Beyond the Ice Bucket Challenge – Battling ALS

(upbeat music) ANNOUNCER: This Viewfinder
episode is supported by UC Davis Health, where
doctors, nurses, researchers, and staff share a passion
for advancing health. Learn more about their
latest medical innovations at Narr: Every 90 minutes,
someone is diagnosed with ALS, or Lou
Gehrig’s Disease. Pete: The normal lifespan
is two to five years, and I’m almost at the
five year mark right now. Narr: ALS is a rare
and fatal disease. Shelly: My parents are
still alive. They don’t want to
see their kid die. Shonta: Just not having
any therapies, anything for a disease in
America, to me, is unacceptable. Narr: For the first
time in 22 years, a new ALS drug is approved. Mary Ann: Because of this
medication, I may see a cure maybe in my lifetime. Narr: Sadly, no one’s immune. The football world loses
San Francisco 49er icon, Dwight Clark, to ALS. Turner: You can’t move and you
become trapped in your own body. Narr: We’ll uncover
the latest research and explore the long
road still ahead as we go Beyond the Ice Bucket
Challenge: Battling ALS. (calm music) (splashing) Narr: In 2014, millions of
people are dumping cold water over their heads for the
ALS Ice Bucket Challenge. That challenge became a
viral fundraising sensation. Wow, I mean, that was huge. It raised $115 million, which is enormous. It’s so much money, but
it also raised awareness. Narr: The Ice Bucket
Challenge funded ALS research, new clinics, and
expanded loan closets. Pete needed a wheelchair
and he didn’t qualify under the insurance rules yet, and so we had to wait
for another year. And they gave us a great
loaner wheelchair for a year. Narr: Amy Sugimoto
is executive director of the Greater Sacramento
ALS Association. Shelly Hoover represents
patients on the
board of directors. A fiery Pepper Challenge
is underway to find a cure. Shelly: Four years ago, I
dumped ice over my head. (squealing) Now we’re doing the opposite
with the hot pepper. (crunching) Hmm. (laughing) Narr: The
challenge is simple. Whoo. Narr: If you’re nominated, eat the hottest pepper you can, and then donate to your
local ALS association. To finding a cure. (crunching) Wowza. Nate: This is for all the
victims and friends and family that have to go through
this horrible disease. (crunching) Narr: 34 year old
Nate Arnold was diagnosed with ALS a year ago. It blows me away that there
is a disease like this. Narr: Nate’s becoming
unsteady on his feet and has fallen a few times. Nancy Wakefield runs the loan
closet at the ALS association. Nate: It’s a degenerative neurological disease
that is progressive and there’s no cure. Basically your body wastes away, yet leaves you your
cognitive abilities intact. So your body becomes your prison. The loan closet is probably
our most popular program here. And it’s not even just for
people who don’t have insurance. You may have insurance,
but some of the equipment is so expensive that
your deductible is more than what you can afford. Nate: Yeah, I ask why me
every day. Every day I’m waking up expecting to be normal again. Feels pretty good. NANCY: They will initially
see it, that that’s giving up some of their independence. It’s giving in to the disease. Then they get into that
chair and wow, wait a minute. They recognize, okay, this means I still can have
some independence. Narr: Power chairs can
cost upwards of $50,000. Equipment is expensive. With support from
the ALS association, Nate’s embracing his
journey like a champion. Nate: It takes your
body but you gotta try not let
it take your spirit. Narr: ALS is Lou
Gehrig’s Disease. In 1939, the beloved
Yankee first baseman announced to the
world he had ALS. Gehrig lived two more years
and died at the age of 37. The disease was
discovered in France during the mid 1800s, but
it was Gehrig who brought international attention to ALS. That’s why it’s often
called Lou Gehrig’s Disease. Amy: It does statistically
heavily hit white older Caucasian men,
but really there is no, we’ve had people from
all walks of life, all socioeconomics, all races. Absolutely nobody is immune. This disease can
literally affect anybody. I personally believe there’s
a lot of people out there with ALS that never
get diagnosed. Narr: ALS, or amyotropic
lateral sclerosis is difficult to diagnose. It attacks nerve cells in
the brain and spinal cord. As motor neurons die, the
brain loses the ability to control muscle movement. Shelly: llI was in the best
shape of my life, and then I started falling. The neurologist said, well,
it’s possible that you might have ALS, but I
really can’t tell. There’s no definitive
test for ALS. You rule out everything else
that could possibly be wrong. Narr: ALS affects
everyone differently. Shelly: Good coffee. I was in a wheelchair by
the time I was diagnosed. I’ve just lost my
use of my shoulders and my arms in the last year. It’s really a disease of loss and grief. Narr: Shelly was 47
when she was diagnosed. That was five years ago. (pensive music) Even with this
horrible diagnosis, I’ve got a couple years that we can really
make the best of. So that was a pretty
life-changing day. Narr: Shelly’s a veteran and that puts her at
