March 31, 2024 • 21 mins
Welcome to AVM Alliance, where we delve into the world of pediatric stroke and brain disorders with honest conversations and valuable insights for our community. In this episode, host Raylene Lewis shares her experiences from the International Pediatric Stroke Organization 2024 Congress and exciting updates from our AVM Alliance community events. Join us as we explore the transformative power of therapy in pediatric stroke recovery with special guest Anna Haertling Clearman, an occupational therapist from UTHealth. Discover the 'Therapy Trifecta'—occupational therapy, physical therapy, and speech therapy—and learn about cutting-edge treatments and research programs making a difference in pediatric stroke rehabilitation. Whether you're a parent, caregiver, or advocate, this episode offers valuable information and encouragement as we navigate the journey of pediatric stroke together. Remember, you're never alone on this journey.
Pediatric Stroke Clinic Information
Webpage: https://www.avmalliance.org
Go Fund Me: https://www.gofundme.com/f/avmalliance
Our FB Page: https://www.facebook.com/AVMAlliance
Our FB Group: https://www.facebook.com/groups/325321586185434
Instagram: https://www.instagram.com/avmalliance/
TikTok: https://www.tiktok.com/@avmalliance
YouTube: https://www.youtube.com/@avmalliance
Personal Blog: https://www.caringbridge.org/visit/kylerlewis
Twitter: https://twitter.com/avmawareness
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Raylene Lewis (00:02):
Hi there, and thank you for joining us on AVM
Alliance, a pediatric podcastfor families and friends whose
lives have been affected bytraumatic brain injury, rare
disease, brain disorders, orstroke.
The purpose of this podcast isto focus on the kids side of
brain injury with honest talk,news, information, and
discussion for our community.
(00:24):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raylene Lewis and my sonKyler suffered a hemorrhagic
stroke at age 15.
Thank you for joining us.
Hello to all and happy spring.
I don't know about you, but Iwas very excited to hear that
(00:44):
Punxsutawney Phil, the infamousgroundhog, said that we are
moving full steam ahead intospring.
Personally, being a Texas girl,I am not a fan of cold weather.
I am, however, all about Aprilshowers and hope they bring
beautiful May flowers.
April brings an extracelebration this year for our
family.
(01:04):
Currently, it means the clock isstill going and Kyler has made
it three months seizure free.
Here's hoping this trendcontinues.
Please! There are a couplethings that I'm excited to talk
to you about today.
First of all, I'm back from theInternational Pediatric Stroke
Organization 2024 Congress, andthat took place in Toronto,
(01:26):
Canada.
Wow.
It was an overwhelming amount ofsuper important information.
And if you'd like, you too cansee what was discussed with
photos and videos.
If you'll just look in ourprivate Facebook group, AVM
Alliance, a pediatric.
AVM aneurysm stroke group.
(01:46):
This is a private group.
So you'll have to answer somequestions to join.
We also received some reallyspecial shout outs from doctors
at various centers forexcellence.
And these are folks whospecialize in treating pediatric
stroke and brain vessel diseaseacross the United States.
We'll be posting these onFacebook and Instagram
throughout the month of April.
(02:07):
And I just want to say it was soheartwarming to see how much
these doctors care about ourkiddos and community.
I want to give a huge shout outto, to the VOGM network, which
is the vein of GalenMalformation Network, as well as
the Moyamoya Foundation and theInternational Alliance for
Pediatric Stroke.
(02:29):
We are all advocates on the sameteam.
And I know we're all friendstoo.
Now I look forward tocollaborating and working with
these groups even more in thefuture.
I think it makes our communitystronger.
Now when it comes to ourcommunity, we've rolled out a
few special things for ourkiddos.
First of all, April 8th will beour solar eclipse extravaganza
(02:51):
event.
The last couple of weeks we'vebeen snail mailing books and
solar eclipse glasses to ourcommunity kiddos.
This is all thanks to MindiKavanaugh with Greene Eyes
Optometrists in Bryan, Texas,who was the generous sponsor of
this event.
If you have a chance, look herup on Google and give this
(03:11):
office a five star review.
Seriously guys, we have such ahuge need for sponsors like
Mindi to be able to offer eventslike these.
And it means so much to our AVMAlliance kiddos, their siblings,
and really to all of ourcommunity.
Additionally, we have opened ourAVM Alliance Minecraft Realm to
(03:33):
our Pediatric Stroke and BrainVessel Disease Warriors and
their siblings, and it has beensuch a pleasure to witness them
interacting, playing, andbuilding things together.
Now, for our older teens andyoung adults, we have just
opened an AVM Alliance DiscordRealm, and that's so our kids
can play video games, listen tomusic, talk, or text, and the
(03:57):
goal is for them to developstrong relationships with each
other.
Sometimes this disease canreally include a loneliness
factor, and that's somethingthat AVM Alliance is working
very hard to try to combat.
I also want to mention that wehad a great meeting with
Cephable last week, and theirtechnology is readily available
(04:18):
for free for our kiddos who haveissues that might make it
difficult for them to use agaming controller, mouse, or
keyboard.
Thank you, Cephable.
Now, if any parents need helpsetting up this software, all
they need to do is just reachout to us.
Info at avmalliance.
org and we are happy to help.
(04:39):
And just a quick reminder toeveryone that if you follow our
page, avmalliance, a pediatricstroke page on Facebook, or
avmalliance on Instagram, youcan really see the results of
what our nonprofit is doing.
