Hey, humans. How's it going? Susan Ruth here.
Thanks for listening to another episode
of Hey, Human podcast.
This is episode 435,
and my guest is Alex Brito,
diagnosed with something called
neuromyelitis
optica spectrum disorder,
otherwise known as NMOSD.
It's a rare condition.
It attacks the central nervous system
known for giving severe, unpredictable
vision loss, chronic pain, paralysis,
any number of things
for anybody that knows anything about
autoimmune disorders, like rheumatoid arthritis or MS, or
it could attack a body
in a myriad of ways depending on the
person. She had a misdiagnosis,
vision loss, temporary paralysis.
Alex remains
a incredibly strong
powerhouse of a human. She's passionately committed
to helping those with disabilities.
She teaches adaptive
technology
to people with vision loss, and
she maintains an active lifestyle. She's a power
lifter, which is badass, and she's the 1st
blind woman to earn a yellow belt in
Krav Maga. I really enjoyed talking with Alex.
I'm excited for you to hear this episode.
Check out heyhumanpodcast.com
for links and to learn more about my
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Be well,
be kind,
be loved,
and here we go.
Alex Brito, welcome to Hey Human.
Thank you. Thank you for having me. Glad
to be here.
Absolutely. Welcome. Welcome. Let's jump right in.
Tell me where you're from and what shaped
you as you were growing up. Oh, I'm
from California, the Central Coast,
San Luis Obispo County in a little town,
called Oceano.
I've lived here pretty much all my life.
I did move away for 1 year in
Missouri.
That must have been culture shock. Yeah. Definitely.
Definitely.
Especially as a teenager, we moved right when
I was a teen. And,
I I enjoyed it, but definitely different.
And we came back because my niece was
born, so first grandbaby in the in the
family.
Mom wanted to be back, which was okay.
I have 2 brothers and one sister,
and we've just grown up close all our
all our lives. I have my mom and
dad
still in the picture with me. They've raised
us, you know, to be just
education,
sports.
So our sports
of choice,
was baseball and softball. Did you play in
high school?
No. I didn't get to,
because by that point, I was, you know,
dealing with
the effects of
NMO.
So but I did do color guard. I
was the 1st legally blind
student to do color guard
for the high school, which is really cool.
That is really cool. Did your vision go
all the way right away, or was it
a slow progression?
It was a slow progression. So it started
when I was 12. My journey with
my vision loss and NMO
actually started at 12,
back in 97.
And it I just lost it gradually
by
2,003.
How does one come to terms with something
like that at the very beginning? And I
understand you were misdiagnosed at first.
Yeah.
So it started when I was 12,
and, you know, that's when
NMO wasn't a thing.
It was, I believe, being researched at the
time, but not an actual
disease that's been declared,
that I know of. You know what? 12,
that was hard. That was that was hard
to wake up one day
with, no vision in one eye
and just
not know what's going on.
They initially thought it was a virus
where I was treated with some, you know,
medications to hopefully help bring the vision back,
which
didn't do anything.
And then again a few months later,
I had another attack on my body,
which
were different symptoms,
meaning,
you know,
it it affected
this time, it was pain in my neck,
and I felt sunburned and tremors.
And that's where I
finally got, I guess, what we thought was
the answer to my problems because I did
a, you know, scan, and and it showed
some scarring in my spinal cord
and optic nerves,
and that's where I was diagnosed with, multiple
sclerosis.
I really didn't understand what it was,
but
I knew it was something serious because I
knew my mom
just how she reacted, you know, crying.
But we just went ahead and did whatever
treatment plans we needed at that time for
me to hopefully get better,
which they didn't seem to help,
because I did have an attack,
which, you know,
on my body every 3 months.
So it was something different every time. It
was, you know, more vision loss or paralysis.
And by the time 2,003 came around, I
was completely blind
and, paraplegic.
When you are one of 4 children
in a household that's especially close as you
say yours was,
how
I mean, I can't even
begin to imagine
that for a young child anyway.
