WEBVTT

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And the rock icons that are currently
on a North American tour for

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their most recent album The
new albums there fifth

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studio album right here it\'s
entitled together together together.

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Please welcome back to the
program the new pornography.

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I was a really special act a combination
of all these different people all in

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different bands that they put out
mass romantic and the New York Times.

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It was like the best record
you haven\'t heard yet

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escaping from how we kinda know
about these guys to selling out

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Irving cloud was joining me in studio

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to chat about their new album together are
two of the members that new choreographers.

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Japanese garden collection view.

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We know what\'s happening
6-7 months in advance.

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Just the way it works people need a
lot of times they getting organized.

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It\'s an experienced musician.

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Catherine Calder knows firsthand when
her mother was diagnosed with ALS.

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This victoria bass singer who was touring
with the new pornography suspended term

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to come. In the months

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when she was caring for her mother
Katherine wrote and recorded a solo album.

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So you were you were
actually creating this album

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in the house while you\'re looking
after your MOOC. Yeah yeah.

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Als Lou Gehrig\'s disease
and as a terminal illness.

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And so I knew it was coming.

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And there is no other way to make it.

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I didn\'t want to be in a studio.

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I want it to be at home while my mother was
still alive because I wanted her to hear it.

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My little guy

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This is my little nephew ran.

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And you want to come play the piano.

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Let\'s play.

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Nice work.

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Are you done

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my mom loves this house and my mom and
dad bought it and they were separated.

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He moved Shamil Bay and my
mom stayed down stairs.

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And because I was

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touring with immaculate machine or
training across the country so I just

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lived at home and my mom was always so
easy-going that it didn\'t matter than then.

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When she got diagnosed I
thought I think I want to

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move upstairs so that I
could still be close

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but BMA ONE space but I could still run
downstairs and be right there. If I need it

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This is the living room it looked a bit
different when we were making the record.

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This is the grand piano that there\'s my
granddad was My Grandma\'s piano that

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my dad played on and and then and
then I learned on it as well.

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So this piano is spent in
the family for a long time.

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The nose was kind of this is kinda
the room where it all happened.

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So July fourth

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I\'m putting on a concert
for Lou Gehrig\'s day.

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It\'s going to be a gala
at the rural BC Museum

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in the old town part of museum which
has made to look like old Victoria.

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Gathering Golder came into the studio to
talk about her mom ALS and her music.

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So you\'ve chosen to do fundraising
concert it\'s gonna be on July fourth

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and its luxurious appreciation
day because it is

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not the day he made his sort of farewell.

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Yeah I think it is June as ALS awareness
month or live by July fourth it just Siemens

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seem to fit perfectly.

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Especial concert is tomorrow
night at the Royal BC museum.

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Unfortunately it is sold out
are the best at the constant.

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While. How about this locale

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you\'re welcome to look look
Victoria we took a time machine.

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It\'s nice to see so many familiar faces.

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Thank you so much for coming.

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It\'s been really really
fun preparing for this.

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And there\'s going to be a lot of gas
musicians coming up but its actually

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Fitting that we\'re in Old Town Victoria

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because I feel like this is
a bit of a retrospective or

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something you know like all the
different incarnations and what

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I\'ve been doing my music career.

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So we are here to raise awareness for ALS.

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So I\'ll do my best to be good.

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Who\'s gone on.

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Well maybe she doesn\'t come to me.

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For is

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they look the same

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growing program where they
acquired born over America.

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I review today worth

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urea Marilyn every letter
how to Iraq very aware.

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You\'re aware aware wrong

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and Lou Gehrig is the greatest first baseman
the history of Major League Baseball.

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He played for the Yankees from the early
19 twenties until the late 19 thirties.

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And he\'s remembered today as
the iron horse of baseball.

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If his career hadn\'t been
cut short the statistics

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and it would have piled up
would be records even today.

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As soon as Gary was diagnosed the
press started referring to it as

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Lou Gehrig\'s disease was a lot
easier to remember than ALS.

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He didn\'t beat the disease.

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He wasn\'t superhuman.

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He went down pretty fast but he showed

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such courage I think that that
really inspires people even today.

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I think forgetting the choice was to

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celebrate the life that he had
the gifts that he\'d been given.

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And to make the most of
every everybody had left.

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This is where Collin was he
was right all along here with

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his gear all of his equipment
and whatnot we had headphones

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and we were constantly
running back and forth in

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between the living room which
is just right there and

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and hear what most

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of us there upstairs
there\'s nothing upstairs.

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Just everything about this house and you
have so many memories every part of it.

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And I\'ve lived here for so long

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I mean there\'s 30 years of history there.
Where should I start

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I practice downstairs in her
family living room and I loved.

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My mom was a teacher and she played piano.

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And so we would practice
together at Christmas.

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You know my dad was always
playing carols and my mom as

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well you know playing heard jazz things.

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And yeah it was very musical always
had these diaries and school

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I would talk about my day and I
had one where I was really mad

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at my mom because she told me to stop
practicing piano because it was too late.

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We must have still had a
few photos of us and I was

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really upset because it wasn\'t that she
told me to stop it was how she said it.

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I went to Buckeye which says
the block up the street and

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that\'s where I joined the army
band when I was in grade 11.

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And so I tried out for singing but
that\'s where I\'m at broke and Luke.

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And that\'s the BAM that I sang into
a microphone for the first time.

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And I was totally hooked

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So Luke was a drummer Brooks
was a guitar player and I was

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the keyboard player and so we
formed immaculate machines.

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I wasn\'t masterminding the next
part grew up or anything like that.

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Just for friends I school friends.

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On-time high school friends

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And I wish we had some
cooler way that we\'ve

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met you know broken I we\'re all your
neighbors basically he would live down

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the street from each other and then
running Catherine came along and does it

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just really kind of made our
sound by time we admit them.

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They were just on a four month tour
around America all on their own.

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There might be a lot of talking heads.

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We were just super impressed by their
musicality and they\'re they\'re they\'re drive.

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We were pretty excited at every level in
those early days because it was it was hard.

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We worked pretty hard for it.

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You know it\'s this this
solid friend group that

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it\'s just not that that\'s
not going to disappear

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So as an apple tree great
apples I used to look

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like when I would leave the house in the
morning on my way to school in September.

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I grab an apple because there were really
good and I could just it was breakfasts.

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Anyway this backyards and kinda redone.

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This was a project of my mom\'s.

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This is the garage

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To our grungy Dao Steve and smells great.

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Burke\'s parents Luke\'s
parents and my parents the

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three the three immaculate machine
families got together and

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they insulated it and welded
in put a ceiling in and turned

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it into a very soundproof practice space so
that we had somewhere we could we could play.

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That was my mum\'s idea.

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She hatched that plan.

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She so clever. Len was also like

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super supportive of our decision
to continue our teenagers

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humans this wanting to make
music and always this concern

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for her well-being which is just charming.

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My mother was adopted as a baby.

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She had grown up with the family and her
parents had both passed away at that point.

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And when she was about 40
they changed the way that

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the adoption registering works so
that she could put her name in

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Try and find her mother birth mother.

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And if her birth mother did

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the same thing then they would match
they would try and match them.

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I do remember one morning
her coming into my room

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in you know kind of waking reality being
like I have some really exciting news

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in artists like I just I
just found my birth mother

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the founder inch can you believe
it she lives in Vancouver you

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know who it was just him
both remain written both now

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on the west coast and it was
just one snowflake album.

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Now I\'m crying

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I remember thinking it was a
big deal but having no concept

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of what you know what what
kind of a deal that webpage.

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We communicated via letter first.

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Of course I can understand why
it was it was very emotional.

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Her mom Irene route or the
outside introducing herself.

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And then we went over to meet them.

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And the crazy thing that\'s crazy.
We sent it out.

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They they didn\'t know about my mother.

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Irene had told her husband but the
kids hadn\'t known m\'s quite amazing.

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Turned out that my mom had five siblings.

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Then all of a sudden it\'s like
here\'s the new part of your family.

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There\'s a new grandmother and
grandfather and you know like

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And you know it was like a complete package
family that came and cool I\'m cool Carl.

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And because he was a musician
and was one of them.

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My mom said Hey I wanted to
talk to you about something.

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And that\'s what she says distinct.

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She didn\'t wanna tell me on the phone.

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And I said is a bad news.

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It doesn\'t know and I thought
what was not bad news.

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You don\'t want to tell
somebody over the phone

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frequency parts just like that\'s

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her half sister and she looked way
more like my mom than any of us.

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And I just remember thinking
wow that\'s really cool.

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I am also adopted is the end.