We would love your help to makesure our families have the
support they need and deserve.
(05:01):
When you hear it takes avillage, let me tell you.
This is a hundred percent true.
Now, moving on with me today isAnna Harding Clearman,
occupational therapist in thepediatric stroke program at
UTHealth.
Anna, thank you for joining ustoday.
Anna Haertling Clea (05:17):
Absolutely, Raylene.
Thank you so much for having me.
I'm super excited to be here andchat with you.
Raylene Lewis (05:23):
Well, let's start off with just like the basic
general question.
What is occupational therapy?
Anna Haertling Clearman (05:28):
That is a question I have gotten
multiple times over my 10 yearcareer as an OT and even before
then when I was in school andtelling people what I was
wanting to do with my life,everybody hears occupational
therapy and thinks occupationjob, you know, only applicable
to people who are working.
And that's not that's not thecase.
If you frame your mind aroundthe fact that the word
(05:50):
occupation is anything in yourdaily life that you need to do
or you want to do or maybe areexpected to do, that opens up a
whole new world of understandingwhat OT is.
So in the context of pediatricstroke occupational therapists
are going to be the individualsworking with you or your child
(06:11):
to get back to doing those dailyoccupations.
What do they need to do everyday?
You know, everything fromgetting up in the morning and
getting dressed, feedingthemselves a meal, doing their
schoolwork.
That is their job as a child oras a teen.
You know, and it goes all theway up to things like driving
but really anything that youneed to do in your day to day
life, those functionalactivities, occupational therapy
(06:34):
can help with, and obviously weare working with people who are
having difficulty doing thosethings either learning how to do
them or as they develop orlearning how to do them in a
different way if they're notable to do them as they were
before.
So really our, our big thing ishelping people live their life
to the fullest.
Raylene Lewis (06:52):
Well, I have to say, you know, I've spent quite
a few hours with Kyler in thedifferent therapies and
occupational therapy is alwaysmy favorite.
So Kyler's sister said she wantsto be an occupational therapist.
So that's what she's written inall of her essays that she, you
know, is trying to get intocollege this year.
And I think what's really neat,at least for me, is when you
(07:14):
look at See how your kid isdoing at therapy.
You know, occupational therapyis something where you can see,
in my opinion, rather quickly,you know, how much of a
difference they can make and andhow fast that they can advance
on certain things.
And for me, Kyler was like, Oh,you know I don't need this.
I can do this.
And.
(07:35):
One of the occupationaltherapists showed him so he he's
right handed, right?
So that should be his fastfaster hand for doing seven It
was a simple task of movingblocks from one side to the
other and how fast can you dothat?
right and she had him do it withthe left hand and they timed him
and then she had him do it withthe right hand and He was
absolutely stunned that he wasso much slower than In the right
(07:59):
hand, which is his, his dominanthand than the left.
Right?
And, and it, for him it was thishuge eyeopener that was like,
wow, maybe I do need therapy.
So tell me, you know, what arethe other types of therapies
that someone might
Anna Haertling Clearma (08:11):
receive?
After experiencing a stroke, Iusually call it like the big
three or the trifecta of whatyou're going to get as far as
rehabilitation therapy.
So there's occupational therapy,physical therapy, and speech
therapy.
After a stroke, someone mightneed one, two, or all of those
therapies at some point.
And that might change over timeas they, as they recover and
what their needs are.
(08:32):
I already explained occupationaltherapy.
We do often get compared tophysical therapy.
The biggest thing I say whenpeople ask what the difference
is between OT and PT, is thatoccupational therapy focuses on
function and PT focuses onmobility.
So any movement of the body fromyou know, just learning how to
(08:52):
go from laying down to sittingup, from sitting to standing,
from standing to walking.
If you're not at the point ofwalking, maybe just moving from
a bed or a couch to awheelchair.
Those transitional movements,getting from point A to point B.
PT is going to help you getthere, and then OT is going to
help you do whatever you need todo once you get there.
So,
Raylene Lewis (09:14):
And then the trifecta, the third for the
trifecta is speech, right?
Anna Haertling Clearman (09:17):
Yes, speech therapy or speech
language pathology as you mayhear it sometimes.
Speech therapy covers a broadarray of Interventions after
stroke, so they can help witheverything from speech
production.
That's, you know, inherent inthe name being able to talk.
A lot of people may havedifficulty forming words, either
the motor movements of theirmouth or getting what's in their
(09:41):
brain to come to their mouth andmaking that connection.
They can also work withswallowing and feeding.
So if anybody has trouble Yeah.
with their intake of food,whether it be the chewing part
or the swallowing part speechlanguage pathologists can help
with that as well.
They also work a lot withcognition.
So memory processing thosehigher level executive
(10:02):
functioning things, planning,problem solving which does
overlap with O.
T.
sometimes as well but speechtherapists are very specialized
in those sorts of things.
Raylene Lewis (10:13):
Yeah, that's one thing I really had a question on
because for Kyler, I thoughtthat he needed more O.
T.
and they told me no, it's reallythe cognitive function side, so
he needs more of the executivefunction part.
Can you explain that a littlebit more?
The difference.
Yeah.
Anna Haertling Clearman (10:30):
So the way that I've seen it in
practice is we really sort oftag team on some of those
things.
