November 8, 2023 • 30 mins
November is Epilepsy Awareness Month. My guest is Channing Seideman, who dreamed of being a doctor - and - an Olympic champion, until her dreams were sidelined by an epilepsy diagnosis at age 10.
Channing has invited us in to understand how this devastating condition affects her daily life, and the lives of her parents, who've been helping her for more than 20 years to navigate the seizures, the medical system and support her efforts to fund an epilepsy research project.
Her dad, Rob Seideman, joins us for a bit of the conversation. Other than being Channing's father, he works as the Executive Director of May We Help, a non-profit that changes lives by envisioning adaptive technology, designing it, building it, and providing it free to those who need it in the Tri-State.
Cure Epilepsy
Epilepsy Awareness Month
Channing has invited us in to understand how this devastating condition affects her daily life, and the lives of her parents, who've been helping her for more than 20 years to navigate the seizures, the medical system and support her efforts to fund an epilepsy research project.
Her dad, Rob Seideman, joins us for a bit of the conversation. Other than being Channing's father, he works as the Executive Director of May We Help, a non-profit that changes lives by envisioning adaptive technology, designing it, building it, and providing it free to those who need it in the Tri-State.
Cure Epilepsy
Epilepsy Awareness Month
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:06):
This week on iHeart since November isephilepsy Awareness Month, and I have two
very special guests today to explain whatit is and how they manage. You
may remember Rob Sideman. He's beenon the show before representing May We Help,
a nonprofit that creates, builds,and delivers for free accessibility products that
(00:27):
are not available commercially right here inthe Tri State. Today we are meeting
Rob's adult daughter, Channing Sidemen.Like any kid, you grew up with
big dreams of what you wanted tobe. And I wanted to be a
doctor and compete in the Olympics andhorseback riding. Channing's big dreams. But
living with epilepsy change things. Andshe's invited us into her world today to
(00:49):
allow us to observe how this devastatingcondition affects her daily life. Her dad
Rob, She enrolled in two yearof junior college and have a seizure there
and was asked to consider leaving.She was told literally and I quote,
that Caesars would becoming too disruptive forthe classroom. Epilepsy changes everything, and
today you'll hear channing story and hearhow she's making a difference with her personal
(01:15):
goal to fund an epilepsy research grant. Now on iHeart Cincy with Sandy Collins.
Welcome to this public affairs show.iHeart Cincy on this iHeartRadio station.
I'm Sandy Collins because we love Cincy. It's people, it's history, it's
sports and entertainment, dining, andso much more. Today my guest is
one of those great people. ChanningSideman and her dad will chime in a
(01:38):
bit here. Rob. We spokelate last month in preparation for November's Epilepsy
Month observance. Now, roughly fourhundred and seventy thousand children are living with
epilepsy in the US, and overall, nearly three and a half million people
have the neurological disorder that affects allages, races, and genders. Thanks
for being on the show. Yourdad told me about Oh absolutely, your
(02:02):
dad told me about National Epilepsy Monthand how epilepsy affects your family, and
said that he is so amazed athow you're handling your situation, and so
he said, I really should talkto you. So I listened to everything
he says and do everything he says. So let's talk about epilepsy. I
(02:25):
need to know a little bit aboutyou, how old you are, you
know, kind of what you do, where you went to school. Just
a quick update, and then tellme about epilepsy. Yeah, so I'm
thirty and I grew up and Iwas fortunate enough to grow up in Aspen,
Colorado, and where I I wentto school, and we moved out
(02:49):
here to Cincinnati in twenty eleven afterI graduated. And that is my bi
and us going off. It's anactually it's an implant. I have top
with my epilepsy, but that's thebiggest nerve stimulator. And what it does
is it's kind of like a pacemakerbut for the brain. Mm hm.
So sometimes I get a god fortheir father voice going, you'll have to
(03:10):
excuse me for that. No,that's okay. Do you need to take
a break. Should we take Shouldwe take a break until it stops?
Nope, it just stopped, Okay. But I moved out here for my
dad's job actually twenty eleven after graduating, and we've kind of uh and we've
(03:36):
found our place in Moford is wherewe ended up. But epilepsy. So
I was diagnosed with epilepsy after havingmultiple seizures when I was at the age
of ten and like like any kidyou you grew up with, you know,
big dreams of what you wanted tobe and I wanted to be a
doctor and compete in the Olympics andher speck riding. After my diagnosis with
(04:02):
epilepsy, I became patient, saidthe doctor, And it was a struggle
for me to stand the saddlem.But the one of the things with epilepsy
is that you don't hear about isthe stigma, and that's some of them
for epilepsy. One this month wekind of wanted to shine a light on
that stigma when you hear epilepsy.When I was like noosed, I had
(04:27):
never heard the word. Personally,I had heard the word seizure, but
I had never heard of epilepsy.And that's because it's not talked about.
It's this shrouded with myth, fear, uh, misunderstanding, misinformation. When
I think of seizure and I haveepilepsy, but I think when I think
(04:50):
anyone thinks of seizure, you thinkof that kind of big, scary person
that goes unconscious, starts shaking,maybe formed out the mouth, maybe turns
blue. That that big and scaryseizure. So if there was a myth
that I could just spell for upwebsite, it would be that there's more
(05:13):
than one type of seizure. Mmhmm, well we can get into that.
Let's get into that in just alittle bit. I want to take
a break here, and just couldI add a little bit about the schooling,
because you'd asked about schooling, sure, and so you know, elementary,
middle and high school. Everybody wasvery accommodating, very sensitive to Channing's
(05:34):
needs. Uh. Then she enrolledin Colorado Mountain College, a two year
junior college, and had a seizurethere, and uh was asked to consider
leaving SI to leave that she wastold literally and I quote, the seizures
would becoming too disruptive for the classroom. And she'd only had a total of
(05:59):
two seizures Colorado Mountain College in twoyears. So anyway, she was asked
to leave, and it was itwas horrible and terribly upsetting. And so
I just wanted to add that aboutthe schooling. Rob is that legal?
