Medical Stories - Multiple Sclerosis: Out of Mind
Summary
TLDRThis video script narrates personal stories of individuals living with multiple sclerosis (MS), a chronic autoimmune disease that affects the central nervous system. It highlights the experiences of Tyler, a former football player, and Dawn, a 46-year-old woman, both diagnosed with MS at pivotal moments in their lives. The script addresses the changing demographics of MS, particularly the increased incidence among African Americans, and emphasizes the importance of early diagnosis, treatment, and support systems. It also touches on the emotional journey, the impact on family, and the resilience of those affected as they navigate life with MS.
Takeaways
- 👨👩👧👦 The speaker, Tyler, is a proud husband and father of three, with a notable family history including his father, NFL Hall of Famer Earl Campbell.
- 🏥 Tyler was diagnosed with multiple sclerosis (MS) at a young age while playing football at San Diego State University, experiencing sudden paralysis and other symptoms.
- 🛡️ MS is an autoimmune disease where the immune system mistakenly attacks the myelin sheath of nerves in the central nervous system, leading to various neurological symptoms.
- 🚑 The symptoms of MS can vary widely, including paralysis, uncontrollable twitching, and difficulty with motor skills like walking in a straight line.
- 👩⚕️ Dawn, another individual with MS, emphasizes the importance of early and accurate diagnosis, which can be challenging due to the disease's varied presentation.
- 📊 The demographics of MS are shifting, with studies showing higher incidence rates among African Americans and a more severe disease course compared to white counterparts.
- 🌐 Globally, MS is more prevalent in Eastern Europe, but within the U.S., African Americans are increasingly affected and may face disparities in diagnosis and treatment.
- 🧬 The exact cause of MS is unknown, but risk factors include low vitamin D levels, smoking, and obesity, with genetic and environmental factors playing a role.
- 🔬 Diagnosis of MS typically involves a combination of tests, including MRI scans to identify lesions on the brain and spine, and sometimes a spinal tap.
- 💊 There is no cure for MS, but disease-modifying therapies are available to manage symptoms and slow progression, which should be started early to be most effective.
- 🌟 The script highlights the importance of support systems, mental health services, and the role of patient advocacy in improving lives affected by MS.
- 🎙️ Tyler's personal journey with MS has led him to start a podcast to share experiences and raise awareness, demonstrating resilience and the power of community.
Q & A
What is the autoimmune disease mentioned in the script that affects the central nervous system?
-Multiple sclerosis (MS) is the autoimmune disease mentioned in the script, which affects the central nervous system by causing the immune system to attack the myelin, the coating of the nerves.
What is the impact of Multiple Sclerosis on the individual's ability to perform daily activities?
-Multiple sclerosis can severely impact an individual's ability to perform daily activities, including walking, as it disrupts the signals in the nervous system, leading to symptoms like paralysis, numbness, and difficulty with balance and coordination.
What is the significance of the NFL Hall of Famer and Heisman Trophy winner Earl Campbell in the script?
-Earl Campbell is significant as he is the father of the narrator, Tyler, who also has multiple sclerosis. His inclusion highlights the fact that MS can affect anyone, regardless of their background or achievements.
What was the initial symptom that led to the diagnosis of multiple sclerosis for the narrator Tyler?
-Tyler's initial symptom was waking up one morning after a football game and finding himself unable to stand without falling flat on his face, which led to his diagnosis of multiple sclerosis.
How does the script describe the experience of Dawn, another individual with multiple sclerosis?
-Dawn's experience is described as challenging, with her waking up one morning completely numb in her extremities and unable to feel her abdomen area, leading to her diagnosis of MS at the age of 25.
What are some of the risk factors for multiple sclerosis mentioned in the script?
-Some risk factors for multiple sclerosis mentioned in the script include low vitamin D levels, especially for people living far from the equator, as well as modifiable risk factors like smoking and obesity.
What is the typical age range for when people are first diagnosed with multiple sclerosis?