high risk for ALS. Shelly: Navy, joined
the Navy at 17. Narr: Why veterans? Ryan: That’s a great question. We would like to know that, the military would
like to know that, the public would
like to know that. We know that veterans
have somewhere between a two to three
time chance of getting ALS compared to people who are
not serving in the military. Shelly: It’s usually very
physically active people, people who push
themselves to the limits that may cause an
additional stress. So you add that to
exposure to pesticides and a predisposition,
we really don’t know. Ryan: It could be the
infantry soldier fighting a war. It could be the person
who sat at a desk. Narr: The Veterans
Administration, or VA, recognizes ALS as a
service-related illness. Shelly: Fortunately with the VA, we’re not financially
ruined by the disease. It costs well over
$200,000 a year between equipment,
and now if you add this latest medication,
it’s another 145,000. Narr: The
medication is Radicava. Approved by the FDA
in January of 2018, it’s the first new drug
for ALS in 22 years. Shelly: When I take the
infusions, I picture like little super heroes
running through my veins helping to conquer the disease. But we really don’t
know what kind of effect it’s gonna have long term. But I am certainly
willing to try because the alternative is dying or progressing
more quickly. (calm music) Narr: The infusion
takes about an hour. It’s used two weeks on,
two weeks off, forever. I feel really good but what an irony at the
same time, I’m dying, actively in the death process. So it’s just a mind… it messes with
your mind for sure. Narr: Shelly’s husband,
Steve, is her caregiver. Shelly: The caregivers
in the ALS world are really the most
courageous heroes. Steve: There’s less and less
she can do for herself. Really the one thing she
can still do for herself, she can still text a little bit and she can still
brush her teeth. Other than that, I
have to do everything. Narr: Shelly
anticipates she may lose the ability to talk. Shelly: And then this
will speak for me. Narr: Eye gazing
technology is helping her use a computer. In the future, it
will speak for her. Shelly: The computer is
called a Tobii Dynovox and it’s a Microsoft Surface
tablet with an eye gaze camera. So it’s calibrated
to follow my eyes and wherever I’m looking,
that’s the mouse. I love my life. Narr: Eye muscles
are resilient to ALS. Reflections picked up by a
camera tell the eye tracker where you’re looking. Shelly: So now we’re like
1600 phrases that I recorded and they synthesized my voice. [Shelly’s Computerized
Voice] Coffee please. Hey Steve, I really appreciate
everything you do for me. (laughs) [Man’s Computerized Voice]
ALS Ice Breaker Challenge. Narr: The technology
is how famed physicist Professor Stephen Hawking
continued lecturing at Cambridge University. [Man’s Computerized Voice]
Because I had pneumonia last year, it would
not be wise for me to have a bucket of cold
water poured over me. (laughing) But my children
gallantly volunteered to take the challenge for me. (screaming) Nannette: Stephen Hawking was
a unique patient. He had juvenile ALS. Juvenile ALS is typically
considered to be a more slowly
progressive disease. But he also used all of the
tools to extend his life and to continue to work
within his passion. Narr: Juvenile
ALS is very rare. Hawking lived five
decades with the disease. He died in 2018
at the age of 76. Nannette: He was so engaged in
life that there was a reason for him to
continue to live. Narr: Shelly
has sporadic ALS. It accounts for
about 90% of cases. Shelly: Do you want
to go for a walk? Narr: Patients say
awareness of the disease makes them feel less
isolated and alone. Shelly: Overall, people
had never heard of it. And then after the
Ice Bucket Challenge, most people at least heard of it and the awareness was amazing. Narr: Shelly has
a doctorate degree. She’s a wife, mother,
daughter, and grandmother. Shelly: When I look
at the big picture, my life is incredibly blessed. So I’m not ready to give up. That’s what keeps me going. Nannette: They also are
cognitively intact. They know what is
happening in their life and they live at
this period of time that people write songs about, where they know they
are in the process of the end of their life, and can experience moments with greater depth
and satisfaction. Narr: Patients are
living fuller lives with state of the art care. UC Davis is a certified
ALS Center of Excellence, providing multi-disciplinary
treatment. It’s also actively researching. Nannette: There’s literature
that documents that a patient who is treated
in a multi-disciplinary care has their life extended and
their quality of life improved. Narr: This is a
tough day at the clinic for Tom and Laura Christofk. Tom’s a veteran and
they’re struggling with his recent ALS diagnosis. Nannette: You have to have a
whole team of experts who treat patients with ALS. A physician, a neurologist,
we have a speech therapist, we have a nutritionist, we
have an occupational therapist, we have a social worker. RYAN: I have certain aspects
of their medical treatment that I take care of, and then
Dr. Joyce has certain aspects of their medical treatment
