PLEASE READ!
Please note that The Post Concussion Podcast has been closed for new episodes as of early 2024. Concussion Connect is also closed.
Thank you to everyone who was so supportive over the years and I hope these episodes continue to help others as they come across them!
I have set on a new venture (with a pen name - Izzy Barry) you can learn more about here
https://izzybarry.substack.com/
--
When the world fades to silence after a brain injury, finding your voice again is a monumental victory. Welcome Kelly Tuttle, a neurology nurse practitioner, who brings her expertise and personal experience to illuminate the often dark and misunderstood path of recovery. Kelly's story, beginning with a life-altering car accident, serves as a testament to the resilience required to navigate the complex world of traumatic brain injuries.
Have you ever felt as if your brain's battery is perpetually low, even after the simplest tasks? In this conversation, we unpack the elusive beast that is neuro fatigue, discussing how the brain's need for energy can turn everyday actions into a marathon. We then dig into Kelly's book 'After the Crash' with a focus on getting back to work after your concussion/brain injury!
Find show notes, transcript, & more: https://postconcussioninc.com/podcast
Learn more about Kelly & After the Crash: https://kellytuttle.org/book/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Bella Paige (00:02):
Hi everyone.
I'm your host, Bella Paige, andafter suffering from
post-concussion syndrome foryears, it was time to do
something about it.
So welcome to thePost-Concussion Podcast, where
we dig deep into life when itdoesn't go back to normal.
Be sure to share the podcastand join our support network,
Concussion Connect.
Let's make this invisibleinjury become visible.
(00:24):
The Post-Concussion Podcast isstrictly an information podcast
about concussions andpost-concussion syndrome.
It does not provide norsubstitute for professional
medical advice, diagnosis ortreatment.
Always seek the advice of yourphysician or another qualified
health provider with anyquestions you may have regarding
(00:45):
a medical condition.
Never disregard professionalmedical advice or delay in
seeking it because of somethingyou have heard on this podcast.
The opinions expressed in thispodcast are simply intended to
spark discussion aboutconcussions and post-concussion
syndrome.
Welcome back everyone.
It has been a few week break,which I definitely needed, and
(01:08):
if you participated in ourholiday challenge on Concussion
Connect, I hope you had fun.
Now I am so excited for 2024.
We have so many things comingup in the next year that I am so
excited about to share witheveryone as they come up, and
you know our next break probablywon't be till the summer, so I
hope you are ready for a lot ofwonderful episodes with
(01:30):
wonderful guests and, speakingof one of those episodes, let's
get into one now.
Welcome to episode number 126of the Post-Concussion Podcast
with myself, Bella Paige, andtoday's author and guest, Kelly
Tuttle.
Kelly joined the head injurysurvivors club, as she describes
it, in 2015.
The night, another car pulledin front of her as she was
(01:50):
driving.
It wasn't until three monthslater that she realized that
something was seriously wrong.
Kelly's concussion marked thebeginning of a new life and
personal journey ofself-rediscovery.
A neurology nurse practitioner,kelly has a front row seat to
observe patients struggling withmany of the same things she
experienced in her recovery.
She strives to share her copingstrategies and tools and help
(02:14):
others continue to work andstudy while they heal.
Kelly wants TBI patients toknow there is hope.
You got better and they can too.
Kelly is the author of Afterthe Crash how to Live Life After
your TBI.
Kelly Tuttle (02:28):
Welcome, kelly.
Well, thank you for having me,bella, and I'm one of your
really big fans.
I've been listening to yourpodcast since 2021.
I can't tell you how excited Iam to be here with you today.
Bella Paige (02:42):
Oh, thank you, it means a lot.
It's always interesting when Ihear from people who are like,
oh, I've listened to you fromwhen you started and I'm like
really, I'm like that's kind ofcool because it's been a long
time now In January it's beenthree years, like of course
there's been breaks on thepodcast as well, but yeah, it's
been three years this January,which is kind of wild.
But let's get to you.
(03:02):
And so do you want to give us alittle bit of a background on
your brain injury experience?
Kelly Tuttle (03:08):
to start, I joined the Brain Injury Club in 2015.
I had been in a car accident.
I was driving down a rural roadand another car pulled out in
front of me and I ended upt-boning them and I thought I
would walk away and shake offthis car accident, but three
(03:28):
months later I found that wasnot the case.
Bella Paige (03:33):
So often that this is happening, where people are
like, oh, I thought I'd bebetter, or did anyone tell you
this might not bounce back rightaway.
Kelly Tuttle (03:42):
No, so I didn't really realize what was going on
.
I actually went to work thenext day which is crazy in
hindsight and my nursingcolleagues were very sharp and
caught on that something wasgoing on and then needed to be
addressed, and so they exactedpromises to see my primary care
(04:08):
doctor the next day.
And I did, and fortunately shediagnosed me with a concussion,
but she left me with the beliefthat I would be better in two
weeks.
And that was not the case.
I tried to go back to work andmy own and my you know, back to
(04:30):
being a mom and training inmartial arts and so forth, and
it all was a big struggle, whichnow I can look back and see
what was truly going on, and Iwas like I'm not going to be
better.
Amongst the trees you don't seethe forest right.
So I was dealing with a lot ofheadaches and I had horrible
whiplash, neck pain and justweird things were happening.
(04:55):
I wasn't putting two and twotogether, like I was unable to
listen to music anymore in mycar because it would make me
sleepy.
I was unable to exerciseanymore, work out to get any
shorter breath in two minutes,and just really bizarre things
that you normally wouldn'tconnect with a head injury.
(05:16):
And then it all culminated tothe point of pushing myself
where I fell asleep at the willand drove off the road and
almost hit a tree.
So again, not thinking clearlyand trying to get back to life,
I was like, well, I guess I justneed to take a nap in between
(05:38):
my commute.
