.620 --> 00:03:56.740
before the diagnosis. I mean, it was just a fear
00:03:56.740 --> 00:03:59.979
of leaving your house, a fear of doing anything
00:03:59.979 --> 00:04:02.840
wrong, not having family and friends around like
00:04:02.840 --> 00:04:06.800
usual. So to add a diagnosis to it, it was very
00:04:06.800 --> 00:04:10.699
isolating. It was very nerve wracking. And we
00:04:10.699 --> 00:04:13.000
did what we could in the situation that we were
00:04:13.000 --> 00:04:16.199
dealt to make sure that. we figured out what
00:04:16.199 --> 00:04:18.819
was going on and how we were going to move forward,
00:04:19.000 --> 00:04:21.480
not only during a pandemic, but just in life
00:04:21.480 --> 00:04:26.509
in general. Right. So how did How did you know
00:04:26.509 --> 00:04:28.930
that something was going on? Because I know a
00:04:28.930 --> 00:04:31.269
lot of times, and you and I have talked about
00:04:31.269 --> 00:04:34.509
this before, that people go undiagnosed for years
00:04:34.509 --> 00:04:37.329
because people don't pick up on some of the subtle
00:04:37.329 --> 00:04:40.089
signs. Everybody thinks that if you're having
00:04:40.089 --> 00:04:42.230
a seizure that it looks like a tonic -clonic
00:04:42.230 --> 00:04:44.589
seizure, but that's not the case. So what did
00:04:44.589 --> 00:04:47.810
you notice in braiding? Sure, so great question.
00:04:48.389 --> 00:04:51.939
So at first, before... the actual pandemic hit,
00:04:52.759 --> 00:04:55.199
our son Brayden had been in a daycare that he
00:04:55.199 --> 00:04:59.970
had been in for a while. pickups and drop -offs
00:04:59.970 --> 00:05:01.829
when we would pick him up sometimes I would get
00:05:01.829 --> 00:05:05.230
notes in his chart because we had a way the teachers
00:05:05.230 --> 00:05:07.569
had a way to communicate with parents and they
00:05:07.569 --> 00:05:10.870
would sometimes say hey after after lunch today
00:05:10.870 --> 00:05:13.310
we were outside playing and then all of a sudden
00:05:13.310 --> 00:05:14.949
Brayden had a headache and asked to come and
00:05:14.949 --> 00:05:18.449
lay down and when he laid down he was out like
00:05:18.449 --> 00:05:23.310
he went to sleep and he was out. So I would get
00:05:23.310 --> 00:05:27.209
things like that, or, you know, hey, Brayden
00:05:27.209 --> 00:05:30.209
went to sleep really quickly today, or he seemed
00:05:30.209 --> 00:05:33.230
a little quiet or more reserved today, which
00:05:33.230 --> 00:05:36.069
was unusual because Brayden is very high energy.
00:05:36.389 --> 00:05:40.389
So anytime they told me he was tired or had a
00:05:40.389 --> 00:05:42.449
headache, that was pretty normal, I thought,
00:05:42.490 --> 00:05:45.110
because he's such an active kid. So he's probably
00:05:45.110 --> 00:05:49.750
just tired. So that was that. So once COVID hit,
00:05:49.790 --> 00:05:52.149
And when we were stuck in the house all day,
00:05:52.290 --> 00:05:54.970
every day, looking at each other all day, being
00:05:54.970 --> 00:05:57.230
in that same routine every single day, I started
00:05:57.230 --> 00:05:59.730
to observe some of the things that the teachers
00:05:59.730 --> 00:06:03.009
were telling me. And I would say to my husband,
00:06:03.209 --> 00:06:05.149
that was odd. Did you see that? It would just
00:06:05.149 --> 00:06:07.670
be immediate. It was like a switch. Something
00:06:07.670 --> 00:06:11.050
turned on and off immediately. So the more COVID
00:06:11.050 --> 00:06:14.689
went on and the pandemic and things just continue
00:06:14.689 --> 00:06:18.069
to be. weary, we continue to see those type of
00:06:18.069 --> 00:06:22.750
things like the sudden mood changes or kind of
00:06:22.750 --> 00:06:25.110
like clicking out of something and coming back
00:06:25.110 --> 00:06:28.149
in. And so that was when we started to see something
00:06:28.149 --> 00:06:30.810
more of just, oh, he's hyper and just really
00:06:30.810 --> 00:06:34.389
tired. So that's how that journey started. And
00:06:34.389 --> 00:06:36.389
of course, during COVID, it wasn't as easy to
00:06:36.389 --> 00:06:40.310
just make an appointment immediately or go to
00:06:40.310 --> 00:06:43.430
the doctor. So I reached out to the providers
00:06:43.430 --> 00:06:46.449
at the time. We did all the procedures. We did
00:06:46.449 --> 00:06:49.069
an MRI. All the things at first, everything was
00:06:49.069 --> 00:06:54.810
normal. So again, we were maneuvering through
00:06:54.810 --> 00:06:58.310
COVID. We continue to do things that we always
00:06:58.310 --> 00:07:01.230
done, but there was always, that was odd or did
00:07:01.230 --> 00:07:03.709
you see that? But again, the doctor said everything
00:07:03.709 --> 00:07:07.069
was normal at that point. So. Yeah. And that's,
00:07:07.069 --> 00:07:10.209
and that's so common. Because so many people
00:07:10.209 --> 00:07:13.490
who develop epilepsy or diagnosed with epilepsy,
00:07:13.490 --> 00:07:16.910
oftentimes they don't catch anything on the EEG
00:07:16.910 --> 00:07:19.490
or there's not necessarily anything big that
00:07:19.490 --> 00:07:23.329
they notice on the MRI. And so it's parents being
00:07:23.329 --> 00:07:27.490
diligent and going, okay, something's off. Something's
00:07:27.490 --> 00:07:30.329
not right. This is my kid. And in that timeframe,
00:07:30.529 --> 00:07:33.439
you all were. step together yes all the time
00:07:33.439 --> 00:07:36.819
so i knew exactly what was going on yeah and
00:07:36.819 --> 00:07:39.160
something that popped in my mind just now that
00:07:39.160 --> 00:07:41.540
i remember like i can physically see us there
00:07:41.540 --> 00:07:43.860
right now so during the pandemic we had a death
00:07:43.860 --> 00:07:46.220
in the family and there was a funeral that we
00:07:46.220 --> 00:07:49.180
had to go to so we went to our we went to the
00:07:49.180 --> 00:07:51.980
funeral And Brayden had to use the restroom.
00:07:52.279 --> 00:07:54.759
And so, of course, we kind of slipped out and
00:07:54.759 --> 00:07:57.620
went to the restroom. And I remember us walking
00:07:57.620 --> 00:08:00.019
down the hallway, getting in the restroom, and
00:08:00.019 --> 00:08:01.959
we were there. And I'm like, Brayden, go to the
00:08:01.959 --> 00:08:03.600
bathroom. And he just stood there and looked
00:08:03.600 --> 00:08:08.220
at me. And I was like, OK, Brayden, we're here.
00:08:08.839 --> 00:08:11.139
Go ahead and use the restroom. He had no idea
00:08:11.139 --> 00:08:14.339
where he was at. He had no idea what he was doing.
00:08:14.379 --> 00:08:18.079
And so I had to physically help him. put him
00:08:18.079 --> 00:08:20.519
in the area to go to the restroom, and he just
00:08:20.519 --> 00:08:23.360
stood there. And of course, unfortunately, there
00:08:23.360 --> 00:08:25.740
was an accident that was had. But in that moment,
00:08:25.860 --> 00:08:29.120
then I knew, okay, something is going on. There's
00:08:29.120 --> 00:08:32.480
something else going on. So I was very consistent
00:08:32.480 --> 00:08:35.620
with his doctors at the time, just his regular
00:08:35.620 --> 00:08:38.500
PCs. I let them know, hey, this is going on.
