September 23, 2025 • 59 mins
In this Happy Hour Chat, I talk with Tina Cascio, Mira Hudson and Kelly McGinn, all young women who share their journey living with ALS after being diagnosed in their 20's and 30's. John Driskell Hopkins of Zac Brown Band who is also battling ALS joins the conversation too. We discuss finding community, maintaining independence, and embracing joy despite a terminal diagnosis. Tina has familial ALS with the SOD1 mutation and has been living with it for nearly five years. Kelly was diagnosed two years ago and is balancing motherhood and ALS. Mira had symptoms since age 14 but was misdiagnosed for years before her ALS diagnosis at 24. John (Hop) continues performing with Zac Brown Band and will play at the Sphere in Las Vegas in December. The ladies share their fun experience attending a retreat in Cape Cod with 40 other Her ALS Story members. I love how they each emphasize the importance of community over isolation when battling this terminal illness. Follow Her ALS Story and witness the incredible strength of this group. Join John Driskell Hopkins for Harmony for Hope on October 18th in Atlanta, a fundraising gala for ALS research featuring world-class singer-songwriters in an intimate format. Thanks for listening and sharing with a friend. Hugs, Lorri
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_00 (00:08):
Hey, I'm Paul.
SPEAKER_02 (00:10):
And I'm Christian.
SPEAKER_00 (00:11):
Welcome to I'm Dying to Tell You.
Inspiration shared by our momwho is dying from ALS.
SPEAKER_02 (00:16):
There's no cure for our mom or anyone else with ALS.
But right now, she's on amission to find and share
stories of inspiration.
SPEAKER_00 (00:23):
Coming to you from Cincinnati, Ohio, we're happy to
introduce the one lady we'veboth loved since the first day
we laid eyes on her.
The Queen of the Queen City, ourmom, your host, Lori.
SPEAKER_04 (00:50):
Hi, I'm Lori, your host of I'm Dying to Tell You.
Thank you for being here.
If you have listened in before,thank you for coming back.
And if you are a brand newlistener, welcome, welcome,
(01:10):
welcome.
I'm so happy that you're here aswell.
If you've been listening in, orif you're a part of the ALS
community, you probably knowabout her ALS story.
It is a group of young women whohave been diagnosed with ALS,
(01:30):
most of them before the age of35.
Their spirit, their community isreally something special and
simply a lifeline for so many ofthese young women being young
and living with a terminalillness.
(01:53):
Every one of them inspires me insome way.
And so today I'm really happy tobe sitting down with a few of
them.
They recently got together andwent on a trip.
So I can't wait to hear aboutthat.
And we're just gonna catch up.
(02:15):
This is my very first edition ofa happy hour chat design just to
catch up with each other, asksome questions, see what's going
on, and really illustrate howeven living with ALS, you can
have joy and laughter and fun inyour life.
(02:38):
And to mix it up today, I havesomeone jumping in to surprise
the ladies and be a part of theconversation.
So I am super grateful for thatas well.
So my guest, three young ladies,diagnosed in their 20s and their
(02:59):
30s, all active members of herALS story.
And I'm gonna let them introducethemselves.
But um, I'm gonna be talking toKelly McGinn, Tina Cassio, and
Mira Hudson.
(03:19):
So I'm gonna go ahead and jumpon Zoom, connect with the
ladies, bring in the surpriseco-host, and get this happy hour
started.
Okay, let's go.
Hello.
Hello, hello.
Nice to meet you, Tina.
(03:42):
Hi, Mira.
Good to see you again.
Good to see you again, too.
Yes my husband made me a little,a little drink.
A little frozen margarita.
Yeah.
So this is uh the first editionof a happy hour chat.
(04:04):
And I actually have another herand list story member as a
surprise co-host.
So I love that.
SPEAKER_07 (04:17):
Surprise co-host?
Oh my god!
SPEAKER_06 (04:26):
That's amazing.
SPEAKER_07 (04:27):
Oh my god, that's great.
SPEAKER_04 (04:31):
Hi, hey Chicos and our honorary member of her ALS
story, love that, John DrescellHopkins.
Hey, thank you for coming on.
SPEAKER_05 (04:48):
I'm happy to be here.
Thank you for inviting me.
SPEAKER_04 (04:52):
Yeah, and how did you get to be an honorary member
of this special club?
SPEAKER_05 (05:00):
I don't remember the first time I jumped on a her ALS
meeting, but it was probably ayear ago or more.
And then we go and got a hangoutin um New Orleans at the Glee
Single.
SPEAKER_04 (05:20):
Oh, okay, okay.
SPEAKER_05 (05:23):
That's when I was initiated.
SPEAKER_04 (05:29):
Uh shouldn't we even ask about the initiation
process?
Or that's probably top secret,right?
SPEAKER_05 (05:36):
I've still got the burn marks.
SPEAKER_04 (05:38):
Oh.
SPEAKER_06 (05:43):
I think the initiation process is just a
shot of tequila, isn't it?
It is.
SPEAKER_05 (05:49):
So you met that mine was on fire.
SPEAKER_06 (05:55):
Oh.
SPEAKER_05 (05:56):
And that's when I got burned.
Oh.
SPEAKER_04 (06:00):
Oh my gosh.
Hey, let's introduce everyone isintroduced themselves real
quick.
SPEAKER_05 (06:07):
Full disclosure.
You guys are part of my up on acure documentary right now.
We have a camera crew over here.
SPEAKER_04 (06:23):
Oh, well, hey.
SPEAKER_05 (06:25):
Anyway, let us know when the pillow fighting starts.
SPEAKER_04 (06:32):
I'm gonna pivot and uh make sure you capture that.
Hey Tina, why don't you goahead?
SPEAKER_08 (06:39):
So I'm Tina.
I'm from Chicago, Illinois.
Diagnosed with familial ALS in2020.
Um, I'm the third in my family.
Just still living life, having agood time.
Every moment of every day.
Yeah.
SPEAKER_05 (06:59):
So familial, I mean, are you SOD1?
SPEAKER_08 (07:05):
And and I won't have to person and it gave me spinal
meningitis and almost killed me.
I'm unfortunately the smallpercentage that it doesn't work
for.
SPEAKER_05 (07:18):
I mean, the smallest percentage of the smallest
percentage can even use it, andthen you're an even smaller
percentage that can.
Yes.
Aren't I that lucky?
I mean I was gonna say I nevermet an SOD1 until you.
SPEAKER_08 (07:46):
Well, it is a great pleasure to be your first.
SPEAKER_04 (07:52):
You're always gonna be special.
Uh Kelly.
SPEAKER_05 (07:56):
How do you feel otherwise, Tina?
I mean, I mean, it's myimpression of familial cases
that they are generally fastprogressing, but you look
amazing.
SPEAKER_08 (08:10):
My mom lived for 12 years and had a smile on her
face on her last day.
My cousin only lasted 18 months.
So I think it has a lot to dowith your mindset.
I've always been a verypositive, don't worry about
(08:30):
problems that I can't fix typeof person.
And I think that's in my favor.
Thank God.
I mean, going on five years,December it'll be five years,
and I'm still walking, I'm stilltalking, I'm still driving,
unfortunately, no longerworking.
I was a nurse, and once yourhands don't want to do things
(08:54):
anymore, it's it's hard tocontinue doing that.
SPEAKER_05 (08:57):
But throw them to my guitars.
SPEAKER_08 (09:01):
Yes.
The guitars definitely would bevery difficult without the use
of your fingers.
SPEAKER_05 (09:09):
Well, you look amazing and your fingers look
strong, and I know that my motorskills have suffered, but I'm
still able to controleverything.
I'm still able to grab my wife'sbooty.
(09:29):
That's the most important part.
I can live for a long time ifthat's the case.
SPEAKER_06 (09:43):
All right.
Um, so I'm from Massachusetts,uh South Shore near like between
Plymouth and Boston.
SPEAKER_05 (09:50):
What are you doing Saturday?
SPEAKER_06 (09:52):
Uh no plants.
Why you were out?
Oh, really?
SPEAKER_05 (10:00):
Okay.
And we're having a fundraiser.
It's called Friend Away.
We have played, I'm sorry tointerrupt.
SPEAKER_04 (10:10):
No, yeah, that was interesting.
SPEAKER_05 (10:12):
Yeah, it's on Saturday.
SPEAKER_04 (10:14):
Okay.
I'll look up the episode.
What kind of event is a friend?
Are you saying friend away?
SPEAKER_05 (10:20):
Yeah, friendway, like Fenway Park.
SPEAKER_04 (10:23):
Oh, friendway.
SPEAKER_05 (10:26):
We had a gig in Fenway Park in 22 and 23.
And right after that, we put ona fundraiser in Ipswich at our
friend's renovated barn.
Cool.
SPEAKER_06 (10:44):
Okay.
I will look up this information.
SPEAKER_05 (10:47):
Um, I don't know that it's public knowledge.
SPEAKER_06 (10:52):
Well, then you can send it to me.
SPEAKER_05 (10:55):
I'll put my number in the chat.
SPEAKER_06 (10:58):
Okay, cool.
Thanks.
Sounds good.
Um, so yeah, I've been diagnosedfor two and a half years, but
I'm like symptom-wise threeyears.
My left arm is completelynon-functional, arm and hand.
(11:19):
It started in the hand.
Um, have a little bit of leftfoot drop and starting to have
um some weakness in my rightshoulder, which I am refusing to
admit is happening pretty much.
Um, but it's becoming, it'sbecoming apparent.
Um, but I'm still doing all thethings.
I'm still working.
(11:40):
Told them today that my days ofcoming into the office are
numbered.
It's getting harder to just likelift things into the car to get
my computer there andeverything.
But I have a nine-year-olddaughter, um, live with her and
my fiance.
We just keep doing all thethings.
Yeah.
It's all everything's a littlebit harder, a little bit slower
(12:02):
to get ready and things likethat.
My daughter's gonna help me pullmy hair back.
Adam is trying really hard tohelp with that.
He's not quite as good as sheis, but he's learning.
So I appreciate it.
SPEAKER_05 (12:15):
Are you at the Haley Center?
SPEAKER_06 (12:17):
Yes.
SPEAKER_05 (12:18):
Me too.
SPEAKER_06 (12:19):
Oh, yeah.
I see Dr.
Ho.
SPEAKER_05 (12:21):
Um, I see James Barry.
SPEAKER_06 (12:24):
Yep, they're a great uh you can't go wrong with
anyone there, honestly.
It's a great, great place.
I'm happy that I'm so close toall of it.
I was diagnosed within like twomonths of going for my first
appointment, which if Mira tellsher story is very different.
SPEAKER_04 (12:41):
Go ahead, Mira.
Yeah, against me.
Yeah.
Amy.
SPEAKER_07 (12:46):
I'm Amy.
Um I um I'm from SouthernOregon.
I live in a little town calledRogue River that no one's ever
familiar with.
Um, I was diagnosed, well, in2021, June 2021 was when I was
diagnosed.
But I've had symptoms since Iwas 14, 15, that my hands
started shaking in middleschool, and um, they couldn't
(13:08):
figure out what was wrong withme for quite a few years.
And then they diagnosed me withSMA back when I was like 17.
