Kind: captions
Language: en
[Music]
march 2020
during the height of the pandemic
i felt frozen
welcome back um i did all of my meetings
and doctor's appointments online what
what's it like out in the hospital at
the moment i think bellevue is doing
okay yeah it was convenient but it was
lonely
long story short i spent my day staring
at the window
waiting for my daily role in the park
the never-ending isolation
left me with an infinite amount of time
for reflection
i began to think about my own particular
situation and how i got here now this
isn't a story about the pandemic it is a
story
about a mysterious disease
in my quest to find out why i got it
[Music]
in 2005 i was 26 years old
living a full life
as an artist and filmmaker
working on several documentary films i
noticed that i was having trouble
walking
[Music]
i went to my doctor to get it checked
out
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i was diagnosed with primary progressive
multiple sclerosis
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multiple
having several parts
sclerosis
the abnormal hardening of body tissues
nms
nerve damage disrupts communication
between brain and the body
[Music]
a healthy person's body attacks
threatening germs
but the immune system of somebody with
the ms is confused
and attacks the protective sheath known
as myelin of the nerves in the brain and
spinal cord
[Music]
this makes it harder and harder for the
brain to tell the body
what to do
multiple sclerosis causes many different
symptoms
including vision loss
pain fatigue and impaired coordination
i have a rare subtype of ms called
primary progressive multiple
sclerosis
ms symptoms like fatigue muscle spasms
stiffness and weakness typically come
and go
but with ppms
it's just a slow and steady decline
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the doctors told me that in seven years
i may be in a wheelchair
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there i was
in the prime of my life
for my body kept getting worse
i tried everything to stop it
going to the gym
acupuncture
numerous treatments
[Music]
but i was unable to avoid the inevitable
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so
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depression
confusion
a complete loss of control
swirled about me
this past year seeing the world trying
to make sense of chaos
the feeling of lack of control about my
future returned in full force
i needed some kind of answers
so i decided to go backwards to look for
possible factors
that may have caused me to get pbms
[Music]
let's start where ms was first
discovered
sclerosis was described as a distinct
disease in
1868 in a series of lectures by french
scientist john martinshecko
this tricky disease evaded treatment
until 1951
when the steroid cortisol was used to
treat flare-ups
in 2001 magnetic resonance imaging known
as mri was included in the mcdonald
criteria for diagnosing ms
while mris can help detect lesions in
areas like the brain and spinal cord
they are only part of a diagnosis
[Music]
today a mass can be treated with various
medications physical therapies and
injections but
there is still no cure
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when looking at the probability of
getting a mess on paper my chances to be
slim to none
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in the united states the rate of ms is
approximately one case for
333 people only 15 percent of those are
primary progressive ms
that's one case per 2
22 people
so why me
my investigation
led me to a list of potential risk
factors
[Music]
the genetic risk factors of ms
are complicated
genome-wide studies have revealed over
200 genetic variants associated with an
increased risk of ms
some studies have also shown that having
close family members with mass increases
your risk
[Music]
did i have a genetic predisposition to
ms
if nothing else i can definitely rely on
my family to give me some clarity
lee do you know of anybody in our family
throughout the generations
that has had ms
uh
i think it's just you man unfortunately
you're the first person in our family
that that got it
um
we did inquire but we no i don't know if
anybody unless they're relatives that we
don't keep in touch with
i've asked a lot of people family
members
and
nobody seems to
give me a positive response so the
answer is no
not not this side no we we we're the
heart disease people and cholesterol
because we love the cream and the
and the sugar and the alcohol and stuff
like that
i mean i personally don't know
from from my knowledge there's no one in
our family but my knowledge only goes
really up to mama mama and papa the
grandparents you know
if you wanted to go further back than
that i think if you ask my mom if she
doesn't know she'll point you
to who does know
among mama's siblings
i don't know anyone who has any
neurological problems
but going back to her mother
she was born in russia
and got married
and left russia in i think 1920.
mama lucia was very healthy i don't
think that even
her parents had any you know such thing
however her mother
was german jew
i don't know in the jewish side if they
had anything or on grandpapa victor's
side but as far as i know they were very
healthy
turns out to my knowledge i don't have
anyone with a mess in my family
but i did learn that i have russian and
german heritage
who knew
by
investigating these people where there's
multiple family members with ms we might
learn about the how ms works and that's
been the
one the biggest problems with
progressive ms we don't know why people
[Music]
progress most people experience the
first symptoms between ages 20 and 40
but the primary progressive subtype that
i have often shows up about 10 years
later
i was diagnosed when i was only 26.