But then the focus of the household
has to turn to you
for all importance because
of the extra support you would need and
both physically and mentally.
What did everybody come together? Did it cause
issues in the family unit?
So that's that's,
you know, really good question. It
it was a lot. It was a lot
to take on as far as being, you
know, this teenager,
wondering why me.
And
then
me feeling, you know, that jealousy,
I guess that's the worst I could say
now of
they get to do everything still. And
I'm limited, but I'm I'm still trying to
do as much as I can
because they never put pity on me. They
never showed pity on me. I could say
that. And my siblings helped,
and they never were like, well, that's not
fair. I can't.
Why do I have to? They never never
did that.
I'd always felt bad.
I guess, at the point when I was
paralyzed. I think that's where it really affected
me the most,
because, you know, they had to help me
change
my depends
or
empty out my commode.
And
they really had to grow up fast.
And
sorry. I didn't realize that was gonna affect
me. It's a big deal. Yeah. But I'm
just so thankful
that I had and still have the love
and support from them. They don't,
you know,
ever make me feel any different.
They're just like, okay.
You know? Well, what do you need, sis?
Or and they'll, you know, especially my sister.
My sister and I are very, very close.
If I,
you know, get tired, she's like, well, I
told you. You know, you should've ordered this.
Or
you know? But she's always looking out, and
I'm just really thankful that they, again, really
never treated me different and encouraged me
to grow up
as regular as I could be, and my
parents too.
They never
cried in front of me
to show that they were hurting. No one
ever did. Did they allow for you to
have all your feelings, all your the big
feelings that would come with this? Or did
they say suck it up, you know?
They did, but they did that too, but
in in in an encouraging way.
Because,
I and I believe,
and I know it's because they didn't want
me to fall in that
that Yeah. My life is over. Because I
remember when I was 13 going to
a support group for
MS.
And the ladies, you know, it was a
women's group. They were all in their fifties,
older,
but it was it was that, why me?
This is my poor my poor life. And
it it really
traumatized me. So my mom's like, we're not
going back.
You know? Because
that's not what she wanted for me in
in a bad way, but it was, like,
that's
what she didn't want me to think life
was gonna be like.
Right.
And so,
it was just, you know,
never give up. We just gotta keep moving
and
do what we have to and hopefully get
things get better.
When the right diagnosis finally was given to
you, that must have been one heck of
a relief on one point. I mean, that's
a weird thing to say about any kind
of rare disease. But
is this a a mutation on a gene?
Is this just by chance that
one day you're walking along and some virus
hits and then your body reacts to it?
Can you explain a little bit about it?
So NMO, neuromyelitis
optica spectrum just disorders, NMOSD.
I always forget to put that SD in
there. You know, it's a disease
attacking my immune system,
and it affects the optic nerves and spinal
cord. And that's the simplest way I can
describe it. You know? And it can affect
everyone differently. Not everyone gets
the same attacks on their body.
And some people may just have one relapse,
and some people,
it can just continue affecting them.
And that's why there's so many treatments on
there out there that in hopes that,
you know, one treatment may not work for
me, it may work for someone else in
slowing down the progression of the disease.
That makes it quite complicated, I suppose, the
the fact that it does manifest in so
many different ways because how do
you how do you treat something
unilaterally
that
doesn't have a favorite pathway?
Right. Right. Yeah.
What do you feel about the word disability?
I know that some people
really don't like that. They say differently abled.
Some people are fine with disability. What does
that word what does it feel like to
you?
I guess I'm fine with it. I've never
been asked, you know, it's it's
a disability. It's
it's just a word, I guess you'd say.
I don't I've never
thought of it any
differently.
Yeah.
And you're completely blind?
Yes. I'm completely blind.
And so, when I was re diagnosed,
I mentioned I was
completely
blind and paraplegic,
and that's when I was put in a
new treatment plan. And
that new treatment actually had me walking within
the year.
Wow.
Yeah. So I'm walking, and I did have
a little flare up
in 2020,
which affected my legs again.