-The typical age range for the first diagnosis of multiple sclerosis is between 20 and 40 years old, often affecting individuals during college or early career stages.
What is the significance of the MRI in diagnosing multiple sclerosis?
-An MRI is significant in diagnosing multiple sclerosis because it can reveal lesions or spots in the brain and spine, indicating areas where the immune system has caused damage.
How does the script address the emotional impact of a multiple sclerosis diagnosis on the individual and their family?
-The script addresses the emotional impact by discussing the fear, shock, and the need for support systems and counseling. It also highlights the importance of hope and the role of caregivers in the journey with MS.
What is the role of medication in managing multiple sclerosis according to the script?
-According to the script, medication plays a crucial role in managing multiple sclerosis by slowing the progression of the disease. It is part of a treatment plan that includes disease-modifying therapies and other supportive care.
How does the script discuss the importance of lifestyle changes in living with multiple sclerosis?
-The script discusses the importance of lifestyle changes such as adopting a healthy diet, engaging in exercise, and being compliant with treatment plans to improve the quality of life for individuals with MS.
What is the script's perspective on the future and hope for individuals living with multiple sclerosis?
-The script offers a perspective of hope and promise for individuals living with MS, emphasizing the importance of support, advocacy, and the potential for a fulfilling life despite the challenges of the disease.
Outlines
🏈 Introduction to a Family's MS Journey
The paragraph introduces Tyler, a husband and father who has been married for 10 years and has three children. He shares that he was diagnosed with multiple sclerosis (MS) at the age of 21 while at San Diego State University. Tyler explains that MS is an autoimmune disease where the immune system attacks the myelin sheath around the nerves, leading to a slowing or stopping of nerve signals. He describes his first symptoms, which included paralysis on the right side of his body and an uncontrollable neck twitch. The paragraph also introduces Dawn, another individual with MS, who was diagnosed at 25 and shares her experience of waking up numb and her initial fear of the disease.
🌐 Changing Demographics of MS
This paragraph discusses the changing demographics of MS in the United States. Historically considered a disease predominantly affecting young white women, recent studies suggest that the incidence of MS is highest in African Americans. It highlights that African Americans tend to have more severe cases, with more lesions, visual problems, and walking disabilities at earlier stages compared to their white counterparts. The paragraph also touches on the potential reasons for these disparities, such as genetic and environmental factors, including low vitamin D levels, smoking, and obesity.
🏥 Diagnosis and Emotional Impact of MS
The paragraph delves into the process of diagnosing MS, which involves a series of tests including MRI scans to identify lesions in the brain or spine. It emphasizes that there is no single test for MS and that a spinal tap and other motor skill tests are also part of the diagnostic process. The emotional impact of an MS diagnosis is explored, with individuals describing the shock and the need for support from caregivers. The paragraph also highlights the importance of early and accurate diagnosis to prevent more severe outcomes, including higher disability and mortality rates, especially within the African American community.
🤸♂️ Living with MS: Challenges and Coping Mechanisms
This paragraph focuses on the challenges of living with MS, particularly the fear of the unknown and the emotional rollercoaster that comes with it. It discusses the relapsing-remitting nature of MS, where periods of symptom flare-ups are followed by periods of remission. The paragraph also touches on the importance of counseling and mental health services for patients, as well as the availability of disease-modifying therapies that can slow the progression of the disease. Personal stories of adapting to life with MS, including the use of mobility aids and the decision to start a new treatment, are shared.
💪 Advocacy and Hope in the MS Community
The final paragraph emphasizes the role of advocacy and the importance of hope for those living with MS. It discusses the impact of the disease on personal identity and priorities, and the process of grieving the loss of pre-diagnosis life. The paragraph highlights the power of sharing personal stories and experiences through platforms like podcasts to raise awareness and provide support within the MS community. It also mentions the efforts to understand and address health disparities in MS, particularly within minority populations. The paragraph concludes with a message of hope, emphasizing the potential for independence and a fulfilling life despite living with MS.
