August 7, 2025 • 48 mins
This episode follows the powerful and unexpectedly uplifting story of Jake Popyura, a musician and multi-instrumentalist in the indie rock band Supermilk, who was diagnosed with ALS at just 38. Rather than despair, Jake felt relief—finally understanding the cause behind years of unexplained symptoms. As his physical abilities shift, Jake and his bandmates have chosen adaptation over retreat, pouring their energy into their recent album Lazy Teenage Boasts. Balancing terminal illness, mental health challenges, and a relentless creative drive, Jake leans into dark humor and online community to navigate the journey. His story is a testament to resilience, reinvention, and finding meaning through music in the face of life's harshest realities. Thanks for listening. Hugs, Lorri
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Paul & Christian Carey (00:09):
Hey, I'm Paul and I'm Christian.
Welcome to.
I'm Dying to Tell youinspiration shared by our mom,
who is dying from ALS.
There is no cure for our mom oranyone else with ALS, but right
now she's on a mission to findand share stories of inspiration
Coming to you from Cincinnati,ohio.
We're happy to introduce theone lady we've both loved since
(00:29):
the first day we laid eyes onher the queen of the queen city,
our mom, your host.
Lorri Carey (00:35):
Lori, I'll tell you what.
After five years, thatintroduction does not get old.
(01:01):
Thank you guys for that.
So I'm, lori, your host of.
I'm Dying to Tell you.
Thank you for being here.
I appreciate you listening inand being a part of this very
unique, very special podcastcommunity.
(01:23):
You know, I meet so many peoplewho inspire me, so many people
that I learn from, whoillustrate courage and
resilience, and my guest todayis exactly that, and my guest
(01:45):
today is exactly that.
I am going all the way to the UK.
Well, I wish I was going allthe way there, but I'm jumping
on Zoom with Jake Papira, andhe's young he is only 39 and
(02:11):
living with ALS.
You might also hear himreferred to it as MND motor
neuron disease.
Als is the most common form ofMND.
Cenk is the creator and is inthe band Super Milk.
I'm going to check in with himand see how he is continuing to
(02:32):
do music, what his plans are ashis physical abilities change
because of ALS, and I know thatJake has also been very public
about his mental health, and soI'm super grateful that he's
willing to talk about that aswell.
(02:53):
Yeah, I'm already super proudof Jake for choosing to use his
stage to bring awareness to ALS,and also for wanting to come on
and chat with me and share withall of you about his journey.
(03:19):
Okay, let's go on over and chatwith Jake, let's go.
Okay let's go on over and chatwith Jake.
Let's go Well, thank you forgetting with me on your holiday
and everything.
So where are you right now?
Jake Popyura (03:36):
So I'm on holiday with my partner and her family
in Devon, which is kind ofsouthwest England we're all from
London but so this is quite farthe other end of the country
for us
Lorri Carey (03:44):
.
Oh, okay, okay Nice.
Do you have children?
Jake Popyura (03:52):
No, we don't.
We've actually been doing IVFthis year, so we're kind of in
the process of doing that at themoment, in the sort of early
days, so we'll see how that goes.
So it's something that we'vewanted for a while to have a
family.
We've both known each other fora really long time.
We kind of met through playingmusic and we met as friends.
(04:13):
So, you know, we were reallygood friends for a long time and
then became a couple.
When we became a couple, it was, you know, one of those things
that was sort of on the agendafrom the beginning was like okay
, do we both, you know, want afamily?
Is this something that kind ofmatches up for both of us?
And it very much was.
So, yeah, we're kind of on thatjourney at the moment.
So fingers crossed.
(04:34):
Yeah, oh, absolutely yeah.
Do you have kids yourself?
Lorri Carey (04:38):
I do.
I have two guys.
They are almost 33 and almost35.
Oh wow, yeah, they both are ona new journey, living in
downtown denver, and you knowthey're working together now.
Oh great, yeah, yeah, so it'sfun, yeah, but I really like um,
(05:00):
I like denver a lot.
Jake Popyura (05:01):
I haven't been um , haven't been for a long time.
I think the last time I wasthere was the year before COVID,
because my old band played ashow, I think, in Denver.
I think it was like at the backof a book.
We played like a little show,spent a lot of time there.
My old band from about 10, 15years ago.
(05:21):
We used to tour America a lotand Denver was one of the places
that we were most popular, sowe would always sort of come
through on tour and play to alot of people, which was really
good oh yeah, yeah, I love it.
Lorri Carey (05:35):
Actually we're going back on friday.
How old were you when you werediagnosed?
Jake Popyura (05:41):
uh 38.
It was um january last year, soI'm 39 now.
So it's yeah.
They've been sort of with itwith als officially for just
over a year and a half yeah,yeah, I was 38 when I was
diagnosed and yeah, and that was.
It was 20, 21 years you've beenyeah and I just turned 60 last
(06:03):
month and I remember my husbandhad a surprise party for me on
my 39th birthday because hethought I would not turn 40.
My partner did the same for me.
This year.
Lorri Carey (06:21):
Oh my gosh, Really.
Jake Popyura (06:23):
Yeah, she did well, I think, um, because I
mean it sounds like you've,you've had a very fortunately
like a slow progressing form,the fact that you're, you know,
obviously still here but stillcommunicating like very, you
know, like very well, um, and Ithink we've known that my, my
form of it is a little slowerthan some forms.
(06:46):
So she was making plans for my40th, thinking about what I'd
like to do, and then Jay, thedrummer in my band, said why
don't we just do it for his 39th?
Like we've been shown that lifeis too short by his diagnosis,
so we might as well like, let'sdo something, let's celebrate
this birthday and then we can dosomething else for the 40th.
(07:07):
So yeah, it was a very sweet,sort of nice surprise where I
had a bunch of my, my friendssort of all gathered around, and
so it's very nice okay, this isa sign you're diagnosed at the
same age, same, and you're gonnabe on the same path.
Lorri Carey (07:22):
I can tell, yeah, I'm gonna be on the same path
it's very, it's very cool to seethat like that you've been
living with this.
But for I mean, obviously it'sterrible, but like the fact that
it's now 21 years and far out,you know, out way outliving the,
the prognosis is fantasticabsolutely, absolutely, and tell
me about the day you knewsomething was wrong.
(07:44):
You're 38 and you know somethingis up.
Jake Popyura (07:48):
So by the time I was diagnosed, I'd been having
symptoms for about two to twoand a half years roughly.
And I think the very firstthing that I noticed that I can
sort of trace back to being asort of definitive symptom of
ALS, was like my toe.
I was laying in bed one nightand I just moved into a new
(08:10):
place, so I was kind of settlingin and I've been in there for
maybe like a couple of monthsand I was lying in bed and I
just felt my toe sort of likealmost like pulsing, like
electricity kind of movingthrough it, and I looked down at
my big toe and it was justmoving on its own, just doing
this very almost like morse codestyle, sort of like twitch, and
I was like that's yeah, that'spretty weird.
(08:32):
And because I'd I'd had anankle injury well, a couple of
injuries to the same ankle whenI was once when I kind of
slipped and fell on the stairsand um, again when I was out
jogging because I, you know, Iused to really enjoy running and
that was my main kind of way ofkeeping fit um, and I'd injured
the same ankle a few times andthere was, I was like, oh, maybe
(08:54):
there's some nerve damage therefrom that incident and there
was lots of things that ended uphappening.
That was the first thing Inoticed.
And then I I just noticed myfoot dragging a lot when I was
walking, especially if I'd hadlike a couple of like beers or
something, but my legs startedto get lazier.
I fell down the stairs in my inmy new place a couple of times,
(09:14):
but all of that I attributed tothis ankle injury.
So I, because that had happenedso close to it, I just assumed
that like, oh, this, this, thismust be why this I've suffered
some nerve damage and it just atthe time it never occurred to
me that it could potentially besomething like als or, you know,
ms, anything like that.
Um, and it was only as time wenton, like over the course of
(09:38):
like two and a half years, whenit wasn't nothing was getting
better but things were verynoticeably getting worse.
I think I gradually in my ownhead started to think.
I think this could be somethingmore serious and I think ALS is
a potential, because I alreadyhad a friend who was diagnosed.
He has familial, the SOD1 MND,and I worked with him for quite
(10:09):
a long time and uh, so I knew alittle bit about als and mnd
beforehand so it was on my radar.
So I think because I knew himand I was friends with him, that
was.
It was something that kind oftriggered the thought like maybe
this could be a possibility.
And I've got to sort of bracemyself for the fact that this
could be a possibility and I'vegot to sort of brace myself for
the fact that this could be apossibility.
Lorri Carey (10:30):
Yeah, wow.
So tell me what you thought.
What like, what was your firstthought?
Jake Popyura (10:35):
To be honest it was and I've told like a few
people this and I think peoplehave a bit of a difficulty sort
of wrapping their head around itbut it was almost like a relief
in this kind of strange way,because I'd been, I'd spent the
last two and a half years livingwith this sort of thing that I
knew was progressing in adirection that wasn't good.
Um yeah, and I kept saying likeI'm quite an anxious well,
(11:03):
quite, I'm a very I'm a veryanxious person.
I'm prone to sort of overanalysis and overthinking
everything.
Yeah, so when I was saying tomy partner, for example, and my
friends, like this doesn't feelgood, like something, I'm really
worried about this, they werevery well meaningly being like
I'm sure it's fine, like youknow, just just see how you feel
, maybe go to the physio, go tothe doctor, see what you can do.
But I'm sure it's fine, likeyou know, just just see how you
feel, maybe go to the physio, goto the doctor, see what you can
do.
But I'm sure it's, I'm sureit's just something that with
(11:24):
like rehabilitation or maybe abit of surgery, will improve.
And I just knew at the back ofmy mind like I'm not sure if
that's going to be the case.
