May 5, 2025 • 49 mins
Here, Elin Adcock shares her powerful journey through her husband’s ALS and frontotemporal dementia (FTD) diagnoses—and how she’s now leading the charge to support families facing the same fight. When Elin's husband, Larry was diagnosed with both ALS and FTD, her world changed forever. In this episode, Elin shares how she navigated the overwhelming challenges of caregiving through two devastating and progressive diseases—often without a clear roadmap or coordinated support. After her husband’s passing, Elin turned her grief into action, becoming a fierce advocate for families facing similar dual diagnoses. Her story is one of love, resilience, and the power of transforming personal loss into lasting impact. Whether you're a caregiver, healthcare professional, or someone seeking hope amid hardship, this conversation offers insight, inspiration, and a call for greater awareness. Thanks for listening and sharing with a friend. Hugs, Lorri!
Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_03 (00:00):
Hey, I'm Paul.
SPEAKER_04 (00:10):
And I'm Christian.
SPEAKER_03 (00:11):
Welcome to I'm Dying to Tell You.
Inspiration shared by our momwho is dying from ALS.
SPEAKER_04 (00:16):
There is 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_03 (00:24):
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_01 (00:50):
Hi, this is Lori, your host of I'm Dying to Tell
You.
Thank you for being here.
So if you know ALS or you knowFTD, frontotemporal dementia,
you know how incrediblydifficult and heartbreaking both
(01:12):
of those are.
But can you even imagine?
Living with or having the personthat you love, living with both
of those at the very same time.
That's what my guest today,Ellen Adcock, went through with
(01:33):
her precious husband, Larry, whohas since passed away.
And what she is doing now issuper incredible and inspiring.
to give back to other peoplethat are going through exactly
what she is.
So we're just going to jumpright in.
(01:54):
And I'm going to connect withEllen from Navarre, Florida.
And we're going to talk abouther experience and what she is
dying to tell you.
Okay, let's go to our chat.
SPEAKER_00 (02:13):
So
SPEAKER_01 (02:17):
today that we're talking was the anniversary of
my mom passing from FTD.
And so it's been three years.
And man, it's just, yeah, it'seven hard to like think about it
because of my mom.
SPEAKER_02 (02:34):
It's a very tough conversation.
And I talk to people about FTDall the time.
Yeah.
I'm on support calls all thetime and speak to people about
the situations that they'regoing through and can maintain
my composure and can keepfocused on solution-based
answers and support thememotionally.
When I go back into my ownjourney, it's difficult.
(02:59):
It's been two years and I'vereally wrapped myself in
advocacy.
Yeah.
really protected myself and allof the things I can do for other
people being in service to otherpeople really helps me get
through.
Yeah.
But I've noticed in the last, Idon't know, six months or so
(03:19):
that hard outer shell is reallystarting to soften up.
And a lot of the feelings arebubbling up to the surface a lot
more grief is funny that way.
Yeah.
I don't really know when we'regoing to get hit by things or
how it's going to happen or,but, uh, It's an ever-changing
journey.
Yeah, I imagine.
(03:40):
You know what?
When we're doing this, let meunplug Alexa so she doesn't
sound off.
Oh, okay, great.
Yeah, my house is fullyinterconnected.
One of the things that we did tohelp us through Larry's journey
was I set up Alexa.
I set up Echo Show.
I have cameras everywhere.
They're on the doors announcingwhen somebody goes out through
(04:03):
the door.
at the driveway, you know, inthe backyard, everywhere, so
that it was a big help to us,keeping track of a full-grown
mobile adult to the impulsecontrol of a toddler.
SPEAKER_01 (04:18):
Right, right, right.
No, I get it.
We did the same.
And it's funny.
It brings up a funny memory withmy mom.
Tell me.
I have a video.
I'll send it to you if I canfind it.
And we are trying to teach herhow to say, Alexa, Call Lori.
Alexa, call.
Oh my gosh.
(04:40):
She cannot.
And then we wrote it down, youknow, on a big, we wrote it big
on a piece of paper.
Oh, and she just laughed and welaughed, but we cannot, it
didn't even begin to workbecause she couldn't, you know,
we couldn't get her tounderstand.
I have a similarly funny
SPEAKER_02 (04:59):
story.
Larry, um, became obsessed withtickling our cat's tummy.
He's an indoor outdoor cat.
He's very aggressive.
He's very, you know, controllingof himself.
And Larry would pick him up andstretch him out like a guitar
and tickle his tummy.
And he would start to howl.
(05:20):
And it sounded kind of like ababy crying.
So I programmed our device sothat when it heard a baby
crying, it would say, Larry,please leave the cat alone.
Oh,
SPEAKER_01 (05:30):
my
SPEAKER_02 (05:31):
gosh.
That's great.
I have started watching.
I've been binge watching Callthe Midwife.
SPEAKER_00 (05:38):
And babies
SPEAKER_02 (05:38):
are being born all the time on that show.
And so every time a baby isborn...
The baby is crying and I hear,Larry, please leave the
SPEAKER_01 (05:47):
cat alone.
Oh, it's still there.
I love it.
I
SPEAKER_02 (05:53):
love it.
I'm not disabling that.
I'm leaving
SPEAKER_01 (05:55):
that.
Yeah, that's great.
UNKNOWN (05:57):
Every time because I see him playing the cat guitar
every time.
SPEAKER_01 (06:02):
Oh, absolutely.
Hey, I read that you and Larrywere childhood sweethearts.
And then you reconnected lateron in life.
Tell me a little bit about that.
SPEAKER_02 (06:13):
We sure did.
So Larry and I met here in theNorthwest Panhandle of Florida
on Eglin Air Force Base when hewas 10 and I was eight.
SPEAKER_00 (06:23):
Our
SPEAKER_02 (06:24):
fathers were in the same squadron here.
And I got the typical, we wentto the same elementary school
and on the playground one day hesent me a note that said, no,
roses are red, violets are blue,sugar is sweet, and so are you.
Will you be my girlfriend?
Yes or no?
SPEAKER_01 (06:44):
Oh, nice.
Nice.
SPEAKER_02 (06:46):
And I said, and I took the note in my pocket and I
said, I've got to think aboutit.
He's like, okay.
My home and, you know, aboutdinner time, my mom's cooking
dinner in the kitchen.
And back then, you know, thephone, the family phone was in
the kitchen.
And so I had to call him infront of her and I was speaking
(07:07):
very cryptically.
And I called and I asked ifLarry there and his mom, Jeannie
said, yeah, let me go get him.
And he came to the phone and Isaid, yes.
And he said, yes.
What?
And I said, um, the note lookingat me, you know, side eye.
He says, oh, okay, cool.
(07:29):
See you in school tomorrow.
Oh, you know, then we wereboyfriend and girlfriend from
that point forward.
But, um, We moved to Germanyafter that.
His parents moved to Germany.
We all stayed in touch.
Our parents were very close withone another.
And one year he would be tallerthan me.
And the next year I would betaller than him.
And we just kind of grew uptogether that way.
(07:52):
But when we became young adults,we were in two different states
and you always had a girlfriendor I always had a boyfriend and
the timing was never right.
So I married in my mid twentiesand Larry never married.
And when my first marriage beganto fail or when it had failed,
(08:13):
my sister knew it had failed.
She got us both together at abirthday party of hers and we
saw each other and he was just agog.
And I was like, wow, this isLarry.
This isn't Larry, you know, butI was in the middle of a divorce
and had to focus on that.
And About nine months later, onValentine's Day, I got two dozen
(08:37):
roses at my office.
And I thought, I was thinking itwas my ex-husband who had sent
me these roses, trying to makeup with me after, you know, it
wasn't him.
It was Larry, who knew it wouldbe my first Valentine's Day,
roses.
And we talked every night afterthat for about six months.