But I'm still walking still walking. I did,
you know, some more treatments, and
I do have a little bit of a
side effect, my little drag on my leg,
but I'm still moving around,
which I'm thankful.
And my mom keeps telling me this. She
goes, I always think it's weird,
well, not
think it weird, but to see the doctor's
reactions when I would be asked, if you
could get one thing back, your vision or
your legs,
what would you want?
My legs.
And she she says they already saw that
reaction like,
You know, because I'm thankful. I'm very thankful
that I've been able to see
up until I was 18.
I am very thankful for that so that
I know what colors are. I know what
my family
looks like.
But walking, that was a hard one. That
was to have that taken from being able
to move and play sports.
And just to have that autonomy, probably, of
being able to move around.
Yeah.
Sure. So
I read an article
a while back now,
neuroscientists
that had worked on
a
receptor
that
I believe it was brain implanted and then
the receptor came out and sat on the
tongue.
And
it
acts in a way
sort of the way the optic nerve would
act and that it allows for images to
be,
received by the brain for what is the
surroundings are. It's really fascinating.
Have you read about Yeah. I have. You
you probably read braille. Yes?
Slowly.
Before I was reading pretty fast, and then
I lost some sensation there. But, yeah, I
can read it very slow. I actually use
screen reading programs. Oh, great. Mhmm. So, yeah.
Sure. That makes sense. Yeah. So, but, yeah,
I did read that. And it was very
interesting. There was also, I think, an implant,
like, a camera
that would
come out, like, the side of your head
or something. And there's just it's amazing on
what they're trying to do. And within your
lifetime, within my lifetime, there may be even
though you say as long as you can
walk, you're fine, but there, you know, there
may be advances such that
you will be able to see again.
Yeah. Yeah.
Does that feel like false hope, or is
that something you look forward to? I look
forward to it, and it's one of those
things I've always said. It's,
you know, my miracle was to come to
get my vision, but someone else needed it,
that miracle first.
By all means,
I'll go back to the end of the
line. Because I'm I'm I'm content, and I
know
some people may think that's
kinda weird to hear, but
I am. I'm very content with my life.
I don't get me wrong. There are moments
where it's like, oh, I wish I could
just open up a book and read
the page you know, see and read the
pages or
really know what my
family looks like now because I just get
my AI generated
screen,
picture describers now that tell me what pictures
look like.
Well, I am
sort of tan and flushed cheeks. I have
black hair with fringy bangs, and I'm wearing
a gray sweatshirt and a pink t shirt.
And I have big kinda big teeth.
Thank you for the description. I really appreciate
that. And I love that more people are
doing that,
just that little description, because it just helps.
It's just that, okay, and you get a
general idea. Mhmm.
When you dream,
are your dreams quite vivid?
I see I can see in my dreams,
but I know in my dreams I'm blind.
Oh, that's an interesting twist. Yeah. It's so
weird because I know I'm I'm blind in
my dream, but I can see in my
dreams.
Do you have a deep faith? Do you
believe do you believe in God? Is spirituality
a part of your life? Or do you
do you have those kind of conversations? Were
you ever mad if you do believe in
God? Were you ever mad at God?
No. I was never mad at God, and
I did grow up, you know,
but
I do believe in God, and I was
raised Catholic, and
I mean, I don't attend church, but I
do believe and I do pray.
I was just never mad. It was just
that why me kind of just always asked
that.
I just knew there was a a reason,
and I've heard that from people. There's a
reason why this happened to you. But,
I guess just my reason now, I believe,
is just to keep living my life and
showing people that
no matter,
you know, my situation, I'm just gonna keep
pushing forward.
Yes. Do you want children someday? And if
so, is this a genetic component that concerns
you?
Oh, you're gonna be crying again.
So I've been trying. I've always wanted children,
but my husband and I have had no
luck.
And,
we don't know.