When the neurologist said, likeyou know, have you heard of
motor neurone disease?
I like I knew it.
Oh yeah, it was.
So it was kind of like almostvalidating in a way.
(11:44):
It was like I knew, I know whatthe implications are, that it's
, that it's fatal, that it's notcurable, not treatable.
Really, um, even though I knewall of that, it was like this
real kind of rush of relief thatI finally had an answer and
could finally start to sort oflike process things in my head
and make plans to.
You know how do I feel aboutthis?
(12:05):
How am I going to deal withthis emotionally and physically
and tell people and so yeah, ina weird way it was like you know
, terrible news, but it was.
It was more welcome than havingno answers whatsoever, if that
makes sense to me it absolutelymakes sense.
Lorri Carey (12:20):
I'm the same way.
I really believe that knowledgeis power.
I, you know, have learned overthe past 21 years the importance
of being proactive and notstubborn.
Um, you know, just preparingyourself physically and mentally
(12:42):
and spiritually.
I totally, totally get that andyou know it's.
I mean, look at me, there's alot of other people that have
had ALS MND for a long time,have had ALS MND for a long time
, and so back in the day it usedto be, people thought, yeah, I
(13:05):
will die in two years in two orthree years Now, with all that
we know and with people beingproactive.
It's not always the case, soyeah, it's just.
Jake Popyura (13:18):
I mean, the thing I find wildest that I still
can't really get my head aroundand it just it, it floors me
every time I think about it isjust how variable it is from
person to person.
Like it's incredible, like um,I think I mentioned to you
before, uh, when we were firsttalking.
I said that I'm I know a coupleof the per als yeah, that story
people, so I got to know someof them by being invited to one
(13:39):
of their group chats, that sort.
I said that I know a couple ofthe per ALS story people, so I
got to know some of them bybeing invited to one of their
group chats.
That's sort of open to peopleof all gender identities as
opposed to just women, and Ithink there's close to 100
people in that group now andit's been a great sort of
support system and I've got tomake some kind of good friends
(14:02):
in there that I haven't even metbecause it's all just kind of
on, you know, like virtual, andwe're all in different parts of
the country.
But just seeing how different itis in that group, um, from
person to person, there's somepeople that are.
They've been living with italready for a few years and
they're still walking around.
They're still, you know,they've got full use of a lot of
(14:23):
things.
There's people that were onlydiagnosed last year, that are
already, you know, very sort offar down the path and have kind
of lost their ability to speak,and just it's fascinating and
also terrifying to me, just howit feels like there's no rule of
thumb.
Like there's you know, there'sthe shared symptoms, yeah, and
(14:45):
there's this kind of.
There's lots of things thateveryone can relate to, who has
it, but the actual sort ofjourney time of it and prognosis
and all this kind of stuff isso unbelievably different.
Lorri Carey (14:57):
Yeah, yeah, it is for sure, and I'm so happy that
you've got connected with herA-list story.
I know many of them and I'vetalked to many of them on here
and I always think of them asthe perfect definition of
community.
You know, I know they're therefor each other every single day
(15:19):
in the chat and they are able toexpress a lot of their feelings
that you know maybe they can'tto their caregiver or their
spouse or their partner, and Ithink that's really, really
important.
And you know, being young andhaving a terminal disease that
(15:45):
doesn't have a care and has verylittle effective treatments can
blow your mind, obviously.
So you know, talking aboutcommunity and your van Super
Milk tell me about when you hadto tell your van family.
(16:06):
It was probably the hardestpart of the whole thing, I think
immediately after I wasdiagnosed I actually felt fine
and I felt sort of immediatelyfollowing my diagnosis and sort
of six months afterwards I feltprobably the most calm and at
peace and just zen that I thinkI've ever felt in my whole life.
It just had this very strangeeffect where I was like I felt
(16:29):
like well, you know what?
I've lived a very I've beenfortunate enough to live an
incredibly good, very full, verysort of adventure packed life.
So I'm very grateful for thatpart of it.
And now this is just somethingthat I have to deal with.
So the only thing that I wasreally worried about and caused
me quite a lot of anguish washow am I going to tell everyone
like how, how is that going toaffect them?
(16:50):
And particularly like myparents I was, I was really the
most difficult thing.
Um, the band.
I mean they'd known for quite awhile that uh, they'd sort of
seen me starting to um strugglewith like walking and and all
kinds of different things, likeuh m the who's one of the
guitarists in in super milk.
(17:12):
She, she'd been with me acouple of times when I'd fallen
down the stairs.
There was there was one timewhere she stayed over and I fell
down the stairs.
So she was already kind of, andeven you know, like about half
a year before I got diagnosed,when we were playing, we were on
tour and every show I basicallyhad to hold one of their hands
in order to get up onto thestage.
So like because because venuesfor shows, like clubs, aren't
(17:35):
designed for anyone with anykind of access oh, yeah, right,
whether you were a patron or aperformer, especially the little
narrow staircases with no sidesthat you have to kind of step
up onto in order to kind of getup onto the stage.
So I was having to holdpeople's hands and so but I
think, even though it it itwasn't really a shock to me,
(17:57):
when I got, you know, diagnosed,I was like, oh, obviously
that's what it is, okay, andthen I kind of told them, but I
think it was a shock to thembecause I think in their heads
they were like, oh, this is just, this is something that he's
gonna, you know, he'll, he'llfigure out what it is.
And then there's, there'streatment and it will be fine or
, you know, it's, I think, atworst maybe like MS, you know
(18:17):
that kind of thing.
So when I told them, yeah, Ithink there was sort of mixed
reactions.
But they've been the three ofthem, so Em and Charlie and Jay,
who are my band members they'vebeen just the most supportive.
I couldn't ask for better sortof like friends and band members
, like they've been fantastic.
(18:38):
And about a month after I gotdiagnosed, we went in to record
our third album.
So you know, it was all written, it was all demoed and we were
kind of like, right, okay, well,let's, you know, time is short.
You know, nothing lasts forever.
This is sort of proof of that.
Let's, let's make the most ofthis before.
It's not going to be, but, youknow, before there's a chance it
might not be possible anymore.
So we had a very full andexciting year as a band, kind of
(19:01):
making and releasing an albumand then touring all over the
place and and kind of spending alot of time together and just
laughing a lot.
And there's been times wherewe've played venues where
there's no stairs up whatsoever.
So like, thankfully, all threeof them are very physically
strong and very kind of likeable-bodied, all kind of like,
you know, pretty fit.
Charlie is a, is a wrestler, asort of pro wrestler in her
(19:24):
spare time or kind of does likea lot of that kind of thing.
So they would all three of themwould like physically lift me
up onto the stage, um, at someof the shows and uh, you know
all that kind of stuff like getme in.
When I needed to get in and outof the van when we were on tour
.
They would be kind of likelifting me up and and um, so
yeah, it was just the mostunderstanding, patient and and
(19:46):
sort of like lovely people thatI could hope to be, you know,
surrounded by, which is greatyeah, absolutely, and did you
find that they treated you thesame?
Jake Popyura (19:56):
I mean, besides having to help you like, do they
just treat you the same as theyalways have?
Lorri Carey (20:03):
yeah, I would say so.
I mean the thing, somethingthat I feel like has really
helped in my journey is I'vealways had a very dark sense of
humor, um, and a very sort of umlike the four of us in the band
and our kind of extended groupof friends, all share a very
sort of silly, very, very sillysort of sense of humor.
We're all like capable of makingeach other laugh a lot, which
(20:27):
is exactly what you sort of wantfrom a group of friends, but
the way that we've all been ableto laugh at this has been
really great, just likeconstantly making fun of it.
Because, you know, when I foundout that's what I had, I sort
sort of thought, you know whatlike there's a lot of humor to
be found here, because it's likeit's an inherently absurd
situation to be in.
(20:48):
So, even though it's likedevastating and it's life
altering and it's fatal, there'sso much comedy to be mined from
this situation.
We're just constantly jokingabout it.
I'm constantly, you know,cracking quite dark jokes at my
own expense and I think at firstthey didn't want to overstep,
but then, as time yeah, veryquickly, they sort of, you know,
(21:10):
relaxed into the fact andeveryone, everyone just makes
fun of it and it's, it's really,it's really great.
I wouldn't have that any otherway, to be honest.
Jake Popyura (21:19):
But that's great.
They're following your leadthere.
And when you mentioned thathumor and alice can go together,
the first person I think aboutis brooke evie, also to cope,
you know, with her journey.
Lorri Carey (21:50):
Yeah, definitely, I don't know Brooke very well,
but she was the reason why I wasinvited into her ALS sort of
universe in the first place inthe group chat, because I
actually, you know, shortlyafter I got diagnosed, I was
kind of doing more research andI found her Instagram and I saw
a couple of interviews with heron.
(22:10):
I think it was probably GoodMorning America or one of those
talk shows where she wasexplaining her journey and how
she came to be diagnosed in thefirst place and find out that
and it sounded very similar tomine.
But then, seeing how sheapproached it with such humor
and making fun of it and almostlike lampooning it, like
(22:30):
laughing at it, going like youknow you're, you're not going to
take my spirit, kind of thing,yeah, yeah, I actually sent her
an email and was like I justwant to say like thank you for
this.
It's me and my partner saw yourvideos and it made us laugh and
like made us feel a lot betterabout the whole thing and she
was like, oh well, there's acommunity over here if you want
to come and join it.
(22:50):
So it's very.
I'm thankful to her connectingme with a lot of people I sort
of know today.
Jake Popyura (22:55):
it's very good yeah, oh, that's great, perfect.
Um, you mentioned that afteryou were diagnosed, you were
experiencing this kind of zenfeeling, and I've read that
you've talked about mentalhealth and your mental health
(23:17):
and I feel you know that's oneof the areas that you know we
don't talk about enough, evenwith ALS, so can you tell me a
little bit about that in yourpersonal experience?