00:18:03.740 --> 00:18:06.918
So I was very interested in their
story from a personal point of

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view and that they found each other
and that it was even possible.

00:18:11.615 --> 00:18:14.899
It\'s a really great rock and roll story.

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The Catherine and Carl saying as one
of those things when I heard it I was

00:18:18.859 --> 00:18:23.089
like this is like one of those
great moments in music journalism.

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You know she was startled
because like 18 to

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have playing music and I
thought well that\'s cool.

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He trying music. Now.

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It\'s kinda points to the amazing
nature of music to bring those voices

00:18:36.620 --> 00:18:41.404
together on top of anything else
which is this great family story.

00:18:41.405 --> 00:18:46.459
But the whole uncle niece thing it just
seemed like sort of funny to me initially

00:18:46.460 --> 00:18:49.923
like like just something
I would bring up to like

00:18:49.924 --> 00:18:54.540
just debugger occasionally go get
your Uncle Carl and drink with you.

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We played this gig at the lucky bar in Victoria
so local band was The American machines.

00:19:08.720 --> 00:19:11.538
There wasn\'t like a huge prac room or

00:19:11.539 --> 00:19:14.389
anything that\'s kind of a small
room just watching the band.

00:19:14.390 --> 00:19:16.998
They were actually really good
really kinda energetic very

00:19:16.999 --> 00:19:20.940
young theologian yogic tower play.

00:19:20.950 --> 00:19:26.538
As a kid she was singing like crazy and playing
all Khyber parts of the right-hand end

00:19:26.539 --> 00:19:27.648
up playing all the bass parts with

00:19:27.649 --> 00:19:30.348
a left-hand that she had two
amps and they were just kinda

00:19:30.349 --> 00:19:35.280
like like in your face good musicians.

00:19:44.290 --> 00:19:47.643
Our friend put on this evaporator showed

00:19:47.644 --> 00:19:50.254
and you go a little higher
than that kills machine play.

00:19:50.255 --> 00:19:54.559
And at some point you know
like I\'ve realized that

00:19:54.560 --> 00:20:00.799
John Collins of the new pornography was
then the evaporated and went backstage.

00:20:00.800 --> 00:20:03.709
And I found John I\'m somebody
who broke and pointed

00:20:03.710 --> 00:20:06.679
him out or some fit you know like
that\'s how unprepared I was.

00:20:06.680 --> 00:20:08.730
I didn\'t know what he looked like.

00:20:12.250 --> 00:20:16.668
She came in sat down inside me and
said are you John Collins and

00:20:16.669 --> 00:20:21.018
I\'m John Collins from the new pornography

00:20:21.019 --> 00:20:27.589
She\'s like yeah like do you know
Carl Neumann he\'s like Well yeah.

00:20:27.590 --> 00:20:30.034
And she said oh because he\'s my uncle.

00:20:30.035 --> 00:20:33.408
Jay like I\'ve heard I\'ve heard about you

00:20:33.409 --> 00:20:37.309
actually you know the younger
relative I always heard about now.

00:20:37.310 --> 00:20:40.188
She\'s in abandoned took me a
while to put it all together

00:20:40.189 --> 00:20:43.804
with one of those moments so
you\'re kicking yourself later.

00:20:43.805 --> 00:20:49.714
And I say you that came back to Vancouver
instead just say that\'s your nice.

00:20:49.715 --> 00:20:54.679
He saw her strangely enough before he even
knew anything about their family connection.

00:20:54.680 --> 00:20:58.458
I actually thought. I wish our band

00:20:58.459 --> 00:21:00.409
had somebody who could sing and play

00:21:00.410 --> 00:21:03.253
keyboards because I\'ve songs
all heavily tend guitar parts

00:21:03.254 --> 00:21:06.759
We\'re Park\'s John said DO Carl has this

00:21:06.760 --> 00:21:10.134
nice as long lost niece and
she placed music in that.

00:21:10.135 --> 00:21:13.059
I went to see the ban and
apparently than pretty good.

00:21:13.060 --> 00:21:15.474
And I thought wow that\'s really cute.

00:21:15.475 --> 00:21:17.649
And I think even Carl was skeptical.

00:21:17.650 --> 00:21:21.429
I don\'t know but I know I was
because she\'s 22 and we\'re all like

00:21:21.430 --> 00:21:26.679
35 or sort of kind of working on Carl saying
you know we need to change your knees.

00:21:26.680 --> 00:21:28.764
But she\'s my niece.

00:21:28.765 --> 00:21:32.229
I thought that\'s so weird worlds colliding.

00:21:32.230 --> 00:21:34.239
You kind of knew that Carl
wasn\'t gonna really have

00:21:34.240 --> 00:21:36.654
someone come in and who wasn\'t really good.

00:21:36.655 --> 00:21:38.468
And I mean I feel like I\'m
busted It\'s called her and

00:21:38.469 --> 00:21:40.674
said hey you want to come
see me and I record.

00:21:40.675 --> 00:21:45.764
Yes yeah. And I remember saying

00:21:45.765 --> 00:21:50.044
I\'m just a mind we\'re going
to borrow Catherine.

00:21:50.045 --> 00:21:55.864
And I saw like a kind of a flash
of fear and the PO2 Band-Aids.

00:21:55.865 --> 00:22:00.558
And it was just kinda like what\'s going
on where all of a sudden sort of

00:22:00.559 --> 00:22:04.848
tied into the music world
okay mom you\'re not going to

00:22:04.849 --> 00:22:08.478
believe this but I just got asked
to do some shows but that\'s

00:22:08.479 --> 00:22:12.469
the night John decided to
champion Catherine as a as

00:22:12.470 --> 00:22:15.979
a new Bernard refers to as

00:22:15.980 --> 00:22:22.650
great as it was weird for us though
because we\'d never known anyone Cool

00:22:27.370 --> 00:22:29.520
They

00:22:38.770 --> 00:22:40.923
must be very

00:22:40.924 --> 00:22:44.629
very difficult for Catherine to
stand on stage at first time.

00:22:44.630 --> 00:22:48.289
Everything was so crazy
that I just I just didn\'t

00:22:48.290 --> 00:22:55.579
it went out there

00:22:55.580 --> 00:22:57.319
saying did my thing I\'m sure I was a bit

00:22:57.320 --> 00:23:00.649
nervous but mostly I was just
having a really good time.

00:23:00.650 --> 00:23:04.818
And my mom was there she flew to New
York to come and watch because it was

00:23:04.819 --> 00:23:07.338
such a big deal you know and
shatter friends she and

00:23:07.339 --> 00:23:10.309
her friends with her from
Victoria may like it.

00:23:10.310 --> 00:23:12.949
That event was yeah.

00:23:12.950 --> 00:23:19.114
Anything it makes me feel happy to think about
that Prospect Park show to think of like

00:23:19.115 --> 00:23:22.908
learn being there and being proud to see

00:23:22.909 --> 00:23:27.330
her daughter\'s San Fenton like
10 thousand people in New York.

00:23:44.410 --> 00:23:48.453
September of 1938 movie Arizona

00:23:48.454 --> 00:23:53.868
93 the last time one of his career
before he was diagnosed with

00:23:53.869 --> 00:23:56.568
ALS obviously he would come
back the next season and

00:23:56.569 --> 00:24:00.360
play a few games but never
had another home run.

00:24:02.350 --> 00:24:06.664
When he showed up first sprint
training and get ready for the season.

00:24:06.665 --> 00:24:10.830
He started complaining that he was
getting blisters on his hands.

00:24:11.320 --> 00:24:17.029
All through his career every year he had
used the same exact back same length.

00:24:17.030 --> 00:24:19.350
Same with same weight.

00:24:20.110 --> 00:24:25.218
Squeezing harder than usual
because he was not able to

00:24:25.219 --> 00:24:30.318
get the same good grip on the bad so you
actually started taping phone to his bat

00:24:30.319 --> 00:24:32.404
It wouldn\'t be so sore.

00:24:32.405 --> 00:24:36.079
And as a result he feels
like he needs a lighter bad.

00:24:36.080 --> 00:24:37.609
He\'s not getting the same control with

00:24:37.610 --> 00:24:40.564
a bath that you\'ve used throughout
the rest of his career.

00:24:40.565 --> 00:24:44.059
He can see how the home
run start to fall off.

00:24:44.060 --> 00:24:46.158
You can see how the settling
for singles instead of

00:24:46.159 --> 00:24:49.894
doubles he\'s just losing a little bit of
his speed a little bit of his agility.

00:24:49.895 --> 00:24:51.499
Not knowing that he\'s sick.