(08:58):
And Finally, when he says, youknow what I'm going to do?
I'm just going to move to Texasbecause he was in Georgia and I
was in Texas at the time.
I'm going to move to Texas andI'm going to court you.
And I said, Larry, I've got twochildren.
I've watched my girlfriends whenthey got divorced and what their
children went through.
I'm not going through that.
If you're just planning ondating me because I'm not going
(09:20):
to put my kids through that.
Sounds like a marriage proposal.
SPEAKER_00 (09:26):
Wait, wait, wait.
That's not what I meant.
SPEAKER_02 (09:32):
Two weeks later, he had sold whatever he couldn't
pack into his little Honda Civicand moved to Texas and found a
place to stay and waited for me.
Wow.
We were married for 20 yearsbefore he packed.
Oh, that's amazing.
So I knew Larry from the time hewas eight until, yeah.
(09:53):
Yeah.
SPEAKER_01 (09:54):
Oh, my
SPEAKER_02 (09:55):
gosh.
I really, really, really knewhim, and he really,
SPEAKER_01 (09:58):
really, really knew me.
Yeah.
Oh, for sure.
Tell me about when came first,ALS, FTD.
FTD came
SPEAKER_02 (10:08):
first.
FTD definitely came first.
There were a couple of yearsthat, you know, it just seemed
like Larry was losing interestin everything, in the family, in
us.
We used to marvel at how wecould– sit in a car together and
not talk.
We didn't have to talk.
We didn't have to conversebecause we just had this
(10:29):
communication going on.
We could work on projectstogether all day long and didn't
even really have to havecommunication.
But there came a time when therewas no nonverbal communication
either.
Like he was just not there, notpresent.
What's going on?
SPEAKER_00 (10:43):
It
SPEAKER_02 (10:44):
almost felt like he was losing interest in me and
our family.
He would come home and he wasexhausted.
in the middle of the workday andhe would take a nap and then he
would grab a sandwich and thenhe would go back to work.
There were a lot of signs as Ilook back that probably extended
back five years before Irealized that there's really
(11:07):
something wrong.
But we thought he was depressed.
His mother had passed.
He'd had a lot of, we'd had alot of loss over the course of
the five years before he diedwith the loss of my mother and
my father and his mother and Youknow, we moved from Texas to
Florida and gave up all of ourfriends so that we could be
closer to his family while hismother was ill.
(11:29):
And I just thought he wasdepressed.
But the aha moment came when hehad decided he was going to quit
working in the delivery job thathe was working at.
He delivered doors and windowsfor a local lumber yard.
And he was going to go back todriving a school bus, which he
had done previously and heloved.
(11:49):
because it was going to be lessphysically demanding on him.
And again, we thought he wasdepressed.
We just thought he was gettingolder.
Delivering doors and windows isvery hard work.
He was training for the bus job.
And one morning at about 11o'clock, he came home and said,
well, I've been fired.
And I said, what do you meanyou've been fired?
(12:10):
Well, I was telling my boss, youknow, about the backpack that I
was going to pack.
bring with me on the bus i'vegot my brass knuckles i've got a
box cutter i've got ascrewdriver i can use as a
weapon in case the kids attackme and it was like like the
shutter of a camera just zoomingin on his face i mean that's the
(12:33):
visual that i have and just thisparadigm shift in my brain of
there's something wrong in yourbrain
SPEAKER_00 (12:39):
this
SPEAKER_02 (12:41):
is not just being depressed there's something
really wrong with your brain andI don't know what it is, but I'm
going to figure it out.
Then came the internet searchesand the symptoms and what could
this be?
Could this be Lyme disease?
Could he have a brain tumor?
I never thought I would bepraying for a brain tumor, but I
did, but it wasn't.
(13:02):
And I came across PICS disease,which was the original name for
FTD.
At the same time that Alzheimerwas researching Alzheimer's
disease, In the same facility, adoctor named Pick was
researching a similar disease,and it was named Pick's disease,
where the frontal and temporallobes were damaged.
(13:24):
Not in the same way thatAlzheimer's, which happens in
the back of the brain, and thefeatures were different.
Memory is not impacted, butlanguage can be impacted.
Impulse control is impacted.
Executive function, which is theability to plan out actions.
Think about Alzheimer's.
it takes to put together apeanut butter sandwich.
You and I are like, yeah, let meput together a peanut butter
(13:46):
sandwich and boom, I'm eatingthe sandwich, but you have to
locate the bread.
You have to locate the peanutbutter.
You have to locate the jelly.
You have to locate the knife.
You have to locate a plate.
You have to prep the bread, youknow, all these steps.
Well, if you don't have goodexecutive function, you can't
follow those steps.
SPEAKER_01 (14:05):
Yeah.
SPEAKER_02 (14:05):
And we had seen a lot of those symptoms in him.
He was a carpenter.
He built things for us.
He, you know, worked on cars.
He took engines apart and putthem back together again.
And I was seeing evidence of hisinability to do those things and
was just really confused bythem.
SPEAKER_01 (14:22):
So how long did it take you to get a diagnosis of
FTD after you started seeingthese changes?
SPEAKER_02 (14:31):
Yeah.
So the job loss was in October.
We struggled.
This was just after October.
you know, COVID and doctor'soffices were just coming back
online.
It was October of 2021.
And I couldn't get a doctor'sappointment anywhere in town.
We live in Navarre, Florida,which is in the panhandle.
And there are no specialists.
(14:53):
There are no clinics.
There's nothing within fivehours of us.
So I was struggling to find aneurologist that we could get an
appointment with.
I ended up because my familylives down in Tampa.
finding a neurologist that wecould schedule an appointment
with down there.
And that was January.
And we did the CTs and we did anMRI and a number of other tests.
(15:17):
And that neurologist was leaningtowards Alzheimer's and was just
thinking that Larry was havingmemory problems.
He didn't really pay attention.
I didn't know enough to reallysend something in advance, but I
was saying things to him.
Without saying them in front ofLarry, because FTD patients can
get really upset
SPEAKER_00 (15:38):
if
SPEAKER_02 (15:38):
they feel like they're being undermined by the
people that are in theappointments with them.
So I was trying to give signalsto this doctor and he wasn't
picking up what I was puttingdown.
SPEAKER_00 (15:47):
And
SPEAKER_02 (15:48):
he thought Larry had Alzheimer's and was going to
send him home with Aricept,which was contraindicated for
FTD, which I knew from myresearch.
SPEAKER_00 (15:59):
And I was
SPEAKER_02 (16:00):
going to argue with him.
SPEAKER_00 (16:01):
But
SPEAKER_02 (16:02):
there was a voice in my head that just said, he
doesn't know.
You would be wasting your time.
So he sent us home with adiagnosis of MCI, mild cognitive
impairment.
And I went back to our PCP,which is really a physician's
assistant.
And she was the one who helpedus on our entire journey more
than anybody else and told herour experience.
(16:24):
And I said, I know this isn'tright.
I need to find somebody local.
I need to find somebody who'sgoing to help me get the
answers.
We finally got an appointment inMarch with a local neurologist
who saw us, set him up with aneuropsych exam, which was a
comprehensive over the course ofa couple of days, like eight
(16:45):
hours worth of tests.
They came back and they said,yeah, he has FTD.
So our diagnostic journey wasnot as long and involved as some
that I've heard.
SPEAKER_00 (16:57):
Yeah,
SPEAKER_02 (16:57):
yeah.
But then it was April when I wasstarting to notice he can't walk
a quarter mile with me aroundthe block.
SPEAKER_01 (17:06):
So then you started noticing the physical.
Right.
The physical changes and you'relike, does this have anything to
do with the FTP?
Right.
We thought at first he had COPD
SPEAKER_02 (17:17):
because he was having trouble breathing.
SPEAKER_01 (17:19):
Oh, yeah.