I had an hour long commute oneway.
So that was my resolution notcall my doctor, not seek care.
I just took a nap dangerouslyon the side of the road for a
half hour and then I drove home.
And so then I met with acolleague of mine who was a
(05:59):
nurse practitioner, worked inneurology, and she was curious.
She was how are you recoveringfrom your concussion?
And I told her you know thisand that, and then I mentioned
falling asleep at the wheel andshe's like what?
Bella Paige (06:14):
Yeah, concerning.
Kelly Tuttle (06:18):
That's not good.
So she really like I was justtrying to make it through, I
think it was just so, whateverit took to get from A to B, I
was gonna do it and not reallyscrutinize the consequences.
And so she was the one thatsaid you need to go back to your
(06:41):
doctor, you need to get head CT, you need to see a PMR doctor
and I'm all PMR doctor.
What's that?
Physical medicine rehab?
Well, I had known them asphysiatrists, so I listened to
her advice and shortly afterseeing the physical medicine
rehab position, I started goingon to the correct road of
(07:04):
healing and getting better.
Bella Paige (07:06):
I'm glad that you've had that friend.
Kelly Tuttle (07:09):
Me too, because a lot of people don't.
Bella Paige (07:12):
No, it's actually.
I kind of love that we'rehaving this conversation right
now, because when this episodecomes out, it'll be in the new
year of 2024.
And in the new year we'reactually launching a charity
that is designated and dedicatedto changing that information
you get when you get aconcussion, when you get a mild
traumatic brain injury, so thatyou get a piece of information,
(07:34):
a link to a website, something.
When you walk out of yourphysician's office or an ER
telling you that you know thismight not go away and if it
doesn't go away, these are whatyou should actually be doing,
not this go lay in a dark roomold ancient advice that is not
recommended anymore, but youstill see and I hear about it
all the time.
So definitely that is great,because that is what we're gonna
(07:57):
be working towards for thefuture, actually with the
charity launch this year.
Kelly Tuttle (08:01):
I think that sounds like an awesome idea.
Yeah, thanks.
I think that's great.
You came up with that andyou're putting it together.
How wonderful.
I can't wait to see it when itcomes out.
Bella Paige (08:10):
Yeah, because it's just so common.
We have people saying, oh, Ifound out six months later it
was my concussion, like it'ssuch a common problem that
nobody told them.
Yes, you know this, it's yourbrain, because they're like oh,
you don't connect the dots.
You know, in human nature, likeyou've proved it, you just keep
ignoring things and keep, youknow, working with your symptoms
(08:32):
and carrying on.
But you know that only worksfor so long, and so you've
written a book which I actuallyhave with me.
And so what do you want to tellus?
Why you took the time to writeafter the crash?
Kelly Tuttle (08:44):
Yes.
So my, you know, like I said,my goal was I really wanted I
will.
I really needed to get back towork.
I was a single income earnerand I brought in the benefits
for the family.
I really wanted to get back towork, but, you know, I wanted to
get back to my regular life too, and so I read all these really
wonderful books like 365 tipsand tools to brain injury
(09:09):
recovery I forgot the completetitle, but it's on Amazon and
just remember 365 tips to braininjury, you'll find it.
And then brain lash, like withlash, but brain lash.
These are really great books,for you know someone who is
trying to recover from theirbrain injury.
(09:31):
And I had those books and theywere absolutely wonderful, but
they were like generalized, likein every aspect of your life.
What I really knew that thattime was I needed how to get to
work, how to be at work, how tosupport my brain at work, and it
took me years to put together atool bag of things that I even
(09:53):
still use today to help me be anefficient employee and maintain
my focus and attention andminimize any drain on my limited
brain energy, because I do havecognitive fatigue, and so
that's why I wrote that book.
I really wanted to nail thatniche and make it available to
(10:17):
anybody out there like me whowants to get back to work.
And then the other thing, too,was I read a lot of other books
that were really good, and thereason why I was reading all
these books what I was lookingfor was hope.
I needed someone to reassure methat things were going to get
better.
Not that I was going to gethealed or there was something I
(10:41):
could do to get back to my oldself, but I just wanted hope to
know that things will get betterover time, and so that was
really important to me.
In writing, my book is to be acompanion of hope and guidance
to the reader and the braininjury survivor.
Bella Paige (11:02):
I think it's so important because that work
piece, the career piece, is huge.
I hear about it constantly inour support groups about someone
trying to go back to work,trying to make it at work, going
back to work and then having tomake adjustments or going back
and it being too much and thingslike that.
Or what do you even ask for atwork?
(11:25):
How do I make work a place thatI can be in?
It's something we hear aboutall the time.
Or how do I know if I'm ready?
Kelly Tuttle (11:32):
to go back to work .
Bella Paige (11:33):
I hear that a lot as well.
Kelly Tuttle (11:35):
Yeah, and I went back to work way too soon, way
too fast.
My book is like I just wantpeople not to have to make the
mistakes I made and I think thata lot of those mistakes really
kind of were preventable speedbumps to my recovery.
And so anyway, I was justhoping to make somebody else's
(11:55):
recovery more smooth than mine.
Bella Paige (11:58):
Yeah, I think that's so great because there's
so many challenges with all this, and so we are going to take a
quick break.
But before that, what do youthink your number one tip for
getting back to work could be?
I know there's a lot of them,but if you could pick one, what
do you think?
Kelly Tuttle (12:12):
Oh wow, that's hard, but I think the biggest
tip if I only had a snippet oftime to mention it would be to
go to askjanorg, which is a jobaccommodations network, and that
is where people with braininjuries and symptoms from brain
injuries can go and findreasonable work accommodations
(12:32):
that they can ask for at theirplace of employment.
Bella Paige (12:36):
I think that's fantastic and we are going to
talk a lot more about your book.