I I don't know if it's animal related
or
just fertility issues in both of us. You
know, unfortunately, we can't afford,
those type of treatments, but Sure. I would
have loved to. I'm gonna be turning 40
this year.
Still young.
Yeah. And so I know it's one of
those,
and then my clock is ticking, but,
I would love to have children.
And my sister did, offer herself
just to be our surrogate when we're ready.
So
we're ready, but it's just one of those
looking.
Yeah. Now how to make it happen. Yeah.
Absolutely. How'd you meet your husband?
Actually, we met on
a a party line. So,
I don't know if you ever heard those,
like like, a dating map, but you
just call in a number and
talk to people.
And, yeah, I know it was just one
of those. I was getting ready to go
take some exams.
I was in community college by then, and
he happened to be on there.
And we connected, sent a couple of messages,
and
been together 16 years. Oh, wow. What's the
secret?
Well, we took actually a whole year to
meet. We only lived about 20 minutes apart,
but we talked every day,
and it's really been a journey. There's been
moments where
it's not perfect, and it's still a work
in progress
till That's every relationship. Yeah. Yeah.
I'd be concerned if anyone ever said their
relationship was perfect, that I know. They weren't
actually living in a real relationship.
So but it's just he's been great. He's,
you know, he's when I told him I
was blind, he's, like, okay.
And he knows all my issues
that I have, you know, whether they're embarrassing
that I thought were embarrassing, but
he's always he's never made me feel
ashamed of,
you know, incontinence issues or feeling
that, you know, I'm hurting today. He's
he's been supportive in that way.
Yeah.
What's something that you wish people knew about
what it's like to be blind? And to
be in
a a place of disability,
even just in anything.
Being blind, it's
being blind. Let's see. Not
not so scary. It's not as bad as
it was when I first started. And I
say that because the the advancement in technology
is
amazing.
I actually teach the blind how to use
assistive technology.
So,
you know, screen readers and
being able to use, you know, an iPhone
with a screen reader and
be on social media, it's
it's so much more advanced today than it
was when I was
when I first started my vision loss journey
because there was really nothing. There was barely
the Internet. You know?
Yeah. I don't think the world is
very
receptive sometimes to people with disabilities, if not
a lot of times. And it's just not
a world set up to accommodate
people that are anything other than whatever the
quote norm is.
Even though we all are eventually
probably, if we live long enough, we'll face
a disability, it's it's something that seems to
be mostly ignored for the most part.
Yeah. That is true. There is still a
lot of work in progress, you know, like
you said, accommodating
for people with disabilities out there.
But just,
you know, if there's an issue,
bring it up, you know,
Talk to people
and just be mindful that
a person with a disability isn't
someone to be pitied on, but just someone
to
reach out to and and see if, you
know, what they can do to make things
better
is a big help.
A very, very big, big help. You know,
as simple as offering a menu
in braille or holding a door open for
someone that might be struggling a little if
they need it.
But don't
one thing is don't go up and grab
a person.
I've had someone try to grab my arm
before. Oh, let me let me take you
across the street.
And I appreciate that, but, you know, in
that moment, I'm counting my steps. I'm listening
to my surroundings
to know when to cross the street,
and that could be
a dangerous situation
as well.
Also, super
vulnerable place to have just somebody come and
grab at you even if they
have good intentions. Yeah. You don't know that.
You can't read someone's face or body language.
Yeah. And I've had some training in martial
arts, so I've had
that learning to, like,
know those when someone's grabbing you. Okay. Don't
react in in a
in a self defense mode. But Yeah. I
read that you do Krav Maga?
Yes. I I've done Krav Maga. I have
a yellow belt in Krav Maga.
Badass. Yeah. I love it. Oh, yeah. It's
it was in a is one of the
best experiences I've had,
just doing that and getting that certification
in 8 months of training.
I imagine you actually have, in some ways,
more of a leg up because you do
probably
have
extra skills in listening and sensing,
things that we, who can see, take for
granted
because we think that the one sense is
all we need, is that
do you find that
you end up teaching others about the other
senses more than they maybe
knew about for themselves?