Mindmap
Keywords
💡Multiple Sclerosis (MS)
💡Autoimmune Disease
💡Diagnosis
💡Neurologist
💡Relapsing-Remitting MS
💡Disease Modifying Therapy
💡Cognitive Abilities
💡Support System
💡Demographics
💡Health Disparities
💡Patient Advocacy
Highlights
A proud husband and father of three shares his journey with multiple sclerosis (MS).
The unique family connection to NFL Hall of Famer and Heisman Trophy winner Earl Campbell.
The sudden onset of MS symptoms at a young age during college.
An explanation of MS as an autoimmune disease attacking the myelin of nerves.
Personal experiences of paralysis and uncontrollable twitching as symptoms of MS.
A woman named Dawn's story of being diagnosed with MS at 25 and the challenges she faced.
The changing demographics of MS in the U.S., with a focus on African Americans.
Increased risk factors for MS, including low vitamin D levels, smoking, and obesity.
The diagnostic process for MS involving MRIs and spinal taps.
The importance of early and high-efficacy treatment for MS to prevent disability.
The emotional impact of MS on patients and their families.
The role of genetic and environmental factors in the development of MS.
The challenges of late diagnosis and its severe outcomes in MS patients.
The importance of counseling and mental health services for MS patients.
A personal account of embracing a new disease-modifying therapy to treat MS.
Lifestyle changes including diet and exercise to manage the symptoms of MS.
The launch of a podcast to share experiences and raise awareness about MS.
The mission to improve understanding and treatment of MS in minority populations.
Personal reflections on the hope and promise of living with MS.
Transcripts
[Music]
thank you
ready to go
I am a proud husband
I've been married for 10 years to
amazing woman and we have three
wonderful children together our son he's
the oldest his name is Messiah
our middle daughter her name is Cheyenne
and our youngest her name is Sage
oh I guess the one unique thing about
our family is that my father just so
happens to be in NFL Hall of Famer and
and Heisman Trophy winner for his time
at the University of Texas and Houston
Oilers Earl Campbell
my name is Tyler
and I have been diagnosed with multiple
sclerosis
I was at San Diego State University and
I I remember being 21 years old
and just finishing out our Junior season
we had played BYU and I walked out of
that football game absolutely normal
with no issues whatsoever
I wake up on a Sunday morning after that
football game and I ease my legs out of
bed and instead of standing to my feet I
fell flat on my face
without warning like can you picture
yourselves going to sleep One Way
absolutely normal then waking up the
next day not being able to walk
multiple sclerosis is an autoimmune
disease meaning the immune system or the
part of the body that normally attacks
viruses and bacteria gets confused and
attacks a good part of the body with Ms
those immune cells attack the myelin or
the coating of the nerves and the
central nervous system so nerves that
are myelinated are ones where the
signals can run really quickly so that
we can do the things that we want to do
like move our hands or nod our heads and
so when those signals are interrupted it
essentially slows down the signal if
that myeliner that coating is damaged
severely or even if the nerve fibers are
damaged severely those signals won't
work at all
and then I noticed that the paralysis
was down the right side of my body and
then I noticed that I started to develop
a neck jerking twitch that was just kind
of like uncontrollable
I was terrified
[Music]
it was a beautiful day I was walking to
the Metro
and
I remember
the right side of my body just wouldn't
catch up with the left side it was as if
the right side would drag
I knew something was wrong
my name is Dawn and I've been diagnosed
with multiple sclerosis
yeah and how many pages was in it you
read 100 Pages
he made me do it I am a 46 year old
woman I was diagnosed with Ms at the
ripe age of 25.