I mean, it's happened, butwas it legal to do that? They
didn't. They were careful in theirchoice of words. They said that Channing
(06:21):
should consider leaving because the seizures werebecoming too disruptive. They didn't actually ask
her to, but the message wassent and the damage was already done,
so it became a big thing.Newspapers wrote it up. Colorado Mountain College
did make some significant changes to theirhandbook, for example, and the way
(06:42):
teachers would deal with situations like this, and so forth. Steps were made,
but you know, progress was made, and our hope wasn't to sue
or anything like that. Our hopewas just simply that the next person that
went through this at CMC would Iwouldn't have to deal with what Channing did.
Must have been very difficult, Channing, what were all the same?
It What was interesting about that oneis that it was an EMT class that
(07:04):
I was taking. Oh my,so it was I was a perfect victim.
I was a great victim in thatclass. But I knew I knew
the instructor because he was actually anAMT that came to the most of the
local horse shows, and he hadworked on me because I did have a
seizure a horse show. The disabilitiescoordinator at the school her brother actually had
(07:28):
epilepsy. So before the class evenstarted, we had sat down with the
disabilities coordinator and the teacher. Youknow, we wanted to just get it
all out there, make sure itwasn't going to be a problem, but
we wanted to make make sure theyhad kind of information, anything and everything
to make them comfortable and set meback for success to get through the class.
(07:49):
And then once I had the seizurein class, they waited forty minutes
to call my parents. So itwas really an odd event to say,
yeah, well, let's talk alittle bit chanting about actually what is epilepsy.
It's a brain disorder that causes seizures. What do you know about it
from a layman's point of view?So definition literally is having had multiple seizures.
(08:16):
It's just electrical activity in your brainthat's doing something that you don't want
it to do. That's electrical activityin your brain. That's exactly it.
My brain sometimes just gets just getsstuck, It gets a little overactive,
and indeeds shut down and restart.And so the doctors don't really know how
this works. They don't know muchabout epilepsy. No, it's such a
(08:43):
debilitating disease. And I'm not tellingyou anything you don't know, but I
do know that a friend years ago. He was a pilot and he flew
commercial airlines, and once he'd hadhis second seizure, they took his pilot's
license. He couldn't drive anymore.He lost his career. And I'm sitting
(09:05):
there and we were doing an epilepsyinterview, and I looked at this,
you know, forty something year oldman who went from the top of the
world to not being able to doa whole lot, and I just thought,
how devastating this must be, andchanting, I. I don't mean
to dwell on that, but thisis a really big part of your condition.
(09:30):
How has it affected you in yourpath from college to now. I
still continued with education. We lookedfor virtual jobs that for me to help
kind of try and get into theworking the workplace, Thank you workplace.
(09:50):
I found an online school for medicaltranscription. And I always wanted to be
in the medical field. I wanted, like I said, I wanted to
be a doctor, and this wasa way for me to do to continue
that medical field, just in adifferent and a different aspect of it.
And I did really well, andI got to join a fantastic company called
(10:13):
the Ice Scribes. They were greatwith me. They helped me set up
for success, and I worked fromhome and I was with them for about
four years. I just wasn't readyfor the workplace quite yet, balancing work,
balancing my health and balancing and tryingto take care of me. And
(10:35):
it was it just what I wasn'tready for you yet. And that's okay,
absolutely, so I did continue withthe schooling. We tried biling coding
next. That was the next stabwe did. And what was that again?
Medical billing and coding? Okay,and Sandy, I just couldn't do
(10:58):
biddling coding for the life of me. Those cowards that ICD ten. That's
just a little above Well, atleast you know your limits. Yes,
I know my limits are above multiplicationand division. After that, it's too
much for me, yep ICD tenis a little too much for me.
(11:18):
So but personally, Sandy, ifI could choose any job, I would
probably be working out of farm scoopingproof out of stalls. That is what
I love to do. Oh well, let's get to that. At the
end of this, we'll give yourcontact information if anybody wants to hire you.
There you said earlier, there weredifferent types of seizures I saw one
(11:39):
seizure in my life at the mall, and it was scary. Yeah,
you don't know what to do.So what do you suggest people who observe
someone having a seizure do. Whenyou see a seizure, it's probably gonna
(12:00):
be a big and scary one likethe like the one you saw, And
those are the ones that we mostcommonly think of. Those are the generalized
tonic chlonic seizures where we go unconscious, we can vols. And what you
do is you're you're gonna time it. Anything over five minutes, you want
(12:24):
to call nine one one, Andyou're gonna want to move any objects out
of the way where they could hittheir head, roll them on their side
so they don't choke on anything,try to get any jewelry out of the
way. You can administer maybe you'rerescue medication if you have it on you,
(12:45):
for like for instance Ada Van,But honestly, Sandy, it's it's
there. There's not much you cando. But like I said, there
is more than one type of seizure, and sometimes it's even the small the
other seizures that can be more dangerous. For instance, those big scary ones
I have had probably around seventy ofthose now, But on a daily basis,
(13:13):
I have seizures that more resemble hiccups, or sometimes I'll space out and
I'll look like a daydream. Maybeit'll be just a twitch in the face,
Maybe it'll be a gasp. Maybeother seizures cause me to lose my
(13:33):
vision, maybe I'll lose my speech, maybe I won't be able to move.
Then there's seizures that are kind oflike a dead man fall drop seizures.
But for me, crossing the streetcan be more scary than riding a
horse, because if I'm crossing astreet and I space out, They're not
(13:54):
going to see me spaced out.They're gonna think I'm gonna keep going.
