trying to fall heir so I think I’m gonna be the first to uh go away from my
be the first to uh go away from my
be the first to uh go away from my script is the minute you’ve certainly
script is the minute you’ve certainly
script is the minute you’ve certainly heard some tremendously intelligent and
heard some tremendously intelligent and
heard some tremendously intelligent and accomplished people tonight and
accomplished people tonight and
accomplished people tonight and unfortunately now you’re stuck with me
unfortunately now you’re stuck with me
unfortunately now you’re stuck with me hey washed-up former athlete so I’ll
hey washed-up former athlete so I’ll
hey washed-up former athlete so I’ll give it my best
give it my best
give it my best the human body is capable of some truly
the human body is capable of some truly
the human body is capable of some truly remarkable things especially when is
remarkable things especially when is
remarkable things especially when is working the way it’s supposed to however
working the way it’s supposed to however
working the way it’s supposed to however it is so insanely complex you’ve heard a
it is so insanely complex you’ve heard a
it is so insanely complex you’ve heard a little bit about that day that our best
little bit about that day that our best
little bit about that day that our best and brightest doctors don’t really
and brightest doctors don’t really
and brightest doctors don’t really understand that I know that fact all too
understand that I know that fact all too
understand that I know that fact all too well you see I even always sounded like
well you see I even always sounded like
well you see I even always sounded like this or struggled for a breath deep
this or struggled for a breath deep
this or struggled for a breath deep enough to get one sentence out or needed
enough to get one sentence out or needed
enough to get one sentence out or needed a wheelchair or my wife to dress me in
a wheelchair or my wife to dress me in
a wheelchair or my wife to dress me in the morning five short years ago I was
the morning five short years ago I was
the morning five short years ago I was in peak physical condition I was
in peak physical condition I was
in peak physical condition I was finishing the final year of an 11-year
finishing the final year of an 11-year
finishing the final year of an 11-year professional hockey career the four
professional hockey career the four
professional hockey career the four years prior to that were spent here at U
years prior to that were spent here at U
years prior to that were spent here at U of M for I studied computer science and
of M for I studied computer science and
of M for I studied computer science and Noah Sophia I was never in the zone
probably why I didn’t end up at Google I
probably why I didn’t end up at Google I even assisted on the game-winning
even assisted on the game-winning
even assisted on the game-winning overtime goal that brought us our last
overtime goal that brought us our last
overtime goal that brought us our last national championship in 1998 even after
national championship in 1998 even after
national championship in 1998 even after leaving professional hockey behind I was
leaving professional hockey behind I was
leaving professional hockey behind I was still very physically active capable of
still very physically active capable of
still very physically active capable of running a six-minute mile hitting a golf
running a six-minute mile hitting a golf
running a six-minute mile hitting a golf ball well over 300 yards and whipping
ball well over 300 yards and whipping
ball well over 300 yards and whipping most flipping all of my buddies at
most flipping all of my buddies at
most flipping all of my buddies at racquetball so I was an athlete but I
racquetball so I was an athlete but I
racquetball so I was an athlete but I was certainly more than that I am a
was certainly more than that I am a
was certainly more than that I am a father and a husband in the spring of
father and a husband in the spring of
father and a husband in the spring of 2014
2014
2014 my daughter Reese was four and my son
my daughter Reese was four and my son
my daughter Reese was four and my son Owen was two
Owen was two
Owen was two I was about to celebrate seven years of
I was about to celebrate seven years of
I was about to celebrate seven years of marriage to my beautiful wife Katie
marriage to my beautiful wife Katie
marriage to my beautiful wife Katie there was nothing more that I enjoyed
there was nothing more that I enjoyed
there was nothing more that I enjoyed than jumping on the trampoline with my
than jumping on the trampoline with my
than jumping on the trampoline with my kids or chasing them around the backyard
kids or chasing them around the backyard
kids or chasing them around the backyard of running the neighborhood with my wife
of running the neighborhood with my wife
of running the neighborhood with my wife typically leaving her behind after a
typically leaving her behind after a
typically leaving her behind after a hundred yards let’s say but all of a
hundred yards let’s say but all of a
hundred yards let’s say but all of a sudden something started to change in my
sudden something started to change in my
sudden something started to change in my body a cramp in my forearm as they
body a cramp in my forearm as they
body a cramp in my forearm as they reaching the center console of my car
reaching the center console of my car
reaching the center console of my car for a pack of gum sickness in my finger
for a pack of gum sickness in my finger
for a pack of gum sickness in my finger as a hung drywall in my garage not being
as a hung drywall in my garage not being