00:24:51.500 --> 00:24:54.510
He can feel some change in his body.

00:25:03.670 --> 00:25:10.144
My mother she would be walking than
Jimmy Carter\'s trip for no reason.

00:25:10.145 --> 00:25:13.204
And her foot wasn\'t lifting

00:25:13.205 --> 00:25:15.630
the ground far enough.

00:25:15.640 --> 00:25:20.839
You know her muscles were not
working but she didn\'t realize it.

00:25:20.840 --> 00:25:25.140
And then it kinda started getting murse.

00:25:31.840 --> 00:25:34.834
You trip on the golf course.

00:25:34.835 --> 00:25:40.458
You go to your GPS and you know I
felt the other day and I knee hurts

00:25:40.459 --> 00:25:43.488
but I\'m limping a little bit
doesn\'t really hurt but I\'m

00:25:43.489 --> 00:25:46.654
limping and nothing else is wrong
and they have another complaints.

00:25:46.655 --> 00:25:48.468
I couldn\'t make a diagnosis
when the disease to

00:25:48.469 --> 00:25:50.898
that early Christians
very early on affecting

00:25:50.899 --> 00:25:55.654
only one limb. It doesn\'t show up on.

00:25:55.655 --> 00:25:57.514
And it doesn\'t show up.

00:25:57.515 --> 00:26:02.734
It doesn\'t show up as a thing on
any of these tests that they do.

00:26:02.735 --> 00:26:06.600
So they do it by elimination
of other things.

00:26:07.780 --> 00:26:13.369
And the problem was in the fall it was the
earliest changes occurred the body with ALS.

00:26:13.370 --> 00:26:16.338
And then slowly over the
ensuing months that ankle

00:26:16.339 --> 00:26:20.119
gets week delay gets weak that
spreads to the other leg.

00:26:20.120 --> 00:26:21.979
That was how it happened.

00:26:21.980 --> 00:26:27.150
It was like well we don\'t know but
you have to kinda just wait and see.

00:26:42.730 --> 00:26:45.214
They couldn\'t figure out what it was.

00:26:45.215 --> 00:26:50.070
And so the doctor asked her to go
to the ALS clinic and Vancouver.

00:26:51.970 --> 00:26:55.069
We had to stay overnight
and she didn\'t sleep.

00:26:55.070 --> 00:26:57.529
And I knew she was really
stressed about this test.

00:26:57.530 --> 00:27:00.978
And of course I was too
although I was able to

00:27:00.979 --> 00:27:07.249
sleep and woke up

00:27:07.250 --> 00:27:14.029
that morning and we went to the GF strong ALS
clinic MD she did a bunch of these tests.

00:27:14.030 --> 00:27:17.149
Shadow these electrodes on her and

00:27:17.150 --> 00:27:19.834
asked her to do these sort of
simple things like can you

00:27:19.835 --> 00:27:23.179
Can you kneel down and then stand
up again or can you hop from

00:27:23.180 --> 00:27:25.038
one foot to the other and she couldn\'t you

00:27:25.039 --> 00:27:27.964
know there are lots of
things that she could do.

00:27:27.965 --> 00:27:33.979
At the end of it the the
the neurologists study.

00:27:33.980 --> 00:27:37.069
Ikea we think you have ALS.

00:27:37.070 --> 00:27:39.288
And again we think we think you have

00:27:39.289 --> 00:27:44.730
ALS because it\'s not really
definitive until it progresses.

00:28:10.390 --> 00:28:13.849
When I finally was certainly the disease.

00:28:13.850 --> 00:28:17.598
I would explain to you what\'s
happening how cells in

00:28:17.599 --> 00:28:21.019
the brain for we certainly
get clear are slowly dying.

00:28:21.020 --> 00:28:23.569
And these very simple
starts on there that bead.

00:28:23.570 --> 00:28:27.168
Some people starts in their hands and people
that starts in their throat they don\'t know

00:28:27.169 --> 00:28:32.164
why they don\'t know how the disease
will slowly rob you of your strength.

00:28:32.165 --> 00:28:40.165
Due from arm to arm to Lake timelines
uncertain and eventually will affect you

00:28:41.749 --> 00:28:45.724
chewing swallowing embryo.

00:28:45.725 --> 00:28:47.824
There\'s no cure.

00:28:47.825 --> 00:28:49.534
We don\'t know what causes it.

00:28:49.535 --> 00:28:54.870
There\'s it\'s just it was just
a whole bunch of nothing.

00:28:59.020 --> 00:29:02.790
And in all cases ALS is fatal.

00:29:25.330 --> 00:29:30.889
You know what a day it woke
up that morning and then went

00:29:30.890 --> 00:29:36.064
through the diagnosis which is not good.

00:29:36.065 --> 00:29:38.599
It was not a good prognosis.

00:29:38.600 --> 00:29:41.809
Those like Is this disease.

00:29:41.810 --> 00:29:44.550
We haven\'t even heard of it before.

00:29:45.220 --> 00:29:49.110
We took the ferry home.

00:29:49.570 --> 00:29:53.044
Versus crying I just cried the entire.

00:29:53.045 --> 00:29:54.499
I\'ve said tear Street.

00:29:54.500 --> 00:29:57.378
I was driving our little
car and I just said tear

00:29:57.379 --> 00:30:01.950
story down my face just
like the whole five hours.

00:30:06.400 --> 00:30:11.010
Yeah we\'d drove home.

00:30:12.580 --> 00:30:19.649
And like what do we do now what
do we do next to continue on

00:30:46.420 --> 00:30:50.779
I may call an immaculate
machine is recording.

00:30:50.780 --> 00:30:54.364
What would be our last record
really together as the three of us.

00:30:54.365 --> 00:31:02.365
We got him over to do some work for the
band and I was like oh hello young man.

00:31:03.370 --> 00:31:07.534
I was really taken by her very quickly.

00:31:07.535 --> 00:31:11.254
She was crazy talented.

00:31:11.255 --> 00:31:14.689
She\'s just a really quick learner
and she\'s good at coming up

00:31:14.690 --> 00:31:18.034
with beats and she doesn\'t even
aware that she can do that.

00:31:18.035 --> 00:31:23.479
And she\'s really good at writing baselines
and she doesn\'t she doesn\'t think about it.

00:31:23.480 --> 00:31:29.074
She just does it you know and and
of course she has a great voice.

00:31:29.075 --> 00:31:33.120
Yeah ready I\'m ready.

00:32:16.270 --> 00:32:20.434
Because I\'m so emotionally invested in her.

00:32:20.435 --> 00:32:25.399
If she does some things that I
don\'t like inside I just rage.

00:32:25.400 --> 00:32:28.909
I seize with rage because
undecided partner you\'re doing.

00:32:28.910 --> 00:32:31.339
I don\'t like this eighth this.

00:32:31.340 --> 00:32:36.919
But but if she does something that I
love I\'m old I\'m almost in tears.

00:32:36.920 --> 00:32:39.780
So it balances. It goes both ways.

00:32:47.650 --> 00:32:52.578
He\'s such a again another
solid and other solid guy in

00:32:52.579 --> 00:32:56.748
my life you know who is just
always there when you you

00:32:56.749 --> 00:33:03.198
know I remember like for the first
question I asked her just like what\'s it

00:33:03.199 --> 00:33:06.348
like big unless like big indie
rock bands like how does that

00:33:06.349 --> 00:33:10.084
how does that feel but she\'s
she\'s fairly modest course.

00:33:10.085 --> 00:33:15.004
And at the time new product versus touring
a lot and I hope tour as much now.

00:33:15.005 --> 00:33:18.409
But she\'ll be gone for about half the year.

00:33:18.410 --> 00:33:22.894
And at the same time she
was dealing with her mom.

00:33:22.895 --> 00:33:30.749
And so there was a was like
it was a tough time for her

00:34:04.630 --> 00:34:10.189
Those Catherine\'s mom so even though
she was Carl\'s sister she was

00:34:10.190 --> 00:34:16.470
also one of our moms at the same time
as being corals long lost sister.

00:34:17.920 --> 00:34:24.244
The Medco machine was recording it
my studio and Kathmandu a mover car.

00:34:24.245 --> 00:34:31.594
And I went with her and she just said you
know my mom hasn\'t been feeling well.

00:34:31.595 --> 00:34:36.079
I remember we were at a meeting in a
restaurant and our managers sort of asked

00:34:36.080 --> 00:34:39.039
I was doing and she couldn\'t
she couldn\'t speak.

00:34:39.040 --> 00:34:42.019
I think everybody got a little
bit choked up about that.