Makes sense.
SPEAKER_02 (17:20):
His mother had COPD and his father had COPD and...
He has a protein deficiency.
Well, yeah, it's a proteindeficiency.
I cannot tell you right now whatit was.
I can't remember the name of it,but it affects the liver enzymes
and it affects the ability forthe lungs to heal.
And so we saw a pulmonologist.
(17:43):
But at this point in April, Ithink it was that we were going
to the pulmonologist.
Larry was also losing theability to understand words.
And so he could not follow theinstructions.
breathing exercises oh yeah andit wasn't until really i want to
say it was july or august thatour neurologist was finally
(18:07):
listening to me and saying i'mseeing fasciculations i'm seeing
the muscle i'm seeing it in hisleg muscles i'm seeing it in his
arms i'm seeing it in his tongueum I think we need to test him
for ALS.
And he's like, I don't see it.
We would see it all the time.
I'm like, I lay in the bed withhim and the whole bed shakes all
night long.
Yeah.
He's asleep, but the bed isshaking.
(18:28):
It's his muscles, you know,doing that.
Right.
September of 2021 is when we gotthe EMG.
Okay.
And the neurologist said, 100%,you're also seeing ALS.
SPEAKER_01 (18:41):
Oh my gosh.
SPEAKER_02 (18:43):
I put him in hospice immediately.
And it was December that we losthim.
So that's how our journey was.
SPEAKER_01 (18:52):
So that was all within one year.
SPEAKER_02 (18:54):
All within one year.
SPEAKER_01 (18:55):
Yeah.
Wow.
Had it
SPEAKER_02 (18:57):
not been for the help of a support group, an FTD
support group and people that Isaw twice a week and was able to
discuss these things with, Iwould not have made it through.
SPEAKER_01 (19:07):
Yeah.
Oh, I can imagine.
Yep.
Yeah.
I mean, ALS on its own isterrible.
FTD on its own is horrific, butthe two together at one time,
yeah, it's really hard toimagine.
So didn't Larry even understandwhat was going on either with
(19:28):
his FTD or his ALS?
SPEAKER_02 (19:31):
Yeah.
So with FTD comes, there's adiagnosis of anosognosia with
many patients where they don'tunderstand that they're sick.
Everything seems normal to them
SPEAKER_00 (19:40):
and
SPEAKER_02 (19:41):
they just do not accept.
And Larry did not accept that.
that there was anything wrongwith his brain.
Did not feel that there wasanything strange about not being
able to walk the way he used to.
He just was powering through allof it.
I think, however, when he gotthe ALS diagnosis, he still had
enough comprehension and he knewwhat ALS was.
(20:03):
I think he really understoodthen at that point that he was
sick.
I remember him becoming veryquiet and almost wistful, not
really crying, not reallyemotional about it, but he
seemed to understand that therewas something really wrong with
(20:25):
his muscles.
And that was why he was havingdifficulty breathing.
And his was a ball bar onset.
So really the breathing was theproblem.
He had difficulty swallowing.
I think he stopped really eatingfood in October and he was
living off of shakes for thelongest time.
Because of the FDD and notunderstanding that he was sick,
(20:47):
we couldn't take the normalinterventions.
We couldn't do a feeding tube.
He wouldn't accept any kind ofventilation in IV or otherwise.
And when I look back, I am soproud of his constitution.
He was always a really strongperson,
SPEAKER_00 (21:04):
had
SPEAKER_02 (21:06):
really strong faith, and was always very physically
strong.
And that held true all the waythrough to the end.
SPEAKER_01 (21:13):
Yeah.
Isn't it amazing how now youlook back and you can see all
these different things that werethere that you couldn't see
then, you know, because eitheryou're engrossed in his care or
you just don't know, like youjust didn't know.
(21:34):
There were
SPEAKER_02 (21:35):
so many moments.
UNKNOWN (21:36):
Yeah.
SPEAKER_02 (21:37):
I mean, because of the support group, I really had
a really clear understanding ofwhat was going on.
And I looked at his PET scansand his MRIs and all that so
that I could understand theareas where the damage was
occurring and equate that towhat I was seeing.
His inability to not onlygenerate speech, but understand
it at some point was all becausehe had lost so much matter in
(22:00):
the temporal lobes.
That's where our languagecenters are.
Because I had known him since hewas a child, As he began to
regress emotionally, I couldsee, oh, he's now 15.
Oh, he's now 12.
Oh, he's now 10.
Oh, he's older than 10.
(22:21):
Oh, he's my children were whenthey were five.
SPEAKER_00 (22:24):
And
SPEAKER_02 (22:27):
I could relate to him as if he were that age.
While at the same time, he's afully grown man.
With memories of our marriageand memories of our life
together and memories of all thethings he used to do.
That's a really weird dichotomyto have to navigate.
SPEAKER_01 (22:45):
Yeah.
SPEAKER_02 (22:46):
But somehow I did that.
I'm not quite sure where I gotto where we're talking about.
SPEAKER_01 (22:51):
Yeah.
SPEAKER_02 (22:51):
But I think I did a really good job with
SPEAKER_01 (22:54):
that.
Yeah.
What were some of the hardesttimes during that one year?
SPEAKER_02 (23:02):
Well, obviously losing him bit by bit.
The same way you do with an ALSpatient, you lose their mind bit
by bit too.
SPEAKER_00 (23:08):
The
SPEAKER_02 (23:11):
most painful thing though, and I don't think I can
describe it without beingemotional.
Yeah.
Okay.
He and I were the center of eachother's world.
And for him to lose interest inme, for him to not recognize how
(23:31):
special our relationship was,was very painful.
SPEAKER_01 (23:37):
It's personal.
Yeah.
Yeah.
Even though you had done yourresearch and you understand.
Yeah.
SPEAKER_02 (23:47):
But it still feels like a rejection, you know?
For sure.
It's very difficult in the faceof somebody saying, yeah, you're
okay.
When you were the center oftheir world.
Yeah.
That's really hard.
SPEAKER_01 (24:01):
And By the way, you're pouring every ounce of
love and energy and time thatyou have into that person to
turn around and feel that way.
And
SPEAKER_02 (24:19):
I knew, like your mind knows it's only because
it's sick, but your heart, it'sstill like a dagger.
Yeah.
In your heart.
And it's something that we dealwith all the time on our support
calls and try to wrap our brainsaround and try to love people
through.
Really, when you're on an FTDjourney, you can no longer
(24:41):
depend on that person to be whothey were for you.
When that person is your spouse,they're the person that you
normally went to when there wastrouble and they're no longer
there.
Right.
So you then have to find a tribeof people that you can rely on
and that will help you throughthose times.
(25:04):
And unfortunately, it's oftennot friends and family members
because they don't understand.
SPEAKER_01 (25:09):
Tell me about the group that you found and kind of
like what you learned from them.
SPEAKER_02 (25:17):
Sure.
So, and I'm still facilitatingthis chat.
UNKNOWN (25:21):
Yeah.
SPEAKER_02 (25:22):
Sharon Hall is a woman who started this chat nine
years ago.
Her husband, Rod, was diagnosedwith FTD and she started it back
before the ages of Zoom.
They were on a chat board kindof chat and they all get
together on this chat board fromaround the country and they
would talk via their keyboard.
And when Zoom came around, theyexpanded it to Zoom.
(25:45):
And many of the people that arestill on this chat were around
when she started it nine yearsago.
And she's a dynamo.
She's got her own podcast outthere, Talking FTD.
It's on Spotify and a lot ofother places.
But she approached it from avery scientific standpoint.
And she decided early on, well,we have this diagnosis.
(26:08):
I can fall apart and I can justlet the whole family fall apart.
Or I can take the bull by thehorns and I can learn as much
about it as I can.
And I can understand that it'sthe disease and it's not me.