Lorri Carey (23:30):
Um, so I was diagnosed with bipolar type two
when I was just after I turned30, I think, after a sort of
lifetime of having sort ofmental health struggles and not
really having words to tonecessarily to them or really be
able to describe to people whatI was feeling.
Um, and it's, I mean, it's beenvery turbulent and it's been a
(23:55):
real.
It's been a real challenge.
Having, you know, a sort ofphysical health condition and
also a mental health conditionand trying to just keep afloat
during this, you know, keep themsort of in check with each
other and just just to stayabove water is is sort of daily
challenge.
I mean, you know, I think foranyone living with als mental
(24:17):
health, there's going to bestruggles, there's going to be
real challenges and it's a sortof daily battle, regardless of
whether you have any sort ofhistory of mental illness or
anything.
But yeah, strangely, the sixmonths following my diagnosis it
was like I'd never felt so calmand accepting.
(24:38):
I'd never felt so calm andaccepting, but I think part of
that was because I still had somuch, there was still so much
function that I had then whichI've now lost, like I was still
able to, with a few sort ofalterations and adaptations to
my stage setup, I was still ableto play shows, I was still able
(24:59):
to sort of walk around, I wasstill able to, like, climb
stairs with the you know, aslong as it had the railing and I
had a cane, I was still able toget up and down a lot of stairs
, that kind of thing.
But I think around the time,this sort of time last year, I
was made redundant as well.
I was laid off from my job.
So I think I was just aboutholding on to sanity after being
(25:19):
diagnosed with this reallylife-altering thing and then all
of a sudden the job that I hadI'd had for quite a long time,
were like, oh sorry, we've gotto let you go.
And that was.
It was kind of around that timethat I started to struggle
quite a bit because it wasalmost like I'd been thrown a
bit off course by this diagnosis.
But then there was this quitevital part of my life which is,
(25:40):
you know, like a steady incomeand a kind of anchoring that was
also taken away, and also thendealing with the feelings of
just feeling incredibly hurt andlet down and sort of almost
betrayed by these people who I'dcome to sort of trust that I
worked with, these people, whoI'd come to sort of trust, um,
(26:03):
that I worked with, and just areal feeling of I don't know if
I can swear on this podcast, buta real sort of feeling of fuck
you like, why, why have you donethis, like not even six months
after being?
you know, it was almost likethere was a kind of like.
You know, I was flying a planeand then the als diagnosis had
kind of flown it off balance,but I was kind of like gliding
in this really kind of nicepeaceful state and then the
(26:25):
redundancy was like one of theengines failing and it just
really tipped me off balance andI just kind of went careering
to the ground a little bit.
So the period then and now hasbeen, you know, there's been
lots of mental health challengesand it's's, it's.
it's been quite turbulent and Ithink my partner, sophie, is the
one person who sort of seesthat day in, day out, because I
(26:47):
feel like I'm able to sort of,for the most part, put on a
brave face in front of myfriends and my colleagues now
that I've got you know anotherjob.
But she's the.
She's the one person who'sthere in the trenches, if you
like, kind of seeing it everyday, and she, she's been there
when I've been at my lowest andit's been, you know, literally
not being able to get myself upoff the floor and just being
(27:10):
completely spent of energy andjust kind of feeling like I
don't know what to do, I don'tknow how, you know how, to
proceed from here.
So I mean, I'm still here so itcan't be like you have these
tools and these, thesetechniques, and you have a
support network, hopefully, andyou have people to be able to,
(27:31):
you know, physically andspiritually and emotionally,
pick you back up, which is whichI'm very lucky to have, and if
I didn't have that, I don't knowwhat kind of position I'd be in
, to be honest, but the factthat I do have that is, you know
, I can't be thankful enough forthat.
Jake Popyura (27:47):
Yeah yeah, yeah, it's a challenge.
Yeah, besides having Sophie anda community that you can trust
and you can rely on, is thereanything that you would suggest
to someone else that was dealingwith some heavy mental illness
(28:11):
and ALS together?
Lorri Carey (28:14):
I would say find any way that you can to keep
busy, whether that be yeahsomething to focus on, yeah,
something else to focus on, Ishould say.
Yeah, exactly.
Jake Popyura (28:30):
Is there anything else?
Is it?
Lorri Carey (28:33):
Coffee, lots and lots of drinking in an
inordinate amount, an inordinateamount of coffee, I think has
really helped.
Um, but I, I sort of took abreak from drinking alcohol just
before I was diagnosed.
So, with the absence of alcohol,coffee has sort of taken up
(28:55):
that space where alcohol used toexist and I've I mean, I was
saying that sort of jokingly,but yeah, just being able to
find pleasure in whatever youcan and it's very, very cliche
to say, but like you know, likethe small things that make you
smile and and kind of channel asmuch energy as you can into
(29:16):
into those things, or to kind oflike really savor them, whether
that be like a nice thing toeat or drink or some kind of
hobby or some kind of placewhere you can get out to if you
can get out, yeah, trying tokeep your mind busy, whether
that's like a like an actualhobby or something that you like
to immerse yourself in, whetherthat be like fiction and
(29:37):
literature or films or that kindof thing, or just like
community.
You know there's lots of thingsthat I hate about the internet,
but it's really brings peopletogether that aren't able to
communicate or travel or reallymove around in traditional ways
and that's where the ALScommunity I think it's really
like, flourished and and thefact that I'm in a group chat
(29:59):
with people who are all over theworld you know, mostly in
america, that I'll probablynever meet in person, but the
fact that we're all able tocommunicate with each other and
make each other laugh and offersupport and stuff like that is
really fantastic.
Jake Popyura (30:14):
Um yeah, I guess like community.
Keep busy and lots of coffeeyeah, just continuing to do what
brings you joy, like that's key, and so, thinking about that, I
want you to tell me about thevan, I want you to tell me about
(30:35):
your music and what you planfor the future, because that is
your passion, that is your joy.
Lorri Carey (30:41):
I feel like it's a transitional period right now
where the whole of last yearfollowing my diagnosis was
basically we already had analbum written.
I'd kind of finished writing itand demoing it and stuff a
couple of months before mydiagnosis formally so and I was
still able to play, um, all theinstruments I was still able to
(31:04):
sort of drum to to a certainextent.
So I was able to kind of makethese demos for the band to be
able to listen to and go likeokay, these are, this is how the
song is gonna go.
Let's, let's rehearse this.
And then, when I was diagnosed,I basically let's, let's
rehearse this.
And then, when I was diagnosed,I basically it was like right,
let's do this, because I don'tknow how much longer I'm going
to be able to like, I don't knowhow my physical condition is
(31:24):
going to deteriorate, like atwhat rate it's going to
deteriorate, when I'm going tostart to lose function.
So last year was more aboutlike let's just kind of throw
ourselves into it, record thisalbum.
Year was more about like let'sjust kind of throw ourselves
into it, record this album,let's go on tour, let's, let's
really make the most of um thistime.
Yeah, and now, this year hasbeen more coming to terms with
(31:45):
the fact that I've lost theability essentially to play
instruments in a traditional wayso I was, I was able to kind of
get through all the way to theend of last year.
And now is like a very differentstory.
I can't really play guitaranymore.
Drums that I've been playing,you know I was.
I started playing drums when Iwas really young and played it,
(32:06):
you know, all throughout my lifeand and I have to I had to give
that up because it's just notpossible.
Um, so now it feels like atransitional period, like, um,
of trying to figure out whatcomes next whether the band
takes a backseat and makingmusic generally takes a backseat
and I switch focus to somethingelse.
Or whether I sort of stubbornlyput my foot down and find some
(32:28):
way to continue making it at thesame pace that I used to, with
different methods.
Whether it's just all inside acomputer and sequencing things,
um, whether we stop playing gigsall together and just become a
sort of studio band, or whetherwe do the occasion, occasional
gig, it's.
It's like there's all of thesesort of open-ended questions.
At the moment I'm still verymuch in the in the midst of
(32:52):
trying to to figure out, butwhat I do know for certain is
that music will always be partof my life, um, and I'll always
be thinking, regardless ofwhether I can kind of like
communicate it in a traditionalway, like I used to, I'll always
, I'll always be thinking ofideas for songs and lyrics and
(33:14):
melodies and building structuresin my head, and I don't think
that's something that I canswitch off.
So I've got a feeling it'sgoing to very much continue in
some form, but what that formwill take is unknown at the
moment.
Jake Popyura (33:29):
I think yeah, yeah, are you a full-time
musician?
Lorri Carey (33:33):
no, I'm a full-time software engineer, um, from for
my day job.
Okay, I used to balance it outa bit more.
So I would sort of balance thatout with the music and they
would sort of make each othercomplement each other and make
them make each other work.
But now it's it's sort offull-time, just because that's.
Yeah, that's where the sort ofmoney is, that's what's paying
my bills, and especially now Ican't really do um the music
(33:54):
side of things as sort of moneyis, that's what's paying my
bills, and especially now Ican't really do um the music
side of things as sort ofintensely and as full-on as I
used to be able to.
That's the focus has shiftedthere, for money reasons anyway.
Jake Popyura (34:05):
But yeah, yeah, yeah.
What is something that ALS hastaught you?
Lorri Carey (34:14):
um, it's going to sound very cliche, but we're
only here for an insanely smallamount of time.
It's something that als hastaught me, but sometimes I'm
very resistant to learn thelesson, and that's, uh, the
small things don't matter, likeum, the things, the things that
you worry about on a regularbasis, especially if you're a
(34:35):
kind of anxious person who'sprone to overthinking like a lot
of the stuff that you spendtime thinking about whether that
be someone who's pissed you offearlier that day, someone who's
kind of, like you know, lookedat you the wrong way, or kind of
, like you know, worrying ifyou've sort of hurt someone's
feelings, or being pissed off atsomeone because they've hurt
your feelings, worrying ifyou've sort of hurt someone's
feelings or being pissed off atsomeone because they've hurt
(34:55):
your feelings Largely, it's allstuff that, in the grand scheme
of things, doesn't matter thatmuch.