that she takes care of. Narr: To also provide
Dignity Health ALS patients with excellent care, the
UC Davis clinic serves those patients as well. Ryan: It makes most sense
to have Dignity work with the established
team at UC Davis to take care of those patients. We just have one great
team that takes care of all the patients
with ALS in the system. Nannette: ALS is a rapidly
changing disease. A patient that you see one day, three months later is gonna
be a very different person with very different needs. Hi Sweetie, how are you doing? Narr: Pete Richards’
lungs are impacted by ALS and he needs a
ventilator to breathe. Lachi: Here you go. Narr: Pete’s wife,
Lachi, and caregiver, Austin Van Bruggen, do
the morning routine. Austin: How’d you sleep? Slept good. Good night sleep last night. Narr: Every morning
after Pete wakes up, he’s connected to an
airway clearance system. Lachi: Well we call it
the jiggle machine because it jiggles Pete’s chest and it loosens up all the
phlegm that’s in his lungs. And it’s essentially an
aid to keep the fluid out of his lungs so that
he doesn’t get pneumonia. And we do that every
morning for 20 minutes. Narr: Austin
graduated from UC Davis and is enrolling
in nursing school. Austin: I help Lachi and
Pete out with whatever they
need me to do really. But primarily I help with
getting him out of bed, showering, cooking dinner,
cleaning around the house, dressing, things like that. This is something
I just love doing so it comes pretty easily. Without the full
ventilation like I have now, I might not have lived
two years or three years after diagnosis, and now we’re
four and a half years out. So I feel pretty lucky really. Narr: Pete’s
grateful for what he has and can still do, like
brushing his own teeth. A few years ago, Pete used
to be Lachi’s caregiver. Pete: And it’s kind of
interesting because she had a condition when we got married, and it’s been over 25 years ago. And so our roles are
kind of reversed now, whereas I was
taking care of her, and now it’s kind of
gone the other way. But we’ve always had a
really great relationship. Narr: Pete sold his coin shop in downtown Davis after
his ALS diagnosis. Pete: Your world gets
smaller as time goes on, but you can still try to do the, try to be happy and try to get
through it even though things are being
more restrictive. Narr: Pete enjoys reading
the paper with breakfast. Eating independently
is made possible by use of what’s called an Obi. It’s a programmed eating arm. Pete: It saves my hands for
later. Lachi: And when
I was feeding him before we had the machine, then I would give him
a bite, give me a bite. So this way, we both get to eat and talk together
at the same time. Pete: Right. Lachi: I’ve been really happy that we’ve had
this time together, that he just didn’t pass
away really quickly. And we’ve had time to
settle with the news of what’s happening, time to be together, time
to say all the things that we wanted to
say to each other. Because I had already been
sick and was in a wheelchair, we had already modified the
house before he got sick. So the doorways had been widened and the ramps were already in and we already had
an adaptive van. Pete: I’ve always
been optimistic. We have such a
beautiful home here and gardens and
things like that. I don’t need to
go anywhere else. Narr: Caregiver Austin has
become like an adopted son. So I am going to eat this
habanero pepper for Pete and for ALS and to
bring awareness. (sighs) Narr: Pete’s grateful
he’s able to speak. Okay, it’s a slow build. (hiccups) There they are. Hiccups are coming. Narr: Some ALS patients lose their voice muscles early on. (groaning) [Barbara’s Computerized
Voice] I’ve lost the ability to speak. Narr: Patient Barbara
Scott uses a text-to-speech phone app to communicate. [Barbara’s Computerized
Voice] Diagnosed March 28th. Narr: Kaiser Permanente
has a multi-disciplinary ALS Clinic in Sacramento. Aaron: The goal is to give these
patients a one stop shop to get the care that they
really need and deserve in one visit. We bring the services to them. And then we try to make
sure that the most important services are seen first. So, for instance, if a
patient is having a lot of breathing difficulties,
we want to make sure the respiratory
therapist gets in first. Patrice: Deep, deep, deep,
deep, and blow, blow, blow, blow, blow,
blow, blow, blow, blow. Aaron: At Kaiser, we have
a fair number of patients who are veterans as well. Dean: I served in the
military from ’63 to ’66 mostly in Fort Bragg,
North Carolina, but then in Vietnam. Hold them there. Narr: Physical
therapists evaluate strength and muscle movement. Jennifer: Tight little
man curl. Karen: Hi, I’m Karen. Daniel: Karen? Karen: Karen Lowe,
the speech therapist. Speech therapist. Can you tell me your name? My name is Daniel Schurph. Aaron: Most patients will come
in every three months. If they’re really
not doing well, we’ll bring them in
every month or sooner. Narr: Like other
multi-disciplinary ALS centers, patients stay in one room as
therapists and doctors rotate. Doctor: How have you
been doing since we last saw you? I feel like I’m getting