00:08:38.840 --> 00:08:41.519
There has got to be something else that we need
00:08:41.519 --> 00:08:44.789
to do. And she said one of the most simplest
00:08:44.789 --> 00:08:47.250
things that makes me laugh now, but I'm like,
00:08:47.250 --> 00:08:49.970
oh my goodness Why didn't I not think about that
00:08:49.970 --> 00:08:52.730
during the time? She said just start recording
00:08:52.730 --> 00:08:57.429
things And I'm like That makes sense, right?
00:08:57.769 --> 00:08:59.470
but when you're going through a pandemic and
00:08:59.470 --> 00:09:02.289
when there's chaos going on just from pandemic
00:09:02.289 --> 00:09:05.850
and life and we have two children so it wasn't
00:09:05.850 --> 00:09:07.809
just Brayden at home there was a lot going on
00:09:07.809 --> 00:09:09.929
and you don't always have your phone readily
00:09:09.929 --> 00:09:13.590
available when things can come up. So to answer
00:09:13.590 --> 00:09:15.450
the previous question that is how we were able
00:09:15.450 --> 00:09:18.129
to finally get the appropriate diagnosis because
00:09:18.129 --> 00:09:20.970
I was starting to record things when they were
00:09:20.970 --> 00:09:24.649
happening and then I was able to send those pictures
00:09:24.649 --> 00:09:27.490
and videos to his doctor and she was like okay
00:09:27.490 --> 00:09:30.889
let's let's find figure out what's going on and
00:09:30.889 --> 00:09:34.289
get you connected to the right neurologist at
00:09:34.289 --> 00:09:37.049
that point. So yeah. And that's, that's huge.
00:09:37.049 --> 00:09:39.830
And I think that, you know, something that we
00:09:39.830 --> 00:09:43.149
promote here is really to make sure that one,
00:09:43.350 --> 00:09:46.029
be your own best advocate. Yes. And as a parent,
00:09:46.450 --> 00:09:48.429
be your kid's best advocate. You know, if you
00:09:48.429 --> 00:09:50.950
know something is going on and something's off,
00:09:52.279 --> 00:09:56.080
be diligent and follow up and record or journal,
00:09:56.320 --> 00:09:59.980
write down what time it was, what happened, how
00:09:59.980 --> 00:10:03.039
long it took them to come out. Like that. that
00:10:03.039 --> 00:10:05.320
evidential piece of the day -to -day life is
00:10:05.320 --> 00:10:07.960
really important and that, I mean, that significantly
00:10:07.960 --> 00:10:10.679
helped you get your diagnosis. Absolutely. Kudos
00:10:10.679 --> 00:10:13.879
to you, Mom. Yes, yes. Wasn't easy, but yes,
00:10:14.000 --> 00:10:15.879
all of those things is exactly what we needed
00:10:15.879 --> 00:10:18.899
to do to say, hey, listen, this is not normal.
00:10:19.059 --> 00:10:22.600
This is what's going on. Yeah. So, and it's been
00:10:22.600 --> 00:10:25.679
a little bit of a journey. Yes. Since diagnosis
00:10:25.679 --> 00:10:31.230
and got my medicine, feeling better. then recently
00:10:31.230 --> 00:10:34.210
and then yes then we were so excited we thought
00:10:34.210 --> 00:10:38.950
we had kicked it yes yes I'll let you share a
00:10:38.950 --> 00:10:42.509
little bit of that sure so we get the diagnosis
00:10:42.509 --> 00:10:47.659
in 2020 December the 29th to be exact right after
00:10:47.659 --> 00:10:51.440
Christmas. So we got the diagnosis on the 29th
00:10:51.440 --> 00:10:55.279
of December 2020. We immediately went into medication.
00:10:55.279 --> 00:10:58.100
We got on a really good pattern routine that
00:10:58.100 --> 00:11:00.000
worked for him. We were on the right dosage,
00:11:00.019 --> 00:11:03.080
the right milligrams. Life was starting to feel
00:11:03.080 --> 00:11:05.360
a little bit better. We at least knew what was
00:11:05.360 --> 00:11:09.620
going on. And so we went almost four and a half
00:11:09.620 --> 00:11:14.509
years seizure free. And it was wonderful because
00:11:15.340 --> 00:11:17.919
I almost forgot what it felt like to deal with
00:11:17.919 --> 00:11:21.799
the cluster seizures and being so worried all
00:11:21.799 --> 00:11:24.620
the time because we had finally hit an area of
00:11:24.620 --> 00:11:27.080
life where things were well as far as the seizures,
00:11:27.139 --> 00:11:30.840
having those controls. So my husband and the
00:11:30.840 --> 00:11:33.940
neurologist, we all came together and made a
00:11:33.940 --> 00:11:37.320
decision to start weaning him off because...
00:11:37.250 --> 00:11:42.230
We all know that if something is effective and
00:11:42.230 --> 00:11:44.970
working for you, then there also has to be a
00:11:44.970 --> 00:11:47.590
time period where we can start having those conversations
00:11:47.590 --> 00:11:50.990
around when is it going to be time to maybe ease
00:11:50.990 --> 00:11:54.169
off and wean off. And because he started school
00:11:54.169 --> 00:11:57.250
this year, he's in middle school now. So I just
00:11:57.250 --> 00:12:01.149
wanted to see how that would help him be successful
00:12:01.149 --> 00:12:03.429
in school and just get him off of those medications.
00:12:03.490 --> 00:12:06.070
So we started weaning him off. Things were going
00:12:06.070 --> 00:12:09.529
well. There was no side effects. There were no...
00:12:09.340 --> 00:12:12.480
Nothing alarming going on at the time and then
00:12:12.480 --> 00:12:15.360
I would say a few months later is when we started
00:12:15.360 --> 00:12:20.000
seeing again some some signs and Of course the
00:12:20.000 --> 00:12:23.139
professional that I am here now I am very aware
00:12:23.139 --> 00:12:25.879
of the early signs and what it looks like before
00:12:25.879 --> 00:12:29.019
and after And I can take accountability that
00:12:29.019 --> 00:12:31.399
was a little in denial because there were other
00:12:31.399 --> 00:12:34.559
things that Myself and his neurologist thought
00:12:34.559 --> 00:12:36.559
that these aren't seizures because I had talked
00:12:36.559 --> 00:12:39.299
to him about what we were seeing so they very
00:12:39.299 --> 00:12:42.500
well could be exhaustion or dehydration because
00:12:42.500 --> 00:12:45.279
of the symptoms that he was having was not always
00:12:45.279 --> 00:12:47.500
geared to seizures. It could be other things.