as a hung drywall in my garage not being able to release a clenched fist easily
able to release a clenched fist easily
able to release a clenched fist easily not sure why I had a clenched fist but
not sure why I had a clenched fist but
not sure why I had a clenched fist but I’m a hockey player so don’t leave me as
I’m a hockey player so don’t leave me as
I’m a hockey player so don’t leave me as those things became more significant
those things became more significant
those things became more significant more frequent and more severe we decided
more frequent and more severe we decided
more frequent and more severe we decided to go see a general doctor after several
to go see a general doctor after several
to go see a general doctor after several months when multiple blood tests MRIs
months when multiple blood tests MRIs
months when multiple blood tests MRIs and examinations led nowhere
and examinations led nowhere
and examinations led nowhere he recommended that we see a neurologist
he recommended that we see a neurologist
he recommended that we see a neurologist so on August 20th 2014
so on August 20th 2014
so on August 20th 2014 we went to Bronson Hospital in Kalamazoo
we went to Bronson Hospital in Kalamazoo
we went to Bronson Hospital in Kalamazoo my neurologist wasn’t initially worried
my neurologist wasn’t initially worried
my neurologist wasn’t initially worried but after a thorough examination several
but after a thorough examination several
but after a thorough examination several diagnostic tests he brought us back into
diagnostic tests he brought us back into
diagnostic tests he brought us back into his office he shut the door he asked us
his office he shut the door he asked us
his office he shut the door he asked us to sit down I knew something was wrong I
to sit down I knew something was wrong I
to sit down I knew something was wrong I don’t remember much about what he said
don’t remember much about what he said
don’t remember much about what he said over the next several minutes but I do
over the next several minutes but I do
over the next several minutes but I do remember him using three letters that
remember him using three letters that
remember him using three letters that changed my life forever
changed my life forever
changed my life forever als amyotrophic lateral sclerosis Lou
als amyotrophic lateral sclerosis Lou
als amyotrophic lateral sclerosis Lou Gehrig’s disease
Gehrig’s disease
Gehrig’s disease I had prayed that he wouldn’t use those
I had prayed that he wouldn’t use those
I had prayed that he wouldn’t use those letters I googled my symptoms more times
letters I googled my symptoms more times
letters I googled my symptoms more times I can count over the previous few months
I can count over the previous few months
I can count over the previous few months and I knew what those letters meant ALS
and I knew what those letters meant ALS
and I knew what those letters meant ALS is a hundred percent fatal progressive
is a hundred percent fatal progressive
is a hundred percent fatal progressive neurological disorder that causes the
neurological disorder that causes the
neurological disorder that causes the death of neurons that control our
death of neurons that control our
death of neurons that control our voluntary movements that includes speech
voluntary movements that includes speech
voluntary movements that includes speech and breathing the average life
and breathing the average life
and breathing the average life expectancy of ALS patients is three to
expectancy of ALS patients is three to
expectancy of ALS patients is three to five years from symptom onset and about
five years from symptom onset and about
five years from symptom onset and about 90% of the cases mine included there is
90% of the cases mine included there is
90% of the cases mine included there is no knowing cause there is no treatment
no knowing cause there is no treatment
no knowing cause there is no treatment and ALS has no cure Wow you know what do
and ALS has no cure Wow you know what do
and ALS has no cure Wow you know what do you do with that kind of news I’m struck
you do with that kind of news I’m struck
you do with that kind of news I’m struck by the words that I read recently in an
by the words that I read recently in an
by the words that I read recently in an article on the place should be in by
article on the place should be in by
article on the place should be in by Jeff Cable who is the assistant
Jeff Cable who is the assistant
Jeff Cable who is the assistant basketball coach at Duke University he’s
basketball coach at Duke University he’s
basketball coach at Duke University he’s mentioning these words after hearing the
mentioning these words after hearing the
mentioning these words after hearing the diagnosis of his father with ALS
diagnosis of his father with ALS
diagnosis of his father with ALS he says google of WebMD are greatly
he says google of WebMD are greatly
he says google of WebMD are greatly sources for giving you information about
sources for giving you information about
sources for giving you information about disease what those things don’t tell you
disease what those things don’t tell you
disease what those things don’t tell you is how to live your life after getting a
is how to live your life after getting a
is how to live your life after getting a diagnosis like that or the fact that
diagnosis like that or the fact that
diagnosis like that or the fact that life goes on even that very day there is
life goes on even that very day there is
life goes on even that very day there is no playbook to living with ALS so we set
no playbook to living with ALS so we set
no playbook to living with ALS so we set out to create our own that very night we
out to create our own that very night we
