[Music] It's sometimes called Lou
Gehrig's disease named after the Yankees
baseball player who is the first public
figure to suffer from this debilitating
condition, we're talking about ALS
amyotrophic lateral sclerosis, it's a rare
and rapidly progressive
neurodegenerative disease for which there is no
known cure.
This month is ALS awareness month and
today we meet a patient is living with
reality of ALS as we hear in his own
words what it's like.
It's a behind the
mystery take a look.
[music] Well when I get out of bed in
the morning the first challenge is
how to get from a prone position to an
upright position without using my hands
or arms because that's where my weakness
is, there are some things that I
simply cannot do anymore,
it's actually been 3 years that I've
been unable to button the the sleeve of
my right wrist so I ask for assistance
with that.
My tea mug is very simply too
heavy for me to lift so my adaptation is I drink
through drink it through a straw, the
hardest thing for me to know is exactly
when I'm going to stop being able to do
things.
I remember about a year ago
identifying what I called the big 4.
Which was the
ability to drive the ability to clean
myself to dress myself and to feed
myself.
My name is Steven Winthrop I'm 58 years
old I was diagnosed with ALS at the end
of 2013.
ALS stands for a very complicated name
called amyotrophic lateral sclerosis we
call it ALS it's less of a mouthful
historically it's been called Lou
Gehrig's disease worldwide it's often called
motor neuron disease.
ALS tends to strike you later in life
you've been healthy for you know decades
I mean ALS does get diagnosed with
people in their 20s but historically
it's more common to be diagnosed in your
40s or 50s and symptoms come out of
nowhere.
My very first symptoms they were nearly
six years ago when I noticed some muscle
twitching in my left forearm, no pain
just a twitch that wouldn't seemingly go
away but along the way I discovered
that a lot of the muscles in my left
hand left arm were weaker than the muscles
in my right, which is particularly odd
because I'm a lefty.
Every story for an als patient is
different but they're all tragic outcomes I mean this is a
relentless disease once symptoms start it
doesn't matter if it starts in your
hands, your legs, bulbar it is relentless it
progresses from that point on and right
now we don't have an effective treatment
that slows that process down.
When we first were told definitively by
a doctor that I had ALS I had a pretty
good idea that this was coming, the
impact on me and my family when we got
the news was devastating.
My wife and I
had two teenage daughters toughest day
in my life was the the day about four
days after my diagnosis when my wife and
I sat down with our two kids and told
them what ALS was.
My advice for patients
to prepare for what's going to happen with
ALS, is first of all to be to be educated enough to really
understand how how hard it might be, if they're
going to fight that battle to the end
then be prepared and understand to get
ahead of every possible thing because the
earlier you do interventions, the slower
the disease is going to progress.
It was within a few weeks of my diagnosis that my wife and I
realized that we had to make some changes
in her lives, particularly the space we
were living in.
There were several features to
the house, doors, windows others that we
deliberately designed to help me on my
journey.
The advice I would give to
anybody afflicted by ALS or a similar
condition is to think about ease of
movement through a space so we don't have
any scatter rugs in the house all it
takes is a quarter of an inch to
qualify as a tripping hazard we don't have
any thresholds that somebody could
trip over we have features like sand rails
on both sides of every stairwell, many
of the doors around the house have a
sensor inside the wall all I have to do
is move my shoulder so the sensors that
are inside the walls will activate
the motor that opens the door.
We've also incorporated a lot of very
simple features in the house having
doorknobs that are not knobs but levers
and also all of the outlets in the house
are about 15 inches off the ground
instead of being way down at shoe level.
We wanted a space that would be
easy for me to move through without using
too much energy.
So the earlier you can think
about you know how are you going to
intervene how you're going to keep your
quality of life up how you're going to
keep your family involved without what
are your caretakers need to look like
those are all decisions that they people
tend to try to make as early as they can
to keep their quality of life up and be
around with their family as long as they
can.
A qualified caretaker as an ALS
patients best friend it's a critical
component of your journey with ALS.
The caregivers of people with ALS are
the real heroes, my wife her life has
been permanently changed, the position
that I'm in at this stage of the disease
is that I know that's only going to get
harder with time.
I do have hope that I
will be alive to see the big breakthroughs that are I think
really some of them just around the
bend.
I think patients like Steven and the
entire ALS community should have a lot
of hope right now we know more about
this disease today than we did ten years
ago and the information that we've
accumulated in the last ten years to
understand this disease is larger than
the previous hundred years of what we
understood about ALS.
So we are at the ALs therapy Development
Institute in Cambridge Mass we have
26,000 square feet of lab space where
the largest Research Institute dedicated
to finding a treatment and a cure for
amyotrophic lateral sclerosis or ALS and
that really has permeated the culture of
ALS TDI for since our inception and
we're recognized as the world leaders in
the group that really systematically is
trying to understand how ALS starts, how
the symptoms first appear, how the
disease progresses and how we might
develop potential treatments that's
going to slow that process down and
eventually lead to a cure, and because we
understand the disease we are much more
rigorously testing potential treatments
it could end up in patients and I think
we're going to start to see the first
ones of those very very soon.
Anybody who's exposed to ALS wants to
learn as much as they can about the
disease as quickly as they can, the
amount of knowledge and information
that's out on the on the internet about
ALS is there's more now than there's
ever has been.
I mean we are probably one
of the most comprehensive web sites
around call ALS dot net it's a great
resource to really understand what's
going on in ALS today on a day to day
basis.
my message to patients when they
come into the Institute recently after
getting such a horrible diagnosis is to
make a decision to have hope and battle
this disease it's not going to be an
easy journey but if you're prepared for
the journey and if you get in front of
those things before they happen you're
going to be a lot more prepared in your
quality of life and the impact of your
day to day life is going to be less.
I have a lot of hope that because
of what we know now about ALS compared
to 10 or 20 years ago with the genetics
and the better quality animal models
that we're on the cusp or on the horizon of
those first disease modifying
treatments which is very very exciting.
I am believe in the depths of my soul
that there are people walking the planet
today who are going to see ALS stopped.
It's really just a question of when.
No doubt a story filled with hope
and so much important information that
anyone can use who is living with ALS,
and for more information on this rare
disease you can visit ALS dot net to
hear more from others of ALS or go to our
website thebalancingact.com stay with
us.
[Music]