00:12:47.700 --> 00:12:50.120
So I had that little bit of hope that okay we're
00:12:50.120 --> 00:12:53.279
still seizure free but something else is going
00:12:53.279 --> 00:12:58.000
on. So we did the EEG one time and that was normal
00:12:58.000 --> 00:13:01.279
so I was like okay he's not having seizures like
00:13:01.279 --> 00:13:04.519
we are dealing with another side effect of medications
00:13:04.519 --> 00:13:08.539
but unfortunately we ended up doing another EEG
00:13:08.539 --> 00:13:10.440
that was longer. We did a three -day instead
00:13:10.440 --> 00:13:12.820
of a one -day, and that is when we were able
00:13:12.820 --> 00:13:16.120
to confirm that, unfortunately, the seizures
00:13:16.120 --> 00:13:19.940
had returned. So I was heartbroken, but I was
00:13:19.940 --> 00:13:22.799
relieved and had a sense of peace because, okay,
00:13:23.360 --> 00:13:27.419
we've been here before. Now I'm a lot more knowledgeable
00:13:27.419 --> 00:13:31.179
of everything that involves the aftermath, the
00:13:31.179 --> 00:13:34.970
early signs, and we were more equipped to deal
00:13:34.970 --> 00:13:38.090
with that at that time. And it's, I know that
00:13:38.090 --> 00:13:42.889
it's really hard as a parent in that perspective
00:13:42.889 --> 00:13:46.490
because kids can grow out of epilepsy. And so
00:13:46.490 --> 00:13:49.730
you thought like, yes, we've got this. We're
00:13:49.730 --> 00:13:52.509
going to be one of the lucky ones. And so I know,
00:13:52.830 --> 00:13:55.309
and as a friend and a coworker, like I know that
00:13:55.309 --> 00:13:57.409
that was really tough and we were all excited
00:13:57.409 --> 00:13:59.730
too because we thought, you know, he had kicked
00:13:59.730 --> 00:14:04.070
it and, you know, there are so many people who
00:14:04.070 --> 00:14:08.059
go, through that same thing, and then, and his
00:14:08.059 --> 00:14:10.039
seizures looked different than they did the first
00:14:10.039 --> 00:14:13.019
time around. And so that, that made it that much
00:14:13.019 --> 00:14:15.679
more difficult. So I know that was really hard
00:14:15.679 --> 00:14:19.539
for you guys. So I'm glad that, you know, they
00:14:19.539 --> 00:14:21.799
figured it out and I'm glad that, you know, he's
00:14:21.799 --> 00:14:24.340
doing better now. Maybe a little sass with his
00:14:24.340 --> 00:14:27.940
middle school attitude, but you know, that's
00:14:27.940 --> 00:14:30.639
part of it. That's part of it. You know, we're
00:14:30.639 --> 00:14:33.799
in middle school now, so we are. We're a big
00:14:33.799 --> 00:14:39.440
boy, you know, yes. So speaking of school, kind
00:14:39.440 --> 00:14:43.299
of transition a little bit. Seizure action plans.
00:14:43.620 --> 00:14:47.700
Yes. And I know we have talked about this and
00:14:47.700 --> 00:14:50.500
seizure action plans are not just important for
00:14:50.500 --> 00:14:52.539
kids in school. They're important for adults
00:14:52.539 --> 00:14:54.799
and everybody else. Everybody who lives with
00:14:54.799 --> 00:14:58.200
epilepsy should have one. Just a just a little
00:14:58.200 --> 00:15:04.120
side note. Yes. But in school. Why is having
00:15:04.120 --> 00:15:07.639
that seizure action plan so important and that
00:15:07.639 --> 00:15:10.059
communication? Because I know you do a lot of
00:15:10.059 --> 00:15:13.419
support in schools, helping parents and kiddos
00:15:13.419 --> 00:15:16.700
with epilepsy. Why is that so important for them
00:15:16.700 --> 00:15:19.779
and for the people working in the building? Yes,
00:15:19.980 --> 00:15:23.059
that is a layered question but a wonderful question.
00:15:23.299 --> 00:15:26.860
Seizure action plans are life -changing. They
00:15:26.860 --> 00:15:29.919
are so important to the well -being of the child.
00:15:30.110 --> 00:15:33.909
the adult, whoever is affected by epilepsy, it
00:15:33.909 --> 00:15:37.029
is kind of like a safety blanket. When I am sitting
00:15:37.029 --> 00:15:41.330
here speaking with you on this interview and
00:15:41.330 --> 00:15:44.190
just having the conversations when I am traveling,
00:15:44.409 --> 00:15:46.789
when Braden is in camp or wherever he may be
00:15:46.789 --> 00:15:49.929
at school, I know that if I am not with him,
00:15:50.309 --> 00:15:54.750
the seizure action plan, it's like a... Extra
00:15:54.750 --> 00:15:57.370
resource for the other people who are caring
00:15:57.370 --> 00:16:00.789
for my son when I'm not with him it is a seizure
00:16:00.789 --> 00:16:05.389
action plan is something that is made under the
00:16:05.389 --> 00:16:08.450
administration of a health care provider, so
00:16:08.450 --> 00:16:11.990
it is done professionally Parents or whoever
00:16:11.990 --> 00:16:14.269
is caring for the individual they also can have
00:16:14.269 --> 00:16:16.769
an input on it So it's a collaboration you are
00:16:16.769 --> 00:16:20.490
working together to create a plan that says when
00:16:20.490 --> 00:16:23.500
this if this should occur this is what the steps
00:16:23.500 --> 00:16:26.019
that we are going to take. A seizure action plan
00:16:26.019 --> 00:16:28.840
is also very different for each individual because
00:16:28.840 --> 00:16:31.820
every individual's seizures are going to look
00:16:31.820 --> 00:16:35.480
or be different. Everyone is on different medications.
00:16:35.879 --> 00:16:38.879
They may have a different safety plan of what
00:16:38.879 --> 00:16:42.259
to do, what not to do. So it is important and
00:16:42.259 --> 00:16:45.100
very crucial for a child to have a seizure action
00:16:45.100 --> 00:16:47.179
plan while they're in school or wherever they
00:16:47.179 --> 00:16:52.470
may go because it keeps them safe. It holds teachers,
00:16:53.149 --> 00:16:55.629
principals, anyone accountable, where if there
00:16:55.629 --> 00:16:58.610
were to be a concern or incident at the school
00:16:58.610 --> 00:17:02.529
or at the daycare or at the camp, everybody should
00:17:02.529 --> 00:17:05.410
know what to do in case of an emergency. And
00:17:05.410 --> 00:17:07.589
it's just a piece of calm. It's a piece of mind
00:17:07.589 --> 00:17:10.250
that parents can have and caregivers that even
00:17:10.250 --> 00:17:13.650
though he's not with me, I know that if an emergency
00:17:13.650 --> 00:17:16.289
were to occur, that they know how to take care
00:17:16.289 --> 00:17:20.119
of him. And that's a big thing, too, that I assist
00:17:20.119 --> 00:17:22.000
a lot of clients and families with when they
00:17:22.000 --> 00:17:24.980
call because some people may not want, as adults,
00:17:25.440 --> 00:17:27.599
for their employers to know that, hey, I have
00:17:27.599 --> 00:17:30.279
seizures or a seizure disorder or whatever the
00:17:30.279 --> 00:17:34.240
situation is. However, if you give the information
00:17:34.240 --> 00:17:38.440
to your employer or your manager up front, they
00:17:38.440 --> 00:17:41.839
are going to be more likely to support you. if
00:17:41.839 --> 00:17:45.420
you were to have a seizure at work or wherever
00:17:45.420 --> 00:17:48.180
you may be, they're gonna know exactly what to
00:17:48.180 --> 00:17:51.160
do. They may not have to call for emergency services
00:17:51.160 --> 00:17:53.680
because we know that this needs to be administered.
00:17:54.160 --> 00:17:56.599
We know this is the medication he or she is on.