I
I have one son
I was in the middle of a flare as they
say or a major exacerbation and I woke
up the next morning completely numb
and my extremities
I couldn't feel my abdomen area I
couldn't take deep breaths
I thought it was dying
I'm heading into the doctor's office
seeing a neurologist for the first time
I'm going in there dragging literally
the right side of my body
so the neurologist is coming into my
room now and as she turns to look at me
I noticed that her eyes they they jump
almost as if she's shocked or she's
surprised by the figure that she's
seeing
did her eyes jump because I was a black
male
and there weren't as many of us getting
diagnosed with this disease at that time
as there are now
[Music]
so the demographics of multiple
sclerosis in the United States are
changing typically Ms has been thought
of as a young white woman's disease and
if we look at the prevalence or
incidence of Ms globally that is still
the case Eastern Europe is the most
common or has the highest incidence of
multiple sclerosis but when we look at
the demographics here in the U.S there
are studies over the past decade that
suggest that the incidence of Ms is
actually highest in African Americans
there are multiple studies that suggest
African Americans have more lesions on
MRI they have more visual problems they
have walking disability and have the
need to use canes or Walkers up to six
years earlier than their white
counterparts I don't think anyone knows
of one cause for Ms otherwise I'd be
happy to cure everybody and send them
home but we know that there are several
things that increase the risk for one
person having Ms versus another one of
the things is low vitamin D levels for
instance people who live in certain
parts of the world like further away
from the equator have a higher risk of
multiple sclerosis and that may be
related to vitamin D we also know that
there are other modifiable risk factors
such as smoking and obesity and we
really don't know how those are related
to increased risk
so from there she she gave me a host of
um of motor skill tests she told me to
walk in a straight line and every time I
started walking the straight line I fell
over miserably right all those tests and
then she said to me
think I have an idea of what this could
potentially be
but to get a greater look at it we're
gonna need to give you a spinal tap
and we'll probably have to go through
some MRIS
so there's not one test that diagnoses
Ms but there are several things that we
do
first an MRI is key to diagnosing Ms
because we see lesions or spots in the
brain and or in the spine that tell us
that the immune system has damaged some
part of the brain or spine
the brain stem we see some white lesions
and we can see a lesion there which is
very typical of what we see with
multiple sclerosis
the doctor said I
I think that you need to go and get an
MRI
the Radiologists found something and I
read the report and I thought okay
autoimmune disease I don't know anyone
in my family who has this
everyone's healthy Dawn is bright
energetic
had it not been for multiple sclerosis
I'm almost positive she would have
probably had double phds she's just got
that much energy that much Drive
as we look back through our family there
doesn't seem to be any strong history of
Ms in our population in our family
in terms of genetic
gymnastics mess
for Ms is elevated but it's still very
small compared to the general population
[Music]
so there's some combination of genetic
factors plus environmental factors that
lead to one person to have MS versus
another that doesn't the issue that we
don't understand is what factor do
social determinants of Health such as
access to care plan that versus
underlying biologic differences and how
those play together to lead to the
disparate outcomes I don't feel that I
am the first one in my family to have
this disease
understanding my family
my ancestral heritage is rural East
Texas
our family especially I'm a father son
comes from extreme poverty extreme
poverty and so not all the time would
somebody have the funds
to go to a doctor
and so culturally
I don't feel like I'm the first one
I feel like I'm the first one who got
diagnosed
my father knew an MS specialist
made an appointment
I won't forget a day my father came with
me
and
he had asked
well what is it
what what is it
and she said oh it's MS
very with a very assured
look on her face
she absolutely knew it was multiple
sclerosis I was taken aback sitting in
the doctor's office the one thing that
gave me hope and certainly gave her hope
was the physician said to her Dawn we're
going to get old with this disease
together
that in itself
gave p-hope
I didn't realize at the time how much of
an impact my diagnosis had made on my
family and particularly my father
I think they knew way more than I did at
the time about Ms
I eventually learned that your support
system your caregivers are hurting just
as much as you are
my wife's willingness to be open to go
to doctor's appointments her willingness
to to be able to comfort me and allow me
the space to Cry tears
Ms was not a disease that you were
supposed to fight alone
Tyler and I met at San Diego State
University in college
um he was on the football team I was on
the track team and we met in the
athletic center on campus
I thought it was attractive when I first
met him I thought it was a little
sensitive we kind of bumped heads a
little bit the first year we met
um but after a while you know we became
really good friends
I actually was one of the very few
people who knew Tyler was diagnosed with
multiple sclerosis
um back in 2007.
