Occupational Therapy for Adults with Turner Syndrome

Occupational Therapy for Adults with Turner Syndrome


So I just wanted to are you guys all
familiar with occupational therapy. And it you guys have had that or experienced
it. So today we’re just gonna talk about what we do and then how you might access
services with adults to you know since you’re an adult not so much. I usually
work with children a little bit so. We’ll figure out some things that can support
you guys a little bit more. And I just have to disclose that I’m gonna give you
some websites and some things can you guys hear me okay? I’m gonna give you
some websites and different things to access but I don’t get any financial
gain from that. So just have to let you know that. So one of the things that
occupational therapists work with is sensory integration and that’s where we
help individuals of any age work on how they respond to their sensory
environment and how that can support them a little bit during you know
whenever you’re at work or things like that. So do you guys have any issues with
the anxiety ever? Okay, so we’ll probably spend a lot of time on that if you want
to and I have some cool gadgets that work pretty well. So one of the things
that we do in occupational therapy is we use sensory supports to help calm your
nervous system when you get anxious. And it usually ends up being a specific
program that an occupational therapist can design for you. So it wouldn’t be
that you know we give you all one thing to do and then that’s going to work for
everybody. It’s not like a one size you know one fit all thing but we go through
that as well. So you
can have sensitivities in your tactile system. So how your clothes feel on your
body whether or not you like to wash your hair whether you’re not or not you
like to get your hair cut that kind of stuff. It can you can have sensitivities
to movement. When you go to like a really loud event I don’t know if your dance
was loud or if that bothered anybody from an auditory standpoint, but that can
be another thing. And what happens is you just get your yeah it takes your nervous
system and it makes it into a really heightened response. And so then what
happens inside your brain in your body is you get really over responsive. And so
then everything is hard and you get irritable. So we’ll go through that a
little bit so when I say here’s salient versus non salient information we all
are have the ability to habituate like we’re gonna have to habituate the
clapping that just happened over there right. And if you’re super sensitive
you might hear the fan and you might have to habituate to that right. So
there’s different things that we all learn and what happens is that sometimes
our sensory system is so heightened that there’s no way we can habituate
all those things and so then we just it keeps firing right. And when it keeps
firing then we just listen to everything and get upset about it and you can get
more irritable so. In occupational therapy we use sensory, we use movement,
tactile, and proprioception. Is everybody familiar with that term. So proprioception is your a pull on your joints and your muscles. And what
happens is like when you go running or exercising do you guys feel calm
afterwards? Okay. So what happened with that is you gave your you released a
neurotransmitter inside your joint joints and that went
to your brain and produced a calming effect. So that’s why exercise is so
helpful. So we’ll talk a little bit about that
too and we want what’s called an adaptive response. And that’s just pretty
much the ability that you can go to any environment and be calm and regulated.
Okay. So in occupational therapy we will also look at this is kind of the neural
sensory pathways that we think about when we think about sensory processing.
And we will be looking at posture and ocular control being able to use your
eyes and hands together for fine motor for daily living tasks driving a car
those kind of things. We look at discrimination and that’s related to your
ability to discriminate auditory input, tactile input, movement that kind of
thing. And whether or not you get upset by it or whether or not it changes
throughout your day. And if it changes in a good way that’s cool but if it doesn’t
and it changes that you’re over reactive a lot of times then that it causes you
to have more stress. And more stress isn’t really good on our brains right
because we you know we don’t want to function in that way. So we take a look
at that. Modulation is a term that we use to describe that when you’re in
different environments you have the ability to discriminate and modulate
that sensory input. So sometimes Chuck-e-Cheese would be a good example.