Maybe they pick it up, but I'll always
explain, like, I I and it is true.
I do feel those different senses where if
someone's by me, it's a pressure I feel,
and then my reaction
is my hands are a lot faster. That
was something that was noticed during training was,
like, really fast
in reacting.
And just listening, I do.
That was something I did pick up.
And I was actually talking with my husband
the other night about
remembering growing up, and my mom would say,
yeah, you would say dad's home,
and he would, you know, roll up in
the car, like, 3 or 4 minutes later
because I could hear his car could hear
his car and they're like, oh, he's not
home, and then there he comes, you know,
3 minutes later.
Does that also work with
hearing people's voices and hearing what's actually
being said behind what's being said? Do you
find that you pick up on that more?
No. I've never paid attention to that actually.
Not to go pay attention to that.
Just because so many people say things, but
they're thinking other things. I just wondered if
there was maybe an inflection that you picked
up on. Yeah. You can pick that up,
but I've I've never thought of it as,
you know, maybe a blind thing or not,
because you can, you know, pick up on
tones.
I'm not blind, so I all I can
do is ask because it just seems like
it would hypersensitize
every other aspect of your being.
Mhmm. Because I know that when I'm in
a very, very dark room,
the first thing I do
in order to maneuver that dark room let's
say I have to get up to pee
or something in the middle of the night.
The first thing I do is show my
eyes. And as soon as I show my
eyes, I can navigate the room.
Uh-huh.
Do you get that,
I guess, that sense of direction,
you do that. I mean, I think it's
bad, and I think it just when your
eyes close, the rest of your senses
get more heightened.
Mhmm. It's a theory. I've been pretty it
just that's what it feels like to me.
Like, suddenly, as you said, you almost feel
what's around you without even touching it. You
sense it there
like a bat,
like echolocation
or something.
Yeah. And actually, I do that when I
read.
But my mom says I always have my
eyes closed since I say I keep them
closed so I don't get wrinkles.
But
but when I read, I actually do close
my eyes so I could picture it
in my head.
So you're deciding to go to school and
now help people.
Was that a no brainer? I've always gone
to school. I didn't finish,
I I only have, like, a few credits
for my community college.
I've always wanted to do massage therapy.
And there was a school here, and I'm
enrolled with Department of Rehab, and they help
people with disabilities get, you know, education or
or careers.
And they offered, you know, to pay for
my schooling, and
the local school I had here just
wouldn't
take me in. Nope. You know, you need
someone certified to help you in the class.
I did that.
Nope.
We can't do this. You know, whatever they
threw at me, I was able to yes.
I can I can do this? I can
do it the way you guys want,
but it was the vision thing they didn't
see past.
So that was discouraging, and
and when I had gotten just another evaluation
for some new technology,
the person who actually
did my evaluation,
Paul, he
he said,
hey. You know,
he got a new client. He goes, you
wanna teach him
how to use, it's called Jaws. It's a
screen reader that we put on our computers,
and it reads everything to us, allowing us
to navigate.
And I said, sure, just jokingly. He goes,
no, really. Do you would you like to
teach him? And I said, okay. And, you
know, started there, and then I enrolled in
a school for the blind that's in Arkansas
and did my training for a year
as an assistive technology instructor.
And so,
I just graduated
here in September.
Congrats. Certifications.
Thank you. And but it's just been so
gratifying. It's been really
so gratifying because it's I've worked with all
different ages,
and
just that
oh,
okay. I can I can check my email
now? I can go online and shop.
It's just been so fulfilling.
Fulfilling.
Yeah.
And it's just I guess this is what
I was meant to do. I love it.
It's it's a lot of work. I'm
on the computer all day
and then studying at night because I can
I'm continuing my education
with Cadis.
It's a certified assistive technology instructor specialist.
So it's a master's level program. And,
yeah, and so it's just a lot of
work, but
it it it is paying off.
Yeah. That's really lovely to give back also.