he didn't tell a lot of people that he
was diagnosed
[Music]
we did not know a lot of African
Americans who were diagnosed with
multiple sclerosis
you know when I read what multiple
sclerosis
was what the statistics were
particularly what the statistics were
for
me as a black male with MS
I couldn't find anything
all the pictures I saw
all the research all the statistics
weren't included
and nobody looked like me
I know I'm in really big trouble Ms
affects women three times more commonly
than men used to be twice as common but
now we know the demographics again are a
little bit different and usually between
the ages of 20 and 40.
often people who are in college or
people in their early childbearing years
getting ready to start their careers are
when they're first diagnosed I was right
in the middle of graduate school and
headed towards my doctoral program
and I couldn't keep up with the work
because Ms affected not only my gait not
only my ability to
function like a normal everyday person
it affected my cognitive abilities and
so I would be sitting in class and not
understanding what the instructor was
saying
so I had to pause and I did not finish
the hardest part I think about Ms is
that
with relapsing and remitting which is
what I have
when people see you
and it's not one of those bad relapsing
days
so they can't see the disease so they
can't figure out
well what's wrong with you
you're walking you're talking I don't
notice the limp
about 85 percent of patients who are
newly diagnosed have relapsing remitting
Multiple Sclerosis which is a type of
multiple sclerosis that usually you'd
have some symptom whether it be optic
neuritis blur Vision double vision
numbness and tingling trouble with gait
or balance and walking so relapse means
they have a symptom they get treatment
and then there's the remission part so
when we think about a remission in
cancer we think of the absence of
symptoms that's not what a remission in
Ms necessarily means a remission with Ms
could be if you had numbness and it got
80 percent better you stay at that 80
percent for several months to several
years so it does not mean the symptoms
are gone it just means you experience a
period of stability
and you are so incredibly proud that
you've been able to make it through a
football season your senior year
you graduated with this disease
I'm living on cloud nine so much so that
at times
I forget that I have the disease
you're getting ready for the National
Football League
you get a chance to work out for NFL
Scouts
then you have a relapse that totally
takes the game of football away from you
completely
[Music]
you're in a wheelchair
you have to learn how to behave yourself
you have to ask help for somebody to
help you use the restroom
you have to have somebody to feed you
because you can't do it for yourself
working out for NFL Scouts to now
somebody's feeding you and bathing you
emotional rollercoaster
one of the difficulties with multiple
sclerosis is the fear of the unknown
let's do this let me examine you and
then we'll see what we see on here okay
so I'm a huge advocate of uh counseling
and accessing Mental Health Services for
my patients from the beginning from
diagnosis because it's a lot to Grapple
with we do find patients who have come
into the office by referral
who should have been diagnosed many
years ago
the difficulty with late diagnosis is
that we also find that when we look at
these groups and we look at outcomes
they have more severe outcomes than in
other groups not just in terms of
disability but also in terms of
mortality and people don't usually die
of Ms and we see that African Americans
actually die at younger ages likely
because of higher disability rates which
may be related to delayed diagnosis
it's important for all patients who are
diagnosed with multiple sclerosis to
know that there are medications
available which is very important when
you're talking about multiple sclerosis
and when we think about the disease not
having a cure which sometimes is one of
the hesitations that patients have to do
in treatment I say well name me five
diseases that are curable right it's
difficult we treat and manage diseases
just like we do with hypertension
diabetes other conditions we manage and
we manage Ms and the medicines and
therapies that we use allow us to do
that more effectively
so the course of treatment doesn't
necessarily differ in the
African-American Community the course of
disease can differ and because of that
there are many people who favor doing
High efficacy treatment early in that
group because of the risk of disability
and essentially what that means is we
just hit it hard from the beginning
there are several therapies within that
higher efficacy categories some of those
are pills some of those are infusions
and even some of those are injections
that people can take at home it took me
a long time to accept that yes
medication will help slow the
progression of your multiple sclerosis
I was in denial for a number of years