So in certain instances, those smallerseizures can be more scary than those big
seizures for the person having that seizure. Time for a quick break. My
guest is Channing Sideman and her dadRob Sideman. Channing is living with epilepsy,
and we're talking about Epilepsy Awareness Month. There's a lot more coming up.
(14:16):
You become invisible, actually you becomeeven more invisible. It's forget you,
who's this cute dog? And itmakes epilepsy approachable. That's coming up,
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(14:37):
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(15:01):
It's so good. Click this linknow to review my bank transfer.
I didn't make a bank transfer,augh another phishing message? Are you frustrated
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scammers and you can learn too.Go to Sissa at CISA dot gov forward
slash secure our world from more quickeasy tips to be safer online. This
is iHeart Cincy. I'm Sandy Collinswith my special guest today, Channing Sideman,
who's been living with epilepsy for twentyyears, along with your dad,
Rob Sidaman. They were here duringEpilepsy Awareness Month. Your dad says,
(16:17):
you have a rescue dog. I'mnot a rescue dog, a service dog.
Your dad's dog who rescued you.Yeah, you have a service dog
and that that helps you. Yeah. I have a Caesar Alert dog named
Bishop, and he is my secondservice dog. And he is right here.
Actually, Oh, he's a goldencolor he na what is it?
(16:41):
No, he's golden with about twentyfive percent poodle, but we still call
him just golden. Oh. Andhe's just got straight, beautiful hair.
And he's huge. What is heabout sixty seventy eighty pounds. We're pushing
all over one hundred they're sandy.Wow. Well I can only see his
head and it looks like a likean eighty pound head, So wow,
how long have you had the dog? So Bishop and I have been together
(17:03):
for three years, and he isdifferent than my first service dog. So
my first service dog was a Caesarresponse dog, and the Caesar responds dog
can help with more of the afterpart of the seizures. She would go
get my medication for me, shecould go get help for me, she
could go get the phone. Shewas the wet nose that I would wake
up to. And Bishop is alsothe wetness that I wake up to.
Don't get me wrong, but he'sa sizear alert dog. So he helps
(17:26):
me with the before the seizure.And so he has an incredible nose,
Sandy his nose nose, and he'sdone scent training. And with that scent
training, they've kind of recognized thatseizers give up an aura, and so
(17:48):
they take armpit swabs or saliva swabsand they give that to the dog with
the sweat after a person has aseizure to help that scent training. And
once you're per with that dog withyour service dog, through that bond,
they get to know kind of what'syour normal, what's not your normal.
They get to know your smell,and as that bond gets as you guys
(18:11):
are, you know, spend moretime together, they really get to know
you. So he's really in tunewith me. He's really in tune with
my normal, and he's really intoI find not normal, and he's really
into with my smell. So hecan will go get my mom before his
seizure and bring my mom to mein the middle of the night, usually
early in the morning, when mysiege activity is increased. He knows,
(18:33):
but he does more than that.And my first service dog did as well.
They also and this isn't something youreally think. With the service dog,
they take the attention away from epilepsy. So in high school I was
kind of questionable. You know,a dog a vest a vest that says
epilepsy. You know, it's it'sgonna make it right there now and taking
(18:56):
an invisible disease, I'm making itvisible, but you become invisible, actually
become even more invisible. It's forgetyou, who's this cute dog? And
it makes epilepsy approachable. You know, you have the opposite effect of what
you were afraid of. Yes,So if you have like questions about epilepsy,
(19:19):
you can there's a cute dog therewith a vest that says epilepsy,
that's approachable. I can I knowa cute dog when I see it.
I mean, I'll ask questions witha cute dog there. But if you
see a person having a big,scary seizure, that's not approachable. We
don't see seizures every day. Wesee wheelchairs every day, we see crutches
(19:41):
every day, we see you know, we do see disabilities every day.
But and so and that gets ascomfortable or as comfortable as we can be
with somebody who is different or hasa disability. There can be someone com
fullness there. You know, howdo you approach someone? How do you
(20:03):
think they want to be approached?But you don't see caeizures every day,
right, you don't get comfortable withthem with them. Channing people learn when
when you don't have any idea whatwe're doing here with seizures and rob you
jump in here too. They alwayssay, don't let them swallow their tongue.
(20:25):
Yes, that's the first line onthe Epilepsy Foundation myths thing that says
you can't swallow your tongue during aseizure. It's physically impossible. It is
physically impossible to swallow your tongue.How many seizures do you have a day?
You said you have them every day. Yeah, So there's different types
(20:45):
of epilepsy, and there's different typesof seizures. I have refractory epilepsy,
Sandy, So my sizars don't respondto medication, and that's called refer fact,
what is it? Refractory epilepsy.The majority of people of epilepsy,
about seventy five they get diagnosed withepilepsy, they try one, maybe two
(21:10):
drugs, and on one of thosedrugs, they'll respond to that, to
that targeted medication. But for thosetwenty five percent of us who we try
drug after drug after drug after drug, cocktail after cocktail after cocktail, and
we don't respond, we have refractoryepilepsy. And I am so sorry,
(21:33):
I just lost my train of thought. That's okay, oh my seizures,
that's right, Okay. What theamount of seizures I have a day?
On average? I have I'm gonnasay tens seizures a day, and those
are the small sears. I talkabout those twitches, those space outs,
maybe those I lose my voice,those smaller ones. But I define a
(21:59):
good day as I get to thefarm, I get to see my horse.
A great day is I get toride my horse. But then there's
those bad days, those bad dayswhere seizure activity is increased, that I
have the headache from how I amstuck on the bed or on the couch,
(22:19):
and that headache can take me outfor multiple days. They haven't found
anything to sort of leave that headache. It's really just it literally is debilitating.