I have a few questions aboutparts that I read that I really
want people to hear about that.
We will be right back.
We have so many five starreviews coming in for the post
concussion cookbook on Amazon.
This cookbook was something Ihad been looking for.
It pairs nutritionalinformation specific to
concussion recovery with tipsfor symptoms, and the recipes
(12:59):
are delicious.
My husband and teenager lovedit too.
Very grateful to have thisresource.
If you bought the cookbook,make sure to leave a review and
if you haven't, make sure youfind yours on Amazon today.
I'll do the link in our episodedescription.
Welcome back to the PostConcussion Podcast with myself,
Bella Paige and today's guestand author, Kelly Tuttle.
(13:21):
So we've been talking a littlebit about your experience and
your book so far, and so thereis one component of your book
that I wanted to ask you aboutbecause I think it really
connects with survivors on likea day to day basis, and that's
your Starbucks versus Star Trekcomment and story.
And so you know a lot of timeword finding, grasping what
(13:43):
people are saying.
All these things are aneveryday challenge people have.
It makes them really nervousjust to leave the hub because
they're like well, you know,sometimes I take too long to
even think, sometimes I can'tcommunicate, sometimes I don't
know what people are saying.
So do you want to share thatstory with us today?
Kelly Tuttle (13:59):
Sure, so that cut well.
Number one I love Star Trek.
I just had to have it in mybook.
I love comics and Star Trek, andthat came up because that day
after the car accident, when Iwent into work and the nurses
and I were gonna take a breakand I said, hey, let's go to and
(14:19):
get some Star Trek.
And they were like what?
And I'm like, yeah, let's goget some Star Trek.
And they're like Star Trek,you're saying Star Trek.
And I was like, oh, starbucks,starbucks.
And they're like no, you saidStar Trek.
And that's when I got thelecture.
You better see your doctor,that's so.
That's kind of like where thatcame from.
(14:39):
But one day, you know, I stillstruggle with my speech and the
things I say, especially when Iget tired.
Of course, it gets worse for uswhen our batteries are getting
really super low at the end ofthe day and Early into my
recovery it was, it was reallyrough.
I there were some like medicalterms that I had been able to
(15:01):
say Easily and multiple timesthroughout the day and I
couldn't say him again.
So what I learned I?
You know, I just found sometips and tricks and one of them
was if I was going to give areport to a Physician or another
colleague and that word wasgonna come up and I knew that
was my word I struggled with,then I would write that word
(15:22):
down and I would go and meetwith this person and then when I
Got to that word, I would lookdown and for some reason being
able to see the word on paperHelped me say it out loud.
And then I would also rehearsethe word several times before I
met the person to say it overagain slowly.
So that's kind of how Icompensate.
The other thing is, you know,when I started working I didn't
(15:45):
want people to know I had abrain injury, because some
people are just, you know,managers or co-workers aren't as
supportive as you would hope,and so for the first, you know,
five to six years after my braininjury, I hid it.
So whenever I struggled with aword, I would just say you know,
I'm having them, excuse me, I'mhaving a blonde moment.
(16:06):
You know you're talking to ablonde, or I need more coffee,
or you know Something to thateffect, to kind of smooth over
not being able to be able to saythe word, but with family and
friends who I feel safe andcomfortable with they.
Let me struggle, try tostruggle to try and say the word
so that I can get those brainconnections going and they're
(16:29):
very Supportive that way.
And the other thing too is Iread a book.
It's called I Will Carry theFork Another brain injury
survivor, and she talks abouther struggle with word finding.
What she would do was she wouldsing to songs, the lyrics of
songs she knew, and she wouldsing them over and over until
(16:49):
she would get every single wordright.
And that helped her too, and Idid that too and I it helped me
and you know, and it's, it's afun little speech therapy
Exercise you can do.
Bella Paige (17:00):
Yeah, no, I like it .
It's a good story and it is,it's true, finding that Boundary
of like, do I want to tell themor do I not?
Sometimes it's not always worthit.
I've went through this theother day at the gym because I
started working out recentlyagain and it's like, do I
explain that, like why I can'tgo for a sauna and things like
(17:20):
that after, because, like, Ihave pods and all these things
and my body?
It's like a really bad idea,bad combination.
Or do I just say, like I'm notin the mood, like, do I explain
the health piece or do I not?
It really depends on who I'mwith, depends on who is around.
Like, sometimes it's worth it,sometimes it's not, and it's
totally up to you and your owncomfort level.
I don't believe like sometimeswe're very oh, you need to tell
(17:43):
people and make it lessinvisible.
And I get that piece.
I get the advocacy piece andthe awareness piece.
But there's also the piecewhere, like you, there's you.
So it's like if it's gonna makeyou really uncomfortable, it's
gonna make you have a hardertime.
Maybe you're just not in aplace to share yet because, like
I go back in time where I wouldhave never told anyone that I
(18:04):
was struggling.
Like I just say I had a headache.
But I didn't tell them.
Like I had a headache and itwas too light and the smells
were bugging me and it was justlike I felt like I was gonna
puke and like all these things.
I would just say I have aheadache, because everybody kind
of thinks they know what thatmeans, except for Concussion
headaches or different level ofheadaches, you know.
And then eventually I got morecomfortable with just telling
people, like you know, I havethis health condition and it's
(18:25):
part of my life.
Like I went to a newhairdresser a Few weeks ago and
I had tears streaming down myface because I have dry eyes and
so I was like, don't worry, I'mnot crying, it's just like.
But before I would have neversaid anything, I would have just
probably tried to dab them awayand like not had the confidence
to share.
So you know there's differentpoints.
Kelly Tuttle (18:44):
Work is a totally different place where you know
you don't want people to thinkless of you because they're
uneducated about brain injuriesand don't understand and things
like that right and you know I Italk a little bit about this in
my book that the advantage ofhaving a brain injury is that it
is an invisible disability andagain that that's a double it
(19:06):
short, because the disadvantagesIs that it is invisible.