a little weaker. Doctor: Mm-hmm. Learn in life that
the harder you try the better you get. Narr: NFL Hall
of Famer Ronnie Lott is tackling ALS
head-on and with force. Two former 49er teammates
have lost the battle with the disease. First, Eric Scoggins,
now, icon Dwight Clark. Dwight’s wife, Kelly,
tweeted she’s heartbroken, but thankful for all of
Dwight’s friends, teammates, and 49ers fans who
have sent their love during his battle with ALS. Lott: The people that I’ve
been around that I know, that have been extraordinary, they try harder
than most people. And why they try harder
than most people, to me, is that they care. January 12th, 2007, that date my husband,
Eric Scoggins, was diagnosed with ALS, and from there, life changed for us both completely. Narr: Every year,
Shonta Scoggins teams up with former San Francisco
49er players Ronnie Lott and Keena Turner to raise
money and awareness for ALS. Shonta: We put our heads
together to try to bring people together and make
folks aware about it. And in the interim, Eric passed away in
less than two years with being diagnosed from ALS. Narr: They came up with
a walk/run fundraising event called Eric’s Vision. It’s an awful disease, awful disease, and we have to find a cure. I’m here today in support
of the ALS movement, in memory of my good
friend, Eric Scoggins. Narr: Eric Scoggins
played a short stint with the 49ers, but
had been good friends with Ronnie and Keena since
college football days. Lott: The diagnosis of
watching a person that was the MVP of the
USC game against Alabama, watching a person who
had to walk on to compete to play with the 49ers, I knew
that he could deal with it. What I didn’t know was the speed and the impact
that it would have on so many people. His family, his friends, his wife. Shonta: Ronnie and Keena,
there was not a appointment that Eric went to that either
of those guys were not at. And they were there at
diagnosis and as well as they were there when Eric
took his last breath. Narr: One day a year,
Ronnie’s Toyota dealership in Tracy hosts the event. Sadly, the disease continues
to take a devastating toll. 49er icon Dwight Clark
announced his ALS diagnosis in March of 2017. (gentle music) About a year after
that announcement, Dwight Clark died of
ALS at the age of 61. (cheering) ALS put Shonta on
a powerful mission. Shonta: I always try to keep a
positive outlook on whatever it
is. Well, it’ll stop here. Okay, so we’re at the
point that he can’t walk. It’ll stop here. No, that wasn’t it. Then he lost his voice. Okay, it’ll stop here. No, then his
breathing, all that. It never stopped. Narr: Shonta agreed to
donate her husband’s brain and spine to research. Shonta: Once we did that
and they did their research, they did find that
protein in his brain as far as with the concussions. So, it’s not conclusive
that that’s what did it or where or how it all
triggered the disease, but he did have that
protein in his brain. Narr: After
his ALS diagnosis, Dwight Clark wrote a
letter to the public. In it, he addressed
head trauma, writing, “I’ve been asked if playing
football caused this.” He continued, “I
don’t know for sure. “But I certainly
suspect it did.” He encouraged making
the game safer. Turner: For sure our community,
the professional football, has been affected. For me it’s been personal
that two teammates that I played with have
come down with the disease. Shonta: For the last few
years, I’m trying to care for someone in the community. Narr: Mary Ann
Lemos-Silva is a single mom living with ALS. Shonta: We rally around her,
and putting our arms around her and trying to make sure
that she lives the best life that she can while
she’s battling ALS. Narr: The new
medication Radicava is working well for Mary Ann. It’s supposed to
slow the progression but I feel a little regression. Narr: Mary Ann has a
very rare familial ALS. Her father died of the disease. She has two kids and
they have a 50-50 chance of developing ALS. I really feel that
there’s a cure coming and that this will help me stick around long
enough to see it. That the Radicava
will do that for me. (upbeat dance music) Narr: At Eric’s Vision,
Ronnie busts a move, for ALS. Shonta: This should be something
that should be a top priority to try to find a cure because currently
it’s just fatal. Lott: I’m very fortunate to be
around some of the best ever, like Jerry Rice, like Dwight
Clark, like Joe Montana. And they try so hard every day to have excellence
in their life. And when you’re
around this community, ALS, you see the same thing. Narr: A habanero
pepper didn’t scare off gutsy four-time Super
Bowl Champion Ronnie Lott. (cheering) Shonta Scoggins
also ate a pepper. Turner: It just takes
money, right? It takes enough of us
to care to keep pushing and driving, and I
think we’re close. Lott: Learning how to lose and still win,
it’s really hard. And learning how
to win in dying is even harder. (calm music) ANNOUNCER: This Viewfinder
episode is supported by UC Davis Health, where
doctors, nurses, researchers, and staff share a passion
for advancing health. Learn more about their
latest medical innovations at (upbeat music)

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