Um, and then they came out witha cure for SMA, and I went to go
get it, and my doctor said Inever had the genetic mutation
for it.
So then I was like, so I don'thave it, and you guys never told
me.
And then I had to go back intofiguring out what was wrong with
(13:30):
me.
Nobody could figure it out.
And so I started havingweakness.
I've always had weakness in myshoulders and arms and hands
since it started back when I wasa teenager.
But then when it startedaffecting my legs, I just
couldn't handle not knowinganymore.
So that's when I went to theMayo Clinic in Arizona, spent a
(13:50):
week there, and they did all thetests all over again, and they
got me diagnosed within, Ithink, a week after.
And that's when I finallyfigured out I had ALS, the
sporadic one.
SPEAKER_04 (14:03):
Well, I'm glad that you're a slow professor.
Yeah.
I'm slow professor.
SPEAKER_05 (14:09):
How old are you now, Mara?
SPEAKER_07 (14:12):
I am 28.
SPEAKER_05 (14:13):
Well, your voice is incredible.
All of your voices areincredible.
Um, Lori sounds like shit, andshe's got a podcast.
SPEAKER_06 (14:27):
Yeah.
We all sound lovely, every oneof us.
SPEAKER_08 (14:30):
Yes.
It's just our new accents.
It's fine.
unknown (14:35):
Yeah.
SPEAKER_05 (14:37):
I am in constant awe of Lori Carey, and he knows that
I'm kidding.
SPEAKER_04 (14:44):
Aw, I know you are.
I'm just kidding.
SPEAKER_05 (14:47):
But you guys are right away an inspiration to all
of us, and thank you for sharingyour stories.
Mine is similar to all of yoursin that I'm a slow progressor
diagnosed in December of twentyone.
(15:09):
And um so far everything is justslower on me, um, but I'm a
hundred percent functional,meaning that I can uh do all the
things that I've always doneexcept ride motorcycles.
(15:33):
Like ninety-nine percentfunctional.
I have noticed that my left armin this one is uh getting
smaller.
I don't know if you can tell,but I can tell when I look in
them, but my foot drop is notconsistent and equal size.
(15:59):
I when I fall I trip on eitherfoot.
And I do have a little atrophyin my above my right leg, below
my right glute, and we saw thatin the MRI in 2019, 2020.
SPEAKER_08 (16:24):
That's exactly where my only atrophy is.
Right there at the top of theleg, bottom of the glute on the
right side.
SPEAKER_09 (16:31):
That's that's so weird.
SPEAKER_08 (16:34):
Oht cheek.
SPEAKER_05 (16:43):
Like the rest of you, I don't know what tomorrow
brings, and and um on tour withthe Zag Brown man still, and I'm
playing the sphere in Las Vegasin December and January.
SPEAKER_01 (17:01):
Oh yeah, oh yeah, oh yeah, yeah.
SPEAKER_05 (17:06):
Hoping to continue to be on the road.
I do have the use of my legs.
Um I am heavy, 243 pounds, andhave been dropping weight
(17:26):
intentionally, even though mydoctors say to really be careful
with that.
SPEAKER_04 (17:33):
Yeah.
SPEAKER_05 (17:33):
Because I want to move better.
SPEAKER_04 (17:36):
Yeah, I I know that's tricky.
We just had a Q ⁇ A with myneurologist at support group,
and that came up about losingweight, and I asked her to
clarify because um a lot ofpeople hear, you know, don't
lose weight, don't lose weight.
And then, you know, because theyhave less activity, they gain
(18:00):
weight around the midsectionover the diaphragm.
And so I asked to clarify thatbecause, in my little opinion, I
feel like if you have that extraweight sitting on your
diaphragm, it's gonna be extrahard for you to, you know, keep
that working at a normal pace.
(18:24):
So I think there's you know agood balance there.
SPEAKER_08 (18:29):
I'm right now I'm 60 pounds heavier than I was
pre-diagnosis, and now I'm adiabetic.
I have high cholesterol, thingsthat I I was a very active,
healthy person, and them tellingwell, I was on steroids for the
meningitis.
That's where all the weight camefrom.
(18:50):
But I can't get it off.
I have no appetite at all, Ihardly eat, and I'm still 60
pounds heavy.
Well, I haven't been weighed ina year.
I'll see when I go to clinic intwo weeks.
SPEAKER_05 (19:07):
So I've lost 30 pounds.
But on purpose.
Yeah.
SPEAKER_04 (19:13):
How do you feel?
SPEAKER_05 (19:14):
I feel I mean, I don't remember what it's like to
feel good.
SPEAKER_06 (19:22):
Yeah.
Um, we heard a study at somepoint that said something about
a high carb intake was good, soI've been training for that my
whole life.
So I'm just continuing that.
SPEAKER_04 (19:35):
And you're a champion.
SPEAKER_05 (19:37):
I'm on a diet right now from the Dr.
Dean Hornish program, and it'svegan.
SPEAKER_08 (19:49):
You said vegan?
Oh, that's that's the oppositeof me.
I can't do that all.
SPEAKER_05 (19:55):
It's the only diet nutrition program in the US that
is covered by insurance.
It has been proven to reverseheart disease along with that.
(20:15):
Diabetes has um succumbed tothis uh program.
It's all about stress relief,um, loving more nutrition and
exercise.
And I'm gonna be on it foranother three weeks and then I
(20:38):
will probably introduce likechicken and eggs.
But uh for the most part Ihaven't really missed a lot of
things.
Um a big fan of like chilies andsoups and stews, and you can
(20:58):
make all those with beans andhigh protein veggies.
And I'm high fiber and no dairy.
So I'm cashew milk, almond milk,soy milk.
SPEAKER_04 (21:14):
Yeah, whatever works.
And you know, one of the reasonswhy I wanted to do this happy
hour is just because ALS looksdifferent on everyone.
I've been getting a lot ofprivate messages lately saying,
Are you sure you have ALS?
21 years, how can that be?
I don't think that's what youhave.
I think that doctors are wrong,you know, on and on.
(21:37):
And so it really just kind ofstruck me like if you aren't
familiar with someone livingwith ALS, you might have this
vision of exactly what it lookslike and who has it.
And we all know that recentlymet someone who was diagnosed at
(22:01):
four, four, four years old, um,and is now in high school.
Um it looks different and itisn't one specific right.
And also the other thing is, Imean, it is doom and gloom as
far as a disease, the outcome,the progression.
(22:25):
But so many people, like all ofyou, are finding ways to live a
full happy life, and I thinkthat's also hard for people
outside of this to understand.
For example, your her ALScommunity, and that you all just
got back from Cape Cod.
(22:48):
I think I read there was like39, 40 of you who gathered.
I want to hear about that.
I want to hear what happened?
Uh you know what that experiencewas like.
I think I read somewhere thaty'all had the cops calling on
you for noise complaint.
(23:11):
We did.
Oh, the drag show.
The drag show.
SPEAKER_09 (23:14):
The neighbors were not helping.
SPEAKER_04 (23:15):
That's right.
That's right.
I was there for that.
Right.
We want to hear about it.
Do you know where you could?
SPEAKER_07 (23:23):
I was just gonna say we just blast in music at a drag
show um event.
And it it was only what, like 7p.m.
No, it wasn't late.
And the neighbors um complaineda couple times about a noise
complaint.
And so we were like, it's tooearly.
We're gonna we're gonna listento music, we're gonna dance.
(23:44):
So yeah, it was it never showedup.
So I guess we weren't doingsomething too wrong.
Yeah, yeah.
SPEAKER_06 (23:52):
Yeah.
So it was at like a farm thatthey have that's like the one
off site dinner we go to, and wedid it last year too, and had a
drag show and dinner.
Um and just have a great time.
(24:17):
No, your typical drag queen.
SPEAKER_05 (24:19):
Drag racing.
SPEAKER_06 (24:21):
Drag queen.
No, we did wheelchair Olympicsat the end of the retreat.
Oh, on a different drag ratesdifferent.
SPEAKER_04 (24:29):
Yes.
Yeah, how did the drag showbecome a part in this annual
retreat?
SPEAKER_08 (24:34):
One of our girls that passed away, she loved a
drag show.
And it was two girls that passedin the same year.
One loved to go to the dragshows, and one was just like the
life of the party.
So the theme for that would havebeen the 2023 was disco balls
(24:59):
and drag queens, and we justloved it so much that they're
part of our family now, too.
Or it has become our littletradition now to have our drag
queen show, and we all justfound out that there's a such
thing as drag king shows.
(25:20):
So we're gonna see if we canfind a drag king for next year.
SPEAKER_05 (25:28):
So you're you're not dressing in drag, you're hiring.
SPEAKER_07 (25:33):
Yes, you got it.
Yes, we have reoccurring too.
Uh our ladies came twice in arow.
Oh, yep.
They like us.
SPEAKER_04 (25:41):
Yep, that's awesome.
Yeah, I know you all have agreat chat, so I want to know
what was in the chat after youall came back.
Like, what was the one thing youall kept talking about after it
was over?
SPEAKER_06 (25:55):
Missing each other.
Yeah.
But it's like an emotionalhangover of like, I got to be
with you guys for four or fivedays, like straight, everything
felt so normal, like witheveryone, and now like we're
back to reality, back to home,we're all separated.
Like that part always stinks,but it's like one of those
(26:16):
things.
What is it?
Better to have loved than lost,whatever the saying is.
It's like you, it's good, youhave something to miss.
SPEAKER_04 (26:23):
Better to have loved than lost.
Yeah, yeah, I can imagine.
SPEAKER_08 (26:28):
I agree that that's probably the biggest thing
that's in chat.
I mean, there's some like wegoing through all the photos and
everything, and everyone postingtheir favorite video on
someone's partner that wasdancing on the dance floor, or
like because everyone got out intheir wheelchairs and were on
the dance floor, and the videosthat's just you know, replaying
(26:51):
the memories, and yeah, yeah, uhreliving the moments.
SPEAKER_06 (26:56):
Everyone discussing who got who got dizzyed with the
tequila, our new, our newfriends, like oh god.
SPEAKER_05 (27:05):
Where's the next one?
You guys should have acontingency that goes to Vegas
to come to the sphere.
SPEAKER_08 (27:15):
Oh, yeah.
I've been dying to go to Vegas,so I just might show them on.
SPEAKER_04 (27:25):
Yeah, we're going uh the weekend of the uh December
5th and 6th, so let's do it.
SPEAKER_05 (27:34):
We just added two new days in January.
SPEAKER_04 (27:38):
Let's make this happen.
Oh, they did okay, so you havetwo weekends in December, two
weekends in January now, eightopportunities to see hop play in
the sphere.
Our ALS brother still singing itand still bringing it.
(28:00):
Okay, great.
All right, well, that'sexciting.
Yeah, I saw I saw the um van onJimmy Kimmel last night.
Yeah, yeah, that was fun.
I missed it.
I didn't see it.
Oh, you missed it?
Yeah, yeah, it's out there.
SPEAKER_06 (28:16):
I catch everything via like social media after the
fact and then I go and watch it,so I will find it.
SPEAKER_05 (28:23):
Yeah, they do a good job of putting it on YouTube
almost immediately.
Yeah, yeah, yeah.