00:17:56.920 --> 00:17:59.680
So I understand privacy and wanting things to
00:17:59.680 --> 00:18:02.759
be confidential, but you have to be mindful that
00:18:02.759 --> 00:18:04.980
just one sheet of paper like a seizure action
00:18:04.980 --> 00:18:08.579
plan can really make or break an outcome. Yeah,
00:18:08.579 --> 00:18:13.319
for sure. you know, I was talking about my mom
00:18:13.319 --> 00:18:16.319
kind of dealt with that quite a bit as an adult
00:18:16.319 --> 00:18:18.700
living with epilepsy, you know, because when
00:18:18.700 --> 00:18:20.279
she was first diagnosed, it was one of those
00:18:20.279 --> 00:18:22.079
things that we don't, we don't talk about it,
00:18:22.079 --> 00:18:24.059
right? I tell anybody we don't say that because
00:18:24.059 --> 00:18:25.980
you know, you're going to have a, have an episode
00:18:25.980 --> 00:18:29.160
or whatever it may be. And so she just kind of
00:18:29.160 --> 00:18:33.240
grew up not talking about it. And then after
00:18:33.240 --> 00:18:36.519
later on in life, actually, after we did our
00:18:36.519 --> 00:18:39.240
first walk, She started talking about things
00:18:39.240 --> 00:18:42.200
at work and telling people, hey, if this happens,
00:18:42.500 --> 00:18:44.819
and generally, she had hers in the morning before
00:18:44.819 --> 00:18:48.759
work, but she finally went and said, okay, if
00:18:48.759 --> 00:18:51.299
I have a seizure, this is what you need to do.
00:18:51.500 --> 00:18:53.539
Don't call an ambulance. You don't give me time
00:18:53.539 --> 00:18:57.299
to come out of it. Call my husband. And now,
00:18:57.799 --> 00:19:02.690
rescue meds are a whole different ball game because
00:19:02.690 --> 00:19:06.930
they're not rectal diastatic, and that was...
00:19:06.769 --> 00:19:09.349
That was embarrassing for a lot of people for
00:19:09.349 --> 00:19:12.609
a really long time. And so now we've got nasal
00:19:12.609 --> 00:19:16.990
sprays, we have pills, and there's all of that
00:19:16.990 --> 00:19:19.390
that they can put on the seizure action plan
00:19:19.390 --> 00:19:23.490
as well. And hopefully that makes teachers and
00:19:23.490 --> 00:19:26.390
caregivers and all the people at the camp and
00:19:26.390 --> 00:19:28.589
wherever they may be a little bit more comfortable
00:19:28.589 --> 00:19:31.450
to say, okay, in the event that this goes longer
00:19:31.450 --> 00:19:35.289
than the time frame set in the plan, here's our
00:19:35.289 --> 00:19:40.859
option to. to help out absolutely yeah so um
00:19:41.759 --> 00:19:44.319
shifting again because i do think that that is
00:19:44.319 --> 00:19:46.140
that's such a huge thing and it's and it's a
00:19:46.140 --> 00:19:49.740
comfort to the people around you because one
00:19:49.740 --> 00:19:51.759
of the things that you know we always talk about
00:19:51.759 --> 00:19:54.119
as far as people living with epilepsy it doesn't
00:19:54.119 --> 00:19:57.380
just affect the person living with epilepsy it
00:19:57.380 --> 00:20:01.859
affects the family the friends caretakers teachers
00:20:01.859 --> 00:20:05.480
bosses you know whoever is surrounding that person
00:20:05.660 --> 00:20:09.519
it affects them in some way, shape or form. So
00:20:09.519 --> 00:20:12.619
how do we, you know, how do we support those
00:20:12.619 --> 00:20:18.130
people as well? And I guess that leads me to
00:20:18.130 --> 00:20:24.470
what services do you offer? Absolutely. So great
00:20:24.470 --> 00:20:31.319
question. So no, but Again, another great question.
00:20:31.380 --> 00:20:34.400
How do we support people like my parents and
00:20:34.400 --> 00:20:37.240
grandparents and friends and family and anyone
00:20:37.240 --> 00:20:40.299
who wants to be involved or understand? Well,
00:20:40.680 --> 00:20:45.420
we have walks. So we have a lot of outreach community
00:20:45.420 --> 00:20:50.539
things that we can do as a small entity or a
00:20:50.539 --> 00:20:53.579
larger in our community. So we have walks. We
00:20:53.579 --> 00:20:57.369
have our galas, different events that we have.
00:20:57.410 --> 00:21:00.769
We have support groups. We have youth groups.
00:21:00.849 --> 00:21:03.670
So there are different groups that you can get
00:21:03.670 --> 00:21:08.640
plugged into. There are different... walks and
00:21:08.640 --> 00:21:11.380
events that we have that you can find on our
00:21:11.380 --> 00:21:14.000
website. And we also just have the literature,
00:21:14.220 --> 00:21:16.279
we have the resources, the information, we have
00:21:16.279 --> 00:21:19.940
books, we have brochures, we have wonderful tool
00:21:19.940 --> 00:21:22.279
kits for parents whenever their children are
00:21:22.279 --> 00:21:25.440
newly diagnosed. That is one of my jobs, making
00:21:25.440 --> 00:21:28.849
sure that our hospitals here. in Kentucky and
00:21:28.849 --> 00:21:31.910
southern Indiana have that material. So if you
00:21:31.910 --> 00:21:34.069
are immediately for whatever reason, if your
00:21:34.069 --> 00:21:36.589
child is diagnosed, not only are you going to
00:21:36.589 --> 00:21:39.009
unfortunately get a diagnosis that can seem overwhelming,
00:21:39.309 --> 00:21:42.750
but you can take home a package, a pamphlet and
00:21:42.750 --> 00:21:46.210
just information that's going to say, okay, I
00:21:46.210 --> 00:21:48.089
have no idea what just happened. I feel very
00:21:48.089 --> 00:21:50.329
overwhelmed, but at least I can take this home
00:21:50.329 --> 00:21:53.430
and be able to read it over in a quiet area or
00:21:53.430 --> 00:21:55.750
with somebody who can support me and help me
00:21:55.750 --> 00:21:58.069
through this. Those are all the things that are
00:21:58.069 --> 00:22:01.430
gonna really make or break how you maneuver through
00:22:01.430 --> 00:22:04.450
that medical condition. So what, so you're talking
00:22:04.450 --> 00:22:08.049
about the toolkits. What is kind of in that?
00:22:08.329 --> 00:22:13.049
Sure, so the toolkit has, there are different
00:22:13.049 --> 00:22:15.589
tabs in the book and it kind of gives you just
00:22:15.589 --> 00:22:21.289
a layout of what epilepsy is, what the steps
00:22:21.289 --> 00:22:23.789
are to keep your child safe, different things
00:22:23.789 --> 00:22:26.779
that we should be doing. communicating with,
00:22:26.920 --> 00:22:28.819
questions that you should ask, and things to
00:22:28.819 --> 00:22:32.819
look for while you are in this journey of epilepsy.
00:22:33.039 --> 00:22:38.079
It's just a very kind of a 101 source to understand
00:22:38.079 --> 00:22:41.859
what I should do as a parent, what others need
00:22:41.859 --> 00:22:44.400
to be aware of, and the questions and things
00:22:44.400 --> 00:22:48.019
I need to be advocating for for my child. And
00:22:48.019 --> 00:22:50.859
if for some reason you don't know what to do,
00:22:51.099 --> 00:22:55.079
or if it's still not making sense, there's information
00:22:55.079 --> 00:22:58.099
about how you can reach out to places like us,
00:22:58.519 --> 00:23:03.279
people to call different centers that may be
00:23:03.279 --> 00:23:05.680
supportive for your child. So it really is kind
00:23:05.680 --> 00:23:09.220
of like that Bible of what to do and how to do
00:23:09.220 --> 00:23:13.579
it. Yeah. So if you are in the Kentucky and Southern
00:23:13.579 --> 00:23:16.819
Indiana area, You can reach out to Sonya. If
00:23:16.819 --> 00:23:19.859
your hospital center doesn't have those tool
00:23:19.859 --> 00:23:23.299
kits on hand, reach out to us and she can get
00:23:23.299 --> 00:23:26.119
you one and she's excellent about getting those
00:23:26.119 --> 00:23:27.500
out. And I know we send quite a few of those
00:23:27.500 --> 00:23:33.500
out every week. And so that's, I think that's
00:23:33.500 --> 00:23:36.200
one of my favorite things that we do because
00:23:36.200 --> 00:23:39.859
when you get that diagnosis, it's so overwhelming.