And I can do what I can to makethings better.
For every problem, there's asolution.
And that's kind of the way sheruns this call.
(26:28):
We talk about any subject.
And with FTD, it runs the gamut.
I'm talking with a woman rightnow whose husband has not been
diagnosed.
They have four small children.
He has been very violent withthem.
he would not see a doctor.
Many with anosognosia will notadmit that there's a problem and
(26:50):
they won't go see a doctor.
And his behavior is really outof control.
And she's trying to get him seenby a neurologist and trying to
get him diagnosed while at thesame time, he's blaming her for
all the things that are goingwrong in his life.
He's lost his job.
He's lost his insurance.
They're going to lose theirhome.
(27:10):
Um, He helped theirseven-year-old over a second
story balcony one night just tobe funny.
When you end up with a situationlike that and there's no way of
looping that person in orlassoing that person in or
controlling their behavior,getting them diagnosed, getting
(27:32):
them on medications, whatrecourse is there but to abandon
that person and save yourselfand save your children?
SPEAKER_00 (27:42):
These
SPEAKER_02 (27:42):
are the kind of decisions that some FTD
caregivers have to make.
SPEAKER_00 (27:47):
Yeah.
SPEAKER_02 (27:48):
We all would like to say or like to think that when
our loved one is struck andstricken by this disease, that
we will take care of them.
Sometimes you can't.
What's the name of the group?
We call it the FTD chat and wehave it.
(28:08):
We advertise it on a number ofprivate groups, the FTD spouse
group.
the Association forFrontotemporal Dementia,
Frontotemporal Dementia 101, andALS FTD.
SPEAKER_01 (28:22):
And are those Facebook groups or are those
websites?
Those are private Facebookgroups.
SPEAKER_02 (28:29):
Okay.
And I can supply you with thoselinks.
Yeah, that'd be great.
In your notes if you'd like.
But you have to join the group.
You have to answer thequestions.
UNKNOWN (28:38):
Sure.
SPEAKER_02 (28:38):
They're very protective of those spaces.
We want to make sure it's eithera caregiver and on some of the
groups, the AFTD group is forpatients and caregivers.
Some of them are caregivers.
SPEAKER_01 (28:50):
For anyone that isn't at a point where they know
what they're dealing with withFTD, what advice or what
watchouts do you have?
that might connect someone'sbehavior with possible FTD.
(29:15):
You know, just what informationdo you have that can lead
someone to the right place?
SPEAKER_02 (29:21):
Sure.
So I found my information onYouTube and mostly webinars that
were put on by the AFTD, theAssociation of Frontotemporal
Dementia.
They have so many webinars outthere describing symptoms
describing clinical symptoms,describing the disease itself,
describing what's right andwhat's not right.
(29:44):
Perfect.
That seems to be the best placefor me to connect symptoms with
behaviors.
SPEAKER_01 (29:49):
Yeah.
SPEAKER_02 (29:50):
I can see that I'm on a lot of ALS groups as well,
and I chat with ALS and FTDpeople.
I think it's more prevalent thanwe know in the ALS community.
When I hear caregivers And theyall get frustrated, right?
There's a lot of work that'sinvolved in caring for someone
who's immobile and you have todo everything for them.
(30:13):
But I hear when I, whenever Ihear the words, he's so
narcissistic, he doesn't evencare about us.
She doesn't understand how, youknow, how her decisions are
affecting the family.
They are going out and spendingall of this money and we don't
have all of this money.
And, you know, When you hearthis, my mind always goes to FTD
(30:40):
because those are classicsymptoms.
It's not they're losing theirmemory.
It's not that they can'tremember where they put their
socks.
It's not that they can't dressthemselves necessarily.
SPEAKER_00 (30:51):
It's
SPEAKER_02 (30:53):
not their memory.
It's things like judgment andapathy and potentially not even
understanding how sick they are,as we've talked about with
anosognosia.
I think there's a lot ofpatients that are spared that,
but because both ALS and FTDoccur in the brain, it's not
(31:15):
like there's a firewall in ourbrain that says, hey, this area
is starting to degenerate.
Don't go over into this otherarea and degenerate as well.
I think that's why there's somuch crossover.
FTD can affect everyonedifferently, right?
Not everybody is running downthe street naked.
SPEAKER_01 (31:31):
Not everybody is hopping into the Corvette
SPEAKER_02 (31:35):
and racing around the neighborhood at 60 miles an
hour when it's a 20 mile an hourspeed limit.
Yeah, yeah.
SPEAKER_01 (31:42):
All different types of behavior, for sure.
Yeah.
So it's been a couple of yearssince Larry passed.
So looking back now, is thereanything that you would have
done differently
SPEAKER_02 (32:01):
sure i'm going to unequivocally say i have one
regret and it has nothing to dowith taking care of myself or
taking care of him or any of thethings like i i couldn't do any
better before i knew any betterright sure i'm not one to beat
myself up about things that idid not know um and the the
(32:21):
support group really helped methrough all of this the the This
is what I'm seeing.
What do you know about this?
And so they were able to give meinstant feedback and I was able
to act on it.
I was very responsive to theadvice that I was given.
I was very careful about caringfor myself physically.
I think I was in better shapeafter his diagnosis than I had
(32:44):
been in the 15 years before.
I made sure that I was gettingsleep.
I made sure that I was walking.
I made sure I was eatingproperly.
I stopped consuming as muchalcohol.
I'm not saying I no longer drinkalcohol because I'm out of
tequila, but it wasn't as often.
And I'm very conscious of here'sour schedule and everything was
(33:06):
regimented in our household.
Keeping things the same andkeeping on a schedule and
keeping things calm in thehousehold was instrumental in us
keeping them home.
Because FTD patients don't dowell with noise and they don't
do well with change and theydon't do well with a lot of
anxiety.
I was really able to tamp all ofthat down in myself and keep
(33:27):
really good control of all ofthat.
We kept our Christmas tree upfor two years.
I didn't take it down.
I didn't want anything to changeand have him be confused by it.
Yeah.
I think I made all the rightdecisions at all the right time,
again, only because I had theadvice of good people.
(33:50):
Yeah.
I got him on hospice right away.
They helped me monitor hisphysical condition.
They got me all of the equipmentthat I needed.
I had enlisted the people that Iknew were going to help me, not
the people I expected to helpme, but the people who offered.
And I accepted help wherever itwas offered.
SPEAKER_00 (34:09):
Mm-hmm.
SPEAKER_02 (34:11):
The only regret that I have is very difficult to
voice also.
SPEAKER_00 (34:14):
His
SPEAKER_02 (34:16):
last couple of days were difficult for him.
They were physically difficultfor him.
He didn't sleep.
I think he knew what was coming.
And I was very careful about themedications.
I didn't want to over-medicatehim.
But I had all of the medicationsnecessary to sedate him.
SPEAKER_00 (34:32):
And
SPEAKER_02 (34:34):
I didn't sedate him.
And he was conscious.
And his last 12 hours werereally difficult and confusing
for him.
SPEAKER_00 (34:45):
He
SPEAKER_02 (34:46):
was conscious when he died.
And I think he was really mad.
He was fighting to the end.
And that was very difficult towatch.
So I think the only regret thatI have is in not sedating him in
those last hours that I knewwere coming.
Anyway, it's a personal regret.
(35:08):
That's really the only one thatI have.
Yeah.
SPEAKER_01 (35:13):
When do you want people to know or to understand
when it's really like to haveboth ALS and FTD in your life?
Well,
SPEAKER_02 (35:25):
every patient is different.
For us, it was really difficultto make the decision to do
nothing.
There are things we can do forALS to slow progression.
There's nothing we can do forFTD to correct the condition.
SPEAKER_00 (35:40):
We
SPEAKER_02 (35:41):
can offer medications when someone's
aggressive or agitated orfrightened.