And it was one of the questionsI had was should I let tell my
employer or my colleagues orwhatever?
You know I, in my book I reallyencourage my reader to think
well, what's the goal of tellingsomebody that you have a brain
injury?
What would be the goal?
(19:27):
What is the outcome that youexpect or what you want?
And that kind of helps youdecide to make that decision.
Do you want you know or hopethat your colleagues will be
sympathetic and that's why youwant to share it?
That may or may not happen.
Or you know, things have reallygotten tough at work with the
expectation in the increase inworkload and now you're even
(19:52):
with your compensatory tools,you're struggling to stay on top
of your work assignment.
Then you may want to thenconsider asking for work
accommodations and just reallyquick, on a tangent, like when
you ask for work accommodationsyou don't have to tell them you
have a brain injury, but you dohave some of your symptoms, and
(20:12):
here in the US you have to havea medical note too.
So just throwing that out justfor information.
Bella Paige (20:19):
Yeah, it's super important and for me I know like
accommodations for me wereschool and so, you know,
sometimes I always felt like, oh, do I need these?
But they made it so I couldsucceed, and so you have to
remember that too.
And there was one other part ofyour book that I want to talk
about because I've heard a lotI'm sure you've heard it a lot
(20:40):
and it's that you are too tiredbecause you sleep too much.
Oh, my gosh, I hate that.
Yeah, because you sleep all day,it's making you more tired and
like, don't get me wrong, if Iget in a spell of sleeping all
day, I have chronic fatiguesyndrome, so it takes over and
like, if I let it, like if Ihave a few days where I like do
less and I sleep more, well, Ikind of can get in the rhythm of
(21:03):
that because I have chronicfatigue syndrome, because I have
a health issue.
Do you want to talk more aboutwhy you don't like that comment,
as you reacted perfectly to it,and I get how you reacted to it
, because sometimes people like,oh, you're sleeping too much,
like that's why you're tired,and it's like I can't even get
up, I can't open my eyes like Ican't function.
(21:23):
I don't think you'reunderstanding, like my fatigue.
Is you falling asleep at thewheel?
Like it's not what people areexpecting and it's not what they
understand.
So I'll let you take it fromthere.
Kelly Tuttle (21:34):
Yeah.
So there's a really bigmisunderstanding about neuro
fatigue, and neuro fatigue couldbe emotional fatigue, physical
fatigue, cognitive fatigue, andit is real and it is serious.
Like I said, I got shut downwhile I was driving.
My brain said this is it,you're done, and that's what
(21:56):
neuro fatigue will do.
If you push yourself too hard,you will find your face flat and
you'll plate a spaghetti.
You know, at the end of the day, your brain will just shut off.
Keeping in mind that the brainuses 20% of our energy, that's a
lot, and I did read somearticles when I was researching
(22:18):
my book and I ran across anarticle that talked about how
the brain likes to run, to runefficiently.
And if it doesn't runefficiently, like a car, if you
have your car and you don't keepair on the tires, you don't get
it oiled and lubed, you don'ttake care of it then, it's not
going to run as efficiently.
right, it's going to need moregas to go the same amount of
(22:40):
distance compared to a brand newcar that is well taken care of.
So these researchers looked andfound that the brain likes to
run efficiently.
Well, if you have any brainissues, either from a stroke or
traumatic brain injury orParkinson's, then your brain
doesn't run efficiently.
(23:01):
And so for you to do like toget dressed, it takes you more
energy to do that minimalactivity as compared to someone
who doesn't have those brainissues, because their brain runs
efficiently so it's not suckingup all your energy just trying
to get through the day.
And this fatigue is neurofatigue, is different than
(23:26):
regular fatigue because, despitethem on a sleep and rest and
you get yourself, the energyreserve is never 100% filled.
Bella Paige (23:38):
So for myself, after I got diagnosed with
chronic fatigue syndrome, theylike show me this bar and it's
like you have cortisol levels ina normal person, like dip down
as they at the end of the dayand then shoot back up in the
morning and then kind of likedive down by the afternoon.
That's kind of like thisfluctuation of energy.
But I don't have that.
(23:58):
There is no reset.
So for me instead it's like Ilive in this like kind of flat
line that just goes up and downand up and down and up and down
and up and down, versus likereally highs and like I do have
really low, as if I let thechronic fatigue kind of take
over, which I can get stuck in,but my cortisol levels don't
replenish in the same way thatsomebody else's do.
(24:18):
So it's more like learning howto monitor that and kind of
working with that and being like.
You know, for me I always liketo tell people do things when
you feel best in the day, if youcan.
Of course this doesn't work foreveryone, but if you feel great
at 10 o'clock at night, thenmake dinner at 10 o'clock at
night if you can, because it'sokay, like when you're healing
(24:41):
and you're recovering and you'rein that phase where, like
you're not going to work yet,you're not in a structured
schedule, maybe work with yourenergy, try to work with it,
being like I woke up at 3o'clock in the afternoon and I
had all this energy.
Well, okay, then do stuff.
Then you know you don't have tolet it go to waste those types
of things.
But you know you've shared alot.
(25:02):
I loved your book.
I think it's a great resourceand I think it's definitely
worth the read for all survivors, even ones that aren't just
looking forward to going back towork.
There's a lot of otherimportant components in it, and
so is there anything else you'dlike to add before we end
today's episode?
Kelly Tuttle (25:17):
Yeah, I'm really excited that my book is
unaudible too, because after ourbrain injury can be hard to
read and remember what you readand have the energy to read.
So it was really important forme to record my book for those
individuals so you can justlisten to it too if you just
don't have the energy forreading right now.