It’s crazy right? I mean and you don’t go there. I mean most people don’t. I mean
but they they can do that and so. You have to really learn to figure out if
you’re gonna like that environment and be able to adapt and calm when you’re in
there. Okay. And this is a really nice graph that we use in occupational
therapy. So when you think about you start your day and say you
a little bit of stress going on and maybe you’re in college or something and
you have a big test coming up and you studied but you’re not sure. So we’re
gonna kind of it stacks up right so it would be that you’re studying for the
test you’re a little bit nervous about it not sure if you studied enough. Then
say the car breaks down. Okay. So you add that and that’s kind of what this bottom
row symbolizes down here. And then let’s say the favorite shirt you wanted to
wear is not there. So now you have to wearing itchy shirt okay. You know you’re
already I mean most of us are already kind of gone I don’t know I think I’m
right here I’m not in this optimal range anymore. I think I’m kind of heading up
here and then let’s say that you got the car fixed everything is cool but then
you go and you forgot a pencil right and you can’t take the test or you have to
reschedule it. I mean we all have different things that just pile up. And
so what happens is that generally most of us in the morning wake up and we’re
in this low arousal state. And arousal is your ability to attend and adapt to
sensory events over time. And we wanted it so some of us you know we might use
like coffee to wake up in the morning. We might do exercise or something like that,
but that gets this kind of up to this optimal range. And then as those sensory
events happen throughout the day we oftentimes see that it just builds right.
And it can build into this upper range which isn’t so great. And if we don’t
have good skills to know how to calm our body back down to that optimal range
we’re going to stay up here and we might be in this sensory overload range. And
you ness you know you don’t necessarily want to be there all the time. So that’s
one of the things on how we look at sensory issues in pretty much adults and
kids as well. And this is a nice slide that just talks about it kind of is
related to the your personality types. So a lot of
the sensory questionnaires that occupational therapists will use there’s
one called the sensory profile. And we do more than just a questionnaire but that
might be something we have you fill out. And it’s actually related to temperament.
So this is a slide that kind of talks about temperament. Sometimes and when we
talk about valence that’s when something is pleasant you like that sensory input
or it’s unpleasant. And then you want arousal where you’re gonna get to this
optimal range where you can function and you know you could handle the sensory
input around you. Or you’re too much in a low arousal area and that’s too hard for
you. Okay. So you can look at some personality things to kind of see where
you are because it does correlate a lot. And the Myers-Briggs is a good one.
So do you guys use different sensory input now to calm yourself down if you
need to? Does anybody want to share? Oh good good.
Yeah that’s a great one. And you you know music might work for you but it might
not work for another person. So well you know you you need to kind of figure out
all those things as well. So all that information comes into the brain it gets
processed and then we act on it on the frontal lobe. Sensory input comes in and
goes to every center of the brain. So that’s why it’s so powerful. And that’s
why we can use it when we need to. So when you get stressed you can get you
know you want to be in this optimal range. But when you get anxious then it’s
hard to you know you just can’t hold on to all those thoughts that you wanted to
right. And you actually have to kind of stop or you get debilitated b y it to a
degree. Right? That you just actually you know some people actually have to lay
down and not not be able to interact and that’s when you get disorganization and
when you’re in that high state. So we look at coping skills and one of those
things is about how we respond to stress, how
we adapt, and we design special programs for you. We talked about interoception
and that’s a big buzzword that’s been out for years. I mean we’ve known that 20
years ago but everybody’s bringing it back out. And this person has a book
about it. And it might be a good read. It’s a
little bit towards understanding inside your own body. So one of the things is
the first time when you get stressed it starts out in your tummy a lot of times
or it’ll be your head or you’ll feel sweaty palms those kind of things. And
when what I do is I work with everybody to figure out, where does it start first
you know will and will develop oh it starts in my tummy and then it goes up
here. Okay. So when I don’t necessarily focus on this situation then it started
that caused it but I focus on you’re feeling a stress now let’s figure out
what we can do about it. And then we implement a sensory strategy in place of
that when it first happens right. So that you can implement a calming strategies
so that it doesn’t go systemically throughout your whole body. And we work
on those things as well. So it’s about understanding that in the awareness
inside a lot of people don’t even understand when they get hungry you know.
And a lot of people don’t understand pain and regulation and those kind of
things so. We help to develop that emotional regulation as well. And this is
just another slide to talk about that window of tolerance. If you’re in that
overload range you can get more reactive you might snap verbally at somebody you
might have impulsive aggressive thought you know not thoughts but just you know
that’s when your nervous system is just having a hard time. And that’s really
when our sympathetic system is just out of control.