And also on the bad days,you know, I can have maybe
larger seizures where I crash in theshower, or I've had a night seizure
(22:44):
where I this partially dislocated his shouldereven in just lying in bed. So
you can have a riding usson inthe morning, and you can have then
come home and have a ton ofklinics you at night. It's it's really
that black and white and gray.Quite frankly, rob Let's jump in here.
(23:15):
You've dealt with this your whole life, This beautiful daughter of yours who's
smart and intelligent and wanted to bea doctor. What is it like for
you to watch her go through this. Yeah, so you know, I
was thinking about when Channing mentioned fallingin the shower, for example. But
Channing lives upstairs and her mom andI live downstairs. And one of the
(23:38):
things that's resulted from this is Ihave become an expert in thuds. I
can tell you every different kind ofthud that exists because I've learned to identify
a fall in the shower from thedog jumping off the bed onto the floor.
I've become a thought expert. It'ssomething that I don't And let me
guess that entailed running up the stairsevery time you heard a thud and then
(24:03):
identifying the source of the thud andrealizing it was a serious problem or not.
Is that correct? You're exactly right. You're good at jumping stairs.
How many stairs do you jump ata time? If it's a thud that
I'm worried about, boy, I'lljump three or four. I'm like an
Olympian stair jumper at that point.Yeah. We're kind of joking around about
(24:26):
it because Rob is such a funguy. But this is such a this
is such a you know, adifferent thing for so many people to even
consider, you know, what wouldit be like to have to deal with
this situation. Go ahead, Rob, continue if I had to say what
the most frustrating part of it,though, is, is that my inability
to help at all. There's nothingthat I can do except trying to provide
(24:49):
changing that the best quality of lifepossible. With other disabilities, there's there's
ways to help. In fact,I work in an organization called May We
Help that helps people with disabilities,and I get great satisfaction that'd be and
help our helping our clients every day. But for somebody with the refractory epilepsy,
there's really little that I can do, and that is so maddening.
As a parent. I can't evenbegin to tell you. To watch Channing,
(25:11):
like she mentioned those headaches, thoseheadaches that follow a seizure will sometimes
go on for days, and they'redebilitating. They're far more debilitating than the
seizure itself. And to watch andknow that there's nothing I can do,
so it's maybe rub Channing's head fora little bit of relief, which barely
does anything. I'm just maddening andfrustrating that I just feel helpless in this
(25:32):
particular instance. One of the questionsthat you said, people may be able
to ask you about when they seeyour your dog is about epilepsy? Do
people ask you if epilepsy is contagious? Yes, the uh, we're in
middle school. Actually, so whenI was for when I got my diagnosis
(25:56):
of jamna my aquinicles, I foundout I was going to have it the
rest of my life, a classmateof mine asked, was are you contagious?
Right? It really took me bysurprise, right right. Well,
it's the same with cancer. Evenadults who aren't well versed in medical conditions
(26:18):
and some of them fear that canceris contagious. You know, it's not.
Epilepsy is not contagious. And withepilepsy, you know, unfortunately we
don't know much about it and becauseof the myths and the fear that the
public that doesn't know much about it. So we always say that knowledge is
power. It's the more you know, the more you can try to educate
(26:41):
others, try to break down thatstigma so it's it's not misinterpreted anymore.
Because that that stigma, it doeskind of make it difficult to for their
advanced research with that fear there,with it not being talked about with yeah,
yeah, Channing, what resources areavailable in the tri State for people
(27:04):
who want to know more about epilepsyor they just want to learn more about
it. Yeah, So the twomain resources that I would suggest are the
Eplepsy Foundation for just general kind ofknowledge. There's local chapters throughout the nation.
And then there's also the organization CureEpilepsy and Qure Epilepsy has one mission
(27:25):
and they are laser focused on findinga cure for epilepsy. So let's end
this on a happy note. What'sin your life right now and what do
you want to do in the nextfew years? What are your what do
you got your eyes set on rightnow? I have a goal of funding
a one hundred thousand dollars research grantfor Cure Epilepsy to help try and find
(27:48):
a cure. And with this stigma, we are actually going to be lighting
up the University of Cincinnati Gardner neuroScience Institute for the month of November.
It's going to be like purple thingsto sumb out rentals. They were generous
enough to donate an eighty foot articulatingboomlif CND to change the lights on the
(28:14):
UCG and I purple and it willbe lit up for a month to hopefully
shine a light on epilepsy. Whatkind of fundraising are you thinking about doing
that? One hundred thousand dollars hasa lot of money, it is,
so we are currently we've raised thirtythousand dollars toward that goal so far,
and we have an annual fundraiser everyNovember to a t part fundraiser. The
(28:37):
first part of it is is alocal horse show. The second part of
the fundraiser is a the Purple Raffleand the Purple because purple is the color
of epilepsy. And this year wehave ten thousand dollars in prizes to give
away. You can see all theprizes at the Purple Raffle dot com.
And this year's theme is the annimalsthat not just make our days, but
(29:03):
change our lives because they have changedmy life in more ways than one.
We are celebritying dogs and horses andwe did throw in a cat basket there
and there's also some prizes just foryou. It's a lot. We're looking
forward to a big November. It'sa lot. That's great, Rob.
What are your thoughts at this moment? As I was listening to Channing talk
(29:26):
just how proud of her. Iam. I mean to your point,
one hundred thousand dollars is a lotto raise, and it's still amazing to
me that she's already raised thirty thousanddollars. It's a lot of money,
and to light such a prominent buildingsresource, and you know in this community
is a big deal too. Soshe's really just changing lives. Rob and
Channing Sideman, thank you both somuch for being my special guest here during
(29:51):
Epilepsy Awareness Month. Thanks so much, Sandy. If you'd like more information,
you can contact the Cure Epilepsy websitefor more information about Channing's fundraiser.