SPEAKER_04 (28:33):
So I was thinking about if you guys had a
soundtrack of your weekendtogether, what would it be?
And then I was thinking aboutseeing the band on Jimmy Kimmel
like their new song, I ain'tworrying about it.
SPEAKER_06 (28:50):
Yeah.
Well, Kate at our last night,um, she asked the band to play
only the good die young.
Um, and she said it was herdying wish.
So I really feel like that kindof um that kind of encompasses
it quite a bit.
SPEAKER_01 (29:08):
Yeah.
SPEAKER_06 (29:09):
But not in like a sad way, where like we spend so
much time just laughing and justbeing ridiculous and just having
the best time ever.
So it's like like in a partyingtype of way, like only the good
die young.
Here we go.
SPEAKER_08 (29:27):
So we all do that.
SPEAKER_07 (29:31):
I like the song, I don't know who it's by, but
fight song.
SPEAKER_04 (29:35):
Oh, yeah.
SPEAKER_06 (29:36):
Rachel Platt.
Yeah, I like it so good.
SPEAKER_04 (29:38):
Yes, yeah.
SPEAKER_06 (29:39):
That that that one always makes me cry, but it's so
good.
SPEAKER_04 (29:42):
That's a good one.
I have one that I sing at thetop of my lungs.
Oh, who sings it?
It's called the breakup song,but it's about breaking up with
fear.
Fear, you don't own me.
Um Francesca Best.
Something like that.
Yeah.
(30:02):
Love that.
I'll have to listen to it.
Yeah, I'll send it to you guys.
But um how if I know people thatI talk to are always saying,
like, how are you doing?
How are you managing?
You know, just you'reeverywhere.
Like how are you managing to doit all?
SPEAKER_05 (30:22):
I feel lucky.
I feel I feel like it's unfairsometimes that I'm as active as
I am.
And at the same time I curse thecrooked, slow steps that I take.
And I wonder what tomorrow willbe like.
(30:47):
But as far as how do I do itall, I just get up every day and
put one foot in front of theother until the day comes when I
can't.
And I think there's a light onme as to how busy I am because I
(31:13):
have this music career.
But that's what all of you aredoing.
That's what everyone is doing.
They're putting their feet onthe floor for as long as they
can and getting up and doingwhat it is that you love and and
(31:36):
I applaud you all for that.
You know, one of my favoritephotos of myself is jumping on
stage and tandem with Clay Cookand we have our guitars like
this, and I miss that.
(31:56):
I miss uh running across thestage and jumping.
But you know, I haven't had toleave the stage.
Yeah.
So you know, um, I'm blessed.
I'm too blessed to be depressed.
SPEAKER_08 (32:18):
I like it.
I like it.
I like that.
Yeah, having a purpose and apassion will definitely keep you
going.
Yeah.
SPEAKER_06 (32:27):
Do people like treat you differently or like is there
what's something that's like Idon't know, you've found to be
different as far as like yousaid, Lori, people, how you
doing?
What's going on?
Like that type of stuff.
And it's kind of like, can wejust be normal?
SPEAKER_05 (32:44):
I imagine that everyone gets that.
SPEAKER_06 (32:47):
Yeah.
Yeah.
SPEAKER_05 (32:49):
In this room.
SPEAKER_09 (32:51):
Yep.
SPEAKER_05 (32:53):
And I want to wear a t-shirt that says, if I need
help, I will ask.
Yes.
SPEAKER_09 (33:08):
Yeah.
SPEAKER_06 (33:08):
And add in there, not drunk, I have ALS.
SPEAKER_05 (33:14):
That's a good one, too.
But the band has a company thatum shuttles us around to the
airports and all that.
And I've got this one guy thatwe use a lot, and um he's almost
family.
And he puts on and takes off mybackpack.
(33:39):
And I'm like, Mo, leave mealone.
And and yeah, I got that foryou, I got it.
And I'm like, you're gonnafucking knock me over.
SPEAKER_08 (33:49):
Yeah, yeah, yeah, yeah.
Like don't.
I mean, if it let him knock youover, then he won't do it
anymore.
Then he might end up with ablack eye like I'm breaking the
elbow.
That's why I said it's safe.
If you got something to fall on.
Yeah.
(34:09):
Yeah.
SPEAKER_05 (34:10):
Yeah.
People are always trying tohelp, and my my band knows
better.
SPEAKER_09 (34:18):
You know.
SPEAKER_05 (34:19):
Um, and I'm the first one to say, Coi, carry
this guitar for me while I getmy backpack.
And he's like, Great, you know,um, this chair sucks, hold me
up, you know, that kind ofthing.
The the chair I'm in right nowis really easy.
(34:41):
But if I'm seated on a couch andwhere my feet are higher, and
you know, I have and there's noarms, I'm gonna be like, hey,
help me out.
SPEAKER_06 (34:56):
Yeah.
But yeah, I have a friend whosays to me, at first she was
like, All right, I'm I'm gonnawatch you and just see when you
need help.
And I was like, that's great.
Like she was like, I'll wait foryou to ask for help.
And then after a while, likefurther into the diagnosis, it
was like, This is actuallytaking up more of my energy,
(35:16):
which they say not to do.
So can you just actually do thisfor me?
But she was good.
Like she waited for my directionto not be like because she knows
it's annoying.
SPEAKER_05 (35:29):
Yeah, I've fallen more times by people trying to
help me walk, and now I just sayif someone grabs my arm, I'm
like, go in front of me, and I'mgonna hold your shoulder, and
I'll tell you if I'm if you'regoing too fast.
SPEAKER_09 (35:51):
Yeah.
SPEAKER_05 (35:52):
But that whole I got you, and it's like um yeah, I'm
gonna topple.
SPEAKER_08 (36:03):
Yeah, yeah, yeah.
My family's been pretty goodbecause I'm the third, so it's
not their first rodeo, but myfriends are all nurses, and
that's in their mind just toautomatically help.
And it caused a couple fights inthe beginning, but now they're
(36:24):
good.
They they know wait until I ask,which I hardly ever do because
I'm very bad at asking for help.
I've been a very independentperson, but they're getting
better.
I'm getting better.
SPEAKER_06 (36:38):
Yeah, I feel like that's one of the criteria get
ALS is you have to be liketoxically independent, so then
so then you can't do that now,now this is your punishment.
Okay.
SPEAKER_04 (36:52):
Yeah, I see that.
Yeah, everybody here has reallyput themselves out there in our
community and beyond to educatepeople about ALS and the
importance of finding a cure andthe importance of having people
come into our world to supportfinding a cure.
(37:14):
What do you think it is withinyou that that has made it
possible for you to do that witheverything else that is going on
in your life?
Like, how one thing I rememberyou saying in an interview
earlier when I asked you how didyou decide to go public, and you
(37:37):
said if the girls were to askyou, Dad, why didn't you do X or
whatever?
Like, are your daughters amotivation for you?
SPEAKER_05 (37:50):
Yeah, we just wanted to be able to tell them that we
have done everything that wepossibly can.
And for me, that meant usingthis rock and roll platform to
our benefit.
And to others, it means jumpingin on one of the other amazing
(38:17):
501c3s out there already doinggood work.
And for us, we felt like therewas a huge community that
otherwise wouldn't have knownabout any of this except from
our perspective.
(38:38):
So you know, we've been veryblessed to have granted over
four million dollars in threeyears for programs.
We support Healy, we support ALSTDI, and we needed our own
(38:58):
company, our own 501c3, to beable to custom pick.
You know, we support Duke andHouston Methodist and all these
programs that we believe in.
We wanted the freedom to be ableto explore.
(39:21):
Everyone gets a little one-sidedin their vision because they're
it takes everything.
Yeah, they will have success inan area and throw their um
efforts into that.
And that's amazing, but wewanted to be able to pivot.
(39:46):
Yeah.
So um that's why I'll want tocure that.
SPEAKER_04 (39:50):
Yeah.
I know you have to run.
Um, I want to ask about Harmonyfor Hope, and I'll let you go,
and then I'll wrap up with thegirls.
So talking about uh Hop on acure, your second gala is coming
up in Atlanta on October 18th.
(40:11):
So I'm really excited to go backagain.
Same format, singer, songwriter,where everyone on stage gets a
turn to play a song and liketalk about the music or talk
about how the song was born.
I think that's really a cool,unique experience and a great
(40:34):
way to raise funds for research.
So what are you excited aboutthis year for that?
SPEAKER_05 (40:40):
Well, all the singer songwriters are world-class, but
there's a fun thing that we'redoing this year with a guy named
Eric Pasley, and Eric takes up abunch of songwriting ideas and
puts them in a hat.
(41:01):
So you write down you know,write a song about meeting the
love of your life on a subway.
You know, and he'll he'll belike some way the subway you
know made us fall in love today,and like he I mean that's stupid
(41:30):
or whatever.
SPEAKER_04 (41:30):
Yeah, yeah, yeah.
I got it.
SPEAKER_05 (41:32):
He will take it and make it into this badass song
and probably he's got his craftso owned in.
And the cool thing is if heactually I I need to ask him how
many times someone has likebought the song.
SPEAKER_01 (41:57):
Like oh yeah.
SPEAKER_05 (41:59):
If it becomes a Blake Shelton hit, yeah, then
you're a writer.
So it could be just anentertaining night, or it could
be retirement.
SPEAKER_09 (42:16):
Yeah.
SPEAKER_05 (42:17):
That's so cool.
So that's fun, and we alwayshave an amazing menu, and we
we've got great sponsors andlots of great fun tonight.
Um after the gala, we're gonnado karaoke with the performers.
SPEAKER_04 (42:41):
Yeah, that's gonna be fun.
Yeah.
Well, I will drop a link, uh, ofcourse, in the show notes.
Hopfunnycare.org.
Tickets are available,sponsorships and benefits uh are
available.
So if you're interested inchecking that out, Hop I know
you gotta go.
So what are you dying to tellus?
SPEAKER_05 (43:03):
I'm dying to tell you that I love Lori Carey.
Oh heart right back.
I'm dying to tell you that herALS story is comprised of a
(43:24):
bunch of Amazon badass queens.
SPEAKER_09 (43:29):
Oh yeah.
SPEAKER_05 (43:32):
We love that.
Thank you guys for letting meinvade your space.
SPEAKER_04 (43:36):
Oh, thank you.
Thank you.
Thanks for stopping by.
Thanks for stopping by.
Hey, and I'll see you in acouple days at the Joan Martin
Foundation.
SPEAKER_05 (43:46):
Hey Kelly, um, you guys can all text me whenever
you want and send your name withit.
And um if you want to come toFriendway, let me know.
SPEAKER_04 (43:57):
Oh yeah, I'll text you.
Thank you.
Enjoy the content.
All right.
See you guys.
Okay.
Wasn't that fun?
SPEAKER_07 (44:08):
Yeah.
SPEAKER_01 (44:08):
That was such a cute surprise.
SPEAKER_04 (44:10):
I loved it.
I asked him about hey, do youwant to come on and do this with
some ladies from her in thestory?
He said, absolutely, yes, let'sdo it.
SPEAKER_06 (44:21):
So love that's awesome.
Yeah.