And the amount of stuff, theamount of time that we spend
thinking and sort of likeruminating on these really small
things, you kind of realize,when ALS has sort of taught me,
that those things don'tultimately matter.
In fact, that is sort of like awaste of energy if you kind of
(35:23):
get.
Whenever I get angry these days,it leaves me feeling very
physically exhausted.
So it's yeah, it's better totry not to get wound up or sort
of angry, or you know, that'sthat's going to provide me more
energy to get through the dayand actually spend it doing
things that I want to do.
Yeah, yeah, and not just kindof in my head.
The lesson is one that Istruggle to employ in my
day-to-day life.
You know, you can learnsomething and you can yeah, you
(35:46):
can struggle to sort ofimplement it, but it is
definitely a lesson that's worthpaying attention to, I think
paying attention to.
I think is there something thatyou want other people to know
about als, or about being youngliving with a terminal illness
that they might not know I thinkwhat I'd like people to to know
(36:09):
about it is that you have toconstantly adapt, and that's the
thing that I found sort ofimpressive about everyone who
has ALS is that the adaptabilityof people who have it is really
incredible.
And I don't know, I suppose, todrive home the fact that it is a
(36:29):
progressive disease, because Ithink people get used to you one
way and then they think like,oh, that's just how they are now
, like they've lost thisfunction, they're in a
wheelchair, but they can stilltalk, still do this, they can
still get around, or you know,they'll be fine for a long time.
And then, if you don't see themfor a long time, I think they
(36:50):
get quite shocked if you've lostlike a lot more function in
that space of time.
But, yeah, shocked if you'velost like a a lot more function
in that space of time.
But yeah, yeah, um, I think theword progressive doesn't often
land with people quite as muchas um, it does for the people
who are kind of going through it, because there's, there's no
one who's, uh, more of an expertabout your body than you, um,
(37:13):
even though you might not belike a scientist or a kind of,
you know, like a doctor, theonly single person in the entire
world who knows how your bodyis supposed to feel from the
inside.
Um, yeah, and when you can feelthings starting to go, whether
that be your arms, your legs,your voice, you know something's
not right.
This would lead me on to say thething that I would like people
(37:36):
to to know yeah is to sort oftrust the people who are going
through it, um, and when theytell you that something has
changed in them and andsomething doesn't feel right or
uh, listen to that.
Don't, don't just assume thatthey're kind of overthinking it.
Because I think beforehand even, um, before I got diagnosed,
(37:58):
when my friends were sort ofvery well meaningly being like,
oh, I'm sure it's nothing.
Yeah, it was something.
So it kind of goes to show thatlike you're your own biggest
expert about your own body?
I think is, but it may be likea way of summing that up.
Jake Popyura (38:14):
No, I love, love, love that.
I love that because you canfeel isolated, because someone
just doesn't know and they justdon't understand.
And there are things that arehappening to your body that
other people cannot see, theycannot feel.
You know, for me my diaphragmis pretty weak and I can walk,
(38:41):
but I've been at 40% for youknow like four or five years,
and people don't know that.
So there are parts of thedisease that you know.
It's just not real obvious toother people.
So I like that.
No, that's great.
I really really appreciate that.
So tell me a little bit aboutyour band as far as the music,
(39:06):
and I'll put in the show notes alink to your music.
I think that's really cool Tomy listeners.
My show notes are available onthe website and the Facebook
page, both at I'm Dying to Tellyou podcast.
Yeah.
Lorri Carey (39:25):
It's difficult to explain.
It's very sort of Americaninspired for the most part and
drawing a lot of influence fromthe 90s, which is sort of the
time period in which I grew up.
I was born in 86.
I was, like introduced to musicwhen I was very, very young and
I was starting to sort of buyit kind of consciously, like
(39:47):
listen to albums and get intobands when I was about six or
seven.
So I felt that the early, wellthe whole period of the nineties
is a is a period of time whereI draw probably the most
influence from in terms of, like, my tastes for things.
So yeah, musically it's sort oflike indie rock and alternative
and grunge of the 90s.
(40:07):
Yeah.
Especially like American bands,but then also little bits of
sort of post-punk like a newwave and stuff like the B-52s
and Devo and bands of that sortof era XTC.
But Super Milk itself hasexisted since 2017.
(40:27):
So eight years, eight years oldthis year as a project.
It started out just as me doingeverything, so I've been playing
sort of multiple instrumentssince I was really young and
Super Milk at the beginning wasjust me recording everything.
So it was like a one man bandtype thing of you know bass,
drums, guitar, vocals,synthesizers, and I recorded a
(40:48):
couple of albums like that andthen we eventually turned it
into a full band that playedlive with some of my friends.
My partner, sophie, was one ofthe original members, um, and
then she took a step back tofocus on other things.
But, uh, we've been a full bandand playing live now for about
three and a half years, I think.
Um, nice nice.
(41:09):
We've got a couple of new songsthat we're recording at the end
of the year, um, so that'll beinteresting to see how that sort
of looks.
Uh, now, with not being able tosort of play instruments in the
traditional sense, how I'mgoing to communicate the stuff
that I've written to the otherguys.
And fortunately, at the momentmy, my voice is still quite
strong.
I haven't got any sort of bulba, um, so I can still sing pretty
(41:31):
full voice.
So I want to make the most ofthat, as you know, for as long
as I can, uh, but yeah, we'llsee, see how it pans out yeah,
good, good luck.
Jake Popyura (41:42):
Do you know my friend john driscoll hopkins and
the zach brown fan?
Lorri Carey (41:48):
I don't know him personally, but I know of him
through the community.
Jake Popyura (41:52):
Yeah, he's still.
He's still playing.
Right, he is still playing.
Yeah, so I want to say it wasdecember of 2021.
I think he was diagnosed.
He noticed because he couldn'tlike double time on the guitar
as fast as he should and he waslike man, something's wrong.
(42:15):
And then this was like rightbefore coven and they had a
break from coven, then came backand like guys, there's
something going on here yeahhe's still hanging in there
doing good, so yeah that's goodto hear.
Lorri Carey (42:29):
I've seen some clips of him uh, being
interviewed and a few clips ofhim playing live and stuff and
it's really good.
It's great that he's using hisplatform to bring awareness to
it and stuff as well.
Jake Popyura (42:39):
Yeah, yeah, I think they've raised almost $5
million for analyst research.
Yeah, we actually got ticketsyesterday, ticket in the sphere
in Vegas, to watch him at thesphere in December.
So we're like, yeah, oh, that'sgreat, that's really cool,
that'll be fun, yeah, so, beforewe wrap up, jake, what are you
(43:03):
dying to tell us?
Lorri Carey (43:06):
I'm dying to tell you that Super Milk have a live
album that we just released acouple months ago and it's the
last show that we played.
We haven't we haven't playedany other shows recently because
we've had to cancel a fewbecause of my sort of physical
situation and we kind of knewthings were heading that way.
(43:26):
So we decided to record a liveshow film.
We filmed it and recorded theaudio.
So it's available on Spotifyand Apple music and all of those
kinds of places as a live album.
It's called Lazy Teenage Boasts.
It's a full sort of live set,but it's also available on
YouTube, the whole gig filmedand it came out really well.
It kind of I think it sort ofshowcases what we're about quite
(43:50):
well in terms of our sort ofsense of humor, but also the
songs and the energy and stuff,stuff and, uh, the fun time that
we like to have when we're whenwe're playing.
But, um, yeah, yeah, so I'mdying to tell you.
Jake Popyura (44:01):
I would love to plug that out yeah, and uh, go
and and yeah okay, good, andyou'll send me the link so I can
drop that in yes, yeah, oh yeah, I'll send you the link for
sure.
Lorri Carey (44:13):
Yeah.
Jake Popyura (44:13):
Okay, good, okay, well, thank you so much for
taking time out of your holidayto chat with me.
Thanks for having me onUnfortunately there's a lot of
young people that are beingdiagnosed with ALS, and so I
talked to a lot of young ladiesbut not a lot of young men.
(44:33):
So really do appreciate you.
You know being here and sharingyour heart and sharing your
story.
Lorri Carey (44:41):
I appreciate you, yeah, taking the time to chat to
me as well, and um it's yeahit's really important, I think,
to spread as much awareness ofit as possible, especially, you
know, through open, honestconversation that doesn't sort
of shy away from um yeah,talking about difficult stuff,
and to be able to tackle topicshead on.
So, yeah, I appreciate youdoing the show in the first
(45:04):
place and sort of spreading thataware and thank you.
Jake Popyura (45:11):
thank you all for listening in to this powerful
episode with Jake.
I feel like his story is agreat reminder that, even in the
face of adversity anduncertainty and uncertainty,
(45:41):
that there's room for humor,creativity and connection.
Community, community, community.
You know, having lived with ALSfor 21 years, I have seen a lot
of different scenarios ofpeople living with ALS and, from
what I have personallywitnessed those people who find
(46:06):
a way to lean in to whateverbrings them joy and whoever
brings them joy, and whoeverbrings them joy it seems that it
really does help them in theirmental health during the most
difficult times.
(46:27):
Hey, if this conversation movedyou in some way and you can
think of someone that wouldbenefit from hearing Jake's
perspective, feel free to shareit.
I think his message can pull usso many people.
If you're listening in for thefirst time, I invite you to stay
(46:52):
in this podcast community, seewho is coming up and what they
are dying to tell you, and youcan do that by following the
(47:16):
Instagram, linkedin and TikTokall at.
I'm dying to tell you podcast.
Okay, thanks again for beinghere.