And remember you can listen to thisshow on the iHeartRadio app. Just look
under podcasts and search for iHeart Sinseywith Sandy Collins. Thanks for tuning in.
(30:12):
We'll see you next week. iHeartCincy is a production of iHeartMedia, Cincinnati,
This week on iHeart since November isephilepsy Awareness Month, and I have two
very special guests today to explain whatit is and how they manage. You
may remember Rob Sideman. He's beenon the show before representing May We Help,
a nonprofit that creates, builds,and delivers for free accessibility products that
(00:27):
are not available commercially right here inthe Tri State. Today we are meeting
Rob's adult daughter, Channing Sidemen.Like any kid, you grew up with
big dreams of what you wanted tobe. And I wanted to be a
doctor and compete in the Olympics andhorseback riding. Channing's big dreams. But
living with epilepsy change things. Andshe's invited us into her world today to
(00:49):
allow us to observe how this devastatingcondition affects her daily life. Her dad
Rob, She enrolled in two yearof junior college and have a seizure there
and was asked to consider leaving.She was told literally and I quote,
that Caesars would becoming too disruptive forthe classroom. Epilepsy changes everything, and
today you'll hear channing story and hearhow she's making a difference with her personal
(01:15):
goal to fund an epilepsy research grant. Now on iHeart Cincy with Sandy Collins.
Welcome to this public affairs show.iHeart Cincy on this iHeartRadio station.
I'm Sandy Collins because we love Cincy. It's people, it's history, it's
sports and entertainment, dining, andso much more. Today my guest is
one of those great people. ChanningSideman and her dad will chime in a
(01:38):
bit here. Rob. We spokelate last month in preparation for November's Epilepsy
Month observance. Now, roughly fourhundred and seventy thousand children are living with
epilepsy in the US, and overall, nearly three and a half million people
have the neurological disorder that affects allages, races, and genders. Thanks
for being on the show. Yourdad told me about Oh absolutely, your
(02:02):
dad told me about National Epilepsy Monthand how epilepsy affects your family, and
said that he is so amazed athow you're handling your situation, and so
he said, I really should talkto you. So I listened to everything
he says and do everything he says. So let's talk about epilepsy. I
(02:25):
need to know a little bit aboutyou, how old you are, you
know, kind of what you do, where you went to school. Just
a quick update, and then tellme about epilepsy. Yeah, so I'm
thirty and I grew up and Iwas fortunate enough to grow up in Aspen,
Colorado, and where I I wentto school, and we moved out
(02:49):
here to Cincinnati in twenty eleven afterI graduated. And that is my bi
and us going off. It's anactually it's an implant. I have top
with my epilepsy, but that's thebiggest nerve stimulator. And what it does
is it's kind of like a pacemakerbut for the brain. Mm hm.
So sometimes I get a god fortheir father voice going, you'll have to
(03:10):
excuse me for that. No,that's okay. Do you need to take
a break. Should we take Shouldwe take a break until it stops?
Nope, it just stopped, Okay. But I moved out here for my
dad's job actually twenty eleven after graduating, and we've kind of uh and we've
(03:36):
found our place in Moford is wherewe ended up. But epilepsy. So
I was diagnosed with epilepsy after havingmultiple seizures when I was at the age
of ten and like like any kidyou you grew up with, you know,
big dreams of what you wanted tobe and I wanted to be a
doctor and compete in the Olympics andher speck riding. After my diagnosis with
(04:02):
epilepsy, I became patient, saidthe doctor, And it was a struggle
for me to stand the saddlem.But the one of the things with epilepsy
is that you don't hear about isthe stigma, and that's some of them
for epilepsy. One this month wekind of wanted to shine a light on
that stigma when you hear epilepsy.When I was like noosed, I had
(04:27):
never heard the word. Personally,I had heard the word seizure, but
I had never heard of epilepsy.And that's because it's not talked about.
It's this shrouded with myth, fear, uh, misunderstanding, misinformation. When
I think of seizure and I haveepilepsy, but I think when I think
(04:50):
anyone thinks of seizure, you thinkof that kind of big, scary person
that goes unconscious, starts shaking,maybe formed out the mouth, maybe turns
blue. That that big and scaryseizure. So if there was a myth
that I could just spell for upwebsite, it would be that there's more
(05:13):
than one type of seizure. Mmhmm, well we can get into that.
Let's get into that in just alittle bit. I want to take
a break here, and just couldI add a little bit about the schooling,
because you'd asked about schooling, sure, and so you know, elementary,
middle and high school. Everybody wasvery accommodating, very sensitive to Channing's
(05:34):
needs. Uh. Then she enrolledin Colorado Mountain College, a two year
junior college, and had a seizurethere, and uh was asked to consider
leaving SI to leave that she wastold literally and I quote, the seizures
would becoming too disruptive for the classroom. And she'd only had a total of
(05:59):
two seizures Colorado Mountain College in twoyears. So anyway, she was asked
to leave, and it was itwas horrible and terribly upsetting. And so
I just wanted to add that aboutthe schooling. Rob is that legal?
I mean, it's happened, butwas it legal to do that? They
didn't. They were careful in theirchoice of words. They said that Channing
(06:21):
should consider leaving because the seizures werebecoming too disruptive. They didn't actually ask
her to, but the message wassent and the damage was already done,
so it became a big thing.Newspapers wrote it up. Colorado Mountain College
did make some significant changes to theirhandbook, for example, and the way
(06:42):
teachers would deal with situations like this, and so forth. Steps were made,
but you know, progress was made, and our hope wasn't to sue
or anything like that. Our hopewas just simply that the next person that
went through this at CMC would Iwouldn't have to deal with what Channing did.
Must have been very difficult, Channing, what were all the same?
It What was interesting about that oneis that it was an EMT class that
(07:04):
I was taking. Oh my,so it was I was a perfect victim.