out to create our own that very night we got together with our closest friends we
got together with our closest friends we
got together with our closest friends we cried we laughed we drank a lot of red
cried we laughed we drank a lot of red
cried we laughed we drank a lot of red wine and we talked about our bucket list
wine and we talked about our bucket list
wine and we talked about our bucket list over the next couple of years we
over the next couple of years we
over the next couple of years we traveled a lot we said yes absolutely
traveled a lot we said yes absolutely
traveled a lot we said yes absolutely everything we could we created some
everything we could we created some
everything we could we created some amazing memories but the symptoms of my
amazing memories but the symptoms of my
amazing memories but the symptoms of my ALS got worse more loss more death of
ALS got worse more loss more death of
ALS got worse more loss more death of neurons let the muscle loss and atrophy
neurons let the muscle loss and atrophy
neurons let the muscle loss and atrophy which led to more weakness and continued
which led to more weakness and continued
which led to more weakness and continued loss of strength and my body my speech
loss of strength and my body my speech
loss of strength and my body my speech and breathing was beginning to be
and breathing was beginning to be
and breathing was beginning to be affected hmm excuse me my day-to-day
affected hmm excuse me my day-to-day
affected hmm excuse me my day-to-day life was significantly impacted I was
life was significantly impacted I was
life was significantly impacted I was facing new challenges before the disease
facing new challenges before the disease
facing new challenges before the disease I might have been challenged this was
I might have been challenged this was
I might have been challenged this was right to run a 5 minute mile or to shoot
right to run a 5 minute mile or to shoot
right to run a 5 minute mile or to shoot a round of golf in the low 70s and for
a round of golf in the low 70s and for
a round of golf in the low 70s and for you golfers out there that’s a 73 at
you golfers out there that’s a 73 at
you golfers out there that’s a 73 at Kingsley Country Club up north so that’s
Kingsley Country Club up north so that’s
Kingsley Country Club up north so that’s legit you know it became a challenge to
legit you know it became a challenge to
legit you know it became a challenge to walk through the mailbox or dress myself
walk through the mailbox or dress myself
walk through the mailbox or dress myself now it’s a challenge to hold the plastic
now it’s a challenge to hold the plastic
now it’s a challenge to hold the plastic spoon without my arm shaking so much the
spoon without my arm shaking so much the
spoon without my arm shaking so much the food falls off or opening my car door or
food falls off or opening my car door or
food falls off or opening my car door or getting up out of a chair
it began to feel like I was losing
it began to feel like I was losing something every week something mundane
something every week something mundane
something every week something mundane like buttoning a shirt something
like buttoning a shirt something
like buttoning a shirt something extraordinary like running or skating
extraordinary like running or skating
extraordinary like running or skating ALS is slowly paralyzing my body and
ALS is slowly paralyzing my body and
ALS is slowly paralyzing my body and taking away my ability to speak and
taking away my ability to speak and
taking away my ability to speak and breathe on my own more than that though
breathe on my own more than that though
breathe on my own more than that though ALS is stealing my future I will not
ALS is stealing my future I will not
ALS is stealing my future I will not walk my daughter Reese down the aisles
walk my daughter Reese down the aisles
walk my daughter Reese down the aisles someday I will not meet the life of my
someday I will not meet the life of my
someday I will not meet the life of my son
son
son Owens life I will not hold a grandchild
Owens life I will not hold a grandchild
Owens life I will not hold a grandchild someday ALS is going to kill me I am 38
someday ALS is going to kill me I am 38
someday ALS is going to kill me I am 38 years old silvering thought I know
years old silvering thought I know
years old silvering thought I know but haven’t many of us considered that
but haven’t many of us considered that
but haven’t many of us considered that back how we would live our lives if we
back how we would live our lives if we
back how we would live our lives if we knew we were dying how many countless
knew we were dying how many countless
knew we were dying how many countless songs have been written about that idea
songs have been written about that idea
songs have been written about that idea I felt like I had a choice an
I felt like I had a choice an
I felt like I had a choice an opportunity what would I do with the
opportunity what would I do with the
opportunity what would I do with the time I had lost as I said I had a choice
time I had lost as I said I had a choice
time I had lost as I said I had a choice but it’s not that much different from
but it’s not that much different from
but it’s not that much different from the choices that we all have at certain
the choices that we all have at certain
the choices that we all have at certain parts of our life after losing a loved
parts of our life after losing a loved
parts of our life after losing a loved one
one
one or a job after not getting into the
or a job after not getting into the
or a job after not getting into the College of your choice as natholi after
College of your choice as natholi after