Until next time, know you areloved and not alone.
(47:37):
Thanks for listening.
Paul & Christian Carey (47:43):
Thank you for listening to our mom.
Make sure to visit her websiteat imdyingtotellyoupodcastcom,
where you'll find photos andshow notes about this episode.
If you liked the show, pleasesubscribe to the podcast and
share it with a friend.
Thank you.
Hey, I'm Paul and I'm Christian.
Welcome to.
I'm Dying to Tell youinspiration shared by our mom,
who is dying from ALS.
There is no cure for our mom oranyone else with ALS, but right
now she's on a mission to findand share stories of inspiration
Coming to you from Cincinnati,ohio.
We're happy to introduce theone lady we've both loved since
(00:29):
the first day we laid eyes onher the queen of the queen city,
our mom, your host.
Lorri Carey (00:35):
Lori, I'll tell you what.
After five years, thatintroduction does not get old.
(01:01):
Thank you guys for that.
So I'm, lori, your host of.
I'm Dying to Tell you.
Thank you for being here.
I appreciate you listening inand being a part of this very
unique, very special podcastcommunity.
(01:23):
You know, I meet so many peoplewho inspire me, so many people
that I learn from, whoillustrate courage and
resilience, and my guest todayis exactly that, and my guest
(01:45):
today is exactly that.
I am going all the way to the UK.
Well, I wish I was going allthe way there, but I'm jumping
on Zoom with Jake Papira, andhe's young he is only 39 and
(02:11):
living with ALS.
You might also hear himreferred to it as MND motor
neuron disease.
Als is the most common form ofMND.
Cenk is the creator and is inthe band Super Milk.
I'm going to check in with himand see how he is continuing to
(02:32):
do music, what his plans are ashis physical abilities change
because of ALS, and I know thatJake has also been very public
about his mental health, and soI'm super grateful that he's
willing to talk about that aswell.
(02:53):
Yeah, I'm already super proudof Jake for choosing to use his
stage to bring awareness to ALS,and also for wanting to come on
and chat with me and share withall of you about his journey.
(03:19):
Okay, let's go on over and chatwith Jake, let's go.
Okay let's go on over and chatwith Jake.
Let's go Well, thank you forgetting with me on your holiday
and everything.
So where are you right now?
Jake Popyura (03:36):
So I'm on holiday with my partner and her family
in Devon, which is kind ofsouthwest England we're all from
London but so this is quite farthe other end of the country
for us
Lorri Carey (03:44):
.
Oh, okay, okay Nice.
Do you have children?
Jake Popyura (03:52):
No, we don't.
We've actually been doing IVFthis year, so we're kind of in
the process of doing that at themoment, in the sort of early
days, so we'll see how that goes.
So it's something that we'vewanted for a while to have a
family.
We've both known each other fora really long time.
We kind of met through playingmusic and we met as friends.
(04:13):
So, you know, we were reallygood friends for a long time and
then became a couple.
When we became a couple, it was, you know, one of those things
that was sort of on the agendafrom the beginning was like okay
, do we both, you know, want afamily?
Is this something that kind ofmatches up for both of us?
And it very much was.
So, yeah, we're kind of on thatjourney at the moment.
So fingers crossed.
(04:34):
Yeah, oh, absolutely yeah.
Do you have kids yourself?
Lorri Carey (04:38):
I do.
I have two guys.
They are almost 33 and almost35.
Oh wow, yeah, they both are ona new journey, living in
downtown denver, and you knowthey're working together now.
Oh great, yeah, yeah, so it'sfun, yeah, but I really like um,
(05:00):
I like denver a lot.
Jake Popyura (05:01):
I haven't been um , haven't been for a long time.
I think the last time I wasthere was the year before COVID,
because my old band played ashow, I think, in Denver.
I think it was like at the backof a book.
We played like a little show,spent a lot of time there.
My old band from about 10, 15years ago.
(05:21):
We used to tour America a lotand Denver was one of the places
that we were most popular, sowe would always sort of come
through on tour and play to alot of people, which was really
good oh yeah, yeah, I love it.
Lorri Carey (05:35):
Actually we're going back on friday.
How old were you when you werediagnosed?
Jake Popyura (05:41):
uh 38.
It was um january last year, soI'm 39 now.
So it's yeah.
They've been sort of with itwith als officially for just
over a year and a half yeah,yeah, I was 38 when I was
diagnosed and yeah, and that was.
It was 20, 21 years you've beenyeah and I just turned 60 last
(06:03):
month and I remember my husbandhad a surprise party for me on
my 39th birthday because hethought I would not turn 40.
My partner did the same for me.
This year.
Lorri Carey (06:21):
Oh my gosh, Really.
Jake Popyura (06:23):
Yeah, she did well, I think, um, because I
mean it sounds like you've,you've had a very fortunately
like a slow progressing form,the fact that you're, you know,
obviously still here but stillcommunicating like very, you
know, like very well, um, and Ithink we've known that my, my
form of it is a little slowerthan some forms.
(06:46):
So she was making plans for my40th, thinking about what I'd
like to do, and then Jay, thedrummer in my band, said why
don't we just do it for his 39th?
Like we've been shown that lifeis too short by his diagnosis,
so we might as well like, let'sdo something, let's celebrate
this birthday and then we can dosomething else for the 40th.
(07:07):
So yeah, it was a very sweet,sort of nice surprise where I
had a bunch of my, my friendssort of all gathered around, and
so it's very nice okay, this isa sign you're diagnosed at the
same age, same, and you're gonnabe on the same path.
Lorri Carey (07:22):
I can tell, yeah, I'm gonna be on the same path
it's very, it's very cool to seethat like that you've been
living with this.
But for I mean, obviously it'sterrible, but like the fact that
it's now 21 years and far out,you know, out way outliving the,
the prognosis is fantasticabsolutely, absolutely, and tell
me about the day you knewsomething was wrong.
(07:44):
You're 38 and you know somethingis up.
Jake Popyura (07:48):
So by the time I was diagnosed, I'd been having
symptoms for about two to twoand a half years roughly.
And I think the very firstthing that I noticed that I can
sort of trace back to being asort of definitive symptom of
ALS, was like my toe.
I was laying in bed one nightand I just moved into a new
(08:10):
place, so I was kind of settlingin and I've been in there for
maybe like a couple of monthsand I was lying in bed and I
just felt my toe sort of likealmost like pulsing, like
electricity kind of movingthrough it, and I looked down at
my big toe and it was justmoving on its own, just doing
this very almost like morse codestyle, sort of like twitch, and
I was like that's yeah, that'spretty weird.
(08:32):
And because I'd I'd had anankle injury well, a couple of
injuries to the same ankle whenI was once when I kind of
slipped and fell on the stairsand um, again when I was out
jogging because I, you know, Iused to really enjoy running and
that was my main kind of way ofkeeping fit um, and I'd injured
the same ankle a few times andthere was, I was like, oh, maybe
(08:54):
there's some nerve damage therefrom that incident and there
was lots of things that ended uphappening.
That was the first thing Inoticed.
And then I I just noticed myfoot dragging a lot when I was
walking, especially if I'd hadlike a couple of like beers or
something, but my legs startedto get lazier.
I fell down the stairs in my inmy new place a couple of times,
(09:14):
but all of that I attributed tothis ankle injury.
So I, because that had happenedso close to it, I just assumed
that like, oh, this, this, thismust be why this I've suffered
some nerve damage and it just atthe time it never occurred to
me that it could potentially besomething like als or, you know,
ms, anything like that.
Um, and it was only as time wenton, like over the course of
(09:38):
like two and a half years, whenit wasn't nothing was getting
better but things were verynoticeably getting worse.
I think I gradually in my ownhead started to think.
I think this could be somethingmore serious and I think ALS is
a potential, because I alreadyhad a friend who was diagnosed.
He has familial, the SOD1 MND,and I worked with him for quite
(10:09):
a long time and uh, so I knew alittle bit about als and mnd
beforehand so it was on my radar.
So I think because I knew himand I was friends with him, that
was.
It was something that kind oftriggered the thought like maybe
this could be a possibility.
And I've got to sort of bracemyself for the fact that this
could be a possibility and I'vegot to sort of brace myself for
the fact that this could be apossibility.
Lorri Carey (10:30):
Yeah, wow.
So tell me what you thought.
What like, what was your firstthought?
Jake Popyura (10:35):
To be honest it was and I've told like a few
people this and I think peoplehave a bit of a difficulty sort
of wrapping their head around itbut it was almost like a relief
in this kind of strange way,because I'd been, I'd spent the
last two and a half years livingwith this sort of thing that I
knew was progressing in adirection that wasn't good.
Um yeah, and I kept saying likeI'm quite an anxious well,
(11:03):
quite, I'm a very I'm a veryanxious person.
I'm prone to sort of overanalysis and overthinking
everything.
Yeah, so when I was saying tomy partner, for example, and my
friends, like this doesn't feelgood, like something, I'm really
worried about this, they werevery well meaningly being like
I'm sure it's fine, like youknow, just just see how you feel
, maybe go to the physio, go tothe doctor, see what you can do.
But I'm sure it's fine, likeyou know, just just see how you
feel, maybe go to the physio, goto the doctor, see what you can
do.
But I'm sure it's, I'm sureit's just something that with
(11:24):
like rehabilitation or maybe abit of surgery, will improve.
And I just knew at the back ofmy mind like I'm not sure if
that's going to be the case.
When the neurologist said, likeyou know, have you heard of
motor neurone disease?
I like I knew it.
Oh yeah, it was.
So it was kind of like almostvalidating in a way.
(11:44):
It was like I knew, I know whatthe implications are, that it's
, that it's fatal, that it's notcurable, not treatable.
Really, um, even though I knewall of that, it was like this
real kind of rush of relief thatI finally had an answer and
could finally start to sort oflike process things in my head
and make plans to.