The speech therapists are maybegoing to really lay the
groundwork for learning newstrategies or helping a patient.
realize, you know, what theyneed to do and how they need to
approach a cognitive task.
You might see speech therapistsdo more what we call paper
(10:52):
pencil tasks.
So things at a table,worksheets, those sorts of
things.
And then OT is going to help.
them then apply that to theireveryday life.
Raylene Lewis (11:01):
That makes so much sense to me.
I kind of see the connectionthere.
So one of Kyler's biggest thingsthat he lost with his stroke was
he would get, he would actuallyget lost.
And so they worked on, okay, andwe wrote it all down.
What would happen if you didn'tknow where you were?
How, what do you do in terms oflooking around so that you don't
get lost?
Like, for example, when you goto park at a.
(11:23):
Commercial place, you know, theyhave pink and green and blue and
your P7 or D4 or whatever.
And and so he would, he wasreally bad about getting lost in
there, in that situation, butalso in hotels, because all the
hotel rooms look the same.
And, and so it's very, veryconfusing.
And I remember the OT personsaying, okay, now let's do this.
(11:45):
Do it.
And so they got up and he waslike, now show me where you
parked your car today.
You know, and things like that.
And they put him in a, I guesswhere hospital rooms are kind of
the same idea as as hotels.
And so they put him in one placeand was like, okay, now you have
to get back
Anna Haertling Clearman (12:00):
So, yep.
And all the strategies that helearned from the speech
therapist, he was applyingprobably during that task with
the ot.
So again, I call it, you know,the big three or the trifecta
'cause we all work so closelytogether.
There's a little bit of overlap.
between what we all do, becauseyou can't compartmentalize a
person.
You can't just say, you know,you need to work on your
(12:21):
mobility or you need to work onthis functional activity or you
need to work on your cognition.
They all affect each other.
And so that's why we really talka lot about an interdisciplinary
team being such an integral partto a patient's recovery, not
only with the therapist, then,you know, also with the nurses
and the doctors and everythingelse.
But we, we all work closelytogether because, you know, it's
(12:43):
all about one person and
Raylene Lewis (12:46):
we've all heard it takes a village, right?
It's so true.
Anna Haertling Clearman (12:49):
Sure.
Yeah.
That's it.
And it's, you know, that soundslike such a stereotypical phrase
but it's, it, it describes itperfectly, I think.
Raylene Lewis (12:56):
Yeah, I agree 100%.
So for a lot of our parentsstroke is like something they'd
never even anticipated,especially with a kid.
Right.
And so the first thing is themedical hurdle of, okay, let's
get stable.
Let's get okay.
And then it's like, and we'rereleasing you to therapy.
And part of you is like, Yay, Iget to, you know, move to the
(13:16):
next step.
And then other parts, it's like,it's really scary.
What do you typically see forrecovery after stroke?
Okay.
Anna Haertling Clearman (13:23):
So every patient's recovery
trajectory is going to lookdifferent because every person
is different.
You start in the hospital, maybein the ICU, you go to the floor,
you may go to inpatient rehabafter that, transition to
outpatient rehab.
Raylene Lewis (13:39):
People say, Oh, you flatline after.
A certain number of years.
I don't think that's true.
Anna Haertling Clearman (13:44):
Yeah, I don't think that's true either.
There has been there have beenresearch that shows that you can
still continue to recover,recover after a certain amount
of time.
You might make a faster, youknow, recovery initially, and
then maybe slow down a littlebit, but that doesn't mean
you're plateauing.
Putting on a shirt is an exampleI always use.
(14:06):
You know, I could sit here andwork with you in inpatient rehab
or, you know, at the verybeginning of your recovery
stage, and we can work all daylong on your arm, but you, you
may at that point, you know,only recover some shoulder
movement or maybe a little bitof elbow movement.
You might not get to the pointof moving your hand.
And I'm not going to send youhome from the inpatient hospital
(14:26):
without knowing how to put onyour shirt.
There's compensatory andadaptive strategies for our
daily activities that maybedon't necessarily use the
movement of the arm but get youback to doing that activity a
little quicker and getting youto be independent.
At some stages, we need to workon recovery.
We need to work on the, youknow, rehabilitation of the
(14:47):
movement but we also need toconsider compensation and
adaptation to increaseindependence along the way.
Raylene Lewis (14:55):
Compensation and adaptation.
I love that.
So just because you losefunction of something doesn't
mean that you lose the abilityto do something else.
You just have to learn to do ita different way.
Anna Haertling Clea (15:07):
Absolutely.
And that's why I reassure peopleparents and patients when they
say, well, you know, I, I'vebeen working so hard.
I still can't move my hand.
And it's like, okay, well, we'restill going to work on that.
But in the meantime, look at allthese things you can do.
Recovery never, never ends.
It just looks different atdifferent stages.
Raylene Lewis (15:26):
A hundred percent.
I couldn't agree more.
Okay, so what is new in theworld of therapy for pediatric
stroke?
Anna Haertling Clearman (15:33):
With technology, just like we were
talking earlier.
There's
Raylene Lewis (15:35):
like this bio thing, right?
I don't mean to interrupt, butlike
Anna Haertling Clearman (15:39):
Yeah, there's, there's biofeedback,
there's devices coming out.
People are using, there'scompanies adapting, you know,
video games and video gamesystems and computer software
that allows you to do things indifferent ways.