ms classically occurs in young adults
between the ages of 20 to 40.
it can definitely occur younger than
that usually in teenagers i mean it's
unusual that it occurs in sort of true
children you know under the age of 10
but it can happen but the vast majority
of cases are between the ages of 20 to
40 or so
[Music]
okay lisa i got a question
do you see more women or men with the
mess there are definitely more female
patients than male
the ratio is two to three times more
females some research indicates it's as
much as four times as much
this could be related to a number of
factors such as different levels of sex
hormones or differences in body fat
percentage and distribution which relate
to differences in overall inflammation
however the reason for this
is still unknown
whatever the reason may be i'm a male i
was only 25 to 50 percent as likely to
get ms as a female
yeah quite a bit more female
but males tend to
tend to be more become more disabled
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in general people living beyond the 40
degree mark north or south of the
equator are more likely to develop ms
than those living near the equator
besides my newfound russian heritage my
family roots are in goa in southern
india that mass can strike people of any
ancestry
but it's relatively rare in people
of asian
descent here's the kicker
i grew up in south florida
well under the 40 degree mark
[Music]
and what's that
i don't know i can't identify it it
looks like adjacent
florida was a magical place growing up
i love south florida
i love the nature and wildlife
playing baseball giving someone that
mustard
being around family
and adventures with friends yes i think
we're lost yes let's go
and that's where i really started
falling in love with the camera
who's up first first
heavy hitter okay
see you heavy hitter let's go
to the picture
we know
and i am the video cameraman
and then
it all changed
[Music]
okay jason today is tuesday july 14th
saying goodbye to the plants
howdy kids
are y'all ready for the uh 10 000
kilometer trip
[Music]
my family moved to vancouver canada
when i was 14 years old
[Music]
and this is iowa
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here we are in sioux falls
where are we now jason uh south dakota
right and where are we heading now after
this
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government of canada
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yeah okay this one i got to tell the
difference
turns out that
moving from areas of low risk to high
risk especially the younger you are
uh when you move the greater the
some studies have looked at different
age cutoffs so some used 10 some used 15
so you're 14 you know you're right at
that sort of in between stage it's not
that you can't get ms in miami but it's
certainly much higher in canada
and this is vancouver
on a very cloudy day rightly yeah
researchers attributed the sunlight and
the production of vitamin d
if your serum vitamin d levels are
particularly low
there is suggestion of an association
with possible ms risk and in south
florida you um i understand that you
would potentially make
vitamin d all year round but in
vancouver you're not going to it'll only
be in the summer months hey eddie
fashion think
so far i've got nothing definitive i'm
at the point of desperation so i call my
mom for some support
mom i have a question would you have
moved us to vancouver
if you knew i would have got a mess
well that's a stupid question
would i really move from florida to
vancouver south out of vancouver not
with the knowledge that my oldest son
were going to contract
ms and be severely disabled
if i had known that
i wouldn't have is that a stupid
question
yes so you can't blame your mom for this
one i i don't think um where people grow
up it does seem to matter for ms and
it's where they spend the first 15 years
of their life so by by the time you
reach reach age 15 that risk factor is
firmly established and this is one of
the things that's been known about ms
for for decades one of the classic
findings that the further you grow up
away from the equator the higher the
risk of ms
[Music]
at the age of 17
i was a multi-disciplinary artist
it's actually a portrait of elvis
costello okay and over here um this one
represents basically the alien
represents imagination and this
represents myself and my daydreamy
attitude towards life and that sort of
thing
along with drawing painting and
everything else i was an avid
photographer i spent my school days in
the dark room
handling and breathing those chemicals
all day in a poorly ventilated dark room
most likely did not help
we know that some of these chemicals
they are toxic to the nerves into the
brain
um it has not been shown but i think the
reason that it has not really been shown
is because it hasn't been well studied
darkroom solvents weren't the only kind
of chemical exposure that attacked
[Applause]
the twin towers were attacked
just before i arrived in new york city
i joined in the efforts to provide
assistance as a disaster elite counselor
to the rescue workers and people that
lived in the area
right across the street from ground zero
[Music]
today research is being done to see if