You know how do I feel aboutthis?
(12:05):
How am I going to deal withthis emotionally and physically
and tell people and so yeah, ina weird way it was like you know
, terrible news, but it was.
It was more welcome than havingno answers whatsoever, if that
makes sense to me it absolutelymakes sense.
Lorri Carey (12:20):
I'm the same way.
I really believe that knowledgeis power.
I, you know, have learned overthe past 21 years the importance
of being proactive and notstubborn.
Um, you know, just preparingyourself physically and mentally
(12:42):
and spiritually.
I totally, totally get that andyou know it's.
I mean, look at me, there's alot of other people that have
had ALS MND for a long time,have had ALS MND for a long time
, and so back in the day it usedto be, people thought, yeah, I
(13:05):
will die in two years in two orthree years Now, with all that
we know and with people beingproactive.
It's not always the case, soyeah, it's just.
Jake Popyura (13:18):
I mean, the thing I find wildest that I still
can't really get my head aroundand it just it, it floors me
every time I think about it isjust how variable it is from
person to person.
Like it's incredible, like um,I think I mentioned to you
before, uh, when we were firsttalking.
I said that I'm I know a coupleof the per als yeah, that story
people, so I got to know someof them by being invited to one
(13:39):
of their group chats, that sort.
I said that I know a couple ofthe per ALS story people, so I
got to know some of them bybeing invited to one of their
group chats.
That's sort of open to peopleof all gender identities as
opposed to just women, and Ithink there's close to 100
people in that group now andit's been a great sort of
support system and I've got tomake some kind of good friends
(14:02):
in there that I haven't even metbecause it's all just kind of
on, you know, like virtual, andwe're all in different parts of
the country.
But just seeing how different itis in that group, um, from
person to person, there's somepeople that are.
They've been living with italready for a few years and
they're still walking around.
They're still, you know,they've got full use of a lot of
(14:23):
things.
There's people that were onlydiagnosed last year, that are
already, you know, very sort offar down the path and have kind
of lost their ability to speak,and just it's fascinating and
also terrifying to me, just howit feels like there's no rule of
thumb.
Like there's you know, there'sthe shared symptoms, yeah, and
(14:45):
there's this kind of.
There's lots of things thateveryone can relate to, who has
it, but the actual sort ofjourney time of it and prognosis
and all this kind of stuff isso unbelievably different.
Lorri Carey (14:57):
Yeah, yeah, it is for sure, and I'm so happy that
you've got connected with herA-list story.
I know many of them and I'vetalked to many of them on here
and I always think of them asthe perfect definition of
community.
You know, I know they're therefor each other every single day
(15:19):
in the chat and they are able toexpress a lot of their feelings
that you know maybe they can'tto their caregiver or their
spouse or their partner, and Ithink that's really, really
important.
And you know, being young andhaving a terminal disease that
(15:45):
doesn't have a care and has verylittle effective treatments can
blow your mind, obviously.
So you know, talking aboutcommunity and your van Super
Milk tell me about when you hadto tell your van family.
(16:06):
It was probably the hardestpart of the whole thing, I think
immediately after I wasdiagnosed I actually felt fine
and I felt sort of immediatelyfollowing my diagnosis and sort
of six months afterwards I feltprobably the most calm and at
peace and just zen that I thinkI've ever felt in my whole life.
It just had this very strangeeffect where I was like I felt
(16:29):
like well, you know what?
I've lived a very I've beenfortunate enough to live an
incredibly good, very full, verysort of adventure packed life.
So I'm very grateful for thatpart of it.
And now this is just somethingthat I have to deal with.
So the only thing that I wasreally worried about and caused
me quite a lot of anguish washow am I going to tell everyone
like how, how is that going toaffect them?
(16:50):
And particularly like myparents I was, I was really the
most difficult thing.
Um, the band.
I mean they'd known for quite awhile that uh, they'd sort of
seen me starting to um strugglewith like walking and and all
kinds of different things, likeuh m the who's one of the
guitarists in in super milk.
(17:12):
She, she'd been with me acouple of times when I'd fallen
down the stairs.
There was there was one timewhere she stayed over and I fell
down the stairs.
So she was already kind of, andeven you know, like about half
a year before I got diagnosed,when we were playing, we were on
tour and every show I basicallyhad to hold one of their hands
in order to get up onto thestage.
So like because because venuesfor shows, like clubs, aren't
(17:35):
designed for anyone with anykind of access oh, yeah, right,
whether you were a patron or aperformer, especially the little
narrow staircases with no sidesthat you have to kind of step
up onto in order to kind of getup onto the stage.
So I was having to holdpeople's hands and so but I
think, even though it it itwasn't really a shock to me,
(17:57):
when I got, you know, diagnosed,I was like, oh, obviously
that's what it is, okay, andthen I kind of told them, but I
think it was a shock to thembecause I think in their heads
they were like, oh, this is just, this is something that he's
gonna, you know, he'll, he'llfigure out what it is.
And then there's, there'streatment and it will be fine or
, you know, it's, I think, atworst maybe like MS, you know
(18:17):
that kind of thing.
So when I told them, yeah, Ithink there was sort of mixed
reactions.
But they've been the three ofthem, so Em and Charlie and Jay,
who are my band members they'vebeen just the most supportive.
I couldn't ask for better sortof like friends and band members
, like they've been fantastic.
(18:38):
And about a month after I gotdiagnosed, we went in to record
our third album.
So you know, it was all written, it was all demoed and we were
kind of like, right, okay, well,let's, you know, time is short.
You know, nothing lasts forever.
This is sort of proof of that.
Let's, let's make the most ofthis before.
It's not going to be, but, youknow, before there's a chance it
might not be possible anymore.
So we had a very full andexciting year as a band, kind of
(19:01):
making and releasing an albumand then touring all over the
place and and kind of spending alot of time together and just
laughing a lot.
And there's been times wherewe've played venues where
there's no stairs up whatsoever.
So like, thankfully, all threeof them are very physically
strong and very kind of likeable-bodied, all kind of like,
you know, pretty fit.
Charlie is a, is a wrestler, asort of pro wrestler in her
(19:24):
spare time or kind of does likea lot of that kind of thing.
So they would all three of themwould like physically lift me
up onto the stage, um, at someof the shows and uh, you know
all that kind of stuff like getme in.
When I needed to get in and outof the van when we were on tour
.
They would be kind of likelifting me up and and um, so
yeah, it was just the mostunderstanding, patient and and
(19:46):
sort of like lovely people thatI could hope to be, you know,
surrounded by, which is greatyeah, absolutely, and did you
find that they treated you thesame?
Jake Popyura (19:56):
I mean, besides having to help you like, do they
just treat you the same as theyalways have?
Lorri Carey (20:03):
yeah, I would say so.
I mean the thing, somethingthat I feel like has really
helped in my journey is I'vealways had a very dark sense of
humor, um, and a very sort of umlike the four of us in the band
and our kind of extended groupof friends, all share a very
sort of silly, very, very sillysort of sense of humor.
We're all like capable of makingeach other laugh a lot, which
(20:27):
is exactly what you sort of wantfrom a group of friends, but
the way that we've all been ableto laugh at this has been
really great, just likeconstantly making fun of it.
Because, you know, when I foundout that's what I had, I sort
sort of thought, you know whatlike there's a lot of humor to
be found here, because it's likeit's an inherently absurd
situation to be in.
(20:48):
So, even though it's likedevastating and it's life
altering and it's fatal, there'sso much comedy to be mined from
this situation.
We're just constantly jokingabout it.
I'm constantly, you know,cracking quite dark jokes at my
own expense and I think at firstthey didn't want to overstep,
but then, as time yeah, veryquickly, they sort of, you know,
(21:10):
relaxed into the fact andeveryone, everyone just makes
fun of it and it's, it's really,it's really great.
I wouldn't have that any otherway, to be honest.
Jake Popyura (21:19):
But that's great.
They're following your leadthere.
And when you mentioned thathumor and alice can go together,
the first person I think aboutis brooke evie, also to cope,
you know, with her journey.
Lorri Carey (21:50):
Yeah, definitely, I don't know Brooke very well,
but she was the reason why I wasinvited into her ALS sort of
universe in the first place inthe group chat, because I
actually, you know, shortlyafter I got diagnosed, I was
kind of doing more research andI found her Instagram and I saw
a couple of interviews with heron.
(22:10):
I think it was probably GoodMorning America or one of those
talk shows where she wasexplaining her journey and how
she came to be diagnosed in thefirst place and find out that
and it sounded very similar tomine.
But then, seeing how sheapproached it with such humor
and making fun of it and almostlike lampooning it, like
(22:30):
laughing at it, going like youknow you're, you're not going to
take my spirit, kind of thing,yeah, yeah, I actually sent her
an email and was like I justwant to say like thank you for
this.
It's me and my partner saw yourvideos and it made us laugh and
like made us feel a lot betterabout the whole thing and she
was like, oh well, there's acommunity over here if you want
to come and join it.
(22:50):
So it's very.
I'm thankful to her connectingme with a lot of people I sort
of know today.
Jake Popyura (22:55):
it's very good yeah, oh, that's great, perfect.
Um, you mentioned that afteryou were diagnosed, you were
experiencing this kind of zenfeeling, and I've read that
you've talked about mentalhealth and your mental health
(23:17):
and I feel you know that's oneof the areas that you know we
don't talk about enough, evenwith ALS, so can you tell me a
little bit about that in yourpersonal experience?
Lorri Carey (23:30):
Um, so I was diagnosed with bipolar type two
when I was just after I turned30, I think, after a sort of
lifetime of having sort ofmental health struggles and not
really having words to tonecessarily to them or really be
able to describe to people whatI was feeling.
Um, and it's, I mean, it's beenvery turbulent and it's been a
(23:55):
real.
