10thirtysix | Program | #311, Facioscapulohumeral Muscular Dystrophy

10thirtysix | Program | #311, Facioscapulohumeral Muscular Dystrophy


(bright music) – Hello, welcome to
the September edition
of “10thirtysix” here on Milwaukee PBS. I’m Portia Young. In this episode, we’ll
explain how our documentary “You’re Not Alone” on
youth mental health is making an impact
with state legislators. Plus, meet a youth
baseball coach who isn’t letting his
disability get in the way of teaching his team to play
fearless on and off the field. And John McGivern has a
conversation with this bagpiper about his passion for the pipes. Our documentary on youth mental health, “Kids
in Crises: You’re Not Alone,” continues to resonate
with young people and mental health experts
across our state, country, and even as far
away as Hong Kong. Wisconsin task force on suicide
prevention in the assembly has invited the film’s producers
and teens featured in it to Madison later this month as
the task force finalizes some policy recommendations when
it comes to mental health. I talked with the chair of that
bi-partisan task force about the crises we’re facing,
and the role our documentary has played in shaping new
mental health policies here in Wisconsin. Welcome representative Ballweg,
thank you for being here. Thank you very much
for the invitation. So you’re the chair of the
assembly’s task force on suicide prevention. Your
committee has looked into this issue across our state. Can
you give us some perspective on how bad the issue is in our
state, and then how did we get there? – Actually, when it
comes to averages, we’re just a little bit higher
than the national average. But we thought that this
was a very important topic to take a look at to figure out where the
silos are where we can work together as a state in
many different areas, regions, and the state being a
partner, to do a better job. I think the biggest thing we
need to think about when it comes to suicide prevention, is the stigma regarding
just reaching out for help when it comes to
behavioral health. And encouraging everyone that their friends and family should be asking
for help if needed. – Has the task force found
why there is that stigma in today’s day and age? – That’s a- That’s a good question. I think that is
something that is typically misunderstood by many people that there is treatment. That’s why I think one of the
things that we’re encouraging people to get involved in, is
the QPR training that we’re gonna be doing at some of our
task forces and when we roll this out on the 25th
at the state capitol. QPR is “question, persuade, refer.” It’s considered the CPR of mental health, and the more people that we
have understanding what the questions are how to, how to understand some of the
comments that people may make in casual conversation. It could be clues to someone
that really needs to be encouraged to seek some
counseling or some treatment. – And that’s the reason why
PBS and Milwaukee PBS has taken a closer look at
this. Our documentary, “Kids in Crises: You Are
Not Alone,” you saw that and it had four young people
speaking honestly and candidly about their struggles with
mental health and the challenges that they’ve had
and even thoughts of
suicide. You saw that documentary, they
really came forward. What saw- What did you see in that
documentary and what struck you and how did it inform the
work that you’ve been doing on the task force? – What we did with
the documentary actually doing a screening at
one of our public hearings, the one that we held in Ripon
College, to focus on youth both K12 and higher edu- post-secondary higher education
and we had a screening of the documentary. The thing that, that these young people have
put together in trying to show their resiliency
and the things that the PBS documentary has
helped us do is, in a very concise way gone
through their struggles, how that started, how they
are continuing to address those situations and how
they’ve really become advocates when it comes to
suicide awareness, especially for youth. What they’ve been doing
in their own schools promoting peer to peer
organizations and actual resiliency training also. They are just a delight
to work with and I think we’re very appreciative that they’ve
been able to step forward and talk about this in
a way that will relate to young people. When it comes to legislatures, we do react to those stories
and those are very impactful. – You’ve invited our producers
who produced that documentary and the young people who were
featured in the documentary. You invited them to Madison. Why’d you do that? – Because I think that, the general population and
the rest of the legislature and staff in Madison should
have the same opportunity that our task force had
because I think, again, it is something that will
resonate with legislatures, which with legislators on the importance. How these are just not the
statistics, the numbers, the personalities of these
young people and how they’ve moved on and working on being
successful in their own way. And I think the other
thing that it really shows, when I was really impressed
is the support that they had and how that should also
resonate with young people that are struggling to see these
examples of young people that have been able to
survive and move on and find their next path in life. – Thank you very much State
Representative Joan Ballweg. – Well thank you very
much for having us and thank you to you and PBS
and Milwaukee Journal Sentinel for putting together such
a powerful documentary. (bright music)
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00:06:34,994 –>00:06:34,928
– Toughen up. Stop your crying. It’s a message boys often
hear when they open up about their feelings. Local author Ebony
Lewis’ new book, “Dear Black Boy,
It’s Okay to Cry,” focuses on some of the
cultural differences of mental within the black community
and breaks down the stigma inflicting African
American boys in Milwaukee. (baby crying) – As Ebony Lewis soothes