And when we have low activation in our pair
pathetic in our nervous system that’s when we’re tired we can’t function those
kind of things. So we really want to be in that optimal range.This would be a
sensory diet kind of template if you will. That an occupational therapist
would work with you on. And we would design specific activities in the
morning. Like what we might do is offer some oral sensory input. So if you’re
stressed out or you need to get regulated in the morning the oral system
on the brain is really mapped out in a large area so we know it works really
well. So you can’t try to chew more than one piece of gum, two, three pieces of gum
that gives a lot of chewing. You might try some crunchy foods some chewy foods
in the morning. Drinking from a straw. Those kind of things. Different savory
tastes that work as well. And then we might also work on in the morning like
doing some exercise some heavy work. So you prep your body in a way to get that
calming those calming neurotransmitters up there to your brain so that you’re
okay. You know for me today it helped me to go for a run this morning. I knew I
was going to speak and I was like I’m just gonna do it and get it out of the
way. So that helped you know to remain to be calm and it really does work. Then you
can also you know we might do some different things throughout the day.
And some people have a hard time going to bed at night. I’m one of those people
that my brain just does not shut off very much. And so some you know with kids
what we do sometimes is like a weighted blanket. And I don’t know if you guys
have ever heard about that but we will actually use those to kind of give that
deep pressure touch on your tactile and motor system to calm down. You might
think of listening to music. They always say that in terms of light, like if
there’s a light on I think the wattage of the bulb when they
do the sleep analysis is that it has to be four watts or below to not disrupt
your circadian rhythms. So that’s not very much right. So if you think about that we disrupt that like all the time. You know
so that’s a good one too. These are some resources that work pretty well. This one
is you know I would use it as an adult for it’s a really it’s an anxiety scale.
And so it has cards and it has situations that you could read and look
at and then rate on a 5 scale. And if you’re not sure what makes you anxious
you could actually do this with yourself or with a therapist. And the ones that
you get on the 4 & 5 you know you want to be aware of. And then you know okay
those are some areas I can work on. And then we would work on coping strategies
with that too. This one is kind of related to an anger management thing and these
are used this one particularly is used with kids with autism a little bit or
adults. And this program is a CD and it just gives the color-coding of when to
slow down when to stop. And so you could you know I like it for the color piece
because then you could rate what issue you had. You know whether you felt it was
a green which is okay whether you felt like it slowed you down or if it was too
intense and you just couldn’t handle that
situation. So it might give you some increased awareness. And here’s another
program to about just kind of helps you to figure out where you are. A lot of
times when more stressed out we’re not able to verbalize in that moment. I mean
how many times have you been stressed out and somebody says we’ll just calm
down what’s wrong can’t you just tell me. No
way you can’t because your autonomic nervous system is going crazy. So
sometimes using having a visual thing right there to say I’m right here. And
then you know have an agreed-upon plan that maybe there’s no talking when I get
there. And you can use a sensory strategy or something to calm down.
So let’s move okay so we’ll talk about executive functioning skills. And this is
just the definitions of them. That you know our working memories the ability to
hold the information. When we get stressed out we can’t hold the
information there’s no way. So we you know we need to keep our stress levels
down the best way we can and that will help our emotional control and that will
help us initiate tasks and give that sustained attention. So planning an
organization occupational therapists work with that a whole lot so we may
work on ways to sequence tasks using different cue systems or things like
that if you guys have troubles with any of that. We also help with time
management and for big projects and those kind of things we also look at
problem-solving goal-directed activity and flexibility. A lot of times it’s
really easy to get hung up when a mistake has happened and you know not
really know how to make it different. And so sometimes an outsider looking at it
can come in and say hey have you tried it this way? This might be something that
would work or you guys can come up with the idea together through therapy. You
know they’ve been saying that it takes five to seven repetitions to learn
things. Some of the people I work with it can take more. I don’t think the number
much matters but it’s how much how long do you feel like you have to repeat
something before you’ve got it. And what’s the best way to learn it right.
Because we all know we learn differently. So when I teach like a motor task and it
might actually be the motor task of you know cooking something or whatever. You
sometimes it’s ten repetitions to get it into that long-term memory. So
everybody’s different it’s just wherever you are on that. And we do a go plan do
review model a lot of times where you think about how you’re going to initiate
it, what’s the plan what are the steps you need for it, and then how are you
gonna actually do it carry it out. And then the review part is where you kind
of think well was that successful did it work very good. If it didn’t then you go
back and you revise you know. And that’s that’s a real cognitive based way to
look at executive functioning skills and it works pretty well.