SPEAKER_04 (44:28):
Okay, I'm trying to circle back and remember what I
was asking you all before Irealized you had to go.
Yeah.
What is it within you thatallows you all to put yourselves
out there in the way that youdo?
SPEAKER_08 (44:48):
Well, this honestly is the first type of interview
that I've done like this.
So I have been more in theresearch area of ALS.
I'm on the Less Turner board,uh, Betty's game board, and the
leadership of her ALS stories.
(45:10):
So I mean that that was takingup a lot of time, and I but I
know with my mom, my mom nevergot involved with the ALS
community, and it was soisolating.
Over the years, you know, shewouldn't leave the house because
she didn't want people to seeher.
She was very love you, mom, butshe was very vain.
(45:33):
And you know, when everythingchanges, you look a little
different, and I could start tosee that happening with me with
the weight gain and all thatstuff, and now with my voice not
being what it used to be, I'm Ialready live alone.
I'm by myself, I don't want tobe in isolation, so I think it's
(46:00):
time to start telling my storyand getting myself out there,
and I mean, all I ever see is myneighbor across the street.
I need to get around a littlebit more.
But now anytime someone asks meto do anything, I don't even
check in with myself anymore.
I'm just like, yes, let's go.
SPEAKER_04 (46:21):
Yeah.
SPEAKER_08 (46:22):
And we'll make it work when it's happening.
But isolation is not the way togo with this disease.
SPEAKER_04 (46:31):
No, no.
I mean, I've learned that overand over again, you know,
talking to so many people overthe last five years, the power
of community.
And every time I say that, I sayher A-list story is a perfect
example of that.
Man, it really is a gamechanger.
(46:52):
So I'm glad that you're willingto do that.
So, Kelly, what about you?
SPEAKER_06 (46:58):
Um, so I have a nine-year-old daughter.
She was seven when I wasdiagnosed, and she was at her
dad's for a few days.
And so I like wanted her to comehome because I just wanted to
hold her, but I also couldn'tface her because I just couldn't
stop crying.
So she didn't come home for likea couple of days.
And I had, you know, my pityparty.
(47:19):
I mean, well, well deserved pityparty.
I was, you know, upset.
I just like couldn't, I thoughteverything I was gonna do was
the last thing I was gonna, lasttime I was ever gonna do it.
And then thankfully for me, myprogression was slow.
So I'm like, okay, well, I guessI'm not gonna die in like five
months.
So I should probably like goback to a life again.
(47:41):
Um, so you know, it's like Ikind of looked at it.
I'm like, if I'm gonna just layin my bed and be miserable about
this, then like what's the pointof even living at that point?
So um, plus I'm very much anopen book, so I'm fine with
sharing my story and who I amand what I've been through and
what I'm, you know, sharing herALS story.
(48:03):
I mean, that group has saved somany of our lives.
I really feel that way.
Like there's the group just itis, it can be so isolating.
People don't know what you'regoing through, people don't
understand like what it's like,and they try to and they try to
be helpful, but people justdon't get it.
So just being able to go to thatgroup and just talk about
(48:26):
whatever it is, ALS related ornot, we just talk about
everything.
So having that is, I think thathas opened, I'd say most of us
probably up to a way that weprobably may have not been
before as far as sharing andtalking and being open.
And but for me, it was justlike, well, I'm not gonna lie to
(48:48):
her about what's going on.
I mean, I've kept things ageappropriate, but she's a big
part of it.
Like she helps me with things,she helps me get dressed, she
helps me, you know, do my hair,things like that.
And so I'm not gonna ask her tokeep it to herself.
Like you can't say what's goingon with mom, you know?
(49:08):
So we just, I mean, she wouldn'tanyways.
She sings like a canary.
But she was really like my push.
And then it was like, okay, nowI'm I'm gonna do all the things
I can while I'm here, especiallybecause I have so many girls, so
many sisters that can't speakfor themselves, can't take
themselves to a doctor'sappointment, can't take
(49:30):
themselves to like a researchthing and they're relying on
somebody else.
So I looked at it and I waslike, well, while I can still do
these things for myself, I'mgonna do them for the people
that can't and for myself.
So that was like really justkind of how what pushed me and
and what has guided me throughthis, I'd say.
SPEAKER_04 (49:49):
I love that.
And I'll tell you, my sons were11 and 13 when I was diagnosed.
And um, you know, after thesecond opinion, we told them
what was going on.
But I think it's been reallyhealthy for them, you know, over
the years.
And I've seen both ways.
(50:10):
I've seen uh families that havenot told their children what is
going on, and uh it makes itreally hard, you know, because
no matter what, as it feelsunfair to them, and you know,
and some mom because they'restill there living it.
Yeah, and you know, as a mom,kids know they know all, they
(50:32):
know all.
Yeah.
SPEAKER_06 (50:35):
She's said to me too sometimes, sorry, she said to me
too sometimes, she's like, Mom,when your other hand doesn't
work, I'll help feed you.
And we've never talked aboutprogression, but she just
intuitively is like, I'll helpyou do this when you can't do
it, which is really interestingbecause we've never spoken about
progression, but she sees it.
She sees it.
(50:56):
So it's yeah.
Yeah.
SPEAKER_04 (50:58):
Yeah, it tells you right there.
SPEAKER_06 (51:00):
They know.
SPEAKER_07 (51:01):
Yeah.
Mira, I think mainly I was justalways kind of struggling with
like trying to figure out mypurpose after diagnosis.
Um, and I think that once I likejoined her ALS story and met all
the girls and kind of saw theexample of all the advocacy and
trying to make a change, I thinkthat just kind of drove me to be
(51:23):
like, maybe I should share mystory.
Maybe I maybe make it a littlemore normal, unless I just feel
like people just, you know,think you're gonna die and are
like you're gonna be gone inthree to five years.
And I want there to be moreknowledge of all the different,
you know, age and gender and howlong you can live with it and
all that.
And I know that I'm kind of aunique unique case, so I just
(51:47):
felt like I could spread alittle more awareness and um
make maybe a tiny difference.
I want some sort of difference,yeah.
SPEAKER_04 (51:54):
And you are, and you are for sure.
Yeah, yeah.
And that life can go on, youknow.
Abilities might be different,but um you still have a purpose,
you still have a lot to give,like everyone.
Even if you lose your voice, youhave a voice that's powerful.
So what is one dream that youare still determined to chase,
(52:21):
even if it looks different?
SPEAKER_07 (52:24):
I want to keep traveling.
I love traveling, and so I wantto keep doing that.
Yeah.
SPEAKER_08 (52:30):
I've never been a train chaser, so I I just wanna
enjoy every day, every moment,and make a couple people smile
along the way.
That that is what I want.
Yeah, not really that you know,I I world peace.
I'll I'll do that one.
SPEAKER_04 (52:53):
We'll take it for sure.
Kelly.
What about her ALS story?
Your group.
Is there a goal or somethingthat you all talk about that you
would like to accomplish as agroup?
Kelly.
SPEAKER_06 (53:12):
We like talk about making a compound for all of us
to live in together.
Um, and I think that's a pipedream, although I we've got a
lot of determination.
So I don't know.
Um, but just it because there'sso it's so hard finding good
caregivers.
The stories we hear from ourfriends are just horrific, the
(53:35):
things that they go through.
And so, like if we could find aplace and have hire caregivers
and have everyone together, likethat would just be amazing.
Um, one thing that I feel islike realistic, at least for me
being involved in timing-wiseand things like that, is and
resource-wise, um, having ourkids that are, you know, as they
(54:00):
get older, having them be ableto um have contact with each
other so that when like theirparents pass and things like
that, they have people that theythat know what they went through
and like their moms knew eachother and things like that.
Um, so that's something thatyeah, yeah.
It's and it's like hard to hardto think about, hard to talk
(54:24):
about, but like that's somethingwe've mentioned in the past.
Like, hey, we should try to setsomething up with each other so
that our kids can can have eachother, like just like we have
each other.
And now it's okay.
SPEAKER_04 (54:40):
I cry all the time.
It's fine.
Well, it there is something tobe said, you know, like when
people live with ALS, when wemeet each other, there is an
instant bond because we get it,yeah.
And so it would be the samething for your children, like
and it might not be like aformal bereavement group, but it
(55:04):
would just be someone thatunderstands, you know, in a
friendship to be born, justbecause they understand.
So I think that's really cool.
Mira, you mentioned that you'renot gonna give up traveling.
Do you have any trips planned?
SPEAKER_07 (55:22):
Um, yes.
I think the soonest one rightnow is only I have never been to
Florida, and I've I've been to alot of states, and so that one's
kind of one that I've neverseen.
So I mean my friend want to goto Florida next April.
Not anything soon yet.
SPEAKER_04 (55:38):
I want to go to beach.
Ah, absolutely.
Nice.
Well, you all can look at LasVegas and we can get in the
sphere.
SPEAKER_07 (55:46):
I would love to see the sphere.
I've never been.
It looks so fun.
SPEAKER_04 (55:49):
Yeah, it's from what I heard, the show is gonna be
amazing.
Uh, it's gonna be fun.
Okay, and thank you all forbeing here.
I really appreciate you fortaking the time and coming on
and chatting.
It was fun.
Um, Tina, what are you dying totell us?
SPEAKER_08 (56:09):
I'm dying to tell you that even though I'm
terminal, I am not throwing inthe towel.
I'm going to live every day andenjoy every moment.
And if I say anything thatoffends you, that's your fault.
SPEAKER_04 (56:29):
I love it.
Okay.
Kelly, what are you dying totell us?
SPEAKER_06 (56:34):
I am dying to tell you that people that I've met
with ALS are some of thefunniest and happiest people
I've ever met in my life.
And I think everyone could takea page from our book.
SPEAKER_04 (56:47):
Yeah.
And my husband always says that,like, they're always in the
nicest people, you know, too.
Like, oh wow.
SPEAKER_06 (56:57):
We got a lot of dark humor too, gets us by.
I'm dying to tell you that darkhumor is what saved you.
SPEAKER_04 (57:06):
I believe it.
Yeah.
Okay, Mira.
What are you dying to tell us?
SPEAKER_07 (57:12):
I'm dying to tell you that there is still life
after ALS.
We're we're all laughing andliving and having game nights
and the girls' nights and goingout, and we're not we're not
just hiding out and doingnothing.
We're we're living our lives.
SPEAKER_01 (57:29):
Yeah.
SPEAKER_07 (57:30):
Aww.
SPEAKER_04 (57:30):
Thank you.
Thank you all again for being apart of this.
My first happy hour edition.
Thank you for your time.
And uh, being in touch.
Okay, all right.
Thanks.
All right.
Bye everyone.
Um, thank you all for beinggreat ALS advocates.
(57:53):
To my listeners, I'm gonna putthe links that I mentioned.
The link to Hop on a cure.
Uh, if you're interested inchecking out Harmony for Hope
coming up in the Atlanta area onOctober 18th.
Uh, I'll put the ticket linkthere to make it easy peasy.
(58:16):
I'll also put the link to herALS story so that you can follow
them, see what they're up to,and support these young ladies.
If you are not connected onsocial media, yeah, you can do
that.
I'm pretty much everywhere.
All at I'm Dying to Tell YouPodcast.