her two week old son, Daxon, she has a simple message. – Dear black boy,
its okay to cry. It’s okay to feel. It’s okay to hurt That’s how you
know you’re human. That’s how you know you’re real. It all right to let it out, to scream and shout, to talk about what’s
going on inside. – That’s the opening
to her new book, that she was inspired to
write after losing her cousin to suicide in 2016. She wonders if things
would be different had her family spoke freely
about their own mental health challenges. – I think the stigma’s in
black communities definitely is something that
exists very highly. I think naturally, we’ve
just been, you know, back to just kind of
history, and you know even in our households,
like we’ve just been taught to just be strong
and just exist. So it’s like you just
kinda get used to all these hurtful things and you
grow up thinking like that’s just normal. It’s normal to be
hurt by people. It’s normal to experience
these traumatic things and just keep moving. I would like for, “Dear
Black Boy, It’s Ok to Cry,” to help black boys
and their families and other families
across the nation, um, you know, in a way to where
they feel comfortable just being themselves. But, in our community,
it’s one of those things where it’s just like, you
don’t talk about that. Nothing is wrong with
you, just keep going. You know, keep being strong. Keep pushing. And ultimately, it’s hurting
us when we’re not getting that help that we need. – These are more than
characters in a book. These are the stories of
many African-American males growing up in Milwaukee,
like Daleshontai Jene Tate, who through his art, is
turning the tables on stigma. – It’s difficult for
anyone to be vulnerable and talk about, you know sensitive things or
personal things because, you don’t know what
anyone is gonna do with that information. I think young black
men are depicted as violent, aggressive, and maybe stressed out. I wouldn’t say that’s
in a negative lens. The way I always describe it would be a survivalist,
because all those things are products of, you know, what we had to go through
to get where we are today, and the biggest thing for
any of us is surviving. – When constantly surrounded
by painful images, Lewis says, “Holding in
emotions can become a defense mechanism for young black men.” – I think there’s tons of hurt when we look at our black
males in our community. I think naturally, you know, even just to live in a world
that teaches you naturally that you’re less than,
is really difficult. It’s like you turn on the TV
and whether it’s the different- the police brutality,
or, you know just different
headlines that come out. I had a boy once tell
me that he couldn’t love because it would make him weak, and he was nine, and I was just like, what happens to that little
boy when he becomes 20 with that mindset. So that moment,
amongst a few others, really inspired me to
start some kind of message. I didn’t know it would
spiral into a book, but just a message that really
taught our boys specifically like, its okay to do
all these things that, I think they naturally believe
will make them weak if they express how they
feel or if they love or if they’re vulnerable. I would like to
teach my sons that, it’s okay to- you know, its okay cry. It’s okay to, you know, express yourself in
whatever way you want to express yourself. It’s okay to talk to somebody. Making sure that those
things are received, and that those
stigmas are, you know, slowly broken down
through this book is what my hope would be for. Dear black boy, be brave, be bold, and confident in who you were designed to be. Joy is the sound
of your new song. – A form of muscular dystrophy known as FSH affects 870,000
individuals worldwide. That includes a youth
baseball coach from New Berlin you’re about to meet. His frame of mind for
himself and his young players is about playing fearless. – All right, watch your fingers. When I go and coach and
bring all the equipment, which, I love my gear,
so I bring all the gear. – Buckets, wanna get that one? That one’s heavier anyway. Haha! – It’s a big struggle. I have this dugout caddy
that’s awesome organizer for the kids. Puts all their helmets
and what not in there. But for it to work right, it has to be hung
on the fence line. So, if I have to take that, and hang it, anything above my eyebrow
line basically with the weight of that piece of
gear and hook it one hook at a time as I go. It’s very difficult. The reaching part of the disease
is really what affects me. You know, I don’t
want to ask for help. And I find myself doing
it as quickly as I can cause I don’t want
the kids to notice. I’m Tim Hollenback, and I
live with something called FSHD which is fascioscapulohumeral muscular dystrophy. It affects your face, your
scapula, your back area, and then your humeral
or they say trunk, you know it can
affect your legs. So for me, it affects mostly my shoulder blade area, and arms and basically it
is a muscle wasting disease that you’re born with. It’s not auto-immune, um, you had a DNA glitch. There is no cure and
there is no treatment. It wasn’t until I was 40 when
I was throwing a football in my yard with my kids, felt like my arm
disconnected with the ball and a shock of pain went
up my arm and I thought wow, what was that? Once I was diagnosed, and
then I had that hindsight and I could look
back and I was like wow, I couldn’t do a
push-up when I was like 10, or a pull-up even or anything. I couldn’t lift my own muscle
mass at that time, thinking I’m just a weak guy. You have to keep moving. Don’t have a lifestyle
where you’re sitting a lot. – All right you guys ready to play? – (yelling loudly) Yeah! – Really? – (yelling loudly) Yeah! – This whole disease
is about compensating. The whole thing. You just adapt. You don’t even realize
you’re adapting. – Play ball! – I just like baseball – Hey Justin, slide
out a little bit. Yeah, yeah, you
gotta play the space. You’re fast enough.