Absolutely. Do you have a service animal?
Yes. I have Pawnee. She's my 2nd guide
dog.
She's a black lab, and my first one
was Samantha.
Oh.
And so 2 different personalities. Miss Samantha walked
around sassy and classy. You know, we
strut our stuff on
the campus, and miss Pani, she's a she's
a little rocket,
just full of energy
and really, really fast.
I say really fast, but
I'm just so grateful for even, you
know, being able to get a service animal
Yeah. Have that sense of freedom.
When they when the animals come to you,
do
I know that they come trained, but then
you add your own kind of whatever you
need on top of that. Is that how
that works?
So we have to be, quote, unquote, cane
certified using our white canes,
and they come and evaluate us to make
sure we know how to navigate,
cross streets,
walk in different
terrains. Is that the word? You know?
And
making sure we can
keep up with the amount of care that
these dogs
have.
So then we're flown out to the school
or drive out drone
drive out to the school
and get 2 weeks of training. I went
to Guide Dogs For the Blind,
and it's 2 weeks of pretty much intense
training,
6 AM till about 10 o'clock,
working with your dog, you know, waking up,
feeding them, grooming them,
walking,
and, you know, taking some courses. They offer,
like, little lecture series and stuff like that,
but it's just a really
hands on experience with your
dog and showing that you can do it.
Do they assign the dog to you? Do
you go through a litter and say, that
one? Or
So they actually you do it. It's a
process. They interview you. They get to know
your personality.
You can put in a request of what
type of dog you want.
It can make you list you're waiting
a little longer.
But,
again, it's the personality. And then when you're
there on campus,
they
evaluate you with how fast you walk,
how fast you would like your dog to
go,
and
then they have a certain amount of dogs
that have
gone through certain phases of the training. So
I think phase 8 is the they're ready
to be assigned to a person. So Bonnie
was just one of those bunches, you know,
of dogs waiting to be assigned, and
my instructor
said, I know the the dog for you.
I think you can handle her because she's
a she's a little diva. She can be
rambunctious, and,
she likes to push,
see how far she can get. Do the
animals stay with you until they pass away?
How does that because I know that when
I lost my dog, Mikey, it was probably
the biggest pain I've ever felt in my
whole life. Do do the dogs go back
as elderly dogs to the places they come
from? How does that work?
So after a year, they're
yours.
Well, and I say that, you know, within
that 1st year, if you
mistrain
mistrain them,
They can pull the dog, you know, say,
you know, this isn't a safe environment for
the dog.
But after the year, you
can keep your dog
up until they're passing.
Some dogs, you know, might need a career
change,
and depending on your living situation,
you can return
the guide dog, and they they'll find a
dog you know, someone to adopt them.
But if not,
guide dogs for the blind,
they will
care for your dog up until
the last another the end of
July.
Yeah. That was that was really hard, putting
my Samantha down.
Yeah. My first dog. Yep. And I I
know the feeling you're going through. It's it's
a very painful feeling. It's really painful. Yeah.
It's
seems unfair that dogs live such a short
amount of time.
Mhmm. Yeah.
I'm glad you got a new love bug
though. It's good. Yes. She's she's so much
fun. It's just a big puppy, and
I'm just really thankful that,
you know,
they know work time, they know play time,
and no matter what, they love you.
They just get excited. The moment I cross
that street, and it's like, yes. And I
do I do get excited and do a
little cheer and good girl, and
they just know.
Oh, I love that so much. Yeah.
They don't have guide cats, do they? That's
not No.
They're working on guide ponies. I know there's
some guide miniature ponies.
Oh, wow.
I'd say what would
Harder to get into a cab with a
pony.
I think that yeah. I think ponies, I
think I haven't heard any other one. Oh,
there's a actually a robot guide dog they're
showing around right now.
Really?
Yeah. So that's interesting. I don't think I
would
want one, but there is
a guide
robot dogs.
I mean, I get the appeal of that,
I suppose, but it's just
it's not the same.