So I don't, certainly don't knoweverything, but what I do have
some knowledge about is some ofthe research that's being done
(16:02):
specifically for pediatric forperinatal and pediatric stroke.
So.
Specifically studies that I'mcurrently working on two studies
here at UT Health constrainttherapy for anyone who may not
be aware that you might see itcalled C.
I.
or C.
I.
M.
T.
constraint induced movementtherapy.
Essentially the premise behindit is you know, recovering
(16:24):
movement in the affected orweaker arm.
So we put a a lightweight caston the strong arm for a period
of time that forces movement ofthe weaker arm.
It's called acquire therapy andit's other studies have shown
that CIMT is effective.
It's just a matter of figuringout kind of that, you know, how
much.
(16:44):
Is needed.
How intense does it need to be?
And that's kind of what we'relooking at with that study right
now.
Raylene Lewis (16:49):
And the other study that you're doing.
So the, the, I acquire or theCIMT that's for the babies, the,
the younger ones.
Anna Haertling Clearman (16:57):
Yeah, yeah, it goes up to three years
old, but it's for people thatfor kids that have had a stroke,
you know, in that early stage oflife before they're one month
old.
Raylene Lewis (17:06):
All right.
And the other one is the T.
O.
P.
S.
program, right?
Anna Haertling Cl (17:09):
Tolerability.
That's the T.
O.
So it's Tolerability ofTranscranial Direct Current
Stimulation for Pediatric StrokeSurvivors.
And so that's the P.
S.
S.
Pediatric Stroke Survivors.
Raylene Lewis (17:21):
And this one is for kids, I think, what, age 5
to 8 to 20 or something likethat?
Yeah,
Anna Haertling Clearman (17:27):
it's for anybody who's had a stroke
from the age of one month upuntil Okay,
Raylene Lewis (17:34):
and that one is really interesting because the,
the transcranial stimulation, itdoesn't hurt, but basically it's
a combination of usingelectrodes, right?
A little a little electricitytherapy getting those muscles to
move along with rehabilitation,physical movement at the same
time, right?
Anna Haertling Clearman (17:52):
I'm the treating therapist for that
study as well.
And again, we're focusing onincreasing movement of the arm,
the affected arm.
So yeah, it's transcranialdirect current stimulation or
TDCS sounds really intimidating.
And it, but it's not.
It's basically puttingelectrodes on the scalp.
(18:13):
A lot of patients don't evenfeel it.
Some describe it as kind of atickling or tingling sensation.
But we put the positiveelectrode over the motor cortex
that was affected during thestroke.
We start with some stimulation,about 20 minutes of stimulation
while they start doing thetherapy for their arm.
And then once the stimulation isremoved after 20 minutes, we
continue working on the arm withthe OT with me for the next
(18:37):
couple of hours to maximize thepotential benefit that that
stimulation over the motorcortex has.
Raylene Lewis (18:44):
And you see positive results with that as
well, I think.
Anna Haertling Clearman (18:47):
Again, I can't necessarily say you
know, because we haven'tpublished the results of that
first study yet.
But it, it's been a reallypositive experience, I think
for, for myself as the therapistand for all the patients that
were enrolled in the first partof the, the program, you know,
your life changes completelyafter an event like this.
And what I want people to knowand, and think about is that.
(19:12):
It's It's very easy for recoveryfrom stroke to take over your
life and become your full timejob.
But it's also okay to have whatwe in the OT world call
occupational balance, which is abalance of the things you have
to do and the things that youcan't do.
(19:33):
Want to do or that you enjoydoing and how you devote your
time to balance those things outin order to make your physical
and emotional health optimized.
Just the big thing is, you know,especially as parents, you know,
go easy on yourself.
Don't, don't let this overwhelmyou to the point where it takes
over your life.
(19:53):
And, you know, communicate withyour care team about what is
needed and we can work with youto, to make that fit in your
life.
As best as possible.
You know, a lot of families haveother kids and all of a sudden
you know, the stroke recoverytakes over and the other kids
like, well, what about me?
You know, make, you know, maketime for them to make time for
things as a family that aren'tabout them.
(20:15):
Recovery from the stroke.
It's just about being yourfamily.
Like, like you were before, likeyou still are.
Raylene Lewis (20:20):
And as parents, we have to find that balance and
find the balance that works forour kids and also for our family
and our sanity.
Anna Haertling Clearma (20:28):
Exactly.
Absolutely.
Raylene Lewis (20:31):
Well, thank you so much for coming today and if
somebody wanted more informationon the therapy programs that we
talked about, you can absolutelygo to avmalliance.
org.
I'll also have the link in thecomments below.
If
Anna Haertling Clearman (20:44):
you are interested in learning more
about UTHealth's PediatricStroke Program or any research
going on within our program youcan look that up UTHealth
Pediatric Stroke Program.
Our director is Dr.
Stuart Fraser.
There aren't many pediatricstroke programs in the country,
so it would be pretty easy tofind us via Google instead of me
spelling out our whole websiteand things of that nature.
Raylene Lewis (21:06):
Dr.
Frazier has been amazing forKyler and helping him with his
recovery.
And so I just thank you guys allfor everything that you do for
our kiddos.
Anna Haertling Clea (21:16):
Absolutely.
It's, it's always a pleasure.
You know, you don't get intothis field unless you love
people and love making adifference.
And it's been an absolutepleasure to work with every
single patient that has comeacross us.