probably almost a decade
I was walking but not unassisted I had a
Mobility device I used the cane
and so after having
pretty Frank discussions with my
neurologist she pushed me to be
proactive and not reactive and not
waiting until well you're in a
wheelchair and that was the path that I
was on
bye
by being non-compliant and refusing and
resistant
I decided to
embark on a new disease modifying
therapy to treat the disease
I haven't had an exacerbation in
probably seven years
which is incredible
and that's due to being compliant eating
healthy I am very very strict on the
things that I eat
there are foods that are obviously not
helpful to somebody living with Ms as I
learned about vitamins and and learning
about food groups it has helped me to
feel better
having some form of exercise has been
helpful to helping me feel like I'm
still holding on to that athletic Tyler
just a little bit with the mess
how are you
[Music]
I said I'm going to start a podcast
I'm going to share what it's like having
Ms with the world
I want to hear others Journeys and
stories and I recently had a guest on
the show my friend my dear friend fellow
MSR today I'm joined by a fellow Ms
Advocates thank you so much for having
me Don it is always a pleasure to speak
with you
one of the most difficult
aspects of having a diagnosis like
multiple sclerosis is trying to figure
out not only who you are you're also
wondering who you were
absolutely I I absolutely do and I think
it's very common and I think that's why
it's so important that you're you're
having this discussion because
um it's one thing to be in the prime of
your life and be healthy and then bam
you're just sideswiped by this chronic
illness diagnosis but
there were certain things that now
aren't important to me anymore I'd say
and it's changed my priorities yes but I
still at sometimes
grieve the hopes I had before my
diagnosis I truly enjoy the podcast life
I feel that I've met a number of people
who are willing to talk about Ms and
willing to share because it's it's not
easy that's all I can say too
when the doctors told me
that they were going to take football
away from me after that last relapse
that I literally
told the doctor I said it's gonna be
okay because when one door closes
another one opens and I still can't
figure out how in the world I said those
words
but I think it has a lot to do with with
faith and culture of what I come from
and understanding that what you go
through is not about you
it's about how you handle what you go
through to give hope to somebody else to
say that yes I can
I was sitting in the hospital with him
and he told me Shayna it's all right I'm
gonna be okay
um there's bigger plans for me I don't
know what yet but there there's more for
me
the man up above literally spoke into my
heart and people think I'm crazy but
this is my truth so take it as you want
to take it
he said as long as you help spread
awareness about this disease
my soul will be at peace
and so if my soul is at peace
that I can keep on moving forward and so
ever since then the mission has been
leaving things better than the way that
you found them for multiple sclerosis
I was ready to take the next step in my
life towards patient advocacy you don't
really know how strong you are as a
human being until you are dealt
situations and circumstances that cause
you to be made weak I fell into public
speaking by accident to impact lives
through a microphone and a voice and I
just try to do that as much as I
possibly can day in and day out so
knowing that I could be an inspirational
speaker knowing that you can be an
author knowing that you can do all those
things to make an impact and leaving
things better than the way that I found
them that's basically what I the way I
live my life every day
colleagues from around the country
who've recognized and been doing this
work for some time came together and
founded a registry so that we can
understand some of the risk factors for
Ms in the black population as well as
understand if people are getting to
treatment in time if their diagnosis is
being delayed and to try to better get a
handle of the data and the reasons why
we see some of the outcomes that we see
so I'm very hopeful
um that there is much work being done to
decrease Health disparities and to
improve understanding of Ms and minority
populations
being able to walk again with my family
and watch Destin on a skateboard
it means a lot
and I think having him
see me in a state of not being able to
walk to walking
is
it's overwhelming
with all the other months right exactly
and they said no
I'm learning how to constantly navigate
living a life with their mess
There's Hope with this disease there's
promise with this disease there's family
with this disease there's independency
with this disease
there are things that allow you to still
live your life with Ms please know that
with this disease
[Music]
[Music]
[Music]
[Music]
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