00:34:42.020 --> 00:34:46.729
She deals with things on her own little
bit r with their closest friends.

00:34:46.730 --> 00:34:49.699
So yeah I didn\'t I didn\'t know.

00:34:49.700 --> 00:34:51.859
I had to ask somebody later.

00:34:51.860 --> 00:34:56.209
And it was a girl.

00:34:56.210 --> 00:34:59.569
I were sharing a room in Melbourne.

00:34:59.570 --> 00:35:05.359
And I just said you know counseling
told me about a Pokemon.

00:35:05.360 --> 00:35:11.340
And then he said she\'s got
Lou Gehrig\'s disease.

00:35:11.800 --> 00:35:18.454
There\'s no way to really react
to someone close to getting it

00:35:18.455 --> 00:35:23.479
And terminal disease but I think
everyone was pretty hopeful.

00:35:23.480 --> 00:35:30.090
Well sure medicine hasn\'t cured it yet but
they\'re millenia at that kind of thing.

00:35:32.020 --> 00:35:36.199
You all kinda think like when somebody
gets diagnosed with something like that

00:35:36.200 --> 00:35:40.519
that was not going to get bad for them.
But then it did.

00:35:40.520 --> 00:35:43.170
And it happened really quickly.

00:35:47.020 --> 00:35:52.789
And I knew that my mom was gonna
start needing more of my time.

00:35:52.790 --> 00:35:56.224
And and so I just you
know OK I can\'t do it.

00:35:56.225 --> 00:35:59.099
Something has something has to give

00:36:01.870 --> 00:36:05.718
Katherine couldn\'t handle the pressure of

00:36:05.719 --> 00:36:09.169
being a machine with a per
our first at the same time.

00:36:09.170 --> 00:36:16.669
So she quit macula machine which
was a bit of a rough patch.

00:36:16.670 --> 00:36:21.304
She called me up and said I would
come over and we\'ll go for a walk.

00:36:21.305 --> 00:36:24.004
Because suspect right away.

00:36:24.005 --> 00:36:28.759
Some things out from the
tragedy of it you know

00:36:28.760 --> 00:36:33.379
Catherine was sort of lucky enough
that there was money coming in.

00:36:33.380 --> 00:36:35.989
So she could devote all
her time to dealing with.

00:36:35.990 --> 00:36:38.688
I was able to not work but still have

00:36:38.689 --> 00:36:42.933
a salary and look after my mom which
seems like an incredible gift

00:36:42.934 --> 00:36:46.308
you know because most people
the financial burden is

00:36:46.309 --> 00:36:50.914
really becomes a really big problem when
you\'re when people get really sick.

00:36:50.915 --> 00:36:54.708
And those probably like the most
open conversation I\'d had with

00:36:54.709 --> 00:36:59.209
Katherine and her mother\'s situation.
It\'s hard.

00:36:59.210 --> 00:37:02.089
Not to simplifies us.

00:37:02.090 --> 00:37:06.769
It makes total sense why she had to do it.

00:37:06.770 --> 00:37:11.659
That tends to be sort of like a
traumatizing thing for a young musician.

00:37:11.660 --> 00:37:14.689
You know it\'s like oh what
the death of my first band.

00:37:14.690 --> 00:37:20.029
But all three of us had
everything in this band.

00:37:20.030 --> 00:37:25.128
And so it was disappointing to hey Catherine
was clearing. And especially because she

00:37:25.129 --> 00:37:29.749
She wasn\'t quitting the new pornography
and they\'re perfectly good reasons why.

00:37:29.750 --> 00:37:33.078
But still I felt it as a
bit of a slight Which

00:37:33.079 --> 00:37:38.010
is which is really petty considering
what she\'s going through.

00:37:41.830 --> 00:37:49.830
Change. You want to Chinese medicine guy.

00:37:50.465 --> 00:37:53.088
And he was like oh well
you know I I can cure

00:37:53.089 --> 00:37:56.314
this and we were like
really you can cure this.

00:37:56.315 --> 00:37:59.178
She was committed because when

00:37:59.179 --> 00:38:02.659
somebody says they can share
something that you want to believe.

00:38:02.660 --> 00:38:06.769
She was drinking this god awful Tea

00:38:06.770 --> 00:38:10.953
Tastes that are just tasted like vomit

00:38:10.954 --> 00:38:15.003
basically couldn\'t pre-made
kit and then have bunch

00:38:15.004 --> 00:38:18.648
in the fringy had to kinda do it every
day and you had to brew it and it has a

00:38:18.649 --> 00:38:23.460
steep it for four hours and
then drink a wealth was warm.

00:38:24.010 --> 00:38:30.769
I think she was using a walker adopt over
everything to everything took so much energy.

00:38:30.770 --> 00:38:34.080
And at 1.

00:38:34.690 --> 00:38:40.039
The thing that she was making and shattered
and there is just t all over the kitchen.

00:38:40.040 --> 00:38:43.788
She didn\'t have the energy to be
making this tea every day and then to

00:38:43.789 --> 00:38:48.889
have it explode all over the kitchen

00:38:48.890 --> 00:38:56.890
It was kind of at a t Sega
bee venom snake venom

00:38:57.800 --> 00:39:03.769
various herb supplements mercury in your
fillings associated with cause ALS.

00:39:03.770 --> 00:39:05.929
He removed them. It would
make a difference.

00:39:05.930 --> 00:39:08.329
I assure you if there was
real efficacy was validated.

00:39:08.330 --> 00:39:14.010
Why would we use that my god of course you
want to change the course of the disease.

00:39:17.950 --> 00:39:25.950
Like Minecraft

00:39:31.150 --> 00:39:36.979
And this is the first time the three
of us have fled together in 4.5 years

00:39:36.980 --> 00:39:42.769
or similar yeah it\'s it\'s a really
fantastic opportunity is pretty cool.

00:39:42.770 --> 00:39:45.303
We played together for

00:39:45.304 --> 00:39:47.749
probably ten years when we

00:39:47.750 --> 00:39:51.259
practice and when we first started
we were playing six nights a week.

00:39:51.260 --> 00:39:52.699
There\'s an enormous part of our lives.

00:39:52.700 --> 00:39:54.634
There was all of our lives for a long time.

00:39:54.635 --> 00:39:57.169
And it\'s awesome to have him back.

00:39:57.170 --> 00:40:02.898
Anyway it\'s been very gratifying in a kind
of a strange way like getting kind of

00:40:02.899 --> 00:40:08.554
relive those sad moments and
the happy memories of land.

00:40:08.555 --> 00:40:10.878
Catherine\'s Mom something

00:40:10.879 --> 00:40:15.439
Sort of profoundly human maybe
or something like that.

00:40:15.440 --> 00:40:21.679
If you make me cry I\'m better kill you know

00:40:21.680 --> 00:40:24.949
said yeah we may not be ban

00:40:24.950 --> 00:40:28.309
lethal restart policy of man\'s not
that\'s even better revenue yet.

00:40:28.310 --> 00:40:32.749
Now. I did get a couple of
routes at home-based though I.

00:40:32.750 --> 00:40:39.300
Star catcher and other agents

00:40:45.550 --> 00:40:50.849
will scan some

00:40:53.290 --> 00:41:01.290
There\'s too many cooks in the kitchen
and you can see the throttle how

00:41:04.399 --> 00:41:10.129
making clear came

00:41:10.130 --> 00:41:17.250
by you

00:41:34.150 --> 00:41:36.450
and

00:41:54.130 --> 00:41:56.640
so

00:41:58.330 --> 00:42:06.330
As the mass center.

00:42:30.430 --> 00:42:35.100
So each

00:42:49.720 --> 00:42:51.439
Thank you.

00:42:51.440 --> 00:42:54.630
Thank you I love you.

00:43:15.490 --> 00:43:19.218
I feel you can appreciate
how I despise the dark

00:43:19.219 --> 00:43:23.400
but also despise equally
as much false illusions.

00:43:27.490 --> 00:43:31.849
When Gary was dying there last year
he was writing these letters to

00:43:31.850 --> 00:43:35.749
his doctor that he had no reasonably
if anyone would ever see.

00:43:35.750 --> 00:43:41.689
And I found them. And I see how he really
dealt with the disease when what he knew

00:43:41.690 --> 00:43:49.080
Hadn\'t been there\'s about 200
pages of letters altogether.

00:43:51.250 --> 00:43:54.349
Handwritten ones. You can see our

00:43:54.350 --> 00:43:57.259
early on because he could still write
this handwriting is quite good.