Raylene Lewis (21:27):
Well, thank you so much for all you do.
And thank you for joining metoday.
Anna Haertling Clearman (21:31):
Thank you, Raylene.
I appreciate it.
Raylene Lewis (21:35):
And as always, if you have questions, have a topic
you would like to hear about,don't be shy, share it in the
comments and let us know.
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care, y'all.
Hi there, and thank you for joining us on AVM
Alliance, a pediatric podcastfor families and friends whose
lives have been affected bytraumatic brain injury, rare
disease, brain disorders, orstroke.
The purpose of this podcast isto focus on the kids side of
brain injury with honest talk,news, information, and
discussion for our community.
(00:24):
Being a parent of a medicallycomplex child is an extremely
difficult path to suddenly findyourself on.
I'm Raylene Lewis and my sonKyler suffered a hemorrhagic
stroke at age 15.
Thank you for joining us.
Hello to all and happy spring.
I don't know about you, but Iwas very excited to hear that
(00:44):
Punxsutawney Phil, the infamousgroundhog, said that we are
moving full steam ahead intospring.
Personally, being a Texas girl,I am not a fan of cold weather.
I am, however, all about Aprilshowers and hope they bring
beautiful May flowers.
April brings an extracelebration this year for our
family.
(01:04):
Currently, it means the clock isstill going and Kyler has made
it three months seizure free.
Here's hoping this trendcontinues.
Please! There are a couplethings that I'm excited to talk
to you about today.
First of all, I'm back from theInternational Pediatric Stroke
Organization 2024 Congress, andthat took place in Toronto,
(01:26):
Canada.
Wow.
It was an overwhelming amount ofsuper important information.
And if you'd like, you too cansee what was discussed with
photos and videos.
If you'll just look in ourprivate Facebook group, AVM
Alliance, a pediatric.
AVM aneurysm stroke group.
(01:46):
This is a private group.
So you'll have to answer somequestions to join.
We also received some reallyspecial shout outs from doctors
at various centers forexcellence.
And these are folks whospecialize in treating pediatric
stroke and brain vessel diseaseacross the United States.
We'll be posting these onFacebook and Instagram
throughout the month of April.
(02:07):
And I just want to say it was soheartwarming to see how much
these doctors care about ourkiddos and community.
I want to give a huge shout outto, to the VOGM network, which
is the vein of GalenMalformation Network, as well as
the Moyamoya Foundation and theInternational Alliance for
Pediatric Stroke.
(02:29):
We are all advocates on the sameteam.
And I know we're all friendstoo.
Now I look forward tocollaborating and working with
these groups even more in thefuture.
I think it makes our communitystronger.
Now when it comes to ourcommunity, we've rolled out a
few special things for ourkiddos.
First of all, April 8th will beour solar eclipse extravaganza
(02:51):
event.
The last couple of weeks we'vebeen snail mailing books and
solar eclipse glasses to ourcommunity kiddos.
This is all thanks to MindiKavanaugh with Greene Eyes
Optometrists in Bryan, Texas,who was the generous sponsor of
this event.
If you have a chance, look herup on Google and give this
(03:11):
office a five star review.
Seriously guys, we have such ahuge need for sponsors like
Mindi to be able to offer eventslike these.
And it means so much to our AVMAlliance kiddos, their siblings,
and really to all of ourcommunity.
Additionally, we have opened ourAVM Alliance Minecraft Realm to
(03:33):
our Pediatric Stroke and BrainVessel Disease Warriors and
their siblings, and it has beensuch a pleasure to witness them
interacting, playing, andbuilding things together.
Now, for our older teens andyoung adults, we have just
opened an AVM Alliance DiscordRealm, and that's so our kids
can play video games, listen tomusic, talk, or text, and the
(03:57):
goal is for them to developstrong relationships with each
other.
Sometimes this disease canreally include a loneliness
factor, and that's somethingthat AVM Alliance is working
very hard to try to combat.
I also want to mention that wehad a great meeting with
Cephable last week, and theirtechnology is readily available
(04:18):
for free for our kiddos who haveissues that might make it
difficult for them to use agaming controller, mouse, or
keyboard.
Thank you, Cephable.
Now, if any parents need helpsetting up this software, all
they need to do is just reachout to us.
Info at avmalliance.
org and we are happy to help.
(04:39):
And just a quick reminder toeveryone that if you follow our
page, avmalliance, a pediatricstroke page on Facebook, or
avmalliance on Instagram, youcan really see the results of
what our nonprofit is doing.
We would love your help to makesure our families have the
support they need and deserve.
(05:01):
When you hear it takes avillage, let me tell you.
This is a hundred percent true.
Now, moving on with me today isAnna Harding Clearman,
occupational therapist in thepediatric stroke program at
UTHealth.
Anna, thank you for joining ustoday.
Anna Haertling Clea (05:17):
Absolutely, Raylene.
Thank you so much for having me.
I'm super excited to be here andchat with you.
Raylene Lewis (05:23):
Well, let's start off with just like the basic
general question.
What is occupational therapy?
Anna Haertling Clearman (05:28):
That is a question I have gotten
multiple times over my 10 yearcareer as an OT and even before
then when I was in school andtelling people what I was
wanting to do with my life,everybody hears occupational
therapy and thinks occupationjob, you know, only applicable
to people who are working.
And that's not that's not thecase.