00:23:40.099 --> 00:23:43.000
you're sitting there and you know trying to hear
00:23:43.000 --> 00:23:45.500
all of the things and I know the neurologist
00:23:45.500 --> 00:23:47.420
and the epileptologist talk about that too and
00:23:47.420 --> 00:23:50.420
you know they tried not to overwhelm the parents
00:23:50.420 --> 00:23:53.119
or the patients as an adult you know being newly
00:23:53.119 --> 00:23:55.960
diagnosed as well and it's it's hard because
00:23:55.960 --> 00:24:00.480
a lot it's a lot it's a lot it is a lot yes so
00:24:00.480 --> 00:24:06.720
something else that you do every month is a virtual
00:24:06.720 --> 00:24:08.700
seizure first aid training sorry if you can get
00:24:08.700 --> 00:24:11.700
that out The virtual seizure first aid training.
00:24:12.000 --> 00:24:14.579
So talk a little bit about that and why, you
00:24:14.579 --> 00:24:16.440
know, that's something that we feel is really
00:24:16.440 --> 00:24:20.539
important here that you do. So I actually have
00:24:20.539 --> 00:24:23.859
a class today. So at four p .m. So every month,
00:24:24.000 --> 00:24:27.140
twice a month, I offer the seizure first aid
00:24:27.140 --> 00:24:30.019
training classes. I usually do one in the morning
00:24:30.019 --> 00:24:33.720
time and then I offer another time later in the
00:24:33.720 --> 00:24:35.680
afternoons for people to get off from work depending
00:24:35.680 --> 00:24:41.730
on schedules. But again, another free literally
00:24:41.730 --> 00:24:45.829
the easiest way, more comfortable, relaxed way
00:24:45.829 --> 00:24:49.769
to understand seizures, to understand different
00:24:49.769 --> 00:24:53.329
types of seizures, the safety of seizures, what
00:24:53.329 --> 00:24:56.650
to do, what not to do. It's a really great 90
00:24:56.650 --> 00:25:00.589
-minute course to take with me to just understand
00:25:00.910 --> 00:25:04.549
what seizures are and what we should do in the
00:25:04.549 --> 00:25:08.450
sense of an emergency. And so ultimately just
00:25:08.450 --> 00:25:12.650
give you the confidence to be able to identify
00:25:12.650 --> 00:25:15.750
if someone is having a seizure and what to do.
00:25:16.369 --> 00:25:19.210
Of course, we're not neurologists. We are not
00:25:19.210 --> 00:25:22.789
doctors. This is just a training to give you
00:25:22.789 --> 00:25:26.950
the skills and the basic knowledge of what to
00:25:26.950 --> 00:25:32.230
do and how to do it. And again, It's free it's
00:25:32.230 --> 00:25:34.809
something that obviously if if someone has been
00:25:34.809 --> 00:25:37.849
affected if you've been affected you should absolutely
00:25:37.849 --> 00:25:41.190
take the class because once you take it it's
00:25:41.190 --> 00:25:43.269
actually a certification where you are certified
00:25:43.269 --> 00:25:45.970
for two years and that's not coming from me that
00:25:45.970 --> 00:25:47.910
comes from our national so that's something that
00:25:47.910 --> 00:25:50.750
will be emailed to you that's a great resource
00:25:50.750 --> 00:25:54.549
to having your resume or whatever your your job
00:25:54.549 --> 00:25:57.539
title is in your trainings because. Seizures
00:25:57.539 --> 00:26:01.079
are unpredictable. So having that training is
00:26:01.079 --> 00:26:03.579
going to be key to keeping yourself or others
00:26:03.579 --> 00:26:07.880
safe. Statistically, we always talk about one
00:26:07.880 --> 00:26:10.640
in 26 people will develop epilepsy in their lifetime,
00:26:11.140 --> 00:26:13.559
but one in 10 people will have a seizure. So
00:26:13.559 --> 00:26:15.039
I tell people all the time, I'm like, there is
00:26:15.039 --> 00:26:17.579
a very likely chance that at some point in time
00:26:17.579 --> 00:26:20.299
in your life, you are going to see someone have
00:26:20.299 --> 00:26:24.619
a seizure. So knowing how to recognize it, because
00:26:24.619 --> 00:26:28.230
the epilepsies are such a... large umbrella and
00:26:28.230 --> 00:26:30.170
you know all the seizures don't look the same
00:26:30.170 --> 00:26:34.109
so you help people recognize the different types
00:26:34.109 --> 00:26:36.309
and you know what it could look like and what
00:26:36.309 --> 00:26:40.150
to do and one of my favorite stories that I'm
00:26:40.150 --> 00:26:44.069
going to have you share is when you taught the
00:26:44.069 --> 00:26:47.950
college students oh yeah I know like I this is
00:26:47.950 --> 00:26:50.750
one of my favorite stories Yes, I believe we're
00:26:50.750 --> 00:26:53.170
on the we're thinking about the same thing. So
00:26:53.170 --> 00:26:55.769
there are a group of college students. That's
00:26:55.769 --> 00:26:57.950
another great thing about the trainings is that
00:26:57.950 --> 00:27:00.710
not only do I get to do the training with people
00:27:00.710 --> 00:27:03.650
that I don't know anything about, but once I
00:27:03.650 --> 00:27:06.730
do start having trainings with different populations
00:27:06.730 --> 00:27:09.069
and things, people come back. People want to
00:27:09.069 --> 00:27:11.450
take the trainings every three months or once
00:27:11.450 --> 00:27:13.289
a year and different things like that. So there
00:27:13.289 --> 00:27:17.450
was a particular university that I was able to
00:27:17.579 --> 00:27:20.759
do the training with group of students, phenomenal
00:27:20.759 --> 00:27:25.279
students, wonderful. And, you know, they they
00:27:25.279 --> 00:27:28.440
expressed how helpful it was and how grateful
00:27:28.440 --> 00:27:31.039
they were. And, you know, sometimes you do trainings
00:27:31.039 --> 00:27:33.680
and you never hear from people or you might run
00:27:33.680 --> 00:27:38.319
into them. But with this particular campus, I
00:27:38.319 --> 00:27:41.700
got an email from one of the professors that
00:27:41.700 --> 00:27:45.319
had told me that there was a student on their
00:27:45.319 --> 00:27:49.220
campus that ended up having a seizure. And the
00:27:49.220 --> 00:27:52.319
student was protected. They were supported. They
00:27:52.319 --> 00:27:57.000
were helped. And they were able to maneuver all
00:27:57.000 --> 00:27:59.339
of those things and do it effectively because
00:27:59.339 --> 00:28:03.740
of the training. They could not believe, and
00:28:03.740 --> 00:28:05.740
I feel like it was pretty recent, like they had
00:28:05.740 --> 00:28:08.119
the training with me and it wasn't too far out
00:28:08.119 --> 00:28:12.039
to where the situation occurred. And they just
00:28:12.039 --> 00:28:15.019
could not believe that taking a training and
00:28:15.019 --> 00:28:17.339
then actually seeing it develop and happen in
00:28:17.339 --> 00:28:19.920
real time, they were like, oh my goodness, we
00:28:19.920 --> 00:28:24.099
are so grateful that you came out and you did
00:28:24.099 --> 00:28:26.099
the training because the students, of course
00:28:26.099 --> 00:28:27.819
people are going to be nervous, but they knew
00:28:27.819 --> 00:28:30.539
exactly what to do. They knew exactly what not
00:28:30.539 --> 00:28:35.920
to do. They were calm and there was. a good outcome.