No.
No. They're gonna have malfunctions.
Yeah. That's true. Of the road. You're like,
ah.
Yeah. I mean, I suppose a dog can
malfunction too, but Yeah. It just doesn't feel
the same. I was thinking also earlier about
what you were talking about,
AI being able to say what you're reading
or what you're looking at and all that.
And
this is the only thing in my humble
opinion that AI should be used for because
as a I'm a creative and it terrifies
me to think that AI is coming for
the jobs when
AI is so well suited for helping in
so many ways.
And it just seems like people wanna take
it and have it,
you know, do all these other things.
Oh, yeah. No. I
I agree.
Like with Jaws,
or Fusion, the screen readers,
we use keystrokes to make the commands
happen on the keyboard.
And now,
Jaws just did this f
f s a I companion update
so people can ask it. You know, what's
the keystroke? I'm like, oh god. I'm out
of a job before.
Oh, yeah. Oh, well, that's a good point
too.
I got it.
Robots.
Yeah. Robots everywhere. What else?
I also pets it, and my the people
I pets it just got those little robots.
Because I go, you know, scoop the litters,
and I'm like, oh, god. Now the
the little robots are trying to take my
job. Oh, god.
I was like, oh, no. I imagine California
is really good about supporting
of all the states, California has gotta be
at the top for helping
provide
industry and stability for disabled pupils.
Yeah. The service has been really good here,
as far as now, you know, with Department
of Rehab getting services and and just different
centers popping up.
It it has been pretty good, you know,
and there's
when there's a will, there's a way in
trying to find out those resources.
Yeah. Absolutely.
Well, if people have any questions for you,
is there a good way to to reach
out?
I haven't created a website or anything yet,
but I'm hoping to,
would love to share the film. We were
couple patients and I were
involved in. Let's talk about that. Yeah.
So I did a film with Alexion.
It's called Rare Connections
in NMOSD.
And it's just a few of us patients
with NMO,
and, again, neuromyelitis
optica spectrum disorder,
and just sharing our journeys.
And so you can actually find that video
on YouTube
called Rare Connections
in NMOSD.
And it's,
a pretty powerful
short film,
and it's I'm just really thankful that I've
been able to do that. Are you touring
it out through festivals or anything?
Yeah. So it's been put in, a few
I know it was put in a festival
that just debuted
or showed last month.
And I believe they're just trying to
Alexion's trying to get it out in more
places.
It has been
recognized,
for me to
a pretty impactful video
to receive some awards, and
I'm surely glad to be able to have
a part of that and share my story
and
and spread awareness on that. Yeah. Absolutely. And
I'll put links to that on heyhumanpodcast.com's
links page also.
Thank you.
Yeah. And anytime you get awareness to something
that's specifically
so rare,
it hopefully will
create some funding.
Yeah. Just more research and funding and just
that, again,
that it may reach someone that may be
going through that journey
and didn't know.
Yeah.
Is it classified as an autoimmune disease then?
Yes. Yeah. Yes.
Mhmm.
Are you concerned
about this new presidency
and the the slashes to medic Medicare, Medicaid?
It's all the disability
programs
that they're talking about. It is. It's it's
very scary
to think, you know, what
is being threatened,
and I just hope it doesn't happen.
It just
hopefully, we can have a backup. I don't
I really don't know what the backup plan
is, but it's just it is very scary
to think because then that could affect my
treatment plans,
which I know I wouldn't be able to
afford.
Yeah. I know there are some financial services,
but,
you know, it's just so many things out
there that are resources that are gonna be
cut, and
no one's gonna be able to afford them.
So it's it's scary, and I just hope
for the best. That's all I could,
I mean, do
and just reach out to, you know, our
senators or just important people and let them
know that
we're human. We there's
lives are really being affected.
Absolutely.
Alex, thank you.
Thank you. Thank you for having me. I
really appreciate it. Absolutely.
I appreciate your time as well. Thank you.
Thank you for listening, everybody.
Bye.
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