If you frame your mind aroundthe fact that the word
(05:50):
occupation is anything in yourdaily life that you need to do
or you want to do or maybe areexpected to do, that opens up a
whole new world of understandingwhat OT is.
So in the context of pediatricstroke occupational therapists
are going to be the individualsworking with you or your child
(06:11):
to get back to doing those dailyoccupations.
What do they need to do everyday?
You know, everything fromgetting up in the morning and
getting dressed, feedingthemselves a meal, doing their
schoolwork.
That is their job as a child oras a teen.
You know, and it goes all theway up to things like driving
but really anything that youneed to do in your day to day
life, those functionalactivities, occupational therapy
(06:34):
can help with, and obviously weare working with people who are
having difficulty doing thosethings either learning how to do
them or as they develop orlearning how to do them in a
different way if they're notable to do them as they were
before.
So really our, our big thing ishelping people live their life
to the fullest.
Raylene Lewis (06:52):
Well, I have to say, you know, I've spent quite
a few hours with Kyler in thedifferent therapies and
occupational therapy is alwaysmy favorite.
So Kyler's sister said she wantsto be an occupational therapist.
So that's what she's written inall of her essays that she, you
know, is trying to get intocollege this year.
And I think what's really neat,at least for me, is when you
(07:14):
look at See how your kid isdoing at therapy.
You know, occupational therapyis something where you can see,
in my opinion, rather quickly,you know, how much of a
difference they can make and andhow fast that they can advance
on certain things.
And for me, Kyler was like, Oh,you know I don't need this.
I can do this.
And.
(07:35):
One of the occupationaltherapists showed him so he he's
right handed, right?
So that should be his fastfaster hand for doing seven It
was a simple task of movingblocks from one side to the
other and how fast can you dothat?
right and she had him do it withthe left hand and they timed him
and then she had him do it withthe right hand and He was
absolutely stunned that he wasso much slower than In the right
(07:59):
hand, which is his, his dominanthand than the left.
Right?
And, and it, for him it was thishuge eyeopener that was like,
wow, maybe I do need therapy.
So tell me, you know, what arethe other types of therapies
that someone might
Anna Haertling Clearma (08:11):
receive?
After experiencing a stroke, Iusually call it like the big
three or the trifecta of whatyou're going to get as far as
rehabilitation therapy.
So there's occupational therapy,physical therapy, and speech
therapy.
After a stroke, someone mightneed one, two, or all of those
therapies at some point.
And that might change over timeas they, as they recover and
what their needs are.
(08:32):
I already explained occupationaltherapy.
We do often get compared tophysical therapy.
The biggest thing I say whenpeople ask what the difference
is between OT and PT, is thatoccupational therapy focuses on
function and PT focuses onmobility.
So any movement of the body fromyou know, just learning how to
(08:52):
go from laying down to sittingup, from sitting to standing,
from standing to walking.
If you're not at the point ofwalking, maybe just moving from
a bed or a couch to awheelchair.
Those transitional movements,getting from point A to point B.
PT is going to help you getthere, and then OT is going to
help you do whatever you need todo once you get there.
So,
Raylene Lewis (09:14):
And then the trifecta, the third for the
trifecta is speech, right?
Anna Haertling Clearman (09:17):
Yes, speech therapy or speech
language pathology as you mayhear it sometimes.
Speech therapy covers a broadarray of Interventions after
stroke, so they can help witheverything from speech
production.
That's, you know, inherent inthe name being able to talk.
A lot of people may havedifficulty forming words, either
the motor movements of theirmouth or getting what's in their
(09:41):
brain to come to their mouth andmaking that connection.
They can also work withswallowing and feeding.
So if anybody has trouble Yeah.
with their intake of food,whether it be the chewing part
or the swallowing part speechlanguage pathologists can help
with that as well.
They also work a lot withcognition.
So memory processing thosehigher level executive
(10:02):
functioning things, planning,problem solving which does
overlap with O.
T.
sometimes as well but speechtherapists are very specialized
in those sorts of things.
Raylene Lewis (10:13):
Yeah, that's one thing I really had a question on
because for Kyler, I thoughtthat he needed more O.
T.
and they told me no, it's reallythe cognitive function side, so
he needs more of the executivefunction part.
Can you explain that a littlebit more?
The difference.
Yeah.
Anna Haertling Clearman (10:30):
So the way that I've seen it in
practice is we really sort oftag team on some of those
things.
The speech therapists are maybegoing to really lay the
groundwork for learning newstrategies or helping a patient.
realize, you know, what theyneed to do and how they need to
approach a cognitive task.
You might see speech therapistsdo more what we call paper
(10:52):
pencil tasks.
So things at a table,worksheets, those sorts of
things.
And then OT is going to help.
them then apply that to theireveryday life.
Raylene Lewis (11:01):
That makes so much sense to me.
I kind of see the connectionthere.
So one of Kyler's biggest thingsthat he lost with his stroke was
he would get, he would actuallyget lost.
And so they worked on, okay, andwe wrote it all down.
What would happen if you didn'tknow where you were?
How, what do you do in terms oflooking around so that you don't
get lost?
Like, for example, when you goto park at a.
(11:23):
Commercial place, you know, theyhave pink and green and blue and
your P7 or D4 or whatever.
And and so he would, he wasreally bad about getting lost in
there, in that situation, butalso in hotels, because all the
hotel rooms look the same.