We can change the environment toaccommodate them so that they
are less afraid of what'shappening.
But With ALS, you have theoption, I can fight, I can get a
(36:04):
feeding tube, I can getventilation, I can decide to be
trached, I can get a wheelchair,I can do all these things.
SPEAKER_01 (36:11):
Right.
SPEAKER_02 (36:12):
It was really very difficult to do nothing except
love him.
SPEAKER_00 (36:18):
Yeah.
SPEAKER_02 (36:19):
And with an FTD patient, that is the most
important thing is to love them.
Yeah.
I see caregivers who arefrustrated because they've lost
their abilities.
They're not the same person.
I had someone tell me a coupleof weeks ago, but he's lost his
humanity.
And
SPEAKER_00 (36:38):
I
SPEAKER_02 (36:38):
said, but how are you defining his humanity?
Is it defined by the things thathe can and cannot do?
The things that he used to dothat he can't do any longer?
Or is it defined by the personthat he is deep down inside?
My husband never lost hishumanity, ever.
Not for one second did he losehis humanity.
SPEAKER_00 (36:58):
He
SPEAKER_02 (37:01):
continued to love God and he continued to love
people until the day he died.
We would go to McDonald's and hewould fist bump strangers,
everybody that he saw.
You know, he's giving a littlepiece of himself.
SPEAKER_00 (37:17):
It's
SPEAKER_02 (37:18):
more human than anything I know.
So even though somebody's losingtheir capabilities, they're not
losing themselves.
The only thing that's happeningis they're regressing to an
earlier version of themselves.
I watched the movie A CuriousCase of Benjamin Button about a
(37:42):
month after he died.
I don't know why.
It was foolish.
But That movie reallyillustrated the journey, the
mental journey that he wentthrough.
That was similar to the mentaljourney that Larry went through.
He just kept getting younger andyounger and younger, but that
doesn't eliminate his humanityor who he was.
SPEAKER_01 (38:02):
Yeah.
Right.
You know?
Yeah.
And he also didn't have achoice.
Yeah.
You know, in the condition thathe was in.
Yeah.
If you can say something toLarry right now, What would it
be?
I would tell him how proud I amof him.
SPEAKER_02 (38:24):
For all the reasons that I mentioned before.
I was proud to be his wife, butI was even more proud and
honored to be his caregiver.
And to see him home.
It was the hardest thing I'veever done.
You know, I was with my mom.
(38:44):
I was with my dad.
Those things are hard.
This was harder.
But I was really proud of himand really proud to be there
SPEAKER_01 (38:58):
for him.
SPEAKER_00 (39:00):
Yeah.
SPEAKER_01 (39:01):
Well, I want to say that I'm very proud of you.
I'm extremely proud of you tocontinue to be an advocate in
the ALS and FTD space.
I'm incredibly proud of you forhaving this conversation and for
(39:25):
you leaning into the communityand helping others that are
going through what you wentthrough.
Really, it's everything.
Thank you.
Thank you for that.
So speaking about honoring himAnd moving forward, you are very
active in the communities.
(39:46):
And tell me about like whatinspired you to continue in the
space where it always strikes meas so admirable of people who
have lost their person, but yetthey continue to live in that
space.
Sure.
Because they have a choice.
SPEAKER_02 (40:07):
Sure.
Everybody has the choice ofclosing the book and moving on.
I think it has to be my faith.
There has to be some reason thatthis happened.
And maybe it has nothing to dowith Larry.
And maybe it has everything todo with I was meant for a higher
purpose.
And if I can find any purposeout of his journey, maybe this
(40:30):
is it.
Maybe I was meant to help people
SPEAKER_00 (40:35):
on
SPEAKER_02 (40:35):
their journey.
And maybe that's a calling thatI've been ignoring.
SPEAKER_00 (40:39):
And
SPEAKER_02 (40:39):
maybe this is my chance to follow that calling.
SPEAKER_00 (40:43):
Is it
SPEAKER_02 (40:43):
hard?
You betcha.
SPEAKER_00 (40:46):
As
SPEAKER_02 (40:46):
you know, it's very difficult when we lose somebody
week after week.
It's difficult to listen to thestories and the heartache that
people go through.
But if we weren't there withthem and for them, they'd have
no one.
I didn't have to go through myjourney alone and I don't want
anyone else to have to gothrough it either.
SPEAKER_01 (41:07):
Yeah.
Even the one lady that you weretalking about, that you were
talking to, you know, if youthink about it, how lost and
confused you can be dealing withALS or FTD, but yet one person,
if you have one person that youcan bring clarity to, it's
(41:28):
really so worthwhile.
SPEAKER_02 (41:30):
We call it the hair on fire year, the year after
your diagnosis, when you'retrying to figure out what you
have to do and in what order youhave to do it.
And you have all these thoughtsoverwhelming you.
And if it's not for a group ofpeople saying one bite of the
elephant at a time,
SPEAKER_00 (41:46):
get
SPEAKER_02 (41:48):
your, you know, go see your elder law attorney, get
your durable POA, lock down yourcredit.
take care of your bank accounts,step by step, all of the things
that you need to do to not onlyset up your person to be cared
for, but it was also told to methat I'm a young woman.
(42:10):
I still had a young son who wasin high school.
And I thought when we first gotour diagnosis, well, I'll just
quit working and I'll cash in my401k and we'll take care of him
and we'll do...
And I had a very good friend whosaid, no, you cannot do that.
You have a future.
He does not have a future, butyou do have a future.
SPEAKER_00 (42:29):
And you
SPEAKER_02 (42:30):
have to protect that future at all costs.
Yeah.
So here's what you do instead.
Yeah.
I can't tell you how importantit is to lean on the advice of
others when you're scramblingfor a solution to the
impossible.
SPEAKER_01 (42:48):
Yeah.
Especially someone that's beenthere, you know, it's worth
everything.
SPEAKER_02 (42:52):
Precisely.
SPEAKER_01 (42:53):
Yeah.
So I just want to mention acouple of things that you're
involved in.
You are a part of I Am ALS in afew different ways.
One of them is the Artistry ofALS, which I think is an
amazing, amazing, amazinghighlight feature, whatever you
want to call it.
Can I tell you where that wasborn?
(43:15):
Yeah,
SPEAKER_00 (43:16):
sure.
SPEAKER_02 (43:17):
So Brandy Trigona, I don't know if you've heard her
name, is a woman who's livingwith ALS and was creating art at
the rate of more than one imagea day and posting it on social
media.
And I came across her stuff inone of the Facebook groups and
just loved her artwork.
And she and I began conversingand she helped me through
(43:40):
Larry's, you know, the hardestpart of Larry's journey.
She knew he was passing and shewas creating art specifically
for us.
And it's not just a piece ofart, but it's also what she
would say because she knew whatwe were going through.
And after everything happened, Ithought to myself, I want people
(44:01):
to see her artwork.
I want to put it out there.
I want to put together a book ofher work.
Like she's such an incredibleperson and this is such amazing.
It's not just the art, it's whatshe says.
And so Mandy Bailey, who livesright down the street from me,
Also an ALS advocate.
And you know her well.
Saw her artwork in a local copyshop that I had posted.
(44:24):
And said, hey, you know what wecould do?
We could have this virtual artshow.
We could invite all kinds ofartists.
And, you know, she's great forideas.
Oh, yeah.
That is where it came from.
Oh,
SPEAKER_01 (44:35):
my gosh.
Wow.
It was meant to be.
It was meant to be.
Definitely was
SPEAKER_02 (44:41):
meant to be.
SPEAKER_01 (44:42):
For sure.
And then...
Scribes of Strength.
Tell me a little bit about that.
So the Scribes
SPEAKER_02 (44:48):
of Strength is a group that was started by Juan
Reyes, another warrior.