But sometimes it’s not the best way. So what I do sometimes is I do video
modeling. Have you guys heard that term very much? So that would be where if say
I wanted to teach a kid or somebody how to tie a shoe that’s a really hard thing
to learn. But just as a simple example I would video that and then I would have
them watch it and then they would practice it. I might video them doing it
in a slow manner or something like that. But if you and I would pair the auditory
with it so that you would be more successful. There’s a lot of math of
strategies out there for executive functioning. You know for driving
directions I don’t know where we’d be without the map apps. Because those are
so helpful. And making lists works pretty well, do you guys use anything like that
already at home? Okay. And do you have special ones you like that you want to
share with anybody else? Uh-huh. Gotcha. Okay. Perfect. Nice. Yeah. Yeah. That’s great. Yeah
sure. Yeah, that’s awesome yeah that’s really good. We have this is just a
folder system that I’ve done and it’s get ready what are the things I need to
get ready sometimes I have to organize myself like this um. Just because that’s
what works the best. So I’ll say what do I need to get ready
okay this is the do part these are the steps I need to do and then Oh is it
finished okay great and then when it’s finished it’s done right. And you know it
does feel good to do a little check off with that. The other things you can do is
set up alerts on your phone. You can have Siri you know tell you
things it works really good. Here’s some executive functioning apps that. This one
is just a fun one to assess attention and it’s a game related that you can
play. Mind mapping is like the webbing when you have say you have to make you
know you want to write some things down or you need to write a project and you
know you have that first part of it about like say going on vacation okay
well where did the options. So you might do a map of it. And there’s a software
program additional to this it kind of makes it into a web design. So you can
put your ideas there. And one of them is called inspiration and it works pretty
well for that. Absolutely do undo it now it’s oh the slide before. Yep you betcha.
I use a lot of color coding too to help organize myself and others. It’s
pretty much whatever works. So how’s handwriting in that kind of
stuff do you guys have a hard time with writing stuff or do you type fine
everything’s great? There’s some different things that you can do
different apps you can get if there’s any issues with that. There’s assistive
technology that you could contact per state that can help you with that. And
those people are just brilliant with what they know. So those that resources
are for you and then they have some financing options as well. So I put those
in there and you guys will have this whole PowerPoint online too you can get
it as well. And then keyboarding being able to type efficiently is always
helpful. So that’s for that. And then does anybody
use dragon speak? Where you do speech to text where you can type in. And have you
trying yeah? Okay. It’s not too bad I mean you have to articulate pretty well what
you want to do and then you have to actually do a pause because if you do
this run-on sentence it’s just gone for like four paragraphs. So it takes some
learning to do but it’s actually pretty good. And you can go on
I think it’s Google yeah and you can just click you can get on google right
and open up on a Google Drive and click on the microphone and then speak it. And
sometimes you know that’s nicer to get your thoughts out if that works too
so. Just thought I’d open those, yes ma’am. Yeah I’ve got that in there yeah yeah
definitely we’ll talk about that too. There’s some reading supports too now
Capti as a thing. It’s an app that they just designed and you can pretty much
take anything and make it auditory. Anything at all. So it could be it kind
of makes it into a podcast for you so that’s there’s a YouTube on it as well.
So that’s a pretty good one I don’t know it if you’re familiar with and it’s
available on iOS and Android. And your computer. So either way we use sometimes
with spelling if spelling is an issue we’ll use co-writer and that will give
you word prediction to be able to predict the spelling the words that you
generally use if you type them in and that kind of stuff and grammar only does
that as well. So Skitch is a nice one that I use and
teach mate. Those are visual apps that you can take a picture of say how you
want something to be organized and then you’ll have the picture on your iPhone
or your computer and then you can circle the key things. Like say you want to
organize your spices but you always forget what they look like. You know how
it looks like when it’s organized. You could do that and take a picture of it
when it’s organized and then I always forget to put things back in the same
spot does anybody else do that? Okay. So then I have a daughter that comes over
and she’s really good about that but I am NOT. And so then I need to take a
picture of it right so oh this is where this belongs this is where it goes and
then on my picture I can circle oh I always seem to forget the oregano it
doesn’t go up here in this corner it goes down here. And you can actually cure
yourself you could even put a picture by the cupboard where it is so you know
what it looks like. And I’ve done that as well. Here’s some more apps for you guys
that worked really well. Different things like that for you. Did you guys want to take pictures? And then here’s the cool smart pens that
indeed have you used that smart pen yourself? Yeah everybody oh you do. Do you
want to share anything about it? Oh you bet. Mm-hmm. Nice. Ah. Oh nice. Great. Wow that’s great. That’s awesome.