College of your choice as natholi after suffering a season-ending or
suffering a season-ending or
suffering a season-ending or career-ending injury after being
career-ending injury after being
career-ending injury after being diagnosed with a fatal disease I had a
diagnosed with a fatal disease I had a
diagnosed with a fatal disease I had a choice to be a victim to blame a high
choice to be a victim to blame a high
choice to be a victim to blame a high power to feel sorry for myself to stop
power to feel sorry for myself to stop
power to feel sorry for myself to stop living but honestly it didn’t feel like
living but honestly it didn’t feel like
living but honestly it didn’t feel like I had much of a choice at all that’s not
I had much of a choice at all that’s not
I had much of a choice at all that’s not how I had lived my life before so why
how I had lived my life before so why
how I had lived my life before so why would I start now
would I start now
would I start now I chose to live life to the fullest –
I chose to live life to the fullest –
I chose to live life to the fullest – laughs to love and to soak up every
laughs to love and to soak up every
laughs to love and to soak up every moment that I had last more importantly
moment that I had last more importantly
moment that I had last more importantly I’ve chosen to become a difference maker
I’ve chosen to become a difference maker
I’ve chosen to become a difference maker we formed my turn an organization
we formed my turn an organization
we formed my turn an organization dedicated to helping spread awareness
dedicated to helping spread awareness
dedicated to helping spread awareness about ALS it has become my guiding light
about ALS it has become my guiding light
about ALS it has become my guiding light my reason for getting out of bed in the
my reason for getting out of bed in the
my reason for getting out of bed in the morning and my legacy it’s my
morning and my legacy it’s my
morning and my legacy it’s my opportunity to do something bigger than
opportunity to do something bigger than
opportunity to do something bigger than myself
myself
myself to do something long last thing that I
to do something long last thing that I
to do something long last thing that I can be proud of and hopefully my
can be proud of and hopefully my
can be proud of and hopefully my children can be proud of me for someday
children can be proud of me for someday
children can be proud of me for someday it’s my opportunity to carry the torch
it’s my opportunity to carry the torch
it’s my opportunity to carry the torch and take my turn while empowering the
and take my turn while empowering the
and take my turn while empowering the people around me cleaning well including
people around me cleaning well including
people around me cleaning well including all of you to take your turn I’ve
all of you to take your turn I’ve
all of you to take your turn I’ve learned some incredible lessons along
learned some incredible lessons along
learned some incredible lessons along the way and I’d like to share a couple
the way and I’d like to share a couple
the way and I’d like to share a couple of those with you you know as I look
of those with you you know as I look
of those with you you know as I look around the world today
around the world today
around the world today I see a politically divided America
I see a politically divided America
I see a politically divided America civil unrest in the Middle East and
civil unrest in the Middle East and
civil unrest in the Middle East and elsewhere and in this era of 24-hour
elsewhere and in this era of 24-hour
elsewhere and in this era of 24-hour news outlets a seemingly endless stream
news outlets a seemingly endless stream
news outlets a seemingly endless stream of shootings terrorism and if they also
of shootings terrorism and if they also
of shootings terrorism and if they also can scarce with you know it’d be easy to
can scarce with you know it’d be easy to
can scarce with you know it’d be easy to look at the world as a dark and
look at the world as a dark and
look at the world as a dark and unforgiving place for what we have seen
unforgiving place for what we have seen
unforgiving place for what we have seen has been almost the exact opposite we
has been almost the exact opposite we
has been almost the exact opposite we have seen an unwavering show of support
have seen an unwavering show of support
have seen an unwavering show of support and compassion from our friends
and compassion from our friends
and compassion from our friends and family of course from my ex
and family of course from my ex
and family of course from my ex teammates teams I played for of course
teammates teams I played for of course
teammates teams I played for of course but also from people I’ve never met in
but also from people I’ve never met in
but also from people I’ve never met in places I’ve never visited you can
places I’ve never visited you can
places I’ve never visited you can imagine how important that support and
imagine how important that support and
imagine how important that support and compassion and the countless messages of
compassion and the countless messages of
compassion and the countless messages of encouragement have been they have hosted
encouragement have been they have hosted
encouragement have been they have hosted me up allowed me and my family to face
me up allowed me and my family to face
me up allowed me and my family to face this dreadful disease head-on it has
this dreadful disease head-on it has
this dreadful disease head-on it has pushed me to become a better person a
pushed me to become a better person a
pushed me to become a better person a better father a better son above her
better father a better son above her