I was a great victim in thatclass. But I knew I knew
the instructor because he was actually anAMT that came to the most of the
local horse shows, and he hadworked on me because I did have a
seizure a horse show. The disabilitiescoordinator at the school her brother actually had
(07:28):
epilepsy. So before the class evenstarted, we had sat down with the
disabilities coordinator and the teacher. Youknow, we wanted to just get it
all out there, make sure itwasn't going to be a problem, but
we wanted to make make sure theyhad kind of information, anything and everything
to make them comfortable and set meback for success to get through the class.
(07:49):
And then once I had the seizurein class, they waited forty minutes
to call my parents. So itwas really an odd event to say,
yeah, well, let's talk alittle bit chanting about actually what is epilepsy.
It's a brain disorder that causes seizures. What do you know about it
from a layman's point of view?So definition literally is having had multiple seizures.
(08:16):
It's just electrical activity in your brainthat's doing something that you don't want
it to do. That's electrical activityin your brain. That's exactly it.
My brain sometimes just gets just getsstuck, It gets a little overactive,
and indeeds shut down and restart.And so the doctors don't really know how
this works. They don't know muchabout epilepsy. No, it's such a
(08:43):
debilitating disease. And I'm not tellingyou anything you don't know, but I
do know that a friend years ago. He was a pilot and he flew
commercial airlines, and once he'd hadhis second seizure, they took his pilot's
license. He couldn't drive anymore.He lost his career. And I'm sitting
(09:05):
there and we were doing an epilepsyinterview, and I looked at this,
you know, forty something year oldman who went from the top of the
world to not being able to doa whole lot, and I just thought,
how devastating this must be, andchanting, I. I don't mean
to dwell on that, but thisis a really big part of your condition.
(09:30):
How has it affected you in yourpath from college to now. I
still continued with education. We lookedfor virtual jobs that for me to help
kind of try and get into theworking the workplace, Thank you workplace.
(09:50):
I found an online school for medicaltranscription. And I always wanted to be
in the medical field. I wanted, like I said, I wanted to
be a doctor, and this wasa way for me to do to continue
that medical field, just in adifferent and a different aspect of it.
And I did really well, andI got to join a fantastic company called
(10:13):
the Ice Scribes. They were greatwith me. They helped me set up
for success, and I worked fromhome and I was with them for about
four years. I just wasn't readyfor the workplace quite yet, balancing work,
balancing my health and balancing and tryingto take care of me. And
(10:35):
it was it just what I wasn'tready for you yet. And that's okay,
absolutely, so I did continue withthe schooling. We tried biling coding
next. That was the next stabwe did. And what was that again?
Medical billing and coding? Okay,and Sandy, I just couldn't do
(10:58):
biddling coding for the life of me. Those cowards that ICD ten. That's
just a little above Well, atleast you know your limits. Yes,
I know my limits are above multiplicationand division. After that, it's too
much for me, yep ICD tenis a little too much for me.
(11:18):
So but personally, Sandy, ifI could choose any job, I would
probably be working out of farm scoopingproof out of stalls. That is what
I love to do. Oh well, let's get to that. At the
end of this, we'll give yourcontact information if anybody wants to hire you.
There you said earlier, there weredifferent types of seizures I saw one
(11:39):
seizure in my life at the mall, and it was scary. Yeah,
you don't know what to do.So what do you suggest people who observe
someone having a seizure do. Whenyou see a seizure, it's probably gonna
(12:00):
be a big and scary one likethe like the one you saw, And
those are the ones that we mostcommonly think of. Those are the generalized
tonic chlonic seizures where we go unconscious, we can vols. And what you
do is you're you're gonna time it. Anything over five minutes, you want
(12:24):
to call nine one one, Andyou're gonna want to move any objects out
of the way where they could hittheir head, roll them on their side
so they don't choke on anything,try to get any jewelry out of the
way. You can administer maybe you'rerescue medication if you have it on you,
(12:45):
for like for instance Ada Van,But honestly, Sandy, it's it's
there. There's not much you cando. But like I said, there
is more than one type of seizure, and sometimes it's even the small the
other seizures that can be more dangerous. For instance, those big scary ones
I have had probably around seventy ofthose now, But on a daily basis,
(13:13):
I have seizures that more resemble hiccups, or sometimes I'll space out and
I'll look like a daydream. Maybeit'll be just a twitch in the face,
Maybe it'll be a gasp. Maybeother seizures cause me to lose my
(13:33):
vision, maybe I'll lose my speech, maybe I won't be able to move.
Then there's seizures that are kind oflike a dead man fall drop seizures.
But for me, crossing the streetcan be more scary than riding a
horse, because if I'm crossing astreet and I space out, They're not
(13:54):
going to see me spaced out.They're gonna think I'm gonna keep going.
So in certain instances, those smallerseizures can be more scary than those big
seizures for the person having that seizure. Time for a quick break. My
guest is Channing Sideman and her dadRob Sideman. Channing is living with epilepsy,
and we're talking about Epilepsy Awareness Month. There's a lot more coming up.
(14:16):
You become invisible, actually you becomeeven more invisible. It's forget you,
who's this cute dog? And itmakes epilepsy approachable. That's coming up,
bun I heard since this is fiftyfive karc an iHeartRadio station. Sixty
years ago, the Beatles made musichistory, ladies and gentlemen, and in
(14:37):
twenty twenty three they've done it again. It's a new beatlesinger written by John
Lennon. M's called Now and Thatthe last Beatles song with John, Paul,
George and Ringo. We've all playedon it, so it is a
genuine Pezo ricorda who listened to Nowand Then and the entire Beatles catalog.
Search the Beatles on the free iHeartRadioapp and start listening now free never sound.
(15:01):
It's so good. Click this linknow to review my bank transfer.