One and only.
One and only.
And I joined his group a couple,well, shortly after Larry
passed.
It was in the spring of 2022, Iguess, 2023, spring of 2023.
And And where ALS caregivers andor patients can express
(45:16):
themselves through creativewriting and through essays.
It's another outlet other thanjust our social media.
It's a place to construct all ofour stories.
And so we meet once a week andtalk about our stories and post
things.
And it's scribesforals.com.
UNKNOWN (45:36):
Okay.
SPEAKER_02 (45:36):
is the website address if anybody wants to go
and read our writings.
SPEAKER_01 (45:42):
Okay, great.
And I'll put a link in the shownotes for that and a couple of
other things that we've talkedabout.
And the show notes can be foundon Facebook and the website,
both at I'm Dying to Tell Youpodcast.
So Ellen, I really appreciateyou sharing for not only all
(46:02):
that you're doing, but just whoyou are as a person.
Thank you so much for talkingwith me today.
But before I let you go, whatare you dying to tell us?
I am dying
SPEAKER_02 (46:16):
to tell you that you are not alone on this difficult
journey, that you can betransformed by this journey if
you let it in a very good way.
If you reach out for help, thereare people there who are going
through the same thing you'regoing through who will help you
get through it.
SPEAKER_00 (46:38):
People
SPEAKER_02 (46:38):
like me, people like Lori, like I am ALS, the
Association for FrontotemporalDementia.
It's too much for one person tohandle alone.
I know that we think we're theones that are going to care for
our people.
These diseases are much too big.
for one person to handle alone.
(47:00):
So please, lean on your tribe.
That's perfect.
Your tribe is not always your
SPEAKER_01 (47:07):
family.
Right.
It's always who you think it'sgoing to be.
Yeah, that's true.
That is true.
Yeah.
My sister and I tried to takecare of my mom during COVID in
her home.
I mean, we would cover her 24-7and we would split the shifts,
(47:27):
you know, Yeah.
But like you said, I mean,impossible for one person,
impossible for two people,sometimes even three.
So yeah, I'd love that.
Reach out to whatever communityis going to be helpful for you.
Absolutely.
It's great advice.
(47:50):
Thank you so much, Ellen.
I really appreciate appreciateand admire all that you are
doing and the strength and thecourage that you continue to
have and to help other familiesthat are going through ALS and
FTD individually and at the verysame time.
(48:12):
I know how painful both of thoseare and I cannot tell you how
much you are appreciated.
Okay, to my listeners, If you'relistening in for the first time,
I would love for you to stayconnected.
And you can get connectedanywhere on social media,
(48:32):
Facebook, Twitter, Instagram,LinkedIn, and TikTok.
See who's coming up and justcontinue to be a part of this
special community.
Okay, until next time, know thatyou are loved and not alone.
(48:53):
Thanks
SPEAKER_04 (48:58):
for listening.
Hey, I'm Paul.
SPEAKER_04 (00:10):
And I'm Christian.
SPEAKER_03 (00:11):
Welcome to I'm Dying to Tell You.
Inspiration shared by our momwho is dying from ALS.
SPEAKER_04 (00:16):
There is 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_03 (00:24):
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_01 (00:50):
Hi, this is Lori, your host of I'm Dying to Tell
You.
Thank you for being here.
So if you know ALS or you knowFTD, frontotemporal dementia,
you know how incrediblydifficult and heartbreaking both
(01:12):
of those are.
But can you even imagine?
Living with or having the personthat you love, living with both
of those at the very same time.
That's what my guest today,Ellen Adcock, went through with
(01:33):
her precious husband, Larry, whohas since passed away.
And what she is doing now issuper incredible and inspiring.
to give back to other peoplethat are going through exactly
what she is.
So we're just going to jumpright in.
(01:54):
And I'm going to connect withEllen from Navarre, Florida.
And we're going to talk abouther experience and what she is
dying to tell you.
Okay, let's go to our chat.
SPEAKER_00 (02:13):
So
SPEAKER_01 (02:17):
today that we're talking was the anniversary of
my mom passing from FTD.
And so it's been three years.
And man, it's just, yeah, it'seven hard to like think about it
because of my mom.
SPEAKER_02 (02:34):
It's a very tough conversation.
And I talk to people about FTDall the time.
Yeah.
I'm on support calls all thetime and speak to people about
the situations that they'regoing through and can maintain
my composure and can keepfocused on solution-based
answers and support thememotionally.
When I go back into my ownjourney, it's difficult.
(02:59):
It's been two years and I'vereally wrapped myself in
advocacy.
Yeah.
really protected myself and allof the things I can do for other
people being in service to otherpeople really helps me get
through.
Yeah.
But I've noticed in the last, Idon't know, six months or so
(03:19):
that hard outer shell is reallystarting to soften up.
And a lot of the feelings arebubbling up to the surface a lot
more grief is funny that way.
Yeah.
I don't really know when we'regoing to get hit by things or
how it's going to happen or,but, uh, It's an ever-changing
journey.
Yeah, I imagine.
(03:40):
You know what?
When we're doing this, let meunplug Alexa so she doesn't
sound off.
Oh, okay, great.
Yeah, my house is fullyinterconnected.
One of the things that we did tohelp us through Larry's journey
was I set up Alexa.
I set up Echo Show.
I have cameras everywhere.
They're on the doors announcingwhen somebody goes out through
(04:03):
the door.
at the driveway, you know, inthe backyard, everywhere, so
that it was a big help to us,keeping track of a full-grown
mobile adult to the impulsecontrol of a toddler.
SPEAKER_01 (04:18):
Right, right, right.
No, I get it.
We did the same.
And it's funny.
It brings up a funny memory withmy mom.
Tell me.
I have a video.
I'll send it to you if I canfind it.
And we are trying to teach herhow to say, Alexa, Call Lori.
Alexa, call.
Oh my gosh.
(04:40):
She cannot.
And then we wrote it down, youknow, on a big, we wrote it big
on a piece of paper.
Oh, and she just laughed and welaughed, but we cannot, it
didn't even begin to workbecause she couldn't, you know,
we couldn't get her tounderstand.
I have a similarly funny
SPEAKER_02 (04:59):
story.
Larry, um, became obsessed withtickling our cat's tummy.
He's an indoor outdoor cat.
He's very aggressive.
He's very, you know, controllingof himself.
And Larry would pick him up andstretch him out like a guitar
and tickle his tummy.
And he would start to howl.
(05:20):
And it sounded kind of like ababy crying.
So I programmed our device sothat when it heard a baby
crying, it would say, Larry,please leave the cat alone.
Oh,
SPEAKER_01 (05:30):
my
SPEAKER_02 (05:31):
gosh.
That's great.
I have started watching.
I've been binge watching Callthe Midwife.
SPEAKER_00 (05:38):
And babies
SPEAKER_02 (05:38):
are being born all the time on that show.
And so every time a baby isborn...
The baby is crying and I hear,Larry, please leave the
SPEAKER_01 (05:47):
cat alone.
Oh, it's still there.
I love it.
I
SPEAKER_02 (05:53):
love it.
I'm not disabling that.
I'm leaving
SPEAKER_01 (05:55):
that.
Yeah, that's great.
UNKNOWN (05:57):
Every time because I see him playing the cat guitar
every time.
SPEAKER_01 (06:02):
Oh, absolutely.
Hey, I read that you and Larrywere childhood sweethearts.
And then you reconnected lateron in life.
Tell me a little bit about that.
SPEAKER_02 (06:13):
We sure did.
So Larry and I met here in theNorthwest Panhandle of Florida
on Eglin Air Force Base when hewas 10 and I was eight.
SPEAKER_00 (06:23):
Our
SPEAKER_02 (06:24):
fathers were in the same squadron here.