And, and so it's very, veryconfusing.
And I remember the OT personsaying, okay, now let's do this.
(11:45):
Do it.
And so they got up and he waslike, now show me where you
parked your car today.
You know, and things like that.
And they put him in a, I guesswhere hospital rooms are kind of
the same idea as as hotels.
And so they put him in one placeand was like, okay, now you have
to get back
Anna Haertling Clearman (12:00):
So, yep.
And all the strategies that helearned from the speech
therapist, he was applyingprobably during that task with
the ot.
So again, I call it, you know,the big three or the trifecta
'cause we all work so closelytogether.
There's a little bit of overlap.
between what we all do, becauseyou can't compartmentalize a
person.
You can't just say, you know,you need to work on your
(12:21):
mobility or you need to work onthis functional activity or you
need to work on your cognition.
They all affect each other.
And so that's why we really talka lot about an interdisciplinary
team being such an integral partto a patient's recovery, not
only with the therapist, then,you know, also with the nurses
and the doctors and everythingelse.
But we, we all work closelytogether because, you know, it's
(12:43):
all about one person and
Raylene Lewis (12:46):
we've all heard it takes a village, right?
It's so true.
Anna Haertling Clearman (12:49):
Sure.
Yeah.
That's it.
And it's, you know, that soundslike such a stereotypical phrase
but it's, it, it describes itperfectly, I think.
Raylene Lewis (12:56):
Yeah, I agree 100%.
So for a lot of our parentsstroke is like something they'd
never even anticipated,especially with a kid.
Right.
And so the first thing is themedical hurdle of, okay, let's
get stable.
Let's get okay.
And then it's like, and we'rereleasing you to therapy.
And part of you is like, Yay, Iget to, you know, move to the
(13:16):
next step.
And then other parts, it's like,it's really scary.
What do you typically see forrecovery after stroke?
Okay.
Anna Haertling Clearman (13:23):
So every patient's recovery
trajectory is going to lookdifferent because every person
is different.
You start in the hospital, maybein the ICU, you go to the floor,
you may go to inpatient rehabafter that, transition to
outpatient rehab.
Raylene Lewis (13:39):
People say, Oh, you flatline after.
A certain number of years.
I don't think that's true.
Anna Haertling Clearman (13:44):
Yeah, I don't think that's true either.
There has been there have beenresearch that shows that you can
still continue to recover,recover after a certain amount
of time.
You might make a faster, youknow, recovery initially, and
then maybe slow down a littlebit, but that doesn't mean
you're plateauing.
Putting on a shirt is an exampleI always use.
(14:06):
You know, I could sit here andwork with you in inpatient rehab
or, you know, at the verybeginning of your recovery
stage, and we can work all daylong on your arm, but you, you
may at that point, you know,only recover some shoulder
movement or maybe a little bitof elbow movement.
You might not get to the pointof moving your hand.
And I'm not going to send youhome from the inpatient hospital
(14:26):
without knowing how to put onyour shirt.
There's compensatory andadaptive strategies for our
daily activities that maybedon't necessarily use the
movement of the arm but get youback to doing that activity a
little quicker and getting youto be independent.
At some stages, we need to workon recovery.
We need to work on the, youknow, rehabilitation of the
(14:47):
movement but we also need toconsider compensation and
adaptation to increaseindependence along the way.
Raylene Lewis (14:55):
Compensation and adaptation.
I love that.
So just because you losefunction of something doesn't
mean that you lose the abilityto do something else.
You just have to learn to do ita different way.
Anna Haertling Clea (15:07):
Absolutely.
And that's why I reassure peopleparents and patients when they
say, well, you know, I, I'vebeen working so hard.
I still can't move my hand.
And it's like, okay, well, we'restill going to work on that.
But in the meantime, look at allthese things you can do.
Recovery never, never ends.
It just looks different atdifferent stages.
Raylene Lewis (15:26):
A hundred percent.
I couldn't agree more.
Okay, so what is new in theworld of therapy for pediatric
stroke?
Anna Haertling Clearman (15:33):
With technology, just like we were
talking earlier.
There's
Raylene Lewis (15:35):
like this bio thing, right?
I don't mean to interrupt, butlike
Anna Haertling Clearman (15:39):
Yeah, there's, there's biofeedback,
there's devices coming out.
People are using, there'scompanies adapting, you know,
video games and video gamesystems and computer software
that allows you to do things indifferent ways.
So I don't, certainly don't knoweverything, but what I do have
some knowledge about is some ofthe research that's being done
(16:02):
specifically for pediatric forperinatal and pediatric stroke.
So.
Specifically studies that I'mcurrently working on two studies
here at UT Health constrainttherapy for anyone who may not
be aware that you might see itcalled C.
I.
or C.
I.
M.
T.
constraint induced movementtherapy.
Essentially the premise behindit is you know, recovering
(16:24):
movement in the affected orweaker arm.
So we put a a lightweight caston the strong arm for a period
of time that forces movement ofthe weaker arm.
It's called acquire therapy andit's other studies have shown
that CIMT is effective.
It's just a matter of figuringout kind of that, you know, how
much.
(16:44):
Is needed.
How intense does it need to be?
And that's kind of what we'relooking at with that study right
now.
Raylene Lewis (16:49):
And the other study that you're doing.
So the, the, I acquire or theCIMT that's for the babies, the,
the younger ones.