I didn't make a bank transfer,augh another phishing message? Are you frustrated
by these two? So much ofour lives are online today. To make
sure my information is protected, Ichecked out Sissa's Secure our World resources.
They've got four simple ways we canstay safe online. First, learn to
(15:26):
recognize and report phishing. Next,create a strong, unique password for each
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(15:52):
scammers and you can learn too.Go to Sissa at CISA dot gov forward
slash secure our world from more quickeasy tips to be safer online. This
is iHeart Cincy. I'm Sandy Collinswith my special guest today, Channing Sideman,
who's been living with epilepsy for twentyyears, along with your dad,
Rob Sidaman. They were here duringEpilepsy Awareness Month. Your dad says,
(16:17):
you have a rescue dog. I'mnot a rescue dog, a service dog.
Your dad's dog who rescued you.Yeah, you have a service dog
and that that helps you. Yeah. I have a Caesar Alert dog named
Bishop, and he is my secondservice dog. And he is right here.
Actually, Oh, he's a goldencolor he na what is it?
(16:41):
No, he's golden with about twentyfive percent poodle, but we still call
him just golden. Oh. Andhe's just got straight, beautiful hair.
And he's huge. What is heabout sixty seventy eighty pounds. We're pushing
all over one hundred they're sandy.Wow. Well I can only see his
head and it looks like a likean eighty pound head, So wow,
how long have you had the dog? So Bishop and I have been together
(17:03):
for three years, and he isdifferent than my first service dog. So
my first service dog was a Caesarresponse dog, and the Caesar responds dog
can help with more of the afterpart of the seizures. She would go
get my medication for me, shecould go get help for me, she
could go get the phone. Shewas the wet nose that I would wake
up to. And Bishop is alsothe wetness that I wake up to.
Don't get me wrong, but he'sa sizear alert dog. So he helps
(17:26):
me with the before the seizure.And so he has an incredible nose,
Sandy his nose nose, and he'sdone scent training. And with that scent
training, they've kind of recognized thatseizers give up an aura, and so
(17:48):
they take armpit swabs or saliva swabsand they give that to the dog with
the sweat after a person has aseizure to help that scent training. And
once you're per with that dog withyour service dog, through that bond,
they get to know kind of what'syour normal, what's not your normal.
They get to know your smell,and as that bond gets as you guys
(18:11):
are, you know, spend moretime together, they really get to know
you. So he's really in tunewith me. He's really in tune with
my normal, and he's really intoI find not normal, and he's really
into with my smell. So hecan will go get my mom before his
seizure and bring my mom to mein the middle of the night, usually
early in the morning, when mysiege activity is increased. He knows,
(18:33):
but he does more than that.And my first service dog did as well.
They also and this isn't something youreally think. With the service dog,
they take the attention away from epilepsy. So in high school I was
kind of questionable. You know,a dog a vest a vest that says
epilepsy. You know, it's it'sgonna make it right there now and taking
(18:56):
an invisible disease, I'm making itvisible, but you become invisible, actually
become even more invisible. It's forgetyou, who's this cute dog? And
it makes epilepsy approachable. You know, you have the opposite effect of what
you were afraid of. Yes,So if you have like questions about epilepsy,
(19:19):
you can there's a cute dog therewith a vest that says epilepsy,
that's approachable. I can I knowa cute dog when I see it.
I mean, I'll ask questions witha cute dog there. But if you
see a person having a big,scary seizure, that's not approachable. We
don't see seizures every day. Wesee wheelchairs every day, we see crutches
(19:41):
every day, we see you know, we do see disabilities every day.
But and so and that gets ascomfortable or as comfortable as we can be
with somebody who is different or hasa disability. There can be someone com
fullness there. You know, howdo you approach someone? How do you
(20:03):
think they want to be approached?But you don't see caeizures every day,
right, you don't get comfortable withthem with them. Channing people learn when
when you don't have any idea whatwe're doing here with seizures and rob you
jump in here too. They alwayssay, don't let them swallow their tongue.
(20:25):
Yes, that's the first line onthe Epilepsy Foundation myths thing that says
you can't swallow your tongue during aseizure. It's physically impossible. It is
physically impossible to swallow your tongue.How many seizures do you have a day?
You said you have them every day. Yeah, So there's different types
(20:45):
of epilepsy, and there's different typesof seizures. I have refractory epilepsy,
Sandy, So my sizars don't respondto medication, and that's called refer fact,
what is it? Refractory epilepsy.The majority of people of epilepsy,
about seventy five they get diagnosed withepilepsy, they try one, maybe two
(21:10):
drugs, and on one of thosedrugs, they'll respond to that, to
that targeted medication. But for thosetwenty five percent of us who we try
drug after drug after drug after drug, cocktail after cocktail after cocktail, and
we don't respond, we have refractoryepilepsy. And I am so sorry,
(21:33):
I just lost my train of thought. That's okay, oh my seizures,
that's right, Okay. What theamount of seizures I have a day?
On average? I have I'm gonnasay tens seizures a day, and those
are the small sears. I talkabout those twitches, those space outs,
maybe those I lose my voice,those smaller ones. But I define a
(21:59):
good day as I get to thefarm, I get to see my horse.
A great day is I get toride my horse. But then there's
those bad days, those bad dayswhere seizure activity is increased, that I
have the headache from how I amstuck on the bed or on the couch,
(22:19):
and that headache can take me outfor multiple days. They haven't found
anything to sort of leave that headache. It's really just it literally is debilitating.
And also on the bad days,you know, I can have maybe
larger seizures where I crash in theshower, or I've had a night seizure
(22:44):
where I this partially dislocated his shouldereven in just lying in bed. So
you can have a riding usson inthe morning, and you can have then
come home and have a ton ofklinics you at night. It's it's really
that black and white and gray.Quite frankly, rob Let's jump in here.