00:28:36.200 --> 00:28:38.299
That's the whole point of that story is that
00:28:38.299 --> 00:28:41.400
the outcome was positive. There has been so many
00:28:41.400 --> 00:28:43.960
times unfortunately where there are bad outcomes
00:28:43.960 --> 00:28:47.279
because people generally just don't understand
00:28:47.279 --> 00:28:49.339
what to do or maybe they're not confident enough.
00:28:49.359 --> 00:28:52.599
Maybe they don't want to step in and help. With
00:28:52.599 --> 00:28:55.000
those particular students they knew exactly what
00:28:55.000 --> 00:28:57.740
to do and it made me feel good. It really did.
00:28:57.859 --> 00:29:00.019
I mean obviously the work that we all do is very
00:29:00.019 --> 00:29:02.640
effective but when you hear those personal stories
00:29:02.940 --> 00:29:05.660
it just makes it so much sweeter. So I was just
00:29:05.660 --> 00:29:08.519
grateful that that person was able to be on the
00:29:08.519 --> 00:29:11.099
better side of things. And I'm just so grateful
00:29:11.099 --> 00:29:13.740
that, you know, a training, something as simple
00:29:13.740 --> 00:29:15.940
as a seizure first aid training that's 90 minutes
00:29:15.940 --> 00:29:19.700
can really save a life. Yeah. It always gives
00:29:19.700 --> 00:29:23.059
me chills. It makes me so happy. Yes, me too.
00:29:23.259 --> 00:29:25.980
And those are the stories that we want to share
00:29:25.980 --> 00:29:29.160
because that's why we do what we do to support
00:29:29.160 --> 00:29:32.319
the epilepsy community. And, you know, because
00:29:32.480 --> 00:29:34.720
Everybody's seizures look different. Everybody's
00:29:34.720 --> 00:29:37.079
postictal phase looks different. So after the
00:29:37.079 --> 00:29:38.619
seizure, you know, some people take a very long
00:29:38.619 --> 00:29:40.960
time to come out and some people come out very
00:29:40.960 --> 00:29:44.480
quickly. And, you know, we we do some law enforcement
00:29:44.480 --> 00:29:47.180
training to help people understand that. And
00:29:47.180 --> 00:29:51.559
it's just it's an incredible thing. And I kudos
00:29:51.559 --> 00:29:55.539
to you for being amazing and doing it and. And
00:29:55.539 --> 00:29:59.339
I know you travel places or you do specific virtual
00:29:59.339 --> 00:30:02.359
classes for different businesses and people across
00:30:02.359 --> 00:30:05.299
the state, which I think is incredible. And if
00:30:05.299 --> 00:30:09.799
you can get your staff trained, do it. Do it.
00:30:09.980 --> 00:30:17.000
It's free. It's free. No charge. In our climate
00:30:17.000 --> 00:30:19.259
right now, it's really important. It's really
00:30:19.259 --> 00:30:24.670
important. But looking at you know, other services
00:30:24.670 --> 00:30:28.589
that we offer. I know you receive a lot of phone
00:30:28.589 --> 00:30:31.930
calls, a lot of phone calls throughout the day
00:30:31.930 --> 00:30:35.210
and the week and different things. So what are
00:30:35.210 --> 00:30:38.309
some other things that you see that people in
00:30:38.309 --> 00:30:41.910
the epilepsy community are needing support for?
00:30:42.589 --> 00:30:45.910
And, you know, how can not only Kentuckiana help
00:30:45.910 --> 00:30:48.730
because we're kind of limited that we can help
00:30:48.730 --> 00:30:50.430
specifically in the state of Kentucky and Southern
00:30:50.430 --> 00:30:53.450
Indiana, but If you're not here, we can connect
00:30:53.450 --> 00:30:55.269
you with all the right people that can help.
00:30:56.349 --> 00:30:59.809
So what else, what are you seeing? What do people
00:30:59.809 --> 00:31:04.190
need help with? So I would say a large bulk of
00:31:04.190 --> 00:31:07.589
our phone calls that I receive is always going
00:31:07.589 --> 00:31:11.319
to go back to transportation. or needing support
00:31:11.319 --> 00:31:17.440
in school with their child. With 504 plans, IEPs,
00:31:18.099 --> 00:31:21.420
just supporting their child, making sure that
00:31:21.420 --> 00:31:23.839
they are treated fairly, that they are getting
00:31:23.839 --> 00:31:26.759
the correct supports that they need in the classroom
00:31:26.759 --> 00:31:30.839
to thrive, and adults making sure that they can
00:31:30.839 --> 00:31:34.119
get from point A to point B with their doctor's
00:31:34.119 --> 00:31:36.480
appointment. So transportation and that school
00:31:36.480 --> 00:31:41.289
support is a major major key piece of the bulk
00:31:41.289 --> 00:31:45.130
of the phone calls that I get and insurance so
00:31:45.259 --> 00:31:49.059
Dealing with all of that. We I try to just each
00:31:49.059 --> 00:31:51.920
person is different. So it's very individualized
00:31:51.920 --> 00:31:55.680
I can't treat this person with this scenario
00:31:55.680 --> 00:31:58.579
and feel like this is gonna help this family
00:31:58.579 --> 00:32:02.440
because everybody's treatment goals and seizures
00:32:02.440 --> 00:32:06.319
look different So that's what another kind of
00:32:06.319 --> 00:32:09.160
unique thing about my job here as well is not
00:32:09.099 --> 00:32:12.700
Yes, the material may be the same as far as the
00:32:12.700 --> 00:32:15.400
the literature and the resources and the support
00:32:15.400 --> 00:32:18.240
groups But the way the approach that I take with
00:32:18.240 --> 00:32:20.259
each individual is going to be different because
00:32:20.259 --> 00:32:23.579
everybody needs different things So when it comes
00:32:23.579 --> 00:32:26.180
to transportation making sure that I get them
00:32:26.210 --> 00:32:30.789
With the right vouchers or figuring out creative
00:32:30.789 --> 00:32:34.529
ways public transportation or again ways to get
00:32:34.529 --> 00:32:37.470
them to their appointments if it is life or death,
00:32:37.609 --> 00:32:40.170
or making sure that before we reach your next
00:32:40.170 --> 00:32:42.730
appointment next month, let's communicate now
00:32:42.730 --> 00:32:44.950
and bridge those gaps, the barriers of what we
00:32:44.950 --> 00:32:47.450
need to do, how we're gonna get you there. Because
00:32:47.450 --> 00:32:50.130
if your appointment is tomorrow and you call
00:32:50.130 --> 00:32:53.569
me today at 430, we're gonna be less likely to
00:32:53.569 --> 00:32:56.890
maybe help you immediately because we need some
00:32:56.890 --> 00:33:00.170
time to get you the vouchers to make sure that
00:33:00.170 --> 00:33:02.970
you have those transportation needs. And as far
00:33:02.970 --> 00:33:07.259
as with school, I love participating in ARC meetings,
00:33:07.759 --> 00:33:13.579
IEP 504s, those are more specific to the child.