Anna Haertling Clearman (16:57):
Yeah, yeah, it goes up to three years
old, but it's for people thatfor kids that have had a stroke,
you know, in that early stage oflife before they're one month
old.
Raylene Lewis (17:06):
All right.
And the other one is the T.
O.
P.
S.
program, right?
Anna Haertling Cl (17:09):
Tolerability.
That's the T.
O.
So it's Tolerability ofTranscranial Direct Current
Stimulation for Pediatric StrokeSurvivors.
And so that's the P.
S.
S.
Pediatric Stroke Survivors.
Raylene Lewis (17:21):
And this one is for kids, I think, what, age 5
to 8 to 20 or something likethat?
Yeah,
Anna Haertling Clearman (17:27):
it's for anybody who's had a stroke
from the age of one month upuntil Okay,
Raylene Lewis (17:34):
and that one is really interesting because the,
the transcranial stimulation, itdoesn't hurt, but basically it's
a combination of usingelectrodes, right?
A little a little electricitytherapy getting those muscles to
move along with rehabilitation,physical movement at the same
time, right?
Anna Haertling Clearman (17:52):
I'm the treating therapist for that
study as well.
And again, we're focusing onincreasing movement of the arm,
the affected arm.
So yeah, it's transcranialdirect current stimulation or
TDCS sounds really intimidating.
And it, but it's not.
It's basically puttingelectrodes on the scalp.
(18:13):
A lot of patients don't evenfeel it.
Some describe it as kind of atickling or tingling sensation.
But we put the positiveelectrode over the motor cortex
that was affected during thestroke.
We start with some stimulation,about 20 minutes of stimulation
while they start doing thetherapy for their arm.
And then once the stimulation isremoved after 20 minutes, we
continue working on the arm withthe OT with me for the next
(18:37):
couple of hours to maximize thepotential benefit that that
stimulation over the motorcortex has.
Raylene Lewis (18:44):
And you see positive results with that as
well, I think.
Anna Haertling Clearman (18:47):
Again, I can't necessarily say you
know, because we haven'tpublished the results of that
first study yet.
But it, it's been a reallypositive experience, I think
for, for myself as the therapistand for all the patients that
were enrolled in the first partof the, the program, you know,
your life changes completelyafter an event like this.
And what I want people to knowand, and think about is that.
(19:12):
It's It's very easy for recoveryfrom stroke to take over your
life and become your full timejob.
But it's also okay to have whatwe in the OT world call
occupational balance, which is abalance of the things you have
to do and the things that youcan't do.
(19:33):
Want to do or that you enjoydoing and how you devote your
time to balance those things outin order to make your physical
and emotional health optimized.
Just the big thing is, you know,especially as parents, you know,
go easy on yourself.
Don't, don't let this overwhelmyou to the point where it takes
over your life.
(19:53):
And, you know, communicate withyour care team about what is
needed and we can work with youto, to make that fit in your
life.
As best as possible.
You know, a lot of families haveother kids and all of a sudden
you know, the stroke recoverytakes over and the other kids
like, well, what about me?
You know, make, you know, maketime for them to make time for
things as a family that aren'tabout them.
(20:15):
Recovery from the stroke.
It's just about being yourfamily.
Like, like you were before, likeyou still are.
Raylene Lewis (20:20):
And as parents, we have to find that balance and
find the balance that works forour kids and also for our family
and our sanity.
Anna Haertling Clearma (20:28):
Exactly.
Absolutely.
Raylene Lewis (20:31):
Well, thank you so much for coming today and if
somebody wanted more informationon the therapy programs that we
talked about, you can absolutelygo to avmalliance.
org.
I'll also have the link in thecomments below.
If
Anna Haertling Clearman (20:44):
you are interested in learning more
about UTHealth's PediatricStroke Program or any research
going on within our program youcan look that up UTHealth
Pediatric Stroke Program.
Our director is Dr.
Stuart Fraser.
There aren't many pediatricstroke programs in the country,
so it would be pretty easy tofind us via Google instead of me
spelling out our whole websiteand things of that nature.
Raylene Lewis (21:06):
Dr.
Frazier has been amazing forKyler and helping him with his
recovery.
And so I just thank you guys allfor everything that you do for
our kiddos.
Anna Haertling Clea (21:16):
Absolutely.
It's, it's always a pleasure.
You know, you don't get intothis field unless you love
people and love making adifference.
And it's been an absolutepleasure to work with every
single patient that has comeacross us.
Raylene Lewis (21:27):
Well, thank you so much for all you do.
And thank you for joining metoday.
Anna Haertling Clearman (21:31):
Thank you, Raylene.
I appreciate it.
Raylene Lewis (21:35):
And as always, if you have questions, have a topic
you would like to hear about,don't be shy, share it in the
comments and let us know.
And if you liked what you heardtoday, please go online and rate
this podcast.
Remember, you're never walkingthis journey alone.
Take care, y'all.
Popular Podcasts
Cold Case Files: Miami
Joyce Sapp, 76; Bryan Herrera, 16; and Laurance Webb, 32—three Miami residents whose lives were stolen in brutal, unsolved homicides. Cold Case Files: Miami follows award‑winning radio host and City of Miami Police reserve officer Enrique Santos as he partners with the department’s Cold Case Homicide Unit, determined family members, and the advocates who spend their lives fighting for justice for the victims who can no longer fight for themselves.
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.