(23:15):
You've dealt with this your whole life, This beautiful daughter of yours who's
smart and intelligent and wanted to bea doctor. What is it like for
you to watch her go through this. Yeah, so you know, I
was thinking about when Channing mentioned fallingin the shower, for example. But
Channing lives upstairs and her mom andI live downstairs. And one of the
(23:38):
things that's resulted from this is Ihave become an expert in thuds. I
can tell you every different kind ofthud that exists because I've learned to identify
a fall in the shower from thedog jumping off the bed onto the floor.
I've become a thought expert. It'ssomething that I don't And let me
guess that entailed running up the stairsevery time you heard a thud and then
(24:03):
identifying the source of the thud andrealizing it was a serious problem or not.
Is that correct? You're exactly right. You're good at jumping stairs.
How many stairs do you jump ata time? If it's a thud that
I'm worried about, boy, I'lljump three or four. I'm like an
Olympian stair jumper at that point.Yeah. We're kind of joking around about
(24:26):
it because Rob is such a funguy. But this is such a this
is such a you know, adifferent thing for so many people to even
consider, you know, what wouldit be like to have to deal with
this situation. Go ahead, Rob, continue if I had to say what
the most frustrating part of it,though, is, is that my inability
to help at all. There's nothingthat I can do except trying to provide
(24:49):
changing that the best quality of lifepossible. With other disabilities, there's there's
ways to help. In fact,I work in an organization called May We
Help that helps people with disabilities,and I get great satisfaction that'd be and
help our helping our clients every day. But for somebody with the refractory epilepsy,
there's really little that I can do, and that is so maddening.
As a parent. I can't evenbegin to tell you. To watch Channing,
(25:11):
like she mentioned those headaches, thoseheadaches that follow a seizure will sometimes
go on for days, and they'redebilitating. They're far more debilitating than the
seizure itself. And to watch andknow that there's nothing I can do,
so it's maybe rub Channing's head fora little bit of relief, which barely
does anything. I'm just maddening andfrustrating that I just feel helpless in this
(25:32):
particular instance. One of the questionsthat you said, people may be able
to ask you about when they seeyour your dog is about epilepsy? Do
people ask you if epilepsy is contagious? Yes, the uh, we're in
middle school. Actually, so whenI was for when I got my diagnosis
(25:56):
of jamna my aquinicles, I foundout I was going to have it the
rest of my life, a classmateof mine asked, was are you contagious?
Right? It really took me bysurprise, right right. Well,
it's the same with cancer. Evenadults who aren't well versed in medical conditions
(26:18):
and some of them fear that canceris contagious. You know, it's not.
Epilepsy is not contagious. And withepilepsy, you know, unfortunately we
don't know much about it and becauseof the myths and the fear that the
public that doesn't know much about it. So we always say that knowledge is
power. It's the more you know, the more you can try to educate
(26:41):
others, try to break down thatstigma so it's it's not misinterpreted anymore.
Because that that stigma, it doeskind of make it difficult to for their
advanced research with that fear there,with it not being talked about with yeah,
yeah, Channing, what resources areavailable in the tri State for people
(27:04):
who want to know more about epilepsyor they just want to learn more about
it. Yeah, So the twomain resources that I would suggest are the
Eplepsy Foundation for just general kind ofknowledge. There's local chapters throughout the nation.
And then there's also the organization CureEpilepsy and Qure Epilepsy has one mission
(27:25):
and they are laser focused on findinga cure for epilepsy. So let's end
this on a happy note. What'sin your life right now and what do
you want to do in the nextfew years? What are your what do
you got your eyes set on rightnow? I have a goal of funding
a one hundred thousand dollars research grantfor Cure Epilepsy to help try and find
(27:48):
a cure. And with this stigma, we are actually going to be lighting
up the University of Cincinnati Gardner neuroScience Institute for the month of November.
It's going to be like purple thingsto sumb out rentals. They were generous
enough to donate an eighty foot articulatingboomlif CND to change the lights on the
(28:14):
UCG and I purple and it willbe lit up for a month to hopefully
shine a light on epilepsy. Whatkind of fundraising are you thinking about doing
that? One hundred thousand dollars hasa lot of money, it is,
so we are currently we've raised thirtythousand dollars toward that goal so far,
and we have an annual fundraiser everyNovember to a t part fundraiser. The
(28:37):
first part of it is is alocal horse show. The second part of
the fundraiser is a the Purple Raffleand the Purple because purple is the color
of epilepsy. And this year wehave ten thousand dollars in prizes to give
away. You can see all theprizes at the Purple Raffle dot com.
And this year's theme is the annimalsthat not just make our days, but
(29:03):
change our lives because they have changedmy life in more ways than one.
We are celebritying dogs and horses andwe did throw in a cat basket there
and there's also some prizes just foryou. It's a lot. We're looking
forward to a big November. It'sa lot. That's great, Rob.
What are your thoughts at this moment? As I was listening to Channing talk
(29:26):
just how proud of her. Iam. I mean to your point,
one hundred thousand dollars is a lotto raise, and it's still amazing to
me that she's already raised thirty thousanddollars. It's a lot of money,
and to light such a prominent buildingsresource, and you know in this community
is a big deal too. Soshe's really just changing lives. Rob and
Channing Sideman, thank you both somuch for being my special guest here during
(29:51):
Epilepsy Awareness Month. Thanks so much, Sandy. If you'd like more information,
you can contact the Cure Epilepsy websitefor more information about Channing's fundraiser.
And remember you can listen to thisshow on the iHeartRadio app. Just look
under podcasts and search for iHeart Sinseywith Sandy Collins. Thanks for tuning in.
(30:12):
We'll see you next week. iHeartCincy is a production of iHeartMedia, Cincinnati,
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