00:33:14.259 --> 00:33:16.220
And depending on the school you're in, depending
00:33:16.220 --> 00:33:19.500
on the different things that are necessary, we
00:33:19.500 --> 00:33:21.880
come up with a plan that's gonna best support
00:33:21.880 --> 00:33:25.960
that student in that environment. Those are all
00:33:25.960 --> 00:33:29.359
amazing things. And I know that, you know, driving,
00:33:29.799 --> 00:33:33.349
that's a huge, it's a huge. Barrier for a lot
00:33:33.349 --> 00:33:36.309
of people with epilepsy because and it's different
00:33:36.309 --> 00:33:39.349
in every state I mean, you know some I think
00:33:39.349 --> 00:33:42.210
some states it's three months some it's What
00:33:42.210 --> 00:33:46.509
90 days 60 days one year six months? It's it's
00:33:46.509 --> 00:33:49.750
kind of different everywhere but you know if
00:33:49.750 --> 00:33:51.950
you have a seizure then you can't drive and if
00:33:51.950 --> 00:33:53.650
you can't drive sometimes that makes it difficult
00:33:53.650 --> 00:33:55.630
to get to work or to get to your appointments
00:33:55.630 --> 00:33:57.690
or to get your kids dropped off at school if
00:33:57.690 --> 00:34:00.210
they can't you know ride the bus and it could
00:34:00.210 --> 00:34:03.579
be a It's a lot. Very trying times for a lot
00:34:03.579 --> 00:34:07.740
of people. So I know that's something, it's a
00:34:07.740 --> 00:34:13.050
difficult thing for a lot of people. And so shifting
00:34:13.050 --> 00:34:15.829
gears a little bit, but yet keeping, you know,
00:34:15.829 --> 00:34:20.789
with the same thing. How have you seen awareness
00:34:20.789 --> 00:34:25.329
and advocacy change in your five years here at
00:34:25.329 --> 00:34:28.329
the foundation or since, you know, your son's
00:34:28.329 --> 00:34:31.519
diagnosis? How have you seen things change and
00:34:31.519 --> 00:34:33.340
are they getting better? Do you feel like we're
00:34:33.340 --> 00:34:36.179
moving in the right direction? Absolutely. We
00:34:36.179 --> 00:34:37.920
are definitely moving in the right direction.
00:34:38.260 --> 00:34:41.239
Just example what we're doing now. The Between
00:34:41.239 --> 00:34:44.920
Two Sparks is a wonderful new platform that Courtney
00:34:44.920 --> 00:34:47.980
created, which we are really loving. But this
00:34:47.980 --> 00:34:51.679
platform right here is super helpful because
00:34:51.679 --> 00:34:54.679
it is allowing people to listen in, to hear real
00:34:54.679 --> 00:34:58.119
people, real parents, real professionals talk
00:34:58.119 --> 00:35:02.480
about daily living struggles and concerns. And
00:35:02.480 --> 00:35:04.900
this hopefully is going to be helpful for another
00:35:04.900 --> 00:35:07.159
parent or someone else who may have a child that's
00:35:07.159 --> 00:35:09.800
newly diagnosed. But yes, we are definitely moving
00:35:09.800 --> 00:35:12.380
in the right direction. As far as the five years
00:35:12.380 --> 00:35:15.820
I've been here, yes, we are doing great things
00:35:15.820 --> 00:35:21.579
here because not only has our team has changed,
00:35:21.780 --> 00:35:26.010
we've had Some changes that have been you know
00:35:26.010 --> 00:35:28.829
difficult to see people leave but happy also
00:35:28.829 --> 00:35:31.409
that people like you are here now and so because
00:35:31.409 --> 00:35:34.250
our Responsibilities have changed a bit. We have
00:35:34.250 --> 00:35:37.050
new ideas and new things that we are participating
00:35:37.050 --> 00:35:42.550
in as far as for me At first, I wasn't the educator
00:35:42.550 --> 00:35:46.110
on seizure first aid. Now I am. So that changed
00:35:46.110 --> 00:35:48.510
a lot for me. That means I'm traveling more.
00:35:48.550 --> 00:35:51.409
That means I'm connecting with more people on
00:35:51.409 --> 00:35:54.469
the educational piece. That means that I am.
00:35:54.699 --> 00:35:58.480
being more a part of leadership conferences and
00:35:58.480 --> 00:36:01.699
things that maybe was available, but now I need
00:36:01.699 --> 00:36:04.820
to be there or I want to do it more because I'm
00:36:04.820 --> 00:36:08.260
able to network more and collaborate with people
00:36:08.260 --> 00:36:11.380
that I know will be supporter for me and my clients
00:36:11.380 --> 00:36:13.760
that I serve so I can bring all that information
00:36:13.760 --> 00:36:17.059
back here and deliver it in this room or on the
00:36:17.059 --> 00:36:20.159
phone with other people. The Epilepsy Foundation
00:36:20.159 --> 00:36:22.719
here, we are absolutely, have always been doing
00:36:22.719 --> 00:36:26.460
great work. I just feel that now that we are
00:36:26.460 --> 00:36:29.119
viewing things differently and offering more
00:36:29.119 --> 00:36:31.840
services and platforms like this, it just gives
00:36:31.840 --> 00:36:36.719
our populations and communities a more opportunity
00:36:36.719 --> 00:36:39.699
to be more involved. Yeah, yeah, I love that.
00:36:40.599 --> 00:36:44.820
So to piggyback on that, I always close out with
00:36:44.820 --> 00:36:49.429
asking the question to my guest. What is your
00:36:49.429 --> 00:36:53.989
spark of hope right now in the epilepsy space,
00:36:54.150 --> 00:36:56.449
epilepsy world, however you want to label it?
00:36:56.510 --> 00:36:59.769
What is your spark of hope at the moment? Well,
00:37:00.929 --> 00:37:07.309
my spark of hope would be for people to advocate
00:37:07.309 --> 00:37:11.269
more for themselves, to not be afraid to ask
00:37:11.269 --> 00:37:14.750
the questions. Don't be afraid to go to the walks
00:37:14.750 --> 00:37:18.789
or be a part of more support groups, because
00:37:18.789 --> 00:37:22.829
when you are present, just being present in moments
00:37:22.829 --> 00:37:27.730
like this can be very impactful for the person
00:37:27.730 --> 00:37:31.030
that you are caring for, or that you are supporting,
00:37:31.650 --> 00:37:35.699
and the hope is that people will just, if they
00:37:35.699 --> 00:37:37.719
see a seizure, oh, I know exactly what to do,
00:37:37.820 --> 00:37:40.500
and just get up and do it. Not think about it,
00:37:40.840 --> 00:37:43.000
not think about, oh my goodness, am I gonna hurt
00:37:43.000 --> 00:37:46.329
this person, or. Is something bad going to happen?
00:37:46.489 --> 00:37:48.190
No. If you see something, we're going to start
00:37:48.190 --> 00:37:51.789
doing something. That is the hope. The hope is
00:37:51.789 --> 00:37:54.590
that not only is this going to be for adults,
00:37:54.630 --> 00:37:57.250
this is going to be for youth too. Because when
00:37:57.250 --> 00:37:59.650
I am speaking about trainings and things for
00:37:59.650 --> 00:38:01.869
adults, I also do the same thing in schools as
00:38:01.869 --> 00:38:05.849
well. And there can be a kid in a classroom setting
00:38:05.849 --> 00:38:09.469
that could see someone like Braden, my son, or
00:38:09.469 --> 00:38:12.010
anybody be going through a seizure or maybe getting
00:38:12.010 --> 00:38:14.820
ready to have one. And that child can say, Miss
00:38:14.820 --> 00:38:17.239
whoever something's not right with that child
00:38:17.239 --> 00:38:19.940
or the student he they look different. My friend
00:38:19.940 --> 00:38:22.539
is acting funny Those are the things that I want
00:38:22.539 --> 00:38:24.440
people to start communicating more about because
00:38:24.440 --> 00:38:27.260
the more we talk the more we observe the more
00:38:27.260 --> 00:38:30.019
things will get done and we won't be afraid to
00:38:30.019 --> 00:38:33.579
say Are you feeling okay? Because even if I'm
00:38:33.579 --> 00:38:36.619
wrong, at least I was trying to do my best I'm
00:38:36.619 --> 00:38:39.110
trying to be as helpful as possible because You
00:38:39.110 --> 00:38:41.349
just never know what people are going through.