Bella Paige (25:37):
It's so important.
I love audible.
I lived on it until like just ayear to go, when I can actually
read books, but I just want tothank you so much for coming on
and sharing a little bit aboutyour book.
Well, thank you for having me.
Kelly Tuttle (25:48):
I'm like I said, I'm a big fan.
Bella, thank you for doing allthe things you're doing Need
more than just this podcast.
Bella Paige (25:55):
be sure to check out our website
postconcussioninc.
com, to see how we can help youin your post concussion life,
from a support network to one onone coaching.
I believe life can get betterbecause I've lived through it.
Make sure you take it one dayat a time.
Hi everyone.
I'm your host, Bella Paige, andafter suffering from
post-concussion syndrome foryears, it was time to do
something about it.
So welcome to thePost-Concussion Podcast, where
we dig deep into life when itdoesn't go back to normal.
Be sure to share the podcastand join our support network,
Concussion Connect.
Let's make this invisibleinjury become visible.
(00:24):
The Post-Concussion Podcast isstrictly an information podcast
about concussions andpost-concussion syndrome.
It does not provide norsubstitute for professional
medical advice, diagnosis ortreatment.
Always seek the advice of yourphysician or another qualified
health provider with anyquestions you may have regarding
(00:45):
a medical condition.
Never disregard professionalmedical advice or delay in
seeking it because of somethingyou have heard on this podcast.
The opinions expressed in thispodcast are simply intended to
spark discussion aboutconcussions and post-concussion
syndrome.
Welcome back everyone.
It has been a few week break,which I definitely needed, and
(01:08):
if you participated in ourholiday challenge on Concussion
Connect, I hope you had fun.
Now I am so excited for 2024.
We have so many things comingup in the next year that I am so
excited about to share witheveryone as they come up, and
you know our next break probablywon't be till the summer, so I
hope you are ready for a lot ofwonderful episodes with
(01:30):
wonderful guests and, speakingof one of those episodes, let's
get into one now.
Welcome to episode number 126of the Post-Concussion Podcast
with myself, Bella Paige, andtoday's author and guest, Kelly
Tuttle.
Kelly joined the head injurysurvivors club, as she describes
it, in 2015.
The night, another car pulledin front of her as she was
(01:50):
driving.
It wasn't until three monthslater that she realized that
something was seriously wrong.
Kelly's concussion marked thebeginning of a new life and
personal journey ofself-rediscovery.
A neurology nurse practitioner,kelly has a front row seat to
observe patients struggling withmany of the same things she
experienced in her recovery.
She strives to share her copingstrategies and tools and help
(02:14):
others continue to work andstudy while they heal.
Kelly wants TBI patients toknow there is hope.
You got better and they can too.
Kelly is the author of Afterthe Crash how to Live Life After
your TBI.
Kelly Tuttle (02:28):
Welcome, kelly.
Well, thank you for having me,bella, and I'm one of your
really big fans.
I've been listening to yourpodcast since 2021.
I can't tell you how excited Iam to be here with you today.
Bella Paige (02:42):
Oh, thank you, it means a lot.
It's always interesting when Ihear from people who are like,
oh, I've listened to you fromwhen you started and I'm like
really, I'm like that's kind ofcool because it's been a long
time now In January it's beenthree years, like of course
there's been breaks on thepodcast as well, but yeah, it's
been three years this January,which is kind of wild.
But let's get to you.
(03:02):
And so do you want to give us alittle bit of a background on
your brain injury experience?
Kelly Tuttle (03:08):
to start, I joined the Brain Injury Club in 2015.
I had been in a car accident.
I was driving down a rural roadand another car pulled out in
front of me and I ended upt-boning them and I thought I
would walk away and shake offthis car accident, but three
(03:28):
months later I found that wasnot the case.
Bella Paige (03:33):
So often that this is happening, where people are
like, oh, I thought I'd bebetter, or did anyone tell you
this might not bounce back rightaway.
Kelly Tuttle (03:42):
No, so I didn't really realize what was going on
.
I actually went to work thenext day which is crazy in
hindsight and my nursingcolleagues were very sharp and
caught on that something wasgoing on and then needed to be
addressed, and so they exactedpromises to see my primary care
(04:08):
doctor the next day.
And I did, and fortunately shediagnosed me with a concussion,
but she left me with the beliefthat I would be better in two
weeks.
And that was not the case.
I tried to go back to work andmy own and my you know, back to
(04:30):
being a mom and training inmartial arts and so forth, and
it all was a big struggle, whichnow I can look back and see
what was truly going on, and Iwas like I'm not going to be
better.
Amongst the trees you don't seethe forest right.
So I was dealing with a lot ofheadaches and I had horrible
whiplash, neck pain and justweird things were happening.
(04:55):
I wasn't putting two and twotogether, like I was unable to
listen to music anymore in mycar because it would make me
sleepy.
I was unable to exerciseanymore, work out to get any
shorter breath in two minutes,and just really bizarre things
that you normally wouldn'tconnect with a head injury.
(05:16):
And then it all culminated tothe point of pushing myself
where I fell asleep at the willand drove off the road and
almost hit a tree.
So again, not thinking clearlyand trying to get back to life,
I was like, well, I guess I justneed to take a nap in between
(05:38):
my commute.
I had an hour long commute oneway.
So that was my resolution notcall my doctor, not seek care.
I just took a nap dangerouslyon the side of the road for a
half hour and then I drove home.
And so then I met with acolleague of mine who was a
(05:59):
nurse practitioner, worked inneurology, and she was curious.
She was how are you recoveringfrom your concussion?
And I told her you know thisand that, and then I mentioned
falling asleep at the wheel andshe's like what?
Bella Paige (06:14):
Yeah, concerning.
Kelly Tuttle (06:18):
That's not good.