better father a better son above her husband and a better friend I have
husband and a better friend I have
husband and a better friend I have learned that the people around me and I
learned that the people around me and I
learned that the people around me and I believe people in general have a deep
believe people in general have a deep
believe people in general have a deep yearning to help and show compassion
yearning to help and show compassion
yearning to help and show compassion when given the opportunity so let’s not
when given the opportunity so let’s not
when given the opportunity so let’s not be afraid to let people in and give them
be afraid to let people in and give them
be afraid to let people in and give them that opportunity the second lesson I
that opportunity the second lesson I
that opportunity the second lesson I want to share is about perspective I
want to share is about perspective I
want to share is about perspective I would assume it would be easy for all do
would assume it would be easy for all do
would assume it would be easy for all do you recognize that my perspective on
you recognize that my perspective on
you recognize that my perspective on life has changed dramatically one where
life has changed dramatically one where
life has changed dramatically one where I’m not sweating the small stuff and I’m
I’m not sweating the small stuff and I’m
I’m not sweating the small stuff and I’m certainly not crying over spilled milk
certainly not crying over spilled milk
certainly not crying over spilled milk and I feel like I’ve mainly done that
and I feel like I’ve mainly done that
and I feel like I’ve mainly done that although with a five and a seven year
although with a five and a seven year
although with a five and a seven year old at home who seemed to be hard of
old at home who seemed to be hard of
old at home who seemed to be hard of hearing it can be hard sometimes but
hearing it can be hard sometimes but
hearing it can be hard sometimes but what I didn’t necessarily expect was the
what I didn’t necessarily expect was the
what I didn’t necessarily expect was the impact it would have on other’s lives
impact it would have on other’s lives
impact it would have on other’s lives I had been reluctant to tell people
I had been reluctant to tell people
I had been reluctant to tell people about my disease mainly in fear of not
about my disease mainly in fear of not
about my disease mainly in fear of not wanting to ruin their day for the moment
wanting to ruin their day for the moment
wanting to ruin their day for the moment or experience that we were having
or experience that we were having
or experience that we were having instead what I’ve seen is it strengthen
instead what I’ve seen is it strengthen
instead what I’ve seen is it strengthen the friendship
the friendship
the friendship bonds and I had help create new ones and
bonds and I had help create new ones and
bonds and I had help create new ones and more than that I’ve seen it have an
more than that I’ve seen it have an
more than that I’ve seen it have an impact on how others looked at their own
impact on how others looked at their own
impact on how others looked at their own life and for that I’m so proud I have
life and for that I’m so proud I have
life and for that I’m so proud I have not looked at my diagnosis as the end
not looked at my diagnosis as the end
not looked at my diagnosis as the end but rather as the beginning the
but rather as the beginning the
but rather as the beginning the beginning of a new opportunity the
beginning of a new opportunity the
beginning of a new opportunity the beginning of a movement my turn
beginning of a movement my turn
beginning of a movement my turn we may only be a tiny pebble in a pond
we may only be a tiny pebble in a pond
we may only be a tiny pebble in a pond but I can see the ripple enough ripples
but I can see the ripple enough ripples
but I can see the ripple enough ripples and maybe we have a wave enough wave and
and maybe we have a wave enough wave and
and maybe we have a wave enough wave and maybe we can create a tsunami like I
maybe we can create a tsunami like I
maybe we can create a tsunami like I said earlier I had a choice to lie down
said earlier I had a choice to lie down
said earlier I had a choice to lie down or stand up not chosen to stand up I’m
or stand up not chosen to stand up I’m
or stand up not chosen to stand up I’m gonna fight for as long as I possibly
gonna fight for as long as I possibly
gonna fight for as long as I possibly can but the most important part of my
can but the most important part of my
can but the most important part of my journey has not about me it’s about
journey has not about me it’s about
journey has not about me it’s about yield and now it’s your turn to stand up
yield and now it’s your turn to stand up
yield and now it’s your turn to stand up it’s your turn to let people in it’s
it’s your turn to let people in it’s
it’s your turn to let people in it’s your turn to show compassion it’s your
your turn to show compassion it’s your
your turn to show compassion it’s your turn to look at your life differently
turn to look at your life differently
turn to look at your life differently and it’s your turn to become a
and it’s your turn to become a
and it’s your turn to become a difference maker this disease is going
difference maker this disease is going
difference maker this disease is going to silence me but it’s not gonna silence
to silence me but it’s not gonna silence
to silence me but it’s not gonna silence all of us and together we can’t be
all of us and together we can’t be
all of us and together we can’t be stopped
stopped
stopped thank you and go blue
”
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