(58:41):
So Facebook, Twitter, Instagram,LinkedIn, and TikTok.
All at I'm Dying to Tell YouPodcast.
I appreciate you sharing thisepisode if you think there is
someone that can be blessed bylistening.
(59:04):
So until next time, know you areloved and not alone.
Thanks for listening.
SPEAKER_03 (59:19):
Thank you for listening to our mom.
Make sure to visit her websiteat I'm dying to tell you
podcast.com, where you'll findphotos and show notes about this
episode.
If you like the show, pleasesubscribe to the podcast and
share it with your friend.
Thank you.
Hey, I'm Paul.
SPEAKER_02 (00:10):
And I'm Christian.
SPEAKER_00 (00:11):
Welcome to I'm Dying to Tell You.
Inspiration shared by our momwho is dying from ALS.
SPEAKER_02 (00:16):
There's no cure for our mom or anyone else with ALS.
But right now, she's on amission to find and share
stories of inspiration.
SPEAKER_00 (00:23):
Coming to you from Cincinnati, Ohio, we're happy to
introduce the one lady we'veboth loved since the first day
we laid eyes on her.
The Queen of the Queen City, ourmom, your host, Lori.
SPEAKER_04 (00:50):
Hi, I'm Lori, your host of I'm Dying to Tell You.
Thank you for being here.
If you have listened in before,thank you for coming back.
And if you are a brand newlistener, welcome, welcome,
(01:10):
welcome.
I'm so happy that you're here aswell.
If you've been listening in, orif you're a part of the ALS
community, you probably knowabout her ALS story.
It is a group of young women whohave been diagnosed with ALS,
(01:30):
most of them before the age of35.
Their spirit, their community isreally something special and
simply a lifeline for so many ofthese young women being young
and living with a terminalillness.
(01:53):
Every one of them inspires me insome way.
And so today I'm really happy tobe sitting down with a few of
them.
They recently got together andwent on a trip.
So I can't wait to hear aboutthat.
And we're just gonna catch up.
(02:15):
This is my very first edition ofa happy hour chat design just to
catch up with each other, asksome questions, see what's going
on, and really illustrate howeven living with ALS, you can
have joy and laughter and fun inyour life.
(02:38):
And to mix it up today, I havesomeone jumping in to surprise
the ladies and be a part of theconversation.
So I am super grateful for thatas well.
So my guest, three young ladies,diagnosed in their 20s and their
(02:59):
30s, all active members of herALS story.
And I'm gonna let them introducethemselves.
But um, I'm gonna be talking toKelly McGinn, Tina Cassio, and
Mira Hudson.
(03:19):
So I'm gonna go ahead and jumpon Zoom, connect with the
ladies, bring in the surpriseco-host, and get this happy hour
started.
Okay, let's go.
Hello.
Hello, hello.
Nice to meet you, Tina.
(03:42):
Hi, Mira.
Good to see you again.
Good to see you again, too.
Yes my husband made me a little,a little drink.
A little frozen margarita.
Yeah.
So this is uh the first editionof a happy hour chat.
(04:04):
And I actually have another herand list story member as a
surprise co-host.
So I love that.
SPEAKER_07 (04:17):
Surprise co-host?
Oh my god!
SPEAKER_06 (04:26):
That's amazing.
SPEAKER_07 (04:27):
Oh my god, that's great.
SPEAKER_04 (04:31):
Hi, hey Chicos and our honorary member of her ALS
story, love that, John DrescellHopkins.
Hey, thank you for coming on.
SPEAKER_05 (04:48):
I'm happy to be here.
Thank you for inviting me.
SPEAKER_04 (04:52):
Yeah, and how did you get to be an honorary member
of this special club?
SPEAKER_05 (05:00):
I don't remember the first time I jumped on a her ALS
meeting, but it was probably ayear ago or more.
And then we go and got a hangoutin um New Orleans at the Glee
Single.
SPEAKER_04 (05:20):
Oh, okay, okay.
SPEAKER_05 (05:23):
That's when I was initiated.
SPEAKER_04 (05:29):
Uh shouldn't we even ask about the initiation
process?
Or that's probably top secret,right?
SPEAKER_05 (05:36):
I've still got the burn marks.
SPEAKER_04 (05:38):
Oh.
SPEAKER_06 (05:43):
I think the initiation process is just a
shot of tequila, isn't it?
It is.
SPEAKER_05 (05:49):
So you met that mine was on fire.
SPEAKER_06 (05:55):
Oh.
SPEAKER_05 (05:56):
And that's when I got burned.
Oh.
SPEAKER_04 (06:00):
Oh my gosh.
Hey, let's introduce everyone isintroduced themselves real
quick.
SPEAKER_05 (06:07):
Full disclosure.
You guys are part of my up on acure documentary right now.
We have a camera crew over here.
SPEAKER_04 (06:23):
Oh, well, hey.
SPEAKER_05 (06:25):
Anyway, let us know when the pillow fighting starts.
SPEAKER_04 (06:32):
I'm gonna pivot and uh make sure you capture that.
Hey Tina, why don't you goahead?
SPEAKER_08 (06:39):
So I'm Tina.
I'm from Chicago, Illinois.
Diagnosed with familial ALS in2020.
Um, I'm the third in my family.
Just still living life, having agood time.
Every moment of every day.
Yeah.
SPEAKER_05 (06:59):
So familial, I mean, are you SOD1?
SPEAKER_08 (07:05):
And and I won't have to person and it gave me spinal
meningitis and almost killed me.
I'm unfortunately the smallpercentage that it doesn't work
for.
SPEAKER_05 (07:18):
I mean, the smallest percentage of the smallest
percentage can even use it, andthen you're an even smaller
percentage that can.
Yes.
Aren't I that lucky?
I mean I was gonna say I nevermet an SOD1 until you.
SPEAKER_08 (07:46):
Well, it is a great pleasure to be your first.
SPEAKER_04 (07:52):
You're always gonna be special.
Uh Kelly.
SPEAKER_05 (07:56):
How do you feel otherwise, Tina?
I mean, I mean, it's myimpression of familial cases
that they are generally fastprogressing, but you look
amazing.
SPEAKER_08 (08:10):
My mom lived for 12 years and had a smile on her
face on her last day.
My cousin only lasted 18 months.
So I think it has a lot to dowith your mindset.
I've always been a verypositive, don't worry about
(08:30):
problems that I can't fix typeof person.
And I think that's in my favor.
Thank God.
I mean, going on five years,December it'll be five years,
and I'm still walking, I'm stilltalking, I'm still driving,
unfortunately, no longerworking.
I was a nurse, and once yourhands don't want to do things
(08:54):
anymore, it's it's hard tocontinue doing that.
SPEAKER_05 (08:57):
But throw them to my guitars.
SPEAKER_08 (09:01):
Yes.
The guitars definitely would bevery difficult without the use
of your fingers.
SPEAKER_05 (09:09):
Well, you look amazing and your fingers look
strong, and I know that my motorskills have suffered, but I'm
still able to controleverything.
I'm still able to grab my wife'sbooty.
(09:29):
That's the most important part.
I can live for a long time ifthat's the case.
SPEAKER_06 (09:43):
All right.
Um, so I'm from Massachusetts,uh South Shore near like between
Plymouth and Boston.
SPEAKER_05 (09:50):
What are you doing Saturday?
SPEAKER_06 (09:52):
Uh no plants.
Why you were out?
Oh, really?
SPEAKER_05 (10:00):
Okay.
And we're having a fundraiser.
It's called Friend Away.
We have played, I'm sorry tointerrupt.
SPEAKER_04 (10:10):
No, yeah, that was interesting.
SPEAKER_05 (10:12):
Yeah, it's on Saturday.
SPEAKER_04 (10:14):
Okay.
I'll look up the episode.
What kind of event is a friend?
Are you saying friend away?
SPEAKER_05 (10:20):
Yeah, friendway, like Fenway Park.
SPEAKER_04 (10:23):
Oh, friendway.
SPEAKER_05 (10:26):
We had a gig in Fenway Park in 22 and 23.
And right after that, we put ona fundraiser in Ipswich at our
friend's renovated barn.
Cool.
SPEAKER_06 (10:44):
Okay.
I will look up this information.
SPEAKER_05 (10:47):
Um, I don't know that it's public knowledge.
SPEAKER_06 (10:52):
Well, then you can send it to me.
SPEAKER_05 (10:55):
I'll put my number in the chat.
SPEAKER_06 (10:58):
Okay, cool.
Thanks.
Sounds good.
Um, so yeah, I've been diagnosedfor two and a half years, but
I'm like symptom-wise threeyears.
My left arm is completelynon-functional, arm and hand.
(11:19):
It started in the hand.
Um, have a little bit of leftfoot drop and starting to have
um some weakness in my rightshoulder, which I am refusing to
admit is happening pretty much.
Um, but it's becoming, it'sbecoming apparent.
Um, but I'm still doing all thethings.
I'm still working.
(11:40):
Told them today that my days ofcoming into the office are
numbered.
It's getting harder to just likelift things into the car to get
my computer there andeverything.
But I have a nine-year-olddaughter, um, live with her and
my fiance.
We just keep doing all thethings.
Yeah.
It's all everything's a littlebit harder, a little bit slower
(12:02):
to get ready and things likethat.
My daughter's gonna help me pullmy hair back.
Adam is trying really hard tohelp with that.
He's not quite as good as sheis, but he's learning.
So I appreciate it.
SPEAKER_05 (12:15):
Are you at the Haley Center?
SPEAKER_06 (12:17):
Yes.
SPEAKER_05 (12:18):
Me too.
SPEAKER_06 (12:19):
Oh, yeah.
I see Dr.
Ho.
SPEAKER_05 (12:21):
Um, I see James Barry.
SPEAKER_06 (12:24):
Yep, they're a great uh you can't go wrong with
anyone there, honestly.
It's a great, great place.
I'm happy that I'm so close toall of it.
I was diagnosed within like twomonths of going for my first
appointment, which if Mira tellsher story is very different.
SPEAKER_04 (12:41):
Go ahead, Mira.
Yeah, against me.
Yeah.
Amy.
SPEAKER_07 (12:46):
I'm Amy.
Um I um I'm from SouthernOregon.
I live in a little town calledRogue River that no one's ever
familiar with.
Um, I was diagnosed, well, in2021, June 2021 was when I was
diagnosed.
But I've had symptoms since Iwas 14, 15, that my hands
started shaking in middleschool, and um, they couldn't
(13:08):
figure out what was wrong withme for quite a few years.
And then they diagnosed me withSMA back when I was like 17.
Um, and then they came out witha cure for SMA, and I went to go
get it, and my doctor said Inever had the genetic mutation
for it.
So then I was like, so I don'thave it, and you guys never told
me.
And then I had to go back intofiguring out what was wrong with
(13:30):
me.
Nobody could figure it out.
And so I started havingweakness.
I've always had weakness in myshoulders and arms and hands
since it started back when I wasa teenager.
But then when it startedaffecting my legs, I just
couldn't handle not knowinganymore.
So that's when I went to theMayo Clinic in Arizona, spent a
(13:50):
week there, and they did all thetests all over again, and they
got me diagnosed within, Ithink, a week after.