It's been a real challenge.
Having, you know, a sort ofphysical health condition and
also a mental health conditionand trying to just keep afloat
during this, you know, keep themsort of in check with each
other and just just to stayabove water is is sort of daily
challenge.
I mean, you know, I think foranyone living with als mental
(24:17):
health, there's going to bestruggles, there's going to be
real challenges and it's a sortof daily battle, regardless of
whether you have any sort ofhistory of mental illness or
anything.
But yeah, strangely, the sixmonths following my diagnosis it
was like I'd never felt so calmand accepting.
(24:38):
I'd never felt so calm andaccepting, but I think part of
that was because I still had somuch, there was still so much
function that I had then whichI've now lost, like I was still
able to, with a few sort ofalterations and adaptations to
my stage setup, I was still ableto play shows, I was still able
(24:59):
to sort of walk around, I wasstill able to, like, climb
stairs with the you know, aslong as it had the railing and I
had a cane, I was still able toget up and down a lot of stairs
, that kind of thing.
But I think around the time,this sort of time last year, I
was made redundant as well.
I was laid off from my job.
So I think I was just aboutholding on to sanity after being
(25:19):
diagnosed with this reallylife-altering thing and then all
of a sudden the job that I hadI'd had for quite a long time,
were like, oh sorry, we've gotto let you go.
And that was.
It was kind of around that timethat I started to struggle
quite a bit because it wasalmost like I'd been thrown a
bit off course by this diagnosis.
But then there was this quitevital part of my life which is,
(25:40):
you know, like a steady incomeand a kind of anchoring that was
also taken away, and also thendealing with the feelings of
just feeling incredibly hurt andlet down and sort of almost
betrayed by these people who I'dcome to sort of trust that I
worked with, these people, whoI'd come to sort of trust, um,
(26:03):
that I worked with, and just areal feeling of I don't know if
I can swear on this podcast, buta real sort of feeling of fuck
you like, why, why have you donethis, like not even six months
after being?
you know, it was almost likethere was a kind of like.
You know, I was flying a planeand then the als diagnosis had
kind of flown it off balance,but I was kind of like gliding
in this really kind of nicepeaceful state and then the
(26:25):
redundancy was like one of theengines failing and it just
really tipped me off balance andI just kind of went careering
to the ground a little bit.
So the period then and now hasbeen, you know, there's been
lots of mental health challengesand it's's, it's.
it's been quite turbulent and Ithink my partner, sophie, is the
one person who sort of seesthat day in, day out, because I
(26:47):
feel like I'm able to sort of,for the most part, put on a
brave face in front of myfriends and my colleagues now
that I've got you know anotherjob.
But she's the.
She's the one person who'sthere in the trenches, if you
like, kind of seeing it everyday, and she, she's been there
when I've been at my lowest andit's been, you know, literally
not being able to get myself upoff the floor and just being
(27:10):
completely spent of energy andjust kind of feeling like I
don't know what to do, I don'tknow how, you know how, to
proceed from here.
So I mean, I'm still here so itcan't be like you have these
tools and these, thesetechniques, and you have a
support network, hopefully, andyou have people to be able to,
(27:31):
you know, physically andspiritually and emotionally,
pick you back up, which is whichI'm very lucky to have, and if
I didn't have that, I don't knowwhat kind of position I'd be in
, to be honest, but the factthat I do have that is, you know
, I can't be thankful enough forthat.
Jake Popyura (27:47):
Yeah yeah, yeah, it's a challenge.
Yeah, besides having Sophie anda community that you can trust
and you can rely on, is thereanything that you would suggest
to someone else that was dealingwith some heavy mental illness
(28:11):
and ALS together?
Lorri Carey (28:14):
I would say find any way that you can to keep
busy, whether that be yeahsomething to focus on, yeah,
something else to focus on, Ishould say.
Yeah, exactly.
Jake Popyura (28:30):
Is there anything else?
Is it?
Lorri Carey (28:33):
Coffee, lots and lots of drinking in an
inordinate amount, an inordinateamount of coffee, I think has
really helped.
Um, but I, I sort of took abreak from drinking alcohol just
before I was diagnosed.
So, with the absence of alcohol,coffee has sort of taken up
(28:55):
that space where alcohol used toexist and I've I mean, I was
saying that sort of jokingly,but yeah, just being able to
find pleasure in whatever youcan and it's very, very cliche
to say, but like you know, likethe small things that make you
smile and and kind of channel asmuch energy as you can into
(29:16):
into those things, or to kind oflike really savor them, whether
that be like a nice thing toeat or drink or some kind of
hobby or some kind of placewhere you can get out to if you
can get out, yeah, trying tokeep your mind busy, whether
that's like a like an actualhobby or something that you like
to immerse yourself in, whetherthat be like fiction and
(29:37):
literature or films or that kindof thing, or just like
community.
You know there's lots of thingsthat I hate about the internet,
but it's really brings peopletogether that aren't able to
communicate or travel or reallymove around in traditional ways
and that's where the ALScommunity I think it's really
like, flourished and and thefact that I'm in a group chat
(29:59):
with people who are all over theworld you know, mostly in
america, that I'll probablynever meet in person, but the
fact that we're all able tocommunicate with each other and
make each other laugh and offersupport and stuff like that is
really fantastic.
Jake Popyura (30:14):
Um yeah, I guess like community.
Keep busy and lots of coffeeyeah, just continuing to do what
brings you joy, like that's key, and so, thinking about that, I
want you to tell me about thevan, I want you to tell me about
(30:35):
your music and what you planfor the future, because that is
your passion, that is your joy.
Lorri Carey (30:41):
I feel like it's a transitional period right now
where the whole of last yearfollowing my diagnosis was
basically we already had analbum written.
I'd kind of finished writing itand demoing it and stuff a
couple of months before mydiagnosis formally so and I was
still able to play, um, all theinstruments I was still able to
(31:04):
sort of drum to to a certainextent.
So I was able to kind of makethese demos for the band to be
able to listen to and go likeokay, these are, this is how the
song is gonna go.
Let's, let's rehearse this.
And then, when I was diagnosed,I basically let's, let's
rehearse this.
And then, when I was diagnosed,I basically it was like right,
let's do this, because I don'tknow how much longer I'm going
to be able to like, I don't knowhow my physical condition is
(31:24):
going to deteriorate, like atwhat rate it's going to
deteriorate, when I'm going tostart to lose function.
So last year was more aboutlike let's just kind of throw
ourselves into it, record thisalbum.
Year was more about like let'sjust kind of throw ourselves
into it, record this album,let's go on tour, let's, let's
really make the most of um thistime.
Yeah, and now, this year hasbeen more coming to terms with
(31:45):
the fact that I've lost theability essentially to play
instruments in a traditional wayso I was, I was able to kind of
get through all the way to theend of last year.
And now is like a very differentstory.
I can't really play guitaranymore.
Drums that I've been playing,you know I was.
I started playing drums when Iwas really young and played it,
(32:06):
you know, all throughout my lifeand and I have to I had to give
that up because it's just notpossible.
Um, so now it feels like atransitional period, like, um,
of trying to figure out whatcomes next whether the band
takes a backseat and makingmusic generally takes a backseat
and I switch focus to somethingelse.
Or whether I sort of stubbornlyput my foot down and find some
(32:28):
way to continue making it at thesame pace that I used to, with
different methods.
Whether it's just all inside acomputer and sequencing things,
um, whether we stop playing gigsall together and just become a
sort of studio band, or whetherwe do the occasion, occasional
gig, it's.
It's like there's all of thesesort of open-ended questions.
At the moment I'm still verymuch in the in the midst of
(32:52):
trying to to figure out, butwhat I do know for certain is
that music will always be partof my life, um, and I'll always
be thinking, regardless ofwhether I can kind of like
communicate it in a traditionalway, like I used to, I'll always
, I'll always be thinking ofideas for songs and lyrics and
(33:14):
melodies and building structuresin my head, and I don't think
that's something that I canswitch off.
So I've got a feeling it'sgoing to very much continue in
some form, but what that formwill take is unknown at the
moment.
Jake Popyura (33:29):
I think yeah, yeah, are you a full-time
musician?
Lorri Carey (33:33):
no, I'm a full-time software engineer, um, from for
my day job.
Okay, I used to balance it outa bit more.
So I would sort of balance thatout with the music and they
would sort of make each othercomplement each other and make
them make each other work.
But now it's it's sort offull-time, just because that's.
Yeah, that's where the sort ofmoney is, that's what's paying
my bills, and especially now Ican't really do um the music
(33:54):
side of things as sort of moneyis, that's what's paying my
bills, and especially now Ican't really do um the music
side of things as sort ofintensely and as full-on as I
used to be able to.
That's the focus has shiftedthere, for money reasons anyway.
Jake Popyura (34:05):
But yeah, yeah, yeah.
What is something that ALS hastaught you?
Lorri Carey (34:14):
um, it's going to sound very cliche, but we're
only here for an insanely smallamount of time.
It's something that als hastaught me, but sometimes I'm
very resistant to learn thelesson, and that's, uh, the
small things don't matter, likeum, the things, the things that
you worry about on a regularbasis, especially if you're a
(34:35):
kind of anxious person who'sprone to overthinking like a lot
of the stuff that you spendtime thinking about whether that
be someone who's pissed you offearlier that day, someone who's
kind of, like you know, lookedat you the wrong way, or kind of
, like you know, worrying ifyou've sort of hurt someone's
feelings, or being pissed off atsomeone because they've hurt
your feelings, worrying ifyou've sort of hurt someone's
feelings or being pissed off atsomeone because they've hurt
(34:55):
your feelings Largely, it's allstuff that, in the grand scheme
of things, doesn't matter thatmuch.