You can get to one. Hey, keep your head
in there, Mikey. Keep your head in there. (clapping) – Usually a third base
coach is relatively active. You know, you gotta
make sure you’re visual to the base runners. So you’re moving your body, trying to get in line so as
their rounding that second base they can see you immediately. So I’m trying to move
and do those things, but I’m not swift
in my movements. – C’mon, c’mon, c’mon, c’mon,
c’mon, c’mon, c’mon, c’mon. There’s two outs, you got
to be on your horse kid! Hold it, hold it, hold
it, hold it, hold it. Good, good, good, good, good. – I think I’m trying to hide it,
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00:14:21,993 –>00:14:21,928
the best I can. I don’t want the kids to see it. Oh, coach is kind of
sore, is he all right? I don’t want to have
to be a distraction. It’s not about me. It’s supposed to be about
the kids and playing ball. You can change lives. It’s not about the
wins, the losses. It’s about the impact, and I totally
believe that, 100%. – He never brings us down
and he doesn’t yell at us. He doesn’t get mad at us. – Way to go Logan! – Play a little
deep, there you go. Gloves out in front
boys, lets go! Remember offense, you guys average like
13 runs a game, right? Yeah, answer back. Ready? One, two, three- – (Everyone) Answer back! (crowd cheering) – He tells us all
to play fearless. – Playing fearless was
the theme this year. The kind of coach I am, I learned this from my
mentor coach and friend, was- find something, that
they can bite into. Sorry. I notice that, they
were a little scared. Scared in the box. Scared to hit. Scared to field. And I thought, “Where
does that fear come from?” It can’t just be from injury. It was also a fear of failure. Fear of letting someone down. Maybe even letting me down. So, I thought about it
through the whole off season, and I thought, “What
can I do to help them?” Not cure them, because
we all have fear, you can’t cure that. How do you face it, turn fear into courage. So, I made a sword out of wood and I painted it team colors, cut the end of
the bat off, turned it into a sword with a bad handle. And put all their numbers on it, and made it so it can
weather the season. And it got passed
from player to player that earned the fearless trophy. I have to be fearless in
fighting this the best way. It’s a huge positive boost. And all of a sudden, I’m
this coach Tim again. I’m not the guy with the FSH. – Let’s go. Thank you all for joining me. Thanks for being here today
on the FSH Society Radio Show. Hope I’m coming
in loud and clear. As you know, I’m a baseball
coach and during the season, we kind of pushed the
time back a little bit. – I host a podcast
for the FSH Society. So FSH Society, briefly,
is out of Massachusetts. They’re a grass roots
volunteer group that helps raise money and awareness
to fight this disease. And when I was on that
website for the FSH Society, one of the first things I was
looking for was a podcast, because that’s how I learn. I learn by listening. I didn’t see one. I thought well, “That’s a shame. There should be a
podcast for this for people that have this. So I emailed them and
said, “Love the site. You don’t have a podcast,
and maybe you should, and I’d love to host it.” – What we have in store today, is a great guest from NFL films. The show airs just once a month, and we thought, why
not Facebook live? We’re gonna take a quick
break, and we’ll be right back. You’re listening to
FSH Society radio show. I like the live
aspect of the podcast. Light goes on, the juice
starts to flow a little bit. I get a little excited, nervous at the same time. Hope the equipment
work, let’s go! Or just like coaching. We got the game, we
got the equipment up, all right let’s go. We just play now, and just kind of let it go. Just let it happen. Courage is, you
gotta face that fear, and go forward anyhow. Podcasting, it just taps
me into that community that knows exactly how I feel. For me, coaching is a personal,
selfish almost, distraction. It helps me get through. It helps me feel, lack
of a better word I guess, normal or full
bodied, full strength. – There you go. – Without those two things, I would not be a happy person. – Nice! – Whatever you do,
kinda play fearless. And that’s really, what we
all have to learn by it, is play fearless. Play fearless in your
life and in the actions and the things you do. – (children) One,
two, three, Crusaders! – Speaking of passion, pipe
major Brian Donaldson has it. Especially when it comes to
making and playing bagpipes. Our John McGivern has a
conversation with the man, who for several years, taught a popular class at St. John’s Northwestern
Military Academy. – Now, think what you’re doing. Think of the music. Let’s play the correct notes. Make sure our fingers
are on the correct notes. Here we go then. (singing) Quick, march (bagpipes playing) – You know, they’re thinking, he’s not from here. – No, that’s correct. – Where are you from? – I’m from Fife in Scotland. – Fife in Scotland? – Yes. Fife is an area
just north of Edinburgh. – And is that where you
became familiar with bagpipes? – I was born and
bred into it, yes. My father was a piper and