So she really like I was justtrying to make it through, I
think it was just so, whateverit took to get from A to B, I
was gonna do it and not reallyscrutinize the consequences.
And so she was the one thatsaid you need to go back to your
(06:41):
doctor, you need to get head CT, you need to see a PMR doctor
and I'm all PMR doctor.
What's that?
Physical medicine rehab?
Well, I had known them asphysiatrists, so I listened to
her advice and shortly afterseeing the physical medicine
rehab position, I started goingon to the correct road of
(07:04):
healing and getting better.
Bella Paige (07:06):
I'm glad that you've had that friend.
Kelly Tuttle (07:09):
Me too, because a lot of people don't.
Bella Paige (07:12):
No, it's actually.
I kind of love that we'rehaving this conversation right
now, because when this episodecomes out, it'll be in the new
year of 2024.
And in the new year we'reactually launching a charity
that is designated and dedicatedto changing that information
you get when you get aconcussion, when you get a mild
traumatic brain injury, so thatyou get a piece of information,
(07:34):
a link to a website, something.
When you walk out of yourphysician's office or an ER
telling you that you know thismight not go away and if it
doesn't go away, these are whatyou should actually be doing,
not this go lay in a dark roomold ancient advice that is not
recommended anymore, but youstill see and I hear about it
all the time.
So definitely that is great,because that is what we're gonna
(07:57):
be working towards for thefuture, actually with the
charity launch this year.
Kelly Tuttle (08:01):
I think that sounds like an awesome idea.
Yeah, thanks.
I think that's great.
You came up with that andyou're putting it together.
How wonderful.
I can't wait to see it when itcomes out.
Bella Paige (08:10):
Yeah, because it's just so common.
We have people saying, oh, Ifound out six months later it
was my concussion, like it'ssuch a common problem that
nobody told them.
Yes, you know this, it's yourbrain, because they're like oh,
you don't connect the dots.
You know, in human nature, likeyou've proved it, you just keep
ignoring things and keep, youknow, working with your symptoms
(08:32):
and carrying on.
But you know that only worksfor so long, and so you've
written a book which I actuallyhave with me.
And so what do you want to tellus?
Why you took the time to writeafter the crash?
Kelly Tuttle (08:44):
Yes.
So my, you know, like I said,my goal was I really wanted I
will.
I really needed to get back towork.
I was a single income earnerand I brought in the benefits
for the family.
I really wanted to get back towork, but, you know, I wanted to
get back to my regular life too, and so I read all these really
wonderful books like 365 tipsand tools to brain injury
(09:09):
recovery I forgot the completetitle, but it's on Amazon and
just remember 365 tips to braininjury, you'll find it.
And then brain lash, like withlash, but brain lash.
These are really great books,for you know someone who is
trying to recover from theirbrain injury.
(09:31):
And I had those books and theywere absolutely wonderful, but
they were like generalized, likein every aspect of your life.
What I really knew that thattime was I needed how to get to
work, how to be at work, how tosupport my brain at work, and it
took me years to put together atool bag of things that I even
(09:53):
still use today to help me be anefficient employee and maintain
my focus and attention andminimize any drain on my limited
brain energy, because I do havecognitive fatigue, and so
that's why I wrote that book.
I really wanted to nail thatniche and make it available to
(10:17):
anybody out there like me whowants to get back to work.
And then the other thing, too,was I read a lot of other books
that were really good, and thereason why I was reading all
these books what I was lookingfor was hope.
I needed someone to reassure methat things were going to get
better.
Not that I was going to gethealed or there was something I
(10:41):
could do to get back to my oldself, but I just wanted hope to
know that things will get betterover time, and so that was
really important to me.
In writing, my book is to be acompanion of hope and guidance
to the reader and the braininjury survivor.
Bella Paige (11:02):
I think it's so important because that work
piece, the career piece, is huge.
I hear about it constantly inour support groups about someone
trying to go back to work,trying to make it at work, going
back to work and then having tomake adjustments or going back
and it being too much and thingslike that.
Or what do you even ask for atwork?
(11:25):
How do I make work a place thatI can be in?
It's something we hear aboutall the time.
Or how do I know if I'm ready?
Kelly Tuttle (11:32):
to go back to work .
Bella Paige (11:33):
I hear that a lot as well.
Kelly Tuttle (11:35):
Yeah, and I went back to work way too soon, way
too fast.
My book is like I just wantpeople not to have to make the
mistakes I made and I think thata lot of those mistakes really
kind of were preventable speedbumps to my recovery.
And so anyway, I was justhoping to make somebody else's
(11:55):
recovery more smooth than mine.
Bella Paige (11:58):
Yeah, I think that's so great because there's
so many challenges with all this, and so we are going to take a
quick break.
But before that, what do youthink your number one tip for
getting back to work could be?
I know there's a lot of them,but if you could pick one, what
do you think?
Kelly Tuttle (12:12):
Oh wow, that's hard, but I think the biggest
tip if I only had a snippet oftime to mention it would be to
go to askjanorg, which is a jobaccommodations network, and that
is where people with braininjuries and symptoms from brain
injuries can go and findreasonable work accommodations
(12:32):
that they can ask for at theirplace of employment.
Bella Paige (12:36):
I think that's fantastic and we are going to
talk a lot more about your book.
I have a few questions aboutparts that I read that I really
want people to hear about that.
We will be right back.
We have so many five starreviews coming in for the post
concussion cookbook on Amazon.
This cookbook was something Ihad been looking for.
It pairs nutritionalinformation specific to
concussion recovery with tipsfor symptoms, and the recipes
(12:59):
are delicious.
My husband and teenager lovedit too.
Very grateful to have thisresource.
If you bought the cookbook,make sure to leave a review and
if you haven't, make sure youfind yours on Amazon today.
I'll do the link in our episodedescription.