And that's when I finallyfigured out I had ALS, the
sporadic one.
SPEAKER_04 (14:03):
Well, I'm glad that you're a slow professor.
Yeah.
I'm slow professor.
SPEAKER_05 (14:09):
How old are you now, Mara?
SPEAKER_07 (14:12):
I am 28.
SPEAKER_05 (14:13):
Well, your voice is incredible.
All of your voices areincredible.
Um, Lori sounds like shit, andshe's got a podcast.
SPEAKER_06 (14:27):
Yeah.
We all sound lovely, every oneof us.
SPEAKER_08 (14:30):
Yes.
It's just our new accents.
It's fine.
unknown (14:35):
Yeah.
SPEAKER_05 (14:37):
I am in constant awe of Lori Carey, and he knows that
I'm kidding.
SPEAKER_04 (14:44):
Aw, I know you are.
I'm just kidding.
SPEAKER_05 (14:47):
But you guys are right away an inspiration to all
of us, and thank you for sharingyour stories.
Mine is similar to all of yoursin that I'm a slow progressor
diagnosed in December of twentyone.
(15:09):
And um so far everything is justslower on me, um, but I'm a
hundred percent functional,meaning that I can uh do all the
things that I've always doneexcept ride motorcycles.
(15:33):
Like ninety-nine percentfunctional.
I have noticed that my left armin this one is uh getting
smaller.
I don't know if you can tell,but I can tell when I look in
them, but my foot drop is notconsistent and equal size.
(15:59):
I when I fall I trip on eitherfoot.
And I do have a little atrophyin my above my right leg, below
my right glute, and we saw thatin the MRI in 2019, 2020.
SPEAKER_08 (16:24):
That's exactly where my only atrophy is.
Right there at the top of theleg, bottom of the glute on the
right side.
SPEAKER_09 (16:31):
That's that's so weird.
SPEAKER_08 (16:34):
Oht cheek.
SPEAKER_05 (16:43):
Like the rest of you, I don't know what tomorrow
brings, and and um on tour withthe Zag Brown man still, and I'm
playing the sphere in Las Vegasin December and January.
SPEAKER_01 (17:01):
Oh yeah, oh yeah, oh yeah, yeah.
SPEAKER_05 (17:06):
Hoping to continue to be on the road.
I do have the use of my legs.
Um I am heavy, 243 pounds, andhave been dropping weight
(17:26):
intentionally, even though mydoctors say to really be careful
with that.
SPEAKER_04 (17:33):
Yeah.
SPEAKER_05 (17:33):
Because I want to move better.
SPEAKER_04 (17:36):
Yeah, I I know that's tricky.
We just had a Q ⁇ A with myneurologist at support group,
and that came up about losingweight, and I asked her to
clarify because um a lot ofpeople hear, you know, don't
lose weight, don't lose weight.
And then, you know, because theyhave less activity, they gain
(18:00):
weight around the midsectionover the diaphragm.
And so I asked to clarify thatbecause, in my little opinion, I
feel like if you have that extraweight sitting on your
diaphragm, it's gonna be extrahard for you to, you know, keep
that working at a normal pace.
(18:24):
So I think there's you know agood balance there.
SPEAKER_08 (18:29):
I'm right now I'm 60 pounds heavier than I was
pre-diagnosis, and now I'm adiabetic.
I have high cholesterol, thingsthat I I was a very active,
healthy person, and them tellingwell, I was on steroids for the
meningitis.
That's where all the weight camefrom.
(18:50):
But I can't get it off.
I have no appetite at all, Ihardly eat, and I'm still 60
pounds heavy.
Well, I haven't been weighed ina year.
I'll see when I go to clinic intwo weeks.
SPEAKER_05 (19:07):
So I've lost 30 pounds.
But on purpose.
Yeah.
SPEAKER_04 (19:13):
How do you feel?
SPEAKER_05 (19:14):
I feel I mean, I don't remember what it's like to
feel good.
SPEAKER_06 (19:22):
Yeah.
Um, we heard a study at somepoint that said something about
a high carb intake was good, soI've been training for that my
whole life.
So I'm just continuing that.
SPEAKER_04 (19:35):
And you're a champion.
SPEAKER_05 (19:37):
I'm on a diet right now from the Dr.
Dean Hornish program, and it'svegan.
SPEAKER_08 (19:49):
You said vegan?
Oh, that's that's the oppositeof me.
I can't do that all.
SPEAKER_05 (19:55):
It's the only diet nutrition program in the US that
is covered by insurance.
It has been proven to reverseheart disease along with that.
(20:15):
Diabetes has um succumbed tothis uh program.
It's all about stress relief,um, loving more nutrition and
exercise.
And I'm gonna be on it foranother three weeks and then I
(20:38):
will probably introduce likechicken and eggs.
But uh for the most part Ihaven't really missed a lot of
things.
Um a big fan of like chilies andsoups and stews, and you can
(20:58):
make all those with beans andhigh protein veggies.
And I'm high fiber and no dairy.
So I'm cashew milk, almond milk,soy milk.
SPEAKER_04 (21:14):
Yeah, whatever works.
And you know, one of the reasonswhy I wanted to do this happy
hour is just because ALS looksdifferent on everyone.
I've been getting a lot ofprivate messages lately saying,
Are you sure you have ALS?
21 years, how can that be?
I don't think that's what youhave.
I think that doctors are wrong,you know, on and on.
(21:37):
And so it really just kind ofstruck me like if you aren't
familiar with someone livingwith ALS, you might have this
vision of exactly what it lookslike and who has it.
And we all know that recentlymet someone who was diagnosed at
(22:01):
four, four, four years old, um,and is now in high school.
Um it looks different and itisn't one specific right.
And also the other thing is, Imean, it is doom and gloom as
far as a disease, the outcome,the progression.
(22:25):
But so many people, like all ofyou, are finding ways to live a
full happy life, and I thinkthat's also hard for people
outside of this to understand.
For example, your her ALScommunity, and that you all just
got back from Cape Cod.
(22:48):
I think I read there was like39, 40 of you who gathered.
I want to hear about that.
I want to hear what happened?
Uh you know what that experiencewas like.
I think I read somewhere thaty'all had the cops calling on
you for noise complaint.
(23:11):
We did.
Oh, the drag show.
The drag show.
SPEAKER_09 (23:14):
The neighbors were not helping.
SPEAKER_04 (23:15):
That's right.
That's right.
I was there for that.
Right.
We want to hear about it.
Do you know where you could?
SPEAKER_07 (23:23):
I was just gonna say we just blast in music at a drag
show um event.
And it it was only what, like 7p.m.
No, it wasn't late.
And the neighbors um complaineda couple times about a noise
complaint.
And so we were like, it's tooearly.
We're gonna we're gonna listento music, we're gonna dance.
(23:44):
So yeah, it was it never showedup.
So I guess we weren't doingsomething too wrong.
Yeah, yeah.
SPEAKER_06 (23:52):
Yeah.
So it was at like a farm thatthey have that's like the one
off site dinner we go to, and wedid it last year too, and had a
drag show and dinner.
Um and just have a great time.
(24:17):
No, your typical drag queen.
SPEAKER_05 (24:19):
Drag racing.
SPEAKER_06 (24:21):
Drag queen.
No, we did wheelchair Olympicsat the end of the retreat.
Oh, on a different drag ratesdifferent.
SPEAKER_04 (24:29):
Yes.
Yeah, how did the drag showbecome a part in this annual
retreat?
SPEAKER_08 (24:34):
One of our girls that passed away, she loved a
drag show.
And it was two girls that passedin the same year.
One loved to go to the dragshows, and one was just like the
life of the party.
So the theme for that would havebeen the 2023 was disco balls
(24:59):
and drag queens, and we justloved it so much that they're
part of our family now, too.
Or it has become our littletradition now to have our drag
queen show, and we all justfound out that there's a such
thing as drag king shows.
(25:20):
So we're gonna see if we canfind a drag king for next year.
SPEAKER_05 (25:28):
So you're you're not dressing in drag, you're hiring.
SPEAKER_07 (25:33):
Yes, you got it.
Yes, we have reoccurring too.
Uh our ladies came twice in arow.
Oh, yep.
They like us.
SPEAKER_04 (25:41):
Yep, that's awesome.
Yeah, I know you all have agreat chat, so I want to know
what was in the chat after youall came back.
Like, what was the one thing youall kept talking about after it
was over?
SPEAKER_06 (25:55):
Missing each other.
Yeah.
But it's like an emotionalhangover of like, I got to be
with you guys for four or fivedays, like straight, everything
felt so normal, like witheveryone, and now like we're
back to reality, back to home,we're all separated.
Like that part always stinks,but it's like one of those
(26:16):
things.
What is it?
Better to have loved than lost,whatever the saying is.
It's like you, it's good, youhave something to miss.
SPEAKER_04 (26:23):
Better to have loved than lost.
Yeah, yeah, I can imagine.
SPEAKER_08 (26:28):
I agree that that's probably the biggest thing
that's in chat.
I mean, there's some like wegoing through all the photos and
everything, and everyone postingtheir favorite video on
someone's partner that wasdancing on the dance floor, or
like because everyone got out intheir wheelchairs and were on
the dance floor, and the videosthat's just you know, replaying
(26:51):
the memories, and yeah, yeah, uhreliving the moments.
SPEAKER_06 (26:56):
Everyone discussing who got who got dizzyed with the
tequila, our new, our newfriends, like oh god.
SPEAKER_05 (27:05):
Where's the next one?
You guys should have acontingency that goes to Vegas
to come to the sphere.
SPEAKER_08 (27:15):
Oh, yeah.
I've been dying to go to Vegas,so I just might show them on.
SPEAKER_04 (27:25):
Yeah, we're going uh the weekend of the uh December
5th and 6th, so let's do it.
SPEAKER_05 (27:34):
We just added two new days in January.
SPEAKER_04 (27:38):
Let's make this happen.
Oh, they did okay, so you havetwo weekends in December, two
weekends in January now, eightopportunities to see hop play in
the sphere.
Our ALS brother still singing itand still bringing it.
(28:00):
Okay, great.
All right, well, that'sexciting.
Yeah, I saw I saw the um van onJimmy Kimmel last night.
Yeah, yeah, that was fun.
I missed it.
I didn't see it.
Oh, you missed it?
Yeah, yeah, it's out there.
SPEAKER_06 (28:16):
I catch everything via like social media after the
fact and then I go and watch it,so I will find it.
SPEAKER_05 (28:23):
Yeah, they do a good job of putting it on YouTube
almost immediately.
Yeah, yeah, yeah.
SPEAKER_04 (28:33):
So I was thinking about if you guys had a
soundtrack of your weekendtogether, what would it be?
And then I was thinking aboutseeing the band on Jimmy Kimmel
like their new song, I ain'tworrying about it.
SPEAKER_06 (28:50):
Yeah.
Well, Kate at our last night,um, she asked the band to play
only the good die young.
Um, and she said it was herdying wish.
So I really feel like that kindof um that kind of encompasses
it quite a bit.
SPEAKER_01 (29:08):
Yeah.