he taught me as wee boy, five years old. This is my bagpipes, with the
commanding officer’s banner. This is typical of the
Scots Guards uniform. The pipe major always
has the black cane. There are different types of
bagpipes all over the world, but I make the great
the highland bagpipe, as they’re called. I do it meticulously,
crafting by hand. – All of it? – All of it, yeah. – This is your wood store? – This is my wood store. This is the wood I use to make the bagpipes. We’ve got two different
types of wood here. We’ve got African black wood. And then we’ve got ebony. And as you can tell, if
you want to feel that. – Oh sure. It’s heavy as can be. – Very very heavy, yes. – Yeah. – But the tonal quality
that you get out of piece of African BlackWood is
really second to none. It’s just superb, you know? 14 pieces make up a set
of highland bagpipes. – 14 pieces? – Yeah. – And down to the smallest
piece, which is that. – And every piece is as
important as the next piece? – It really is, yeah. We take the piece of
wood, set up the length. – And you’re just
eyeing it, right? – Yeah, it’s all done by
eye, and slight of hand. – You happy with that? – Yeah. Now that will allow me
to put a (inaudible) I’ll show you how
I bore this okay? – Good. – So we start the
machine up her. A little bit of oil,
and then we’re in. In, out, in out, and you can hear it cutting. So that piece of wood here, becomes the finished
product here. That becomes that, you see? – What? That’s what that is? – That’s what that is. It’s a practice chanter, yes. – So we’re called the
beginners, which we don’t use pipes yet. We
use the chantlers. We’re learning on there first, and then once we start
learning pieces of music, we’ll go to the bagpipes. (bagpipes playing) – Most people do think the
breathing is the hardest part, and while it is a
pretty big factor, the finger technique
is the biggest, because we’re using fingers
and muscles in your fingers that you’ve never used before. In a strange way, nothing
like piano or trumpet or any other instrument. It’s unique. – Is there something that
makes a good bagpiper? Is there something you look for? – The fingers of digits. You know how today’s society, kids are great with
their fingers, you know with these Playstation machines and all these gaming things? Well, I get them to do
that on musical instrument, and that’s my job you know? – So they’ve been practicing
before they even show up with you. Yeah, that’s nice. – That’s right. Yeah, yeah – Yeah, so it makes it a wee
bit easier for me, you know? – Are there many schools
that have a piping program? – No, not in the states.
It’s quite unique actually. I would suggest that there’s
maybe three, perhaps four, if that at all so, we’re
pretty unique here and respect that we’ve got a pipes
and drums program. – Well this was my
first exposure actually. I started in ninth grade,
my first year here, and it’s a strange instrument. There’s nothing quite
like it and I think that’s what drew me to it. – (Girl) It’s different. I’ve never been to a
school that had bagpipes. – You know, I think it’s
actually pretty cool because not that many
students here get, like, the opportunity
to join this program. I think this program
is really special. – Are most of them, have never touched a
bagpipe before they- – That correct. It’s totally alien to them.
They take a liking to it. They take a shining to it. It
takes up to about six months to to pick up and learn how to play the bagpipes. – He actually makes us
practice everyday for at least 30 to 40 minutes. He’ll give what
you need to achieve that level of perfection, and all you need to do is work. – Let’s get rehearsing.
Striking our bagpipes on and cutting them off. Here we go then. Lets
do the full force Scotland the Brave
set, nice and steady. – He’s a really funny
teacher, but sometimes he can get mad and serious, but
overall, he’s just really caring. – You behave yourself. Here we go! – (Girl) I guess he’s
kind of like our mascot. In the class, he’s always there. – I got Hatchie two years
ago, when he was a small pup. I introduced him to the
bagpipes and the drums, and he likes it, you know? He has fun. – He’s energetic, a
little cairn terrier, and when you come you get to
pet him and he’ll sit on your lap sometimes. He’s
fun to have around. – There are a lot of talented
kids out there that just come and do it. And then there’s others that
are like a kid with a gun. It just looks very awkward. That’s the job. You’ve got to train each
and every one of them. Some of them take longer
than others, you know? – This is something I could
do for the rest of my life, and that has a lot
of value to it. – Does this feel
like Scotland to you? – With the pipes and
drums program, yes. – It does. (bagpipes playing) – St. John says it plans to
continue the pipe program even though Major Donaldson
has left the academy. Remember, you can always check
us out on Facebook and at Milwaukee PBS.org.
We’re back October 17th. It is fall, so we’ll leave
you with a view from above some corn mazes at Skelly’s
Farm in Janesville. See you next time. (upbeat music)

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