00:43:57.260 --> 00:44:01.819
And then as the disease
progresses begins to type and

00:44:01.820 --> 00:44:07.384
after a while he can no longer even signed
his name and he begins using a stamp.

00:44:07.385 --> 00:44:10.354
Instead this is one of the stamp letters.

00:44:10.355 --> 00:44:12.648
So you can really chart the progression of

00:44:12.649 --> 00:44:15.799
his illness even just threw
his handwriting and through

00:44:15.800 --> 00:44:17.959
the ability to sign a letters
but he also describes in

00:44:17.960 --> 00:44:22.469
detail what he\'s going through
as the diseases is weakening

00:44:28.840 --> 00:44:34.279
I was still await and I was touring.

00:44:34.280 --> 00:44:37.099
She had a brace on her leg.

00:44:37.100 --> 00:44:39.829
And it\'s still at a time where she was able

00:44:39.830 --> 00:44:43.849
to at least move around
the house a little bit.

00:44:43.850 --> 00:44:51.850
And then it was sort of 2007 maybe
2008 or things were not as good.

00:44:53.950 --> 00:44:59.430
A turning point was when it started
getting into our hands as well.

00:45:24.160 --> 00:45:28.954
Caring for a dying aerate
is hard very hard.

00:45:28.955 --> 00:45:30.919
It\'s an experienced musician.

00:45:30.920 --> 00:45:35.734
Catherine Calder knows firsthand when
her mother was diagnosed with ALS.

00:45:35.735 --> 00:45:38.868
This victoria bass singer
who was touring with

00:45:38.869 --> 00:45:43.170
the new choreographers
suspended tyring to come home.

00:45:45.700 --> 00:45:48.154
She always tried to keep

00:45:48.155 --> 00:45:55.009
So protected you know that that I
think she was trying to deal with

00:45:55.010 --> 00:45:58.009
a lot of men on her own
ice would say end of

00:45:58.010 --> 00:46:01.944
2008 was one I felt like no when
I came back it was too long

00:46:01.945 --> 00:46:04.828
And she really needed

00:46:04.829 --> 00:46:11.819
me much it\'s just

00:46:11.820 --> 00:46:15.179
coming to terms with everything
and living was that there was

00:46:15.180 --> 00:46:19.289
a lot of my mom will never
see me get married my mom.

00:46:19.290 --> 00:46:21.464
I\'ll never see my brother\'s child.

00:46:21.465 --> 00:46:23.489
My mom will never get to see.

00:46:23.490 --> 00:46:27.148
Me sing solo standing in the
spotlight like she always wanted

00:46:27.149 --> 00:46:30.764
to sort of as a gift to her mother.

00:46:30.765 --> 00:46:36.970
Katherine set her mind tend to making a
solo album that would be Catherine\'s album.

00:46:44.020 --> 00:46:49.308
It was such a great way for Lynn to
witness like this the process of

00:46:49.309 --> 00:46:55.110
making an album in her
last year of her life.

00:46:59.890 --> 00:47:02.524
This idea came out.

00:47:02.525 --> 00:47:07.639
We were going to make a
record at her house.

00:47:07.640 --> 00:47:11.299
It just made sense like there\'s
nobody you can be in Vancouver

00:47:11.300 --> 00:47:15.599
because he can\'t be away from your mother.
Let\'s do it at home

00:47:46.210 --> 00:47:51.228
I think when you listen to that record you
can tell that it\'s quite diverse because

00:47:51.229 --> 00:47:56.400
we\'re actually trying to
figure out what is her sound.

00:47:58.210 --> 00:48:01.549
Musical pupil appreciate
musical people to most.

00:48:01.550 --> 00:48:07.223
And our model is really proud of her and
doing it in the house would have just been

00:48:07.224 --> 00:48:09.289
the great thing that was going on.

00:48:09.290 --> 00:48:12.679
They can host lively and a
nice diversion for Catherine.

00:48:12.680 --> 00:48:16.710
Meno\'s sort of somebody who
was sort of her thoughts.

00:48:26.710 --> 00:48:34.710
This next song is off my first album and I
recorded it all I was looking after my mom.

00:48:36.455 --> 00:48:42.558
And I would record the
songs and then take them

00:48:42.559 --> 00:48:45.169
in for her to listen to and she would

00:48:45.170 --> 00:48:49.799
inevitably every time tell me
that the vocals particularly

00:48:51.000 --> 00:48:57.230
like a Mth 3q three cool.

00:49:05.670 --> 00:49:10.520
Read assuming first full-time.

00:49:15.180 --> 00:49:18.699
Stratum two averse symbols.

00:49:18.700 --> 00:49:20.930
The Fontan.

00:49:24.450 --> 00:49:28.670
Saddam comes the days are getting.

00:49:34.360 --> 00:49:37.440
Spin on.

00:49:38.170 --> 00:49:46.170
Yours. So was her first solo record.

00:49:47.060 --> 00:49:50.119
A lot of people wanted to be involved.

00:49:50.120 --> 00:49:54.334
She has sent an email to a few of us
if we want to be involved and gets OK.

00:49:54.335 --> 00:49:57.754
So that was called at that time I
lived on a farm in Saskatchewan.

00:49:57.755 --> 00:50:00.469
She said me maybe two or three psalms.

00:50:00.470 --> 00:50:03.019
So I\'d press record and run up

00:50:03.020 --> 00:50:08.074
the stairs and do a take and then run
back down stairs and listen to it.

00:50:08.075 --> 00:50:14.929
I wanted them to have fun and to come in and
helping out and we can record on my album.

00:50:14.930 --> 00:50:21.150
But she had dozens of musicians go in
there and claim something on every song.

00:50:21.670 --> 00:50:23.944
They had the living room.

00:50:23.945 --> 00:50:31.945
I\'ll make it up. Just microphones stands
everywhere and a drum kit right in the middle.

00:50:32.900 --> 00:50:35.224
I didn\'t know how long
it was going to take.

00:50:35.225 --> 00:50:38.250
I just knew that needed to be done.

00:50:49.090 --> 00:50:54.034
She didn\'t use the recording as
an escape from what was going on.

00:50:54.035 --> 00:50:56.913
She used at TOEIC fund yourself

00:50:56.914 --> 00:51:00.420
Into its increase in pain.

00:51:05.650 --> 00:51:12.754
You know the thing is is that
Catherine hasn\'t gone through shit.

00:51:12.755 --> 00:51:17.130
Then I might ever go from.

00:51:20.920 --> 00:51:25.774
I can\'t imagine what it would be like
to be you know carrying for a parent

00:51:25.775 --> 00:51:31.324
because there\'s no reward really because
you\'re not going to make the person better.

00:51:31.325 --> 00:51:33.124
You can make them a little happier.

00:51:33.125 --> 00:51:37.859
But in the end the disease
is gonna do it. Its damage

00:51:39.310 --> 00:51:45.588
She can\'t walk she can\'t use her hands
and she is now starting to like slur

00:51:45.589 --> 00:51:53.589
her speech therapy meals and
feed her her su per her food.

00:51:55.235 --> 00:52:01.530
And I\'m kinda watching everything
disco downhill from there.

00:52:17.800 --> 00:52:22.200
It was so hard on Catherine that.

00:52:24.220 --> 00:52:29.610
Well she she became a full-time caregiver.

00:52:30.520 --> 00:52:34.549
Since Lin was just down the hall.

00:52:34.550 --> 00:52:39.120
Lynn can just call for Catherine
University needed something being done.

00:52:40.300 --> 00:52:45.709
So Catherine would sing a
take comments a great.

00:52:45.710 --> 00:52:49.009
Shall we wrap that you should be like No I
wanna do another one but at first I\'ve gotta

00:52:49.010 --> 00:52:54.540
go for 15 minutes or half an hour
tend to employment and extra.

00:52:56.560 --> 00:53:03.393
So Catherine would would be in hormones
room helping I was kinda little

00:53:03.394 --> 00:53:07.969
things that you need to do and you can\'t
do and care muscles don\'t work that way.

00:53:07.970 --> 00:53:10.279
And then she\'d GB right back out.

00:53:10.280 --> 00:53:12.108
And like okay next

00:53:12.109 --> 00:53:13.410
take

00:53:40.990 --> 00:53:43.319
off

00:53:46.690 --> 00:53:50.344
having supernova you\'re already
I can bring my electric.

00:53:50.345 --> 00:53:52.294
Should I still bring Oh crap.

00:53:52.295 --> 00:53:55.849
Yes Sid I still bring my what if went

00:53:55.850 --> 00:54:03.850
out you\'re gonna get an iPhone.

00:54:04.310 --> 00:54:06.919
I can bring my lecture and
I still bring acoustic.