the chemicals in toxicity in the air
after the attacks
could have a link to different
autoimmune disorders
could this have had a hand in the onset
of my ms
we do know
that the workers including yourself that
were downtown or exposed to a variety of
toxins
that could potentially cause autoimmune
disease
and neurologic disease i myself have
seen a lot of people with multiple
sclerosis but at this point from a
governmental point of view
they don't think there's enough
evidence
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and i've inherited my family's tradition
of being on the move
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do
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like my family
i can't sit still
i've been to so many different countries
where travel vaccinations are required
could that have been impacted as to why
i got a mass
[Music]
so vaccines are something that have been
pretty conclusively not linked to ms
and of course ms existed well before any
of these vaccines existed
interestingly there are some vaccines
that may
reduce your risk of multiple sclerosis
so no if anything
those vaccines may
reduce your have reduced your risk
[Music]
well so much for that
all the variables that i explored are
ones that i personally had exposure to
however on my journey of discovery i
learned of other risk factors
there are a handful of risk factors that
we haven't covered yet
certain things like head trauma in high
school for example may be linked to
multiple sclerosis
obesity during the childhood years now
i've seen your first film and you were
not obese you're a skinny little kid so
we can rule that one off
cigarette smoking may increase the risk
you know if you ever smoke a lot and
then epsom bar virus most of us are
exposed to epsom bar virus in our early
childhood if you're exposed to epsom
virus slightly later in life in your
adolescence you can present with mono or
mononucleosis
so it's that delayed exposure that may
increase your risk of ms
i never had mono
i didn't really smoke and i was never
obese
yet more things to cross off the list
a number of factors can contribute
the risk of ms
the way i like to think about it is it's
like having an empty bucket
and each of these factors
is like a glass of water
eventually
if you pour enough glasses of water
into the bucket the bucket will overflow
presumably this is when your risk of ms
is greatest
the feeling is it's a
multi-factorial
process probably a combination of
environmental
genetic
factors they
interact with each other meaning that
exposure to something whether that's
smoking obesity
the level of sunlight
will probably um be relevant in context
of your genetic background
i'm confident there will be a cure
and in the interim they are coming out
with better and more efficacious
medications
so
that that gives me a lot of hope
i've been working in this field for
about gosh 20 to 30 years i lose track
and when i started we had
very
minimal treatments for relapsing forms
of ms and nothing for progressive ms
and nowadays
the treatments we have for relapsing ms
are much more effective and we have
something for progressive ms that slows
it down a little bit so i i am
optimistic i think that
patients with ms
should not feel guilty for a second that
they did something wrong or that they
did something
to deserve the disease and if only they
had done something differently they
wouldn't have gotten sick
who knows maybe maybe we'll discover one
day that there is some behavior
that leads to ms and and we can tell
people to avoid it but we're certainly
not there yet and that's a very
important message i think that people
should take home
[Music]
being diagnosed with a mess is
oftentimes considered tragic
i always like thinking of my life i've
seen the glass half full
when i was told that i have ppms and i
could be in a wheelchair
i found a way to turn it into something
that could help others
by 2008
my ability to walk really began to
deteriorate as i attempted to navigate
the world i discovered many barriers
preventing me from doing something as
simple as grabbing a coffee or having
lunch with friends
so i created access map a crowd-sourced
data-driven digital mapping tool
that allows its users great review
different venues on their accessibility
dozens of volunteers roam the streets of
san francisco today to rate the
accessibility of businesses for people
with disabilities
there might be a back entrance but you
would be going through the kitchen grow
the kitchen
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uh
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while nobody's found a cause or a cure
for a mess
its treatment has made great strides
i get two infusions a year to keep the
progression of my disease at bay
when i was diagnosed
i really felt like i lost control of my
body
[Music]
my quest for answers led to no
definitive conclusions
i'm left feeling frustrated that there's
no answer as to why i got ms
[Music]
yet also hopeful that my journey is not
at a tent
and one day there will be a fuller
understanding
about why people get multiple sclerosis
but i do know
that while we can't control everything
that happens to us
we can lean on each other for support
[Music]
you