Welcome back to the PostConcussion Podcast with myself,
Bella Paige and today's guestand author, Kelly Tuttle.
(13:21):
So we've been talking a littlebit about your experience and
your book so far, and so thereis one component of your book
that I wanted to ask you aboutbecause I think it really
connects with survivors on likea day to day basis, and that's
your Starbucks versus Star Trekcomment and story.
And so you know a lot of timeword finding, grasping what
(13:43):
people are saying.
All these things are aneveryday challenge people have.
It makes them really nervousjust to leave the hub because
they're like well, you know,sometimes I take too long to
even think, sometimes I can'tcommunicate, sometimes I don't
know what people are saying.
So do you want to share thatstory with us today?
Kelly Tuttle (13:59):
Sure, so that cut well.
Number one I love Star Trek.
I just had to have it in mybook.
I love comics and Star Trek, andthat came up because that day
after the car accident, when Iwent into work and the nurses
and I were gonna take a breakand I said, hey, let's go to and
(14:19):
get some Star Trek.
And they were like what?
And I'm like, yeah, let's goget some Star Trek.
And they're like Star Trek,you're saying Star Trek.
And I was like, oh, starbucks,starbucks.
And they're like no, you saidStar Trek.
And that's when I got thelecture.
You better see your doctor,that's so.
That's kind of like where thatcame from.
(14:39):
But one day, you know, I stillstruggle with my speech and the
things I say, especially when Iget tired.
Of course, it gets worse for uswhen our batteries are getting
really super low at the end ofthe day and Early into my
recovery it was, it was reallyrough.
I there were some like medicalterms that I had been able to
(15:01):
say Easily and multiple timesthroughout the day and I
couldn't say him again.
So what I learned I?
You know, I just found sometips and tricks and one of them
was if I was going to give areport to a Physician or another
colleague and that word wasgonna come up and I knew that
was my word I struggled with,then I would write that word
(15:22):
down and I would go and meetwith this person and then when I
Got to that word, I would lookdown and for some reason being
able to see the word on paperHelped me say it out loud.
And then I would also rehearsethe word several times before I
met the person to say it overagain slowly.
So that's kind of how Icompensate.
The other thing is, you know,when I started working I didn't
(15:45):
want people to know I had abrain injury, because some
people are just, you know,managers or co-workers aren't as
supportive as you would hope,and so for the first, you know,
five to six years after my braininjury, I hid it.
So whenever I struggled with aword, I would just say you know,
I'm having them, excuse me, I'mhaving a blonde moment.
(16:06):
You know you're talking to ablonde, or I need more coffee,
or you know Something to thateffect, to kind of smooth over
not being able to be able to saythe word, but with family and
friends who I feel safe andcomfortable with they.
Let me struggle, try tostruggle to try and say the word
so that I can get those brainconnections going and they're
(16:29):
very Supportive that way.
And the other thing too is Iread a book.
It's called I Will Carry theFork Another brain injury
survivor, and she talks abouther struggle with word finding.
What she would do was she wouldsing to songs, the lyrics of
songs she knew, and she wouldsing them over and over until
(16:49):
she would get every single wordright.
And that helped her too, and Idid that too and I it helped me
and you know, and it's, it's afun little speech therapy
Exercise you can do.
Bella Paige (17:00):
Yeah, no, I like it .
It's a good story and it is,it's true, finding that Boundary
of like, do I want to tell themor do I not?
Sometimes it's not always worthit.
I've went through this theother day at the gym because I
started working out recentlyagain and it's like, do I
explain that, like why I can'tgo for a sauna and things like
(17:20):
that after, because, like, Ihave pods and all these things
and my body?
It's like a really bad idea,bad combination.
Or do I just say, like I'm notin the mood, like, do I explain
the health piece or do I not?
It really depends on who I'mwith, depends on who is around.
Like, sometimes it's worth it,sometimes it's not, and it's
totally up to you and your owncomfort level.
I don't believe like sometimeswe're very oh, you need to tell
(17:43):
people and make it lessinvisible.
And I get that piece.
I get the advocacy piece andthe awareness piece.
But there's also the piecewhere, like you, there's you.
So it's like if it's gonna makeyou really uncomfortable, it's
gonna make you have a hardertime.
Maybe you're just not in aplace to share yet because, like
I go back in time where I wouldhave never told anyone that I
(18:04):
was struggling.
Like I just say I had a headache.
But I didn't tell them.
Like I had a headache and itwas too light and the smells
were bugging me and it was justlike I felt like I was gonna
puke and like all these things.
I would just say I have aheadache, because everybody kind
of thinks they know what thatmeans, except for Concussion
headaches or different level ofheadaches, you know.
And then eventually I got morecomfortable with just telling
people, like you know, I havethis health condition and it's
(18:25):
part of my life.
Like I went to a newhairdresser a Few weeks ago and
I had tears streaming down myface because I have dry eyes and
so I was like, don't worry, I'mnot crying, it's just like.
But before I would have neversaid anything, I would have just
probably tried to dab them awayand like not had the confidence
to share.
So you know there's differentpoints.
Kelly Tuttle (18:44):
Work is a totally different place where you know
you don't want people to thinkless of you because they're
uneducated about brain injuriesand don't understand and things
like that right and you know I Italk a little bit about this in
my book that the advantage ofhaving a brain injury is that it
is an invisible disability andagain that that's a double it
(19:06):
short, because the disadvantagesIs that it is invisible.
And it was one of the questionsI had was should I let tell my
employer or my colleagues orwhatever?
You know I, in my book I reallyencourage my reader to think
well, what's the goal of tellingsomebody that you have a brain
injury?
What would be the goal?
(19:27):
What is the outcome that youexpect or what you want?
And that kind of helps youdecide to make that decision.
Do you want you know or hopethat your colleagues will be
sympathetic and that's why youwant to share it?