00:54:06.920 --> 00:54:14.920
I have no pedals I just realized
breaking electric and acoustic

00:54:33.450 --> 00:54:41.450
This c time to nature is so
feared itself to save anywhere.

00:54:41.740 --> 00:54:49.740
And so sketch is a mistake on nature.

00:54:51.865 --> 00:54:59.409
Lower limb drove both
Walesa column of where

00:54:59.410 --> 00:55:05.828
things were kind of

00:55:05.829 --> 00:55:11.480
out under 24 hours before a shout.

00:55:15.370 --> 00:55:18.510
I don\'t know what I\'m wearing.

00:55:21.610 --> 00:55:24.319
Tonight it was interesting.

00:55:24.320 --> 00:55:26.359
Just singing them on my own.

00:55:26.360 --> 00:55:34.360
Guy is Carl per se.

00:55:35.440 --> 00:55:37.774
But it\'ll be no problem.

00:55:37.775 --> 00:55:39.994
It\'ll be it\'ll just must have be fun

00:55:39.995 --> 00:55:45.240
and lots of very supportive
people are going to be there.

00:55:55.480 --> 00:56:03.079
What if it hits the law doesn\'t fall
down Botswana plastic sheet audit.

00:56:03.080 --> 00:56:08.328
But can I just leave it on

00:56:08.329 --> 00:56:16.110
no wiser plastic sheet on it
because we just bought it. Cool

00:56:34.450 --> 00:56:38.838
There was a lot of confusion people
assumed that it was some form of

00:56:38.839 --> 00:56:43.669
polio that this was something that he would
be crippled by but that he might survive.

00:56:43.670 --> 00:56:46.264
There was even concerned
that he might be contagious.

00:56:46.265 --> 00:56:48.499
So there was a lot of
misinformation in the press and

00:56:48.500 --> 00:56:50.778
Gehrig tried to correct it tried
to make people understand

00:56:50.779 --> 00:56:57.109
and he clearly knew that he was dying but I
think a lot of the fans were not so sure.

00:56:57.110 --> 00:56:58.639
So he went back to New York.

00:56:58.640 --> 00:57:02.269
After announcing this in the press the
Yankees decided they wanted to honor him.

00:57:02.270 --> 00:57:05.344
That was on the Fourth of July in 1839.

00:57:05.345 --> 00:57:08.430
And that\'s when Gary
made his famous speech.

00:57:10.810 --> 00:57:15.844
There were 60 thousand fans packed inside
Yankee Stadium for a double header.

00:57:15.845 --> 00:57:19.654
It\'s from the 1927 Yankees including Babe.
Ruth were there.

00:57:19.655 --> 00:57:24.589
Marching band are the players and the Yankees
and the senators lined up on the field.

00:57:24.590 --> 00:57:31.650
The mayor of New York made a presentation
gifts were given trophies silver platters.

00:57:33.400 --> 00:57:39.630
And Gary being the shy man
that he was denialists B.

00:57:40.480 --> 00:57:44.389
And finally his manager John
McCarthy shoved him in the back and

00:57:44.390 --> 00:57:49.410
said you have to the
crowds calling for you.

00:57:51.370 --> 00:57:55.099
Is diminished man you can
see his shoulders and

00:57:55.100 --> 00:57:58.699
his thighs and his calves
have really shrunken

00:57:58.700 --> 00:58:03.559
This is Amanda would never really
revealed himself to the fans in New York.

00:58:03.560 --> 00:58:08.269
And now for the first time this guy who\'d
always seemed a little stiff takes off

00:58:08.270 --> 00:58:14.190
his head twists it in his hands
steps to the microphone.

00:58:14.470 --> 00:58:20.070
And makes this speech that
just left people in tiers.

00:58:24.160 --> 00:58:28.140
Group and rewriting your work read.

00:58:30.670 --> 00:58:35.059
Today. I consider myself.

00:58:35.060 --> 00:58:39.540
Lucky man occupationally are adhered.

00:58:39.790 --> 00:58:47.790
Now. Today I consider

00:58:49.039 --> 00:58:51.169
myself the luckiest man
on the face of the earth.

00:58:51.170 --> 00:58:53.209
And then he goes on to
explain why he\'s lucky.

00:58:53.210 --> 00:58:55.323
He\'s not lucky because he\'s

00:58:55.324 --> 00:58:59.194
got this diagnosis would because he
thinks he can beat this disease.

00:58:59.195 --> 00:59:01.459
He\'s lucky because he\'s
had this amazing life or

00:59:01.460 --> 00:59:03.904
so many people have been so
good to him over the years.

00:59:03.905 --> 00:59:05.629
So he\'s choosing to embrace the life.

00:59:05.630 --> 00:59:09.259
He\'s led not the disease that\'s
going to end his life that I

00:59:09.260 --> 00:59:14.100
might have been given a bad break.

00:59:14.440 --> 00:59:18.330
But I\'ve got an awful lateral FR.

00:59:28.270 --> 00:59:31.609
The voice was the last to go.

00:59:31.610 --> 00:59:34.684
The arms and legs were the first.

00:59:34.685 --> 00:59:38.689
I think within a year he was
in a wheelchair and some

00:59:38.690 --> 00:59:42.604
of his teammates came to visit him when he
was embedded then no longer able to eat.

00:59:42.605 --> 00:59:45.229
So they were shocked by
you know he looked like

00:59:45.230 --> 00:59:49.800
a like a skeleton that was
something they never forgot

01:00:15.930 --> 01:00:20.270
Colon is more than a boyfriend at the time.

01:00:22.680 --> 01:00:24.864
We work well together.

01:00:24.865 --> 01:00:31.029
And so we have you know it\'s fun to work
together working on an album of some kind.

01:00:31.030 --> 01:00:37.010
But I didn\'t have to get married to
know that we were going to be together.

01:00:38.610 --> 01:00:42.849
There was a lot of late
nights you know like making

01:00:42.850 --> 01:00:46.179
this record and my mom was a
motivator and Collin was motivator.

01:00:46.180 --> 01:00:49.154
So to have them both
together in the same house

01:00:49.155 --> 01:00:51.480
Now if this kid

01:01:06.160 --> 01:01:12.559
I read a IB plunking out things and she
could hear me in the morning and you\'re

01:01:12.560 --> 01:01:18.829
practicing maybe doing
these parts and at the end

01:01:18.830 --> 01:01:22.278
of every week or so I\'d have these
little mixes and I\'d bring them

01:01:22.279 --> 01:01:25.879
into her how she was doing and she
asked how the recording was going.

01:01:25.880 --> 01:01:31.199
And we have this sort of you
know little interaction. Because

01:01:31.200 --> 01:01:37.500
And looking at for her I wanted
it to be more upbeat than sad.

01:01:41.140 --> 01:01:47.119
It might have been one of the most
emotionally difficult records.

01:01:47.120 --> 01:01:49.654
I\'ve ever been involved.

01:01:49.655 --> 01:01:53.370
If not the most difficult one.

01:01:54.940 --> 01:01:59.434
The actual act of creation as exhausting.

01:01:59.435 --> 01:02:07.435
And then you have the enormous weight of
a loved one suffering the whole time.

01:02:09.220 --> 01:02:13.609
Remember it was listening to the
whole thing but couldn\'t be there

01:02:13.610 --> 01:02:19.740
a punches. She was in a
hospital bed in her house.

01:02:24.070 --> 01:02:28.774
Catherine would be in her
mounts room should be gone.

01:02:28.775 --> 01:02:33.559
And we\'d be sitting there and
that was it was Heavy mist has

01:02:33.560 --> 01:02:40.054
just had her mom really needed her.

01:02:40.055 --> 01:02:45.214
I remember coming over to the house right
you know you\'re kind of catching up.

01:02:45.215 --> 01:02:47.928
I think I said Kate how\'s
your mom doing either I

01:02:47.929 --> 01:02:51.409
remember her like starting
to cry and terrible.

01:02:51.410 --> 01:02:56.869
And that\'s when I knew who Boy this
is seriously turn for the worst.

01:02:56.870 --> 01:03:00.589
But that\'s the only time I ever
saw are really like emotionally

01:03:00.590 --> 01:03:05.400
distraught about it you know and it
may be just hater right there like.

01:03:15.310 --> 01:03:18.529
This condition comes on so rapidly.

01:03:18.530 --> 01:03:21.828
So it\'s one thing when a condition
is so overwhelming and you\'d know

01:03:21.829 --> 01:03:25.114
that with time it will get better
and then things will be okay.