And the amount of stuff, theamount of time that we spend
thinking and sort of likeruminating on these really small
things, you kind of realize,when ALS has sort of taught me,
that those things don'tultimately matter.
In fact, that is sort of like awaste of energy if you kind of
(35:23):
get.
Whenever I get angry these days,it leaves me feeling very
physically exhausted.
So it's yeah, it's better totry not to get wound up or sort
of angry, or you know, that'sthat's going to provide me more
energy to get through the dayand actually spend it doing
things that I want to do.
Yeah, yeah, and not just kindof in my head.
The lesson is one that Istruggle to employ in my
day-to-day life.
You know, you can learnsomething and you can yeah, you
(35:46):
can struggle to sort ofimplement it, but it is
definitely a lesson that's worthpaying attention to, I think
paying attention to.
I think is there something thatyou want other people to know
about als, or about being youngliving with a terminal illness
that they might not know I thinkwhat I'd like people to to know
(36:09):
about it is that you have toconstantly adapt, and that's the
thing that I found sort ofimpressive about everyone who
has ALS is that the adaptabilityof people who have it is really
incredible.
And I don't know, I suppose, todrive home the fact that it is a
(36:29):
progressive disease, because Ithink people get used to you one
way and then they think like,oh, that's just how they are now
, like they've lost thisfunction, they're in a
wheelchair, but they can stilltalk, still do this, they can
still get around, or you know,they'll be fine for a long time.
And then, if you don't see themfor a long time, I think they
(36:50):
get quite shocked if you've lostlike a lot more function in
that space of time.
But, yeah, shocked if you'velost like a a lot more function
in that space of time.
But yeah, yeah, um, I think theword progressive doesn't often
land with people quite as muchas um, it does for the people
who are kind of going through it, because there's, there's no
one who's, uh, more of an expertabout your body than you, um,
(37:13):
even though you might not belike a scientist or a kind of,
you know, like a doctor, theonly single person in the entire
world who knows how your bodyis supposed to feel from the
inside.
Um, yeah, and when you can feelthings starting to go, whether
that be your arms, your legs,your voice, you know something's
not right.
This would lead me on to say thething that I would like people
(37:36):
to to know yeah is to sort oftrust the people who are going
through it, um, and when theytell you that something has
changed in them and andsomething doesn't feel right or
uh, listen to that.
Don't, don't just assume thatthey're kind of overthinking it.
Because I think beforehand even, um, before I got diagnosed,
(37:58):
when my friends were sort ofvery well meaningly being like,
oh, I'm sure it's nothing.
Yeah, it was something.
So it kind of goes to show thatlike you're your own biggest
expert about your own body?
I think is, but it may be likea way of summing that up.
Jake Popyura (38:14):
No, I love, love, love that.
I love that because you canfeel isolated, because someone
just doesn't know and they justdon't understand.
And there are things that arehappening to your body that
other people cannot see, theycannot feel.
You know, for me my diaphragmis pretty weak and I can walk,
(38:41):
but I've been at 40% for youknow like four or five years,
and people don't know that.
So there are parts of thedisease that you know.
It's just not real obvious toother people.
So I like that.
No, that's great.
I really really appreciate that.
So tell me a little bit aboutyour band as far as the music,
(39:06):
and I'll put in the show notes alink to your music.
I think that's really cool Tomy listeners.
My show notes are available onthe website and the Facebook
page, both at I'm Dying to Tellyou podcast.
Yeah.
Lorri Carey (39:25):
It's difficult to explain.
It's very sort of Americaninspired for the most part and
drawing a lot of influence fromthe 90s, which is sort of the
time period in which I grew up.
I was born in 86.
I was, like introduced to musicwhen I was very, very young and
I was starting to sort of buyit kind of consciously, like
(39:47):
listen to albums and get intobands when I was about six or
seven.
So I felt that the early, wellthe whole period of the nineties
is a is a period of time whereI draw probably the most
influence from in terms of, like, my tastes for things.
So yeah, musically it's sort oflike indie rock and alternative
and grunge of the 90s.
(40:07):
Yeah.
Especially like American bands,but then also little bits of
sort of post-punk like a newwave and stuff like the B-52s
and Devo and bands of that sortof era XTC.
But Super Milk itself hasexisted since 2017.
(40:27):
So eight years, eight years oldthis year as a project.
It started out just as me doingeverything, so I've been playing
sort of multiple instrumentssince I was really young and
Super Milk at the beginning wasjust me recording everything.
So it was like a one man bandtype thing of you know bass,
drums, guitar, vocals,synthesizers, and I recorded a
(40:48):
couple of albums like that andthen we eventually turned it
into a full band that playedlive with some of my friends.
My partner, sophie, was one ofthe original members, um, and
then she took a step back tofocus on other things.
But, uh, we've been a full bandand playing live now for about
three and a half years, I think.
Um, nice nice.
(41:09):
We've got a couple of new songsthat we're recording at the end
of the year, um, so that'll beinteresting to see how that sort
of looks.
Uh, now, with not being able tosort of play instruments in the
traditional sense, how I'mgoing to communicate the stuff
that I've written to the otherguys.
And fortunately, at the momentmy, my voice is still quite
strong.
I haven't got any sort of bulba, um, so I can still sing pretty
(41:31):
full voice.
So I want to make the most ofthat, as you know, for as long
as I can, uh, but yeah, we'llsee, see how it pans out yeah,
good, good luck.
Jake Popyura (41:42):
Do you know my friend john driscoll hopkins and
the zach brown fan?
Lorri Carey (41:48):
I don't know him personally, but I know of him
through the community.
Jake Popyura (41:52):
Yeah, he's still.
He's still playing.
Right, he is still playing.
Yeah, so I want to say it wasdecember of 2021.
I think he was diagnosed.
He noticed because he couldn'tlike double time on the guitar
as fast as he should and he waslike man, something's wrong.
(42:15):
And then this was like rightbefore coven and they had a
break from coven, then came backand like guys, there's
something going on here yeahhe's still hanging in there
doing good, so yeah that's goodto hear.
Lorri Carey (42:29):
I've seen some clips of him uh, being
interviewed and a few clips ofhim playing live and stuff and
it's really good.
It's great that he's using hisplatform to bring awareness to
it and stuff as well.
Jake Popyura (42:39):
Yeah, yeah, I think they've raised almost $5
million for analyst research.
Yeah, we actually got ticketsyesterday, ticket in the sphere
in Vegas, to watch him at thesphere in December.
So we're like, yeah, oh, that'sgreat, that's really cool,
that'll be fun, yeah, so, beforewe wrap up, jake, what are you
(43:03):
dying to tell us?
Lorri Carey (43:06):
I'm dying to tell you that Super Milk have a live
album that we just released acouple months ago and it's the
last show that we played.
We haven't we haven't playedany other shows recently because
we've had to cancel a fewbecause of my sort of physical
situation and we kind of knewthings were heading that way.
(43:26):
So we decided to record a liveshow film.
We filmed it and recorded theaudio.
So it's available on Spotifyand Apple music and all of those
kinds of places as a live album.
It's called Lazy Teenage Boasts.
It's a full sort of live set,but it's also available on
YouTube, the whole gig filmedand it came out really well.
It kind of I think it sort ofshowcases what we're about quite
(43:50):
well in terms of our sort ofsense of humor, but also the
songs and the energy and stuff,stuff and, uh, the fun time that
we like to have when we're whenwe're playing.
But, um, yeah, yeah, so I'mdying to tell you.
Jake Popyura (44:01):
I would love to plug that out yeah, and uh, go
and and yeah okay, good, andyou'll send me the link so I can
drop that in yes, yeah, oh yeah, I'll send you the link for
sure.
Lorri Carey (44:13):
Yeah.
Jake Popyura (44:13):
Okay, good, okay, well, thank you so much for
taking time out of your holidayto chat with me.
Thanks for having me onUnfortunately there's a lot of
young people that are beingdiagnosed with ALS, and so I
talked to a lot of young ladiesbut not a lot of young men.
(44:33):
So really do appreciate you.
You know being here and sharingyour heart and sharing your
story.
Lorri Carey (44:41):
I appreciate you, yeah, taking the time to chat to
me as well, and um it's yeahit's really important, I think,
to spread as much awareness ofit as possible, especially, you
know, through open, honestconversation that doesn't sort
of shy away from um yeah,talking about difficult stuff,
and to be able to tackle topicshead on.
So, yeah, I appreciate youdoing the show in the first
(45:04):
place and sort of spreading thataware and thank you.
Jake Popyura (45:11):
thank you all for listening in to this powerful
episode with Jake.
I feel like his story is agreat reminder that, even in the
face of adversity anduncertainty and uncertainty,
(45:41):
that there's room for humor,creativity and connection.
Community, community, community.
You know, having lived with ALSfor 21 years, I have seen a lot
of different scenarios ofpeople living with ALS and, from
what I have personallywitnessed those people who find
(46:06):
a way to lean in to whateverbrings them joy and whoever
brings them joy, and whoeverbrings them joy it seems that it
really does help them in theirmental health during the most
difficult times.
(46:27):
Hey, if this conversation movedyou in some way and you can
think of someone that wouldbenefit from hearing Jake's
perspective, feel free to shareit.
I think his message can pull usso many people.
If you're listening in for thefirst time, I invite you to stay
(46:52):
in this podcast community, seewho is coming up and what they
are dying to tell you, and youcan do that by following the
(47:16):
Instagram, linkedin and TikTokall at.
I'm dying to tell you podcast.
Okay, thanks again for beinghere.
Until next time, know you areloved and not alone.
(47:37):
Thanks for listening.
Paul & Christian Carey (47:43):
Thank you for listening to our mom.
Make sure to visit her websiteat imdyingtotellyoupodcastcom,
where you'll find photos andshow notes about this episode.
If you liked the show, pleasesubscribe to the podcast and
share it with a friend.
Thank you.
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