00:38:41.730 --> 00:38:44.030
And so that spark of hope is just making sure
00:38:44.030 --> 00:38:47.650
that we as staff and as a team here are providing
00:38:47.650 --> 00:38:51.489
the support. We are providing services that make
00:38:51.489 --> 00:38:56.769
people feel more inclusive and more involved
00:38:56.769 --> 00:38:59.710
and not feel like outsiders. So when you get
00:38:59.710 --> 00:39:02.510
the diagnose, whether it's epilepsy or whatever,
00:39:02.769 --> 00:39:06.010
you're not afraid to say, I know who I can call.
00:39:06.590 --> 00:39:09.190
the epilepsy foundation has a group for this
00:39:09.250 --> 00:39:13.510
or I know who to call. They can assist me with
00:39:13.510 --> 00:39:17.570
the medication support or hey, I have no idea
00:39:17.570 --> 00:39:20.530
what I'm doing. Let me talk to you first. That
00:39:20.530 --> 00:39:24.510
is what I hope that comes out of this. Just all
00:39:24.510 --> 00:39:25.949
of the things that we are doing here because
00:39:25.949 --> 00:39:28.869
we are doing such incredible things here and
00:39:28.869 --> 00:39:32.070
you don't know unless you know, right? So that's
00:39:32.070 --> 00:39:35.230
my love. I love it. No, that's so good. And you
00:39:35.230 --> 00:39:38.840
know, It is because it is so overwhelming and
00:39:38.840 --> 00:39:41.500
and there still is some of that negative stigma
00:39:41.500 --> 00:39:45.280
that that is just holding on I just wish it would
00:39:45.280 --> 00:39:48.139
let go and you know and the people would still
00:39:48.139 --> 00:39:51.099
feel you know feel more comfortable talking about
00:39:51.099 --> 00:39:54.719
it and because there are so many people so many
00:39:54.719 --> 00:39:57.380
people living with this condition and You know
00:39:57.380 --> 00:39:59.380
or that are living with somebody who is living
00:39:59.380 --> 00:40:03.300
with it and it's it's scary And you shouldn't
00:40:03.300 --> 00:40:05.539
feel isolated. We want you to feel the community.
00:40:05.599 --> 00:40:09.480
We want to lift you up. And that's always one
00:40:09.480 --> 00:40:11.300
of the things, and I probably have said this
00:40:11.300 --> 00:40:13.340
in every episode, it's my favorite thing about
00:40:13.340 --> 00:40:15.760
the Uplift Sea community. They're so positive.
00:40:16.500 --> 00:40:18.960
Everybody wants to help everybody else. And we're
00:40:18.960 --> 00:40:22.019
going to uplift everybody in here, because no
00:40:22.019 --> 00:40:24.179
matter what you're going through, we want to
00:40:24.179 --> 00:40:26.380
help you. Absolutely. And we want to be positive,
00:40:26.400 --> 00:40:28.619
and we want to support you. And so hopefully,
00:40:28.909 --> 00:40:32.829
That continues. Yes. And again, before we close
00:40:32.829 --> 00:40:35.070
out and everything, me and Courtney, of course,
00:40:35.130 --> 00:40:37.269
we were talking about, you know, how this is
00:40:37.269 --> 00:40:39.869
going to go and the flow. And I was actually
00:40:39.869 --> 00:40:42.210
a little nervous. I said, OK, sure, we can sit
00:40:42.210 --> 00:40:45.030
down and talk about, you know, the good and bad
00:40:45.030 --> 00:40:46.989
and things that might feel a little, you know,
00:40:47.050 --> 00:40:49.670
a little a little shaky and unclear. But the
00:40:49.670 --> 00:40:52.750
point of that is that. This is producing nothing
00:40:52.750 --> 00:40:55.489
but positive things for people So regardless
00:40:55.489 --> 00:40:58.769
if I'm nervous or if you're nervous or we don't
00:40:58.769 --> 00:41:00.690
really know exactly how this is gonna go That's
00:41:00.690 --> 00:41:03.610
what makes this so great because this is not
00:41:03.610 --> 00:41:06.469
scripted Like we are literally just having conversations
00:41:06.469 --> 00:41:09.650
about that affect us personally or how it can
00:41:09.650 --> 00:41:12.409
affect other people living with epilepsy So this
00:41:12.409 --> 00:41:14.710
is what people need to see this is real life.
00:41:14.710 --> 00:41:17.500
This is things that are happening day to day,
00:41:17.699 --> 00:41:20.300
so when people look at things like this and see
00:41:20.300 --> 00:41:22.880
these type of conversations, people can say,
00:41:23.179 --> 00:41:25.559
oh, okay, she looks like a normal person. Maybe
00:41:25.559 --> 00:41:27.960
I should give her a call. Like, I don't bite.
00:41:28.260 --> 00:41:32.659
Like, we are here to help. And that's the vibes
00:41:32.659 --> 00:41:36.000
that I want us to be able to provoke people and
00:41:36.000 --> 00:41:38.500
understanding that, hey, calling the foundation
00:41:38.500 --> 00:41:40.980
is not a big deal. Like, if I might be afraid
00:41:40.980 --> 00:41:43.579
to ask questions, but... After watching them
00:41:43.579 --> 00:41:46.000
talk they seem like they're pretty laid -back,
00:41:46.159 --> 00:41:48.940
you know, it's not gonna be a big deal So that's
00:41:48.940 --> 00:41:51.960
again like the hope is just to feel more comfortable
00:41:51.960 --> 00:41:54.900
more relaxed and just if you don't know then
00:41:54.900 --> 00:41:57.440
you just need to ask Yeah, and we're here. We're
00:41:57.440 --> 00:41:59.239
here. We answer those questions and if we don't
00:41:59.239 --> 00:42:02.289
have the answer We will definitely find it. I
00:42:02.289 --> 00:42:05.030
will always find an answer. If it's not today,
00:42:05.389 --> 00:42:07.869
give me some time, but I always let my people
00:42:07.869 --> 00:42:11.110
know that I will call you back. I will follow
00:42:11.110 --> 00:42:13.530
up. I feel like we are all really great here
00:42:13.530 --> 00:42:17.989
with communication and listening and just understanding
00:42:17.989 --> 00:42:23.469
what each family or individual needs. Thank you.
00:42:23.530 --> 00:42:25.650
You're amazing too. Thank you. Yes, this is so
00:42:25.650 --> 00:42:28.230
nice. Of course. And hopefully maybe we'll get
00:42:28.230 --> 00:42:31.429
to do this again soon and chat about some other
00:42:31.429 --> 00:42:34.289
things. So absolutely. Thank you so much. Thank
00:42:34.289 --> 00:42:37.739
you. This has been awesome. Thanks for listening
00:42:37.739 --> 00:42:40.219
to Between Two Sparks. If this episode sparked
00:42:40.219 --> 00:42:42.340
your interest, I encourage you to share it with
00:42:42.340 --> 00:42:44.320
someone who could benefit from the conversation.
00:42:44.739 --> 00:42:47.519
To learn more or find support, visit the Epilepsy
00:42:47.519 --> 00:42:51.260
Foundation of Kentuckiana at efky .org and explore
00:42:51.260 --> 00:42:53.960
the resources available to you. And remember,
00:42:54.360 --> 00:42:57.360
no one blocks this journey alone. We'll see you
00:42:57.360 --> 00:42:59.019
next time. Bye friends.