01:03:25.115 --> 01:03:27.453
But that\'s not the case with this disease

01:03:27.454 --> 01:03:32.929
Help the caretaker may be
doing absolutely everything.

01:03:32.930 --> 01:03:37.230
And of course that\'s a full time job.

01:03:38.500 --> 01:03:41.163
I learned all kinds of

01:03:41.164 --> 01:03:47.989
just crazy crazy stuff about taking
interests that you have to learn to do.

01:03:47.990 --> 01:03:51.709
Things that are like actually
kinda traumatic become

01:03:51.710 --> 01:03:55.219
like okay well you know no big deal.
They just

01:03:55.220 --> 01:03:57.559
That\'s fine we\'re just
continuing on with the day.

01:03:57.560 --> 01:04:00.319
Let\'s try No I\'m not going to
think about that too much longer.

01:04:00.320 --> 01:04:04.440
I\'m just going to continue on because
so much has constantly happening.

01:04:08.080 --> 01:04:15.649
It is just a terrible thing to lose your
strength and become dependent on others to do.

01:04:15.650 --> 01:04:23.650
Anything. Often the person is too
weak to be able to feed themselves.

01:04:24.440 --> 01:04:25.699
You need three meals a day.

01:04:25.700 --> 01:04:27.499
They have to maintain their body weight.

01:04:27.500 --> 01:04:30.739
So then they will have to feed
the other person by mouth.

01:04:30.740 --> 01:04:33.844
Or for instance if they have
a a tube into the stomach

01:04:33.845 --> 01:04:37.354
they have to give the other person
the nutrition that they need

01:04:37.355 --> 01:04:43.189
By injecting that shrewd Christmas
was kinda last real solid meal

01:04:43.190 --> 01:04:50.164
she had gone in and had a feeding to put in
because she could no longer eat solid foods.

01:04:50.165 --> 01:04:56.794
So I was pouring these cans of protein into
these bags and she never really liked.

01:04:56.795 --> 01:04:59.599
She never really liked it because
it was always kind of heavy.

01:04:59.600 --> 01:05:05.599
And so what we a lot of what we did
was we took soup soup packages

01:05:05.600 --> 01:05:08.748
tetra packs or whatever and it gave
me you know and kinda warm it up

01:05:08.749 --> 01:05:12.814
and put give her suit feeders
soup just through the tube.

01:05:12.815 --> 01:05:16.219
It\'s weird you know like it
just completely bypassed or

01:05:16.220 --> 01:05:19.578
throw it all together and
just went directly into her

01:05:19.579 --> 01:05:22.890
So there was this whole
process of doing that.

01:05:23.290 --> 01:05:26.359
I learned to give her BY 12 shots.

01:05:26.360 --> 01:05:27.829
So I was like Okay.

01:05:27.830 --> 01:05:35.830
Alright. Needle. Saliva was the word said

01:05:36.920 --> 01:05:39.498
the most like right at the end we had

01:05:39.499 --> 01:05:43.129
a suction machine because one of the things
that you don\'t think about of course

01:05:43.130 --> 01:05:46.428
and that nobody if seems like I didn\'t
know nobody really tells you is

01:05:46.429 --> 01:05:50.089
that when he can\'t swallow you
just have like all the saliva.

01:05:50.090 --> 01:05:53.239
Where does it go like if he can\'t swallow

01:05:53.240 --> 01:05:57.469
it and so we have this we have

01:05:57.470 --> 01:06:01.968
this thing that we turn on in IQ
gender and go around your mouth and

01:06:01.969 --> 01:06:04.278
all out and then she\'d say she needed

01:06:04.279 --> 01:06:06.649
again you know like half an hour
later whenever I need to do it

01:06:06.650 --> 01:06:07.999
again and there\'s

01:06:08.000 --> 01:06:16.000
just those fastenings 0s are huge tasks.

01:06:17.450 --> 01:06:20.239
You\'re an adult you have
all of these motions.

01:06:20.240 --> 01:06:22.249
You don\'t have someone taking
care of you in the bathroom.

01:06:22.250 --> 01:06:25.309
It\'s tough and they have a
huge respect for the for

01:06:25.310 --> 01:06:31.080
the family members daughters and sons who
do that as the burdens and honestly.

01:06:36.730 --> 01:06:40.144
It was scary to watch.

01:06:40.145 --> 01:06:43.653
Lens. Body degrade like that

01:06:43.654 --> 01:06:51.120
A year and a half was excruciating
for Catherine emotionally.

01:06:52.600 --> 01:06:56.029
And I\'m almost always such a survivor.

01:06:56.030 --> 01:07:01.938
And like a fighter whatever I was

01:07:01.939 --> 01:07:07.699
going through like just paled in comparison
to what she was going through I never felt.

01:07:07.700 --> 01:07:12.559
I never felt like I was giving up all this
and it\'s like oh I\'m sacrificing so much you

01:07:12.560 --> 01:07:15.198
know it was always just like I

01:07:15.199 --> 01:07:19.080
can\'t I can\'t even imagine what
she\'s going through right now.

01:07:19.420 --> 01:07:27.149
Your mom is dying and
you\'re trying to make art

01:07:27.460 --> 01:07:32.328
Before she dies that\'s why she\'s
a true artist because she

01:07:32.329 --> 01:07:38.280
can\'t take that pain and work through
it and put the paint into her work.

01:07:39.400 --> 01:07:43.234
Some of the songs don\'t really show it.

01:07:43.235 --> 01:07:45.649
But but others do.

01:07:45.650 --> 01:07:47.659
It knew that it was going to end.

01:07:47.660 --> 01:07:49.680
But even though.

01:08:02.500 --> 01:08:04.979
Thank you

01:08:08.370 --> 01:08:12.744
The next thing we\'re gonna do is
called adventures and solitude.

01:08:12.745 --> 01:08:16.148
And it was one of my mom\'s
favorite songs that we did with

01:08:16.149 --> 01:08:22.190
the new photographers and passively
just favorite song period.

01:08:27.900 --> 01:08:30.009
Circularly.

01:08:30.010 --> 01:08:38.010
She sat.

01:08:42.000 --> 01:08:50.000
In lesson four spear is gone. Yeah.

01:08:50.770 --> 01:08:58.770
And we\'ll assume.

01:09:29.620 --> 01:09:33.663
I\'ve had doctors tell me
they would rather diagnosed

01:09:33.664 --> 01:09:38.239
a late stage brain tumor then tell
someone may have ALS because ALS is

01:09:38.240 --> 01:09:43.729
just such a hard way to go that you
you know your body just vanishes.

01:09:43.730 --> 01:09:45.859
It just stops working and your mind remains

01:09:45.860 --> 01:09:50.330
sharpest attack and you know what\'s happening
and you can\'t do a damn thing about.

01:09:50.410 --> 01:09:53.014
She had no control over the disease.

01:09:53.015 --> 01:09:55.954
She had no control over who
was coming into her home.

01:09:55.955 --> 01:10:02.359
She had no control over anything to do with
herself and moving and her body her body.

01:10:02.360 --> 01:10:08.959
This functioning. She
must have just felt badly

01:10:08.960 --> 01:10:12.183
all the time that she was
having to rely on me

01:10:12.184 --> 01:10:15.979
like that and having you
know put like our family

01:10:15.980 --> 01:10:19.399
through this. There is
really only one time.

01:10:19.400 --> 01:10:23.179
We kind of had a bit of
a meltdown I was just

01:10:23.180 --> 01:10:27.319
forcing or Botha hospice you know I
kind of had to make that decision.

01:10:27.320 --> 01:10:31.470
And she didn\'t want to go because
she wanted to stay in the house.

01:10:33.640 --> 01:10:36.259
Linden wanna go.

01:10:36.260 --> 01:10:42.574
And when you\'re when you\'re dying and you\'re
in your fifties and you don\'t want to go.

01:10:42.575 --> 01:10:46.620
And you don\'t feel that you\'ve done
everything that you had to do.

01:10:48.100 --> 01:10:55.530
I just can\'t I just can\'t imagine
what that would feel like.

01:10:57.490 --> 01:11:05.490
You know. She said

01:11:05.840 --> 01:11:08.884
you know I\'m not I\'m not stupid.

01:11:08.885 --> 01:11:12.859
I know and I know what\'s
happening and this is

01:11:12.860 --> 01:11:17.199
not easy for anybody you know
haven\'t I don\'t I know I know.

01:11:17.200 --> 01:11:20.970
And you know we were both canopy.