And I got the typical, we wentto the same elementary school
and on the playground one day hesent me a note that said, no,
roses are red, violets are blue,sugar is sweet, and so are you.
Will you be my girlfriend?
Yes or no?
SPEAKER_01 (06:44):
Oh, nice.
Nice.
SPEAKER_02 (06:46):
And I said, and I took the note in my pocket and I
said, I've got to think aboutit.
He's like, okay.
My home and, you know, aboutdinner time, my mom's cooking
dinner in the kitchen.
And back then, you know, thephone, the family phone was in
the kitchen.
And so I had to call him infront of her and I was speaking
(07:07):
very cryptically.
And I called and I asked ifLarry there and his mom, Jeannie
said, yeah, let me go get him.
And he came to the phone and Isaid, yes.
And he said, yes.
What?
And I said, um, the note lookingat me, you know, side eye.
He says, oh, okay, cool.
(07:29):
See you in school tomorrow.
Oh, you know, then we wereboyfriend and girlfriend from
that point forward.
But, um, We moved to Germanyafter that.
His parents moved to Germany.
We all stayed in touch.
Our parents were very close withone another.
And one year he would be tallerthan me.
And the next year I would betaller than him.
And we just kind of grew uptogether that way.
(07:52):
But when we became young adults,we were in two different states
and you always had a girlfriendor I always had a boyfriend and
the timing was never right.
So I married in my mid twentiesand Larry never married.
And when my first marriage beganto fail or when it had failed,
(08:13):
my sister knew it had failed.
She got us both together at abirthday party of hers and we
saw each other and he was just agog.
And I was like, wow, this isLarry.
This isn't Larry, you know, butI was in the middle of a divorce
and had to focus on that.
And About nine months later, onValentine's Day, I got two dozen
(08:37):
roses at my office.
And I thought, I was thinking itwas my ex-husband who had sent
me these roses, trying to makeup with me after, you know, it
wasn't him.
It was Larry, who knew it wouldbe my first Valentine's Day,
roses.
And we talked every night afterthat for about six months.
(08:58):
And Finally, when he says, youknow what I'm going to do?
I'm just going to move to Texasbecause he was in Georgia and I
was in Texas at the time.
I'm going to move to Texas andI'm going to court you.
And I said, Larry, I've got twochildren.
I've watched my girlfriends whenthey got divorced and what their
children went through.
I'm not going through that.
If you're just planning ondating me because I'm not going
(09:20):
to put my kids through that.
Sounds like a marriage proposal.
SPEAKER_00 (09:26):
Wait, wait, wait.
That's not what I meant.
SPEAKER_02 (09:32):
Two weeks later, he had sold whatever he couldn't
pack into his little Honda Civicand moved to Texas and found a
place to stay and waited for me.
Wow.
We were married for 20 yearsbefore he packed.
Oh, that's amazing.
So I knew Larry from the time hewas eight until, yeah.
(09:53):
Yeah.
SPEAKER_01 (09:54):
Oh, my
SPEAKER_02 (09:55):
gosh.
I really, really, really knewhim, and he really,
SPEAKER_01 (09:58):
really, really knew me.
Yeah.
Oh, for sure.
Tell me about when came first,ALS, FTD.
FTD came
SPEAKER_02 (10:08):
first.
FTD definitely came first.
There were a couple of yearsthat, you know, it just seemed
like Larry was losing interestin everything, in the family, in
us.
We used to marvel at how wecould– sit in a car together and
not talk.
We didn't have to talk.
We didn't have to conversebecause we just had this
(10:29):
communication going on.
We could work on projectstogether all day long and didn't
even really have to havecommunication.
But there came a time when therewas no nonverbal communication
either.
Like he was just not there, notpresent.
What's going on?
SPEAKER_00 (10:43):
It
SPEAKER_02 (10:44):
almost felt like he was losing interest in me and
our family.
He would come home and he wasexhausted.
in the middle of the workday andhe would take a nap and then he
would grab a sandwich and thenhe would go back to work.
There were a lot of signs as Ilook back that probably extended
back five years before Irealized that there's really
(11:07):
something wrong.
But we thought he was depressed.
His mother had passed.
He'd had a lot of, we'd had alot of loss over the course of
the five years before he diedwith the loss of my mother and
my father and his mother and Youknow, we moved from Texas to
Florida and gave up all of ourfriends so that we could be
closer to his family while hismother was ill.
(11:29):
And I just thought he wasdepressed.
But the aha moment came when hehad decided he was going to quit
working in the delivery job thathe was working at.
He delivered doors and windowsfor a local lumber yard.
And he was going to go back todriving a school bus, which he
had done previously and heloved.
(11:49):
because it was going to be lessphysically demanding on him.
And again, we thought he wasdepressed.
We just thought he was gettingolder.
Delivering doors and windows isvery hard work.
He was training for the bus job.
And one morning at about 11o'clock, he came home and said,
well, I've been fired.
And I said, what do you meanyou've been fired?
(12:10):
Well, I was telling my boss, youknow, about the backpack that I
was going to pack.
bring with me on the bus i'vegot my brass knuckles i've got a
box cutter i've got ascrewdriver i can use as a
weapon in case the kids attackme and it was like like the
shutter of a camera just zoomingin on his face i mean that's the
(12:33):
visual that i have and just thisparadigm shift in my brain of
there's something wrong in yourbrain
SPEAKER_00 (12:39):
this
SPEAKER_02 (12:41):
is not just being depressed there's something
really wrong with your brain andI don't know what it is, but I'm
going to figure it out.
Then came the internet searchesand the symptoms and what could
this be?
Could this be Lyme disease?
Could he have a brain tumor?
I never thought I would bepraying for a brain tumor, but I
did, but it wasn't.
(13:02):
And I came across PICS disease,which was the original name for
FTD.
At the same time that Alzheimerwas researching Alzheimer's
disease, In the same facility, adoctor named Pick was
researching a similar disease,and it was named Pick's disease,
where the frontal and temporallobes were damaged.
(13:24):
Not in the same way thatAlzheimer's, which happens in
the back of the brain, and thefeatures were different.
Memory is not impacted, butlanguage can be impacted.
Impulse control is impacted.
Executive function, which is theability to plan out actions.
Think about Alzheimer's.
it takes to put together apeanut butter sandwich.
You and I are like, yeah, let meput together a peanut butter
(13:46):
sandwich and boom, I'm eatingthe sandwich, but you have to
locate the bread.
You have to locate the peanutbutter.
You have to locate the jelly.
You have to locate the knife.
You have to locate a plate.
You have to prep the bread, youknow, all these steps.
Well, if you don't have goodexecutive function, you can't
follow those steps.
SPEAKER_01 (14:05):
Yeah.
SPEAKER_02 (14:05):
And we had seen a lot of those symptoms in him.
He was a carpenter.
He built things for us.
He, you know, worked on cars.
He took engines apart and putthem back together again.
And I was seeing evidence of hisinability to do those things and
was just really confused bythem.
SPEAKER_01 (14:22):
So how long did it take you to get a diagnosis of
FTD after you started seeingthese changes?
SPEAKER_02 (14:31):
Yeah.
So the job loss was in October.
We struggled.
This was just after October.
you know, COVID and doctor'soffices were just coming back
online.
It was October of 2021.
And I couldn't get a doctor'sappointment anywhere in town.
We live in Navarre, Florida,which is in the panhandle.
And there are no specialists.
(14:53):
There are no clinics.
There's nothing within fivehours of us.
So I was struggling to find aneurologist that we could get an
appointment with.
I ended up because my familylives down in Tampa.
finding a neurologist that wecould schedule an appointment
with down there.
And that was January.
And we did the CTs and we did anMRI and a number of other tests.
(15:17):
And that neurologist was leaningtowards Alzheimer's and was just
thinking that Larry was havingmemory problems.
He didn't really pay attention.