They have an another one – that’s 142 hours and that’s just a YouTube video
but they’re very cool. Definitely. So some visual spatial
organization strategies. You know we talked about labeling. I always
talk myself through tasks, I don’t know if you guys do that but that helps.
Practice it. You know if I do a video if I need to I’m working with someone and
we take a video I can’t expect that that person would be able to look at the
video and and remember what we did. So I will have them practice it immediately
because that’s really helpful. There’s an app remember the milk app that works
really good. So those are just some extra ones. And sometimes you know I don’t know
if it’s easier for you guys that you’re probably it’s probably individual base
to learn things part-to-whole or is it better to learn the whole thing?
Everybody’s different. So you might just want to see what’s best for you. You know
and then once you know that you know how you need to teach yourself things as
well. So these are just again some of the sensory things that we work on as well
kind of in order. And in terms of health and wellness one of the things
you know spending time with friends and leisure activities. Restorative yoga is
really good to help calm and get your stress level down if you need to. Tai Chi
is a really nice calming exercise that you can do. And then there’s all this the
strategies about mindfulness as well. And being able to you know get in your quiet
place whatever that is for you. And do that kind of thing and crafts and
hobbies as well. And just whatever you’re passionate about. I mean I think that
sends the good brain chemistry to our brain. Which is what we need to do
overall. And they wanted me to talk about Osteoporosis. So
I’ll go through that really quick. It’s basically you want to do some aerobic
exercise with moderate intensity and resistance training to build strength. And the reason behind it is for balance training to reduce the risk of falls as
you get older. And that’s one of the biggest ones so. We always you want to
keep active and if you can. My mother and father moved in with me
and my mom’s 81 and she falls a lot. And so it’s made me really appreciate this
that we should have done this years ago. You know because it’s a little hard when
you’re at 80 and trying to do that so. Those are some things that you can do
just keep and I you know I texted my kids and I said we should all keep
moving. You know so I think when you get sedentary is when that happens as well.
These are some exercises things that you can do dancing ,swimming, tennis ,the Wii
has some great things, walking, water aerobics, those kind of things. And then
they say they want you to do 30 minutes a day five times per week. But that might
be unrealistic to everybody’s schedule. So being able to you know two to three
times a week might be good. And then this some people were asking about the
thera-band and are you guys familiar with that those stretchy bands. So you
can get them on Amazon or where or through a therapist if you work with
them or an athletic trainer. And what I would recommend is yellow or red are the
easiest and you can start with that. And so they’re based on resistance. So you
wouldn’t want to get like the blue color or the black color because you can
hardly move those. And that’s contraindicated with Turner’s. So the
green would be the most that the highest level that I would go up on. And then you
can work with a trainer or physical therapist or occupational therapist to
help you with that. Balance exercises you know squats like
raises those kind of things. And my daughter said you should talk about this.
Eating by you know you want to eat vitamin D. Things like lean meats, fish,
legumes, eggs, vegetables, fruit, and dairy, calcium, and protein. Because that’ll help
keep your bone growth really good. And when you get older you have to think
about these things. I don’t know if you have to think about it now. But it’s
always good to have it in the back of your head. If you need to you know think
about putting bars in the bathroom or just the non-skid rubber mats. Most the
falls when you get older occur in the bathroom like ninety percent. So if your
bathroom is hooked up he’ll be good to go.
Just when you get later. So Pilates is also a good thing to try. And we do a lot
of that. And we work on alignment and those kind of things. And here’s a video
for you guys. This got some really calm some nice not resistive exercises but
it’s just relaxation but it also works on your core muscles too. So you might
think as an adult to refer out to other professionals dietitian registered
nutritionists are really great for healthy eating recommendations.
Psychologists for mental health counselors and they have executive
functioning coaches now. And I would just if that’s anything you want to look at
just see if you work with them if that works for you. And then of course
occupational therapy and physical therapists can help you with mobility
and exercise or personal trainers. And here’s some books for you guys. This book
is about it’s for adults with sensory sensitivities. What in it has a really
nice read and it helps you kind of figure out where you are is that a big
deal is it not a big and you know what you can do about it.