That may or may not happen.
Or you know, things have reallygotten tough at work with the
expectation in the increase inworkload and now you're even
(19:52):
with your compensatory tools,you're struggling to stay on top
of your work assignment.
Then you may want to thenconsider asking for work
accommodations and just reallyquick, on a tangent, like when
you ask for work accommodationsyou don't have to tell them you
have a brain injury, but you dohave some of your symptoms, and
(20:12):
here in the US you have to havea medical note too.
So just throwing that out justfor information.
Bella Paige (20:19):
Yeah, it's super important and for me I know like
accommodations for me wereschool and so, you know,
sometimes I always felt like, oh, do I need these?
But they made it so I couldsucceed, and so you have to
remember that too.
And there was one other part ofyour book that I want to talk
about because I've heard a lotI'm sure you've heard it a lot
(20:40):
and it's that you are too tiredbecause you sleep too much.
Oh, my gosh, I hate that.
Yeah, because you sleep all day,it's making you more tired and
like, don't get me wrong, if Iget in a spell of sleeping all
day, I have chronic fatiguesyndrome, so it takes over and
like, if I let it, like if Ihave a few days where I like do
less and I sleep more, well, Ikind of can get in the rhythm of
(21:03):
that because I have chronicfatigue syndrome, because I have
a health issue.
Do you want to talk more aboutwhy you don't like that comment,
as you reacted perfectly to it,and I get how you reacted to it
, because sometimes people like,oh, you're sleeping too much,
like that's why you're tired,and it's like I can't even get
up, I can't open my eyes like Ican't function.
(21:23):
I don't think you'reunderstanding, like my fatigue.
Is you falling asleep at thewheel?
Like it's not what people areexpecting and it's not what they
understand.
So I'll let you take it fromthere.
Kelly Tuttle (21:34):
Yeah.
So there's a really bigmisunderstanding about neuro
fatigue, and neuro fatigue couldbe emotional fatigue, physical
fatigue, cognitive fatigue, andit is real and it is serious.
Like I said, I got shut downwhile I was driving.
My brain said this is it,you're done, and that's what
(21:56):
neuro fatigue will do.
If you push yourself too hard,you will find your face flat and
you'll plate a spaghetti.
You know, at the end of the day, your brain will just shut off.
Keeping in mind that the brainuses 20% of our energy, that's a
lot, and I did read somearticles when I was researching
(22:18):
my book and I ran across anarticle that talked about how
the brain likes to run, to runefficiently.
And if it doesn't runefficiently, like a car, if you
have your car and you don't keepair on the tires, you don't get
it oiled and lubed, you don'ttake care of it then, it's not
going to run as efficiently.
right, it's going to need moregas to go the same amount of
(22:40):
distance compared to a brand newcar that is well taken care of.
So these researchers looked andfound that the brain likes to
run efficiently.
Well, if you have any brainissues, either from a stroke or
traumatic brain injury orParkinson's, then your brain
doesn't run efficiently.
(23:01):
And so for you to do like toget dressed, it takes you more
energy to do that minimalactivity as compared to someone
who doesn't have those brainissues, because their brain runs
efficiently so it's not suckingup all your energy just trying
to get through the day.
And this fatigue is neurofatigue, is different than
(23:26):
regular fatigue because, despitethem on a sleep and rest and
you get yourself, the energyreserve is never 100% filled.
Bella Paige (23:38):
So for myself, after I got diagnosed with
chronic fatigue syndrome, theylike show me this bar and it's
like you have cortisol levels ina normal person, like dip down
as they at the end of the dayand then shoot back up in the
morning and then kind of likedive down by the afternoon.
That's kind of like thisfluctuation of energy.
But I don't have that.
(23:58):
There is no reset.
So for me instead it's like Ilive in this like kind of flat
line that just goes up and downand up and down and up and down
and up and down, versus likereally highs and like I do have
really low, as if I let thechronic fatigue kind of take
over, which I can get stuck in,but my cortisol levels don't
replenish in the same way thatsomebody else's do.
(24:18):
So it's more like learning howto monitor that and kind of
working with that and being like.
You know, for me I always liketo tell people do things when
you feel best in the day, if youcan.
Of course this doesn't work foreveryone, but if you feel great
at 10 o'clock at night, thenmake dinner at 10 o'clock at
night if you can, because it'sokay, like when you're healing
(24:41):
and you're recovering and you'rein that phase where, like
you're not going to work yet,you're not in a structured
schedule, maybe work with yourenergy, try to work with it,
being like I woke up at 3o'clock in the afternoon and I
had all this energy.
Well, okay, then do stuff.
Then you know you don't have tolet it go to waste those types
of things.
But you know you've shared alot.
(25:02):
I loved your book.
I think it's a great resourceand I think it's definitely
worth the read for all survivors, even ones that aren't just
looking forward to going back towork.
There's a lot of otherimportant components in it, and
so is there anything else you'dlike to add before we end
today's episode?
Kelly Tuttle (25:17):
Yeah, I'm really excited that my book is
unaudible too, because after ourbrain injury can be hard to
read and remember what you readand have the energy to read.
So it was really important forme to record my book for those
individuals so you can justlisten to it too if you just
don't have the energy forreading right now.
Bella Paige (25:37):
It's so important.
I love audible.
I lived on it until like just ayear to go, when I can actually
read books, but I just want tothank you so much for coming on
and sharing a little bit aboutyour book.
Well, thank you for having me.
Kelly Tuttle (25:48):
I'm like I said, I'm a big fan.
Bella, thank you for doing allthe things you're doing Need
more than just this podcast.
Bella Paige (25:55):
be sure to check out our website
postconcussioninc.
com, to see how we can help youin your post concussion life,
from a support network to one onone coaching.
I believe life can get betterbecause I've lived through it.
Make sure you take it one dayat a time.
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