01:11:23.470 --> 01:11:28.818
What is what is there to
say there isn\'t that much

01:11:28.819 --> 01:11:36.819
to say about payment

01:11:50.590 --> 01:11:53.898
I was there a lot you know
I was there six or eight

01:11:53.899 --> 01:11:56.599
hours a day generally
like everyday and then

01:11:56.600 --> 01:12:01.038
hospice you know because she was so scared
about being there by yourself not being

01:12:01.039 --> 01:12:03.379
able to communicate you
know I think it was just

01:12:03.380 --> 01:12:06.780
soothing nabbed me around.
So I wouldn\'t be there.

01:12:16.420 --> 01:12:22.560
I went to Sierra Leone
was very uh just fine.

01:12:23.530 --> 01:12:28.909
But so far it\'s a fire alarm and
it was shocking and I had like

01:12:28.910 --> 01:12:33.529
color of an evaluative sisters
sale it you should go see your.

01:12:33.530 --> 01:12:41.530
Now. My mom really

01:12:42.244 --> 01:12:47.239
really aided ls you know of course
you know she hated the disease.

01:12:47.240 --> 01:12:52.039
And I remember her saying to me at
some point that she just wished that

01:12:52.040 --> 01:12:55.398
from a certain point on
that cheetahs it can just

01:12:55.399 --> 01:12:59.400
erase everybody\'s memory
about what was happening.

01:13:15.040 --> 01:13:18.799
Glenn was always in
surprisingly good spirits.

01:13:18.800 --> 01:13:21.949
You know she was always like even
when it was hard for it to move

01:13:21.950 --> 01:13:26.880
her mouth muscles shouldn\'t force
a smile and best chicken and

01:13:35.020 --> 01:13:38.538
trying to understand death
and trying to understand

01:13:38.539 --> 01:13:41.269
life and what\'s life all about mirroring

01:13:41.270 --> 01:13:47.164
question like what\'s worse losing
someone very quickly are losing

01:13:47.165 --> 01:13:52.320
and slowly it\'s lifeless.

01:14:23.080 --> 01:14:29.404
Sounds or before that
and solve for the land.

01:14:29.405 --> 01:14:36.008
Well suppose it listens to

01:14:36.009 --> 01:14:44.009
agencies is the thinking institutions

01:14:46.955 --> 01:14:54.955
to try and receives is looked at as a gas
exchange that blindness assembly sequence.

01:14:56.975 --> 01:15:00.540
We have the sounds.

01:15:04.510 --> 01:15:07.560
Themselves

01:15:10.900 --> 01:15:14.039
It gives me

01:15:17.920 --> 01:15:20.609
space

01:15:32.020 --> 01:15:34.650
standards.

01:16:26.460 --> 01:16:31.220
In case you didn\'t notice.

01:16:36.670 --> 01:16:39.329
The

01:16:48.430 --> 01:16:50.969
show

01:16:53.050 --> 01:16:55.308
is just the change

01:16:55.309 --> 01:16:59.100
in seas changing sees.

01:17:28.090 --> 01:17:33.000
One in every 800 men that
die will die of ALS.

01:17:33.580 --> 01:17:37.728
Like guarantee all of you sitting
here today you\'re going to have

01:17:37.729 --> 01:17:43.339
a friend a family member or a neighbor
that\'s coming out this disease.

01:17:43.340 --> 01:17:45.469
It\'s not one of these diseases.

01:17:45.470 --> 01:17:47.149
They attract a lot of funding a lot of

01:17:47.150 --> 01:17:50.734
attention drug companies are not really
interested in putting a lot of money behind it.

01:17:50.735 --> 01:17:53.614
And the people who get the
disease don\'t live very long.

01:17:53.615 --> 01:17:55.954
So they\'re not around a
fight to advocate for it.

01:17:55.955 --> 01:17:59.074
So you don\'t have an
army on there to March.

01:17:59.075 --> 01:18:02.610
People get it and then they
disappear pretty quickly.

01:18:05.800 --> 01:18:10.789
I\'m sorry I emphasize joint
values by Michael J.

01:18:10.790 --> 01:18:14.700
Awesome. Thanks for that. For the show.

01:18:17.020 --> 01:18:22.519
I\'d dedicate this concerts everybody
who knows anybody who\'s ever had

01:18:22.520 --> 01:18:25.069
ALS and we hope then one

01:18:25.070 --> 01:18:26.669
day we can

01:18:36.100 --> 01:18:38.700
say

01:18:50.680 --> 01:18:56.839
One adult caring for another adult Yet
the creativity is a pretty basic.

01:18:56.840 --> 01:19:00.408
Despite the fact that it\'s
a terrible disease you

01:19:00.409 --> 01:19:03.244
really get to see Krishna or H or come out.

01:19:03.245 --> 01:19:11.245
You see families come together and really get
to know somebody when they\'re really sick.

01:19:11.630 --> 01:19:18.150
And I really feel like I
saw her bravery the most.

01:19:18.250 --> 01:19:25.470
You can\'t help but think of the strange
endings and beginnings of life. You know.

01:19:54.610 --> 01:19:56.659
This is moving day.

01:19:56.660 --> 01:19:59.010
It\'s our last day in house.

01:20:01.600 --> 01:20:08.310
I\'ve lived here for 30 years at this
house and it feels like the right time.

01:20:09.010 --> 01:20:17.010
So we\'re doing kick

01:20:19.189 --> 01:20:20.490
and

01:20:26.230 --> 01:20:31.350
keep them as men.

01:20:42.490 --> 01:20:50.490
Said to me how how is

01:20:53.290 --> 01:20:59.688
the can

01:20:59.689 --> 01:21:05.940
is me

01:21:32.320 --> 01:21:34.590
and

01:21:54.940 --> 01:21:56.479
Carl and I

01:21:56.480 --> 01:22:02.790
bought a place and 19 seventies
West Coast style home outside edge.

01:22:04.630 --> 01:22:09.859
We\'re really excited about it because
it\'s a beautiful beautiful property.

01:22:09.860 --> 01:22:11.253
Lots of garden

01:22:11.254 --> 01:22:16.320
Plus a little berries
eating lots of worms space.

01:22:28.600 --> 01:22:33.949
And you know the House has
a lot of memories for me.

01:22:33.950 --> 01:22:39.229
But the nice thing is that just because you
know it doesn\'t mean you lose those memories

01:22:39.230 --> 01:22:41.489
unless every talk going you

01:22:48.520 --> 01:22:53.089
can then use in Holland.

01:22:53.090 --> 01:22:57.120
What is the goal

01:23:34.900 --> 01:23:37.200
when

01:24:11.740 --> 01:24:12.888
they

01:24:12.889 --> 01:24:13.968
got there

01:24:13.969 --> 01:24:17.464
the time besides through ways.

01:24:17.465 --> 01:24:25.465
Then we are still

01:24:26.300 --> 01:24:30.060
in the air is too big.

01:24:59.410 --> 01:25:06.960
And also maybe dyspnea

01:25:58.300 --> 01:26:06.300
So I\'ve ever been in town for the weekend.

01:26:06.620 --> 01:26:14.179
We saw when the seasons change CSS to

01:26:14.180 --> 01:26:22.180
H2 is only a matter of time.

01:26:22.220 --> 01:26:25.249
You think you\'ve fallen behind.

01:26:25.250 --> 01:26:33.139
The same teacher may
change policies change PCs

01:26:33.140 --> 01:26:41.140
and say this is

01:27:02.090 --> 01:27:06.184
the basic thing in in three days.

01:27:06.185 --> 01:27:14.185
Once you see we\'ve got
places to be minus three.

01:27:19.030 --> 01:27:25.668
Yes. Thank you fall

01:27:25.669 --> 01:27:33.669
on the high seas.

01:27:48.340 --> 01:27:50.460
Yeah.

01:28:30.580 --> 01:28:32.699
And

01:29:07.330 --> 01:29:09.779
this is

01:29:37.510 --> 01:29:45.510
windows to

01:29:47.450 --> 01:29:50.790
keep those

01:29:56.350 --> 01:30:04.350
a man. When you said to me again how can

01:30:07.985 --> 01:30:15.985
this how can you

01:30:16.670 --> 01:30:22.679
say is the flow

01:30:24.790 --> 01:30:29.854
is suing me and I can never say no.

01:30:29.855 --> 01:30:33.030
No no.

01:30:33.760 --> 01:30:37.429
I\'m not deal L1.

01:30:37.430 --> 01:30:45.430
Just swap you two phase.

01:30:47.000 --> 01:30:51.479
When you said to me

01:30:51.760 --> 01:30:59.760
you How are you so so it is amazing.

01:31:01.840 --> 01:31:09.659
How is underneath

01:31:19.540 --> 01:31:21.720
yeah