SPEAKER_06 (29:09):
But not in like a sad way, where like we spend so
much time just laughing and justbeing ridiculous and just having
the best time ever.
So it's like like in a partyingtype of way, like only the good
die young.
Here we go.
SPEAKER_08 (29:27):
So we all do that.
SPEAKER_07 (29:31):
I like the song, I don't know who it's by, but
fight song.
SPEAKER_04 (29:35):
Oh, yeah.
SPEAKER_06 (29:36):
Rachel Platt.
Yeah, I like it so good.
SPEAKER_04 (29:38):
Yes, yeah.
SPEAKER_06 (29:39):
That that that one always makes me cry, but it's so
good.
SPEAKER_04 (29:42):
That's a good one.
I have one that I sing at thetop of my lungs.
Oh, who sings it?
It's called the breakup song,but it's about breaking up with
fear.
Fear, you don't own me.
Um Francesca Best.
Something like that.
Yeah.
(30:02):
Love that.
I'll have to listen to it.
Yeah, I'll send it to you guys.
But um how if I know people thatI talk to are always saying,
like, how are you doing?
How are you managing?
You know, just you'reeverywhere.
Like how are you managing to doit all?
SPEAKER_05 (30:22):
I feel lucky.
I feel I feel like it's unfairsometimes that I'm as active as
I am.
And at the same time I curse thecrooked, slow steps that I take.
And I wonder what tomorrow willbe like.
(30:47):
But as far as how do I do itall, I just get up every day and
put one foot in front of theother until the day comes when I
can't.
And I think there's a light onme as to how busy I am because I
(31:13):
have this music career.
But that's what all of you aredoing.
That's what everyone is doing.
They're putting their feet onthe floor for as long as they
can and getting up and doingwhat it is that you love and and
(31:36):
I applaud you all for that.
You know, one of my favoritephotos of myself is jumping on
stage and tandem with Clay Cookand we have our guitars like
this, and I miss that.
(31:56):
I miss uh running across thestage and jumping.
But you know, I haven't had toleave the stage.
Yeah.
So you know, um, I'm blessed.
I'm too blessed to be depressed.
SPEAKER_08 (32:18):
I like it.
I like it.
I like that.
Yeah, having a purpose and apassion will definitely keep you
going.
Yeah.
SPEAKER_06 (32:27):
Do people like treat you differently or like is there
what's something that's like Idon't know, you've found to be
different as far as like yousaid, Lori, people, how you
doing?
What's going on?
Like that type of stuff.
And it's kind of like, can wejust be normal?
SPEAKER_05 (32:44):
I imagine that everyone gets that.
SPEAKER_06 (32:47):
Yeah.
Yeah.
SPEAKER_05 (32:49):
In this room.
SPEAKER_09 (32:51):
Yep.
SPEAKER_05 (32:53):
And I want to wear a t-shirt that says, if I need
help, I will ask.
Yes.
SPEAKER_09 (33:08):
Yeah.
SPEAKER_06 (33:08):
And add in there, not drunk, I have ALS.
SPEAKER_05 (33:14):
That's a good one, too.
But the band has a company thatum shuttles us around to the
airports and all that.
And I've got this one guy thatwe use a lot, and um he's almost
family.
And he puts on and takes off mybackpack.
(33:39):
And I'm like, Mo, leave mealone.
And and yeah, I got that foryou, I got it.
And I'm like, you're gonnafucking knock me over.
SPEAKER_08 (33:49):
Yeah, yeah, yeah, yeah.
Like don't.
I mean, if it let him knock youover, then he won't do it
anymore.
Then he might end up with ablack eye like I'm breaking the
elbow.
That's why I said it's safe.
If you got something to fall on.
Yeah.
(34:09):
Yeah.
SPEAKER_05 (34:10):
Yeah.
People are always trying tohelp, and my my band knows
better.
SPEAKER_09 (34:18):
You know.
SPEAKER_05 (34:19):
Um, and I'm the first one to say, Coi, carry
this guitar for me while I getmy backpack.
And he's like, Great, you know,um, this chair sucks, hold me
up, you know, that kind ofthing.
The the chair I'm in right nowis really easy.
(34:41):
But if I'm seated on a couch andwhere my feet are higher, and
you know, I have and there's noarms, I'm gonna be like, hey,
help me out.
SPEAKER_06 (34:56):
Yeah.
But yeah, I have a friend whosays to me, at first she was
like, All right, I'm I'm gonnawatch you and just see when you
need help.
And I was like, that's great.
Like she was like, I'll wait foryou to ask for help.
And then after a while, likefurther into the diagnosis, it
was like, This is actuallytaking up more of my energy,
(35:16):
which they say not to do.
So can you just actually do thisfor me?
But she was good.
Like she waited for my directionto not be like because she knows
it's annoying.
SPEAKER_05 (35:29):
Yeah, I've fallen more times by people trying to
help me walk, and now I just sayif someone grabs my arm, I'm
like, go in front of me, and I'mgonna hold your shoulder, and
I'll tell you if I'm if you'regoing too fast.
SPEAKER_09 (35:51):
Yeah.
SPEAKER_05 (35:52):
But that whole I got you, and it's like um yeah, I'm
gonna topple.
SPEAKER_08 (36:03):
Yeah, yeah, yeah.
My family's been pretty goodbecause I'm the third, so it's
not their first rodeo, but myfriends are all nurses, and
that's in their mind just toautomatically help.
And it caused a couple fights inthe beginning, but now they're
(36:24):
good.
They they know wait until I ask,which I hardly ever do because
I'm very bad at asking for help.
I've been a very independentperson, but they're getting
better.
I'm getting better.
SPEAKER_06 (36:38):
Yeah, I feel like that's one of the criteria get
ALS is you have to be liketoxically independent, so then
so then you can't do that now,now this is your punishment.
Okay.
SPEAKER_04 (36:52):
Yeah, I see that.
Yeah, everybody here has reallyput themselves out there in our
community and beyond to educatepeople about ALS and the
importance of finding a cure andthe importance of having people
come into our world to supportfinding a cure.
(37:14):
What do you think it is withinyou that that has made it
possible for you to do that witheverything else that is going on
in your life?
Like, how one thing I rememberyou saying in an interview
earlier when I asked you how didyou decide to go public, and you
(37:37):
said if the girls were to askyou, Dad, why didn't you do X or
whatever?
Like, are your daughters amotivation for you?
SPEAKER_05 (37:50):
Yeah, we just wanted to be able to tell them that we
have done everything that wepossibly can.
And for me, that meant usingthis rock and roll platform to
our benefit.
And to others, it means jumpingin on one of the other amazing
(38:17):
501c3s out there already doinggood work.
And for us, we felt like therewas a huge community that
otherwise wouldn't have knownabout any of this except from
our perspective.
(38:38):
So you know, we've been veryblessed to have granted over
four million dollars in threeyears for programs.
We support Healy, we support ALSTDI, and we needed our own
(38:58):
company, our own 501c3, to beable to custom pick.
You know, we support Duke andHouston Methodist and all these
programs that we believe in.
We wanted the freedom to be ableto explore.
(39:21):
Everyone gets a little one-sidedin their vision because they're
it takes everything.
Yeah, they will have success inan area and throw their um
efforts into that.
And that's amazing, but wewanted to be able to pivot.
(39:46):
Yeah.
So um that's why I'll want tocure that.
SPEAKER_04 (39:50):
Yeah.
I know you have to run.
Um, I want to ask about Harmonyfor Hope, and I'll let you go,
and then I'll wrap up with thegirls.
So talking about uh Hop on acure, your second gala is coming
up in Atlanta on October 18th.
(40:11):
So I'm really excited to go backagain.
Same format, singer, songwriter,where everyone on stage gets a
turn to play a song and liketalk about the music or talk
about how the song was born.
I think that's really a cool,unique experience and a great
(40:34):
way to raise funds for research.
So what are you excited aboutthis year for that?
SPEAKER_05 (40:40):
Well, all the singer songwriters are world-class, but
there's a fun thing that we'redoing this year with a guy named
Eric Pasley, and Eric takes up abunch of songwriting ideas and
puts them in a hat.
(41:01):
So you write down you know,write a song about meeting the
love of your life on a subway.
You know, and he'll he'll belike some way the subway you
know made us fall in love today,and like he I mean that's stupid
(41:30):
or whatever.
SPEAKER_04 (41:30):
Yeah, yeah, yeah.
I got it.
SPEAKER_05 (41:32):
He will take it and make it into this badass song
and probably he's got his craftso owned in.
And the cool thing is if heactually I I need to ask him how
many times someone has likebought the song.
SPEAKER_01 (41:57):
Like oh yeah.
SPEAKER_05 (41:59):
If it becomes a Blake Shelton hit, yeah, then
you're a writer.
So it could be just anentertaining night, or it could
be retirement.
SPEAKER_09 (42:16):
Yeah.
SPEAKER_05 (42:17):
That's so cool.
So that's fun, and we alwayshave an amazing menu, and we
we've got great sponsors andlots of great fun tonight.
Um after the gala, we're gonnado karaoke with the performers.
SPEAKER_04 (42:41):
Yeah, that's gonna be fun.
Yeah.
Well, I will drop a link, uh, ofcourse, in the show notes.
Hopfunnycare.org.
Tickets are available,sponsorships and benefits uh are
available.
So if you're interested inchecking that out, Hop I know
you gotta go.
So what are you dying to tellus?
SPEAKER_05 (43:03):
I'm dying to tell you that I love Lori Carey.
Oh heart right back.
I'm dying to tell you that herALS story is comprised of a
(43:24):
bunch of Amazon badass queens.
SPEAKER_09 (43:29):
Oh yeah.
SPEAKER_05 (43:32):
We love that.
Thank you guys for letting meinvade your space.
SPEAKER_04 (43:36):
Oh, thank you.
Thank you.
Thanks for stopping by.
Thanks for stopping by.
Hey, and I'll see you in acouple days at the Joan Martin
Foundation.
SPEAKER_05 (43:46):
Hey Kelly, um, you guys can all text me whenever
you want and send your name withit.
And um if you want to come toFriendway, let me know.
SPEAKER_04 (43:57):
Oh yeah, I'll text you.
Thank you.
Enjoy the content.
All right.
See you guys.
Okay.
Wasn't that fun?
SPEAKER_07 (44:08):
Yeah.
SPEAKER_01 (44:08):
That was such a cute surprise.
SPEAKER_04 (44:10):
I loved it.
I asked him about hey, do youwant to come on and do this with
some ladies from her in thestory?
He said, absolutely, yes, let'sdo it.
SPEAKER_06 (44:21):
So love that's awesome.
Yeah.
SPEAKER_04 (44:28):
Okay, I'm trying to circle back and remember what I
was asking you all before Irealized you had to go.
Yeah.
What is it within you thatallows you all to put yourselves
out there in the way that youdo?
SPEAKER_08 (44:48):
Well, this honestly is the first type of interview
that I've done like this.
So I have been more in theresearch area of ALS.
I'm on the Less Turner board,uh, Betty's game board, and the
leadership of her ALS stories.
(45:10):
So I mean that that was takingup a lot of time, and I but I
know with my mom, my mom nevergot involved with the ALS
community, and it was soisolating.