And this is another good one too. And this book is my favorite book on the
planet. It is written by a neurologist and she
has a lot of patient stories about people that are on a lot of medicine. And
they had increased stress levels and they had that stress chemistry that we
talked about. That was always evident in their lives and they couldn’t do things.
And how they used sensory and mindfulness strategies to calm down and
their reduced their medicine intake. So it’s just a great book. And it’s not too
technical to read it’s actually really good. So I would recommend that and oh I
have that twice. And then this is another book about Georgia DeGangi is an
occupational therapist. And it’s about how you can become dysregulated as an
adult from a sensory standpoint and what to do about that. And this is a really
good book and I think they have a DVD too and it’s written by a physician how
to do yoga and in a meaningful way that’s not gonna be bothersome. This lady
Sara Ward. I don’t know if you guys know about her have you heard about her at
all? She’s amazing and she’s a speech therapist. And she originated in Colorado
but she’s back east now. She has a website in this efpractice.com. She does
conferences and she has amazing techniques that you can use to help with
executive functioning she does a lot of color coding. She uses a power clock to
think about how you would start an activity how you would where do you need
to be in the middle where do you need to be at the end. And those kind of things
so and there’s more this is a website for adults for sensory issues as well.
And that’s a video for you guys. So any questions or anything? Yeah go ahead
Ah, yep. I don’t know your name. Oh I can do you want me to put that back
up for you so you can, you betcha. Let me get there and are there any more
questions? And uh-huh. Yes it will. Yeah. We’ll give well I’ll put handouts
with it too. I just need to send them to Shawn. Yeah
definitely any other questions or anything? We can do that yeah. Yes. Yeah. Yeah. I’m do you getting them
tweets. Yeah you want to keep your knees you
know everything at 90-90 if you can so if you are up here on a chair you what I
would do is make sure that your hips are at 90 your elbows are at 90 and your
knees are at 90 and like this isn’t it so good for me because my feet are
dangling. And so for you guys you could do a foot stool as well. Some you want to
look at your wrists that they’re not always an extension like this. Because
that all causes numbness and you can get carpal tunnel. So you could actually I
think workplaces have to have someone do that assessment they do yeah. Okay. Yeah. The other. Yeah and look at
this computer monitor – if it’s and once you need it to be at eye level if it’s
not put a phone book or something underneath it. Look at that as well take
frequent breaks get up and walk around and then come back. Did you have a
question? We do. There’s occupational therapists that
specialize in driving that are certified in it. And so we can work with you on
that and we can do your tests and help you to drive. Just yeah oh yeah these
ones I just wanted to show these really quick. This is a thing you guys can come
up and try. It is a it’s called the e/m wave 2. And what it does is you can see
it’ll have a purple light right here and when you do your you put your finger on
it it will on this part down here it will tell you if you’re stressed out.
Look I am. So because I had to speak today right. So but look it’s going
purple so then it teaches you right to do mindfulness breathing right and
breathe in and breathe out. And it’s starting to go purple so that
is a really good thing. Now sometimes when you have anxiety and you’re like
I’ve got to calm down I’ve got to calm down it when you see it to be red you’ll
be really like I can’t look at this. So I’m going to pass that around or you
guys can come up and try it. There’s um and it’ll hook up to there easy to buy
online you can hook it up and hook it to your ear and it’ll just automatically
take your autonomic nervous system function to see where you’re at. Okay
another one is called PIP and it’s the same thing but you have to pinch it. And
then they all have apps that they work off of. So you could actually track your
stress level. It’s kind of interesting to just do it. Our workplace at Children’s
it cracks me up it’s a very stressful environment and they have these for the
people that work there. Because we all get stressed. Yeah so this is the same
thing it’s called a pip. And you can track yourself over time right. Then if you’re working with an occupational therapist or a psychologist
they can say oh well what happened Wednesday man you were off the charts.
You know. And here’s another one called Spire. And you it gets charged right here.
You actually put this part next to your skin. And it’ll just you can wear it like
inside your bra or something like that or on your belly. And then when you are
stressed out you’ll get an alert on your phone and it’ll say breathe. Okay you bet
thanks so much. Oh you’re welcome.

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