Over the years, you know, shewouldn't leave the house because
she didn't want people to seeher.
She was very love you, mom, butshe was very vain.
(45:33):
And you know, when everythingchanges, you look a little
different, and I could start tosee that happening with me with
the weight gain and all thatstuff, and now with my voice not
being what it used to be, I'm Ialready live alone.
I'm by myself, I don't want tobe in isolation, so I think it's
(46:00):
time to start telling my storyand getting myself out there,
and I mean, all I ever see is myneighbor across the street.
I need to get around a littlebit more.
But now anytime someone asks meto do anything, I don't even
check in with myself anymore.
I'm just like, yes, let's go.
SPEAKER_04 (46:21):
Yeah.
SPEAKER_08 (46:22):
And we'll make it work when it's happening.
But isolation is not the way togo with this disease.
SPEAKER_04 (46:31):
No, no.
I mean, I've learned that overand over again, you know,
talking to so many people overthe last five years, the power
of community.
And every time I say that, I sayher A-list story is a perfect
example of that.
Man, it really is a gamechanger.
(46:52):
So I'm glad that you're willingto do that.
So, Kelly, what about you?
SPEAKER_06 (46:58):
Um, so I have a nine-year-old daughter.
She was seven when I wasdiagnosed, and she was at her
dad's for a few days.
And so I like wanted her to comehome because I just wanted to
hold her, but I also couldn'tface her because I just couldn't
stop crying.
So she didn't come home for likea couple of days.
And I had, you know, my pityparty.
(47:19):
I mean, well, well deserved pityparty.
I was, you know, upset.
I just like couldn't, I thoughteverything I was gonna do was
the last thing I was gonna, lasttime I was ever gonna do it.
And then thankfully for me, myprogression was slow.
So I'm like, okay, well, I guessI'm not gonna die in like five
months.
So I should probably like goback to a life again.
(47:41):
Um, so you know, it's like Ikind of looked at it.
I'm like, if I'm gonna just layin my bed and be miserable about
this, then like what's the pointof even living at that point?
So um, plus I'm very much anopen book, so I'm fine with
sharing my story and who I amand what I've been through and
what I'm, you know, sharing herALS story.
(48:03):
I mean, that group has saved somany of our lives.
I really feel that way.
Like there's the group just itis, it can be so isolating.
People don't know what you'regoing through, people don't
understand like what it's like,and they try to and they try to
be helpful, but people justdon't get it.
So just being able to go to thatgroup and just talk about
(48:26):
whatever it is, ALS related ornot, we just talk about
everything.
So having that is, I think thathas opened, I'd say most of us
probably up to a way that weprobably may have not been
before as far as sharing andtalking and being open.
And but for me, it was justlike, well, I'm not gonna lie to
(48:48):
her about what's going on.
I mean, I've kept things ageappropriate, but she's a big
part of it.
Like she helps me with things,she helps me get dressed, she
helps me, you know, do my hair,things like that.
And so I'm not gonna ask her tokeep it to herself.
Like you can't say what's goingon with mom, you know?
(49:08):
So we just, I mean, she wouldn'tanyways.
She sings like a canary.
But she was really like my push.
And then it was like, okay, nowI'm I'm gonna do all the things
I can while I'm here, especiallybecause I have so many girls, so
many sisters that can't speakfor themselves, can't take
themselves to a doctor'sappointment, can't take
(49:30):
themselves to like a researchthing and they're relying on
somebody else.
So I looked at it and I waslike, well, while I can still do
these things for myself, I'mgonna do them for the people
that can't and for myself.
So that was like really justkind of how what pushed me and
and what has guided me throughthis, I'd say.
SPEAKER_04 (49:49):
I love that.
And I'll tell you, my sons were11 and 13 when I was diagnosed.
And um, you know, after thesecond opinion, we told them
what was going on.
But I think it's been reallyhealthy for them, you know, over
the years.
And I've seen both ways.
(50:10):
I've seen uh families that havenot told their children what is
going on, and uh it makes itreally hard, you know, because
no matter what, as it feelsunfair to them, and you know,
and some mom because they'restill there living it.
Yeah, and you know, as a mom,kids know they know all, they
(50:32):
know all.
Yeah.
SPEAKER_06 (50:35):
She's said to me too sometimes, sorry, she said to me
too sometimes, she's like, Mom,when your other hand doesn't
work, I'll help feed you.
And we've never talked aboutprogression, but she just
intuitively is like, I'll helpyou do this when you can't do
it, which is really interestingbecause we've never spoken about
progression, but she sees it.
She sees it.
(50:56):
So it's yeah.
Yeah.
SPEAKER_04 (50:58):
Yeah, it tells you right there.
SPEAKER_06 (51:00):
They know.
SPEAKER_07 (51:01):
Yeah.
Mira, I think mainly I was justalways kind of struggling with
like trying to figure out mypurpose after diagnosis.
Um, and I think that once I likejoined her ALS story and met all
the girls and kind of saw theexample of all the advocacy and
trying to make a change, I thinkthat just kind of drove me to be
(51:23):
like, maybe I should share mystory.
Maybe I maybe make it a littlemore normal, unless I just feel
like people just, you know,think you're gonna die and are
like you're gonna be gone inthree to five years.
And I want there to be moreknowledge of all the different,
you know, age and gender and howlong you can live with it and
all that.
And I know that I'm kind of aunique unique case, so I just
(51:47):
felt like I could spread alittle more awareness and um
make maybe a tiny difference.
I want some sort of difference,yeah.
SPEAKER_04 (51:54):
And you are, and you are for sure.
Yeah, yeah.
And that life can go on, youknow.
Abilities might be different,but um you still have a purpose,
you still have a lot to give,like everyone.
Even if you lose your voice, youhave a voice that's powerful.
So what is one dream that youare still determined to chase,
(52:21):
even if it looks different?
SPEAKER_07 (52:24):
I want to keep traveling.
I love traveling, and so I wantto keep doing that.
Yeah.
SPEAKER_08 (52:30):
I've never been a train chaser, so I I just wanna
enjoy every day, every moment,and make a couple people smile
along the way.
That that is what I want.
Yeah, not really that you know,I I world peace.
I'll I'll do that one.
SPEAKER_04 (52:53):
We'll take it for sure.
Kelly.
What about her ALS story?
Your group.
Is there a goal or somethingthat you all talk about that you
would like to accomplish as agroup?
Kelly.
SPEAKER_06 (53:12):
We like talk about making a compound for all of us
to live in together.
Um, and I think that's a pipedream, although I we've got a
lot of determination.
So I don't know.
Um, but just it because there'sso it's so hard finding good
caregivers.
The stories we hear from ourfriends are just horrific, the
(53:35):
things that they go through.
And so, like if we could find aplace and have hire caregivers
and have everyone together, likethat would just be amazing.
Um, one thing that I feel islike realistic, at least for me
being involved in timing-wiseand things like that, is and
resource-wise, um, having ourkids that are, you know, as they
(54:00):
get older, having them be ableto um have contact with each
other so that when like theirparents pass and things like
that, they have people that theythat know what they went through
and like their moms knew eachother and things like that.
Um, so that's something thatyeah, yeah.
It's and it's like hard to hardto think about, hard to talk
(54:24):
about, but like that's somethingwe've mentioned in the past.
Like, hey, we should try to setsomething up with each other so
that our kids can can have eachother, like just like we have
each other.
And now it's okay.
SPEAKER_04 (54:40):
I cry all the time.
It's fine.
Well, it there is something tobe said, you know, like when
people live with ALS, when wemeet each other, there is an
instant bond because we get it,yeah.
And so it would be the samething for your children, like
and it might not be like aformal bereavement group, but it
(55:04):
would just be someone thatunderstands, you know, in a
friendship to be born, justbecause they understand.
So I think that's really cool.
Mira, you mentioned that you'renot gonna give up traveling.
Do you have any trips planned?
SPEAKER_07 (55:22):
Um, yes.
I think the soonest one rightnow is only I have never been to
Florida, and I've I've been to alot of states, and so that one's
kind of one that I've neverseen.
So I mean my friend want to goto Florida next April.
Not anything soon yet.
SPEAKER_04 (55:38):
I want to go to beach.
Ah, absolutely.
Nice.
Well, you all can look at LasVegas and we can get in the
sphere.
SPEAKER_07 (55:46):
I would love to see the sphere.
I've never been.
It looks so fun.
SPEAKER_04 (55:49):
Yeah, it's from what I heard, the show is gonna be
amazing.
Uh, it's gonna be fun.
Okay, and thank you all forbeing here.
I really appreciate you fortaking the time and coming on
and chatting.
It was fun.
Um, Tina, what are you dying totell us?
SPEAKER_08 (56:09):
I'm dying to tell you that even though I'm
terminal, I am not throwing inthe towel.
I'm going to live every day andenjoy every moment.
And if I say anything thatoffends you, that's your fault.
SPEAKER_04 (56:29):
I love it.
Okay.
Kelly, what are you dying totell us?
SPEAKER_06 (56:34):
I am dying to tell you that people that I've met
with ALS are some of thefunniest and happiest people
I've ever met in my life.
And I think everyone could takea page from our book.
SPEAKER_04 (56:47):
Yeah.
And my husband always says that,like, they're always in the
nicest people, you know, too.
Like, oh wow.
SPEAKER_06 (56:57):
We got a lot of dark humor too, gets us by.
I'm dying to tell you that darkhumor is what saved you.
SPEAKER_04 (57:06):
I believe it.
Yeah.
Okay, Mira.
What are you dying to tell us?
SPEAKER_07 (57:12):
I'm dying to tell you that there is still life
after ALS.
We're we're all laughing andliving and having game nights
and the girls' nights and goingout, and we're not we're not
just hiding out and doingnothing.
We're we're living our lives.
SPEAKER_01 (57:29):
Yeah.
SPEAKER_07 (57:30):
Aww.
SPEAKER_04 (57:30):
Thank you.
Thank you all again for being apart of this.
My first happy hour edition.
Thank you for your time.
And uh, being in touch.
Okay, all right.
Thanks.
All right.
Bye everyone.
Um, thank you all for beinggreat ALS advocates.
(57:53):
To my listeners, I'm gonna putthe links that I mentioned.
The link to Hop on a cure.
Uh, if you're interested inchecking out Harmony for Hope
coming up in the Atlanta area onOctober 18th.
Uh, I'll put the ticket linkthere to make it easy peasy.
(58:16):
I'll also put the link to herALS story so that you can follow
them, see what they're up to,and support these young ladies.
If you are not connected onsocial media, yeah, you can do
that.
I'm pretty much everywhere.
All at I'm Dying to Tell YouPodcast.
(58:41):
So Facebook, Twitter, Instagram,LinkedIn, and TikTok.
All at I'm Dying to Tell YouPodcast.
I appreciate you sharing thisepisode if you think there is
someone that can be blessed bylistening.
(59:04):
So until next time, know you areloved and not alone.
Thanks for listening.
SPEAKER_03 (59:19):
Thank you for listening to our mom.
Make sure to visit her websiteat I'm dying to tell you
podcast.com, where you'll findphotos and show notes about this
episode.
If you like the show, pleasesubscribe to the podcast and
share it with your friend.
Thank you.
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