I didn't know enough to reallysend something in advance, but I
was saying things to him.
Without saying them in front ofLarry, because FTD patients can
get really upset
SPEAKER_00 (15:38):
if
SPEAKER_02 (15:38):
they feel like they're being undermined by the
people that are in theappointments with them.
So I was trying to give signalsto this doctor and he wasn't
picking up what I was puttingdown.
SPEAKER_00 (15:47):
And
SPEAKER_02 (15:48):
he thought Larry had Alzheimer's and was going to
send him home with Aricept,which was contraindicated for
FTD, which I knew from myresearch.
SPEAKER_00 (15:59):
And I was
SPEAKER_02 (16:00):
going to argue with him.
SPEAKER_00 (16:01):
But
SPEAKER_02 (16:02):
there was a voice in my head that just said, he
doesn't know.
You would be wasting your time.
So he sent us home with adiagnosis of MCI, mild cognitive
impairment.
And I went back to our PCP,which is really a physician's
assistant.
And she was the one who helpedus on our entire journey more
than anybody else and told herour experience.
(16:24):
And I said, I know this isn'tright.
I need to find somebody local.
I need to find somebody who'sgoing to help me get the
answers.
We finally got an appointment inMarch with a local neurologist
who saw us, set him up with aneuropsych exam, which was a
comprehensive over the course ofa couple of days, like eight
(16:45):
hours worth of tests.
They came back and they said,yeah, he has FTD.
So our diagnostic journey wasnot as long and involved as some
that I've heard.
SPEAKER_00 (16:57):
Yeah,
SPEAKER_02 (16:57):
yeah.
But then it was April when I wasstarting to notice he can't walk
a quarter mile with me aroundthe block.
SPEAKER_01 (17:06):
So then you started noticing the physical.
Right.
The physical changes and you'relike, does this have anything to
do with the FTP?
Right.
We thought at first he had COPD
SPEAKER_02 (17:17):
because he was having trouble breathing.
SPEAKER_01 (17:19):
Oh, yeah.
Makes sense.
SPEAKER_02 (17:20):
His mother had COPD and his father had COPD and...
He has a protein deficiency.
Well, yeah, it's a proteindeficiency.
I cannot tell you right now whatit was.
I can't remember the name of it,but it affects the liver enzymes
and it affects the ability forthe lungs to heal.
And so we saw a pulmonologist.
(17:43):
But at this point in April, Ithink it was that we were going
to the pulmonologist.
Larry was also losing theability to understand words.
And so he could not follow theinstructions.
breathing exercises oh yeah andit wasn't until really i want to
say it was july or august thatour neurologist was finally
(18:07):
listening to me and saying i'mseeing fasciculations i'm seeing
the muscle i'm seeing it in hisleg muscles i'm seeing it in his
arms i'm seeing it in his tongueum I think we need to test him
for ALS.
And he's like, I don't see it.
We would see it all the time.
I'm like, I lay in the bed withhim and the whole bed shakes all
night long.
Yeah.
He's asleep, but the bed isshaking.
(18:28):
It's his muscles, you know,doing that.
Right.
September of 2021 is when we gotthe EMG.
Okay.
And the neurologist said, 100%,you're also seeing ALS.
SPEAKER_01 (18:41):
Oh my gosh.
SPEAKER_02 (18:43):
I put him in hospice immediately.
And it was December that we losthim.
So that's how our journey was.
SPEAKER_01 (18:52):
So that was all within one year.
SPEAKER_02 (18:54):
All within one year.
SPEAKER_01 (18:55):
Yeah.
Wow.
Had it
SPEAKER_02 (18:57):
not been for the help of a support group, an FTD
support group and people that Isaw twice a week and was able to
discuss these things with, Iwould not have made it through.
SPEAKER_01 (19:07):
Yeah.
Oh, I can imagine.
Yep.
Yeah.
I mean, ALS on its own isterrible.
FTD on its own is horrific, butthe two together at one time,
yeah, it's really hard toimagine.
So didn't Larry even understandwhat was going on either with
(19:28):
his FTD or his ALS?
SPEAKER_02 (19:31):
Yeah.
So with FTD comes, there's adiagnosis of anosognosia with
many patients where they don'tunderstand that they're sick.
Everything seems normal to them
SPEAKER_00 (19:40):
and
SPEAKER_02 (19:41):
they just do not accept.
And Larry did not accept that.
that there was anything wrongwith his brain.
Did not feel that there wasanything strange about not being
able to walk the way he used to.
He just was powering through allof it.
I think, however, when he gotthe ALS diagnosis, he still had
enough comprehension and he knewwhat ALS was.
(20:03):
I think he really understoodthen at that point that he was
sick.
I remember him becoming veryquiet and almost wistful, not
really crying, not reallyemotional about it, but he
seemed to understand that therewas something really wrong with
(20:25):
his muscles.
And that was why he was havingdifficulty breathing.
And his was a ball bar onset.
So really the breathing was theproblem.
He had difficulty swallowing.
I think he stopped really eatingfood in October and he was
living off of shakes for thelongest time.
Because of the FDD and notunderstanding that he was sick,
(20:47):
we couldn't take the normalinterventions.
We couldn't do a feeding tube.
He wouldn't accept any kind ofventilation in IV or otherwise.
And when I look back, I am soproud of his constitution.
He was always a really strongperson,
SPEAKER_00 (21:04):
had
SPEAKER_02 (21:06):
really strong faith, and was always very physically
strong.
And that held true all the waythrough to the end.
SPEAKER_01 (21:13):
Yeah.
Isn't it amazing how now youlook back and you can see all
these different things that werethere that you couldn't see
then, you know, because eitheryou're engrossed in his care or
you just don't know, like youjust didn't know.
(21:34):
There were
SPEAKER_02 (21:35):
so many moments.
UNKNOWN (21:36):
Yeah.
SPEAKER_02 (21:37):
I mean, because of the support group, I really had
a really clear understanding ofwhat was going on.
And I looked at his PET scansand his MRIs and all that so
that I could understand theareas where the damage was
occurring and equate that towhat I was seeing.
His inability to not onlygenerate speech, but understand
it at some point was all becausehe had lost so much matter in
(22:00):
the temporal lobes.
That's where our languagecenters are.
Because I had known him since hewas a child, As he began to
regress emotionally, I couldsee, oh, he's now 15.
Oh, he's now 12.
Oh, he's now 10.
Oh, he's older than 10.
(22:21):
Oh, he's my children were whenthey were five.
SPEAKER_00 (22:24):
And
SPEAKER_02 (22:27):
I could relate to him as if he were that age.
While at the same time, he's afully grown man.
With memories of our marriageand memories of our life
together and memories of all thethings he used to do.
That's a really weird dichotomyto have to navigate.
SPEAKER_01 (22:45):
Yeah.
SPEAKER_02 (22:46):
But somehow I did that.
I'm not quite sure where I gotto where we're talking about.
SPEAKER_01 (22:51):
Yeah.
SPEAKER_02 (22:51):
But I think I did a really good job with
SPEAKER_01 (22:54):
that.
Yeah.
What were some of the hardesttimes during that one year?
SPEAKER_02 (23:02):
Well, obviously losing him bit by bit.
The same way you do with an ALSpatient, you lose their mind bit
by bit too.
SPEAKER_00 (23:08):
The
SPEAKER_02 (23:11):
most painful thing though, and I don't think I can
describe it without beingemotional.
Yeah.
Okay.
He and I were the center of eachother's world.
And for him to lose interest inme, for him to not recognize how
(23:31):
special our relationship was,was very painful.
SPEAKER_01 (23:37):
It's personal.
Yeah.
Yeah.
Even though you had done yourresearch and you understand.
Yeah.
SPEAKER_02 (23:47):
But it still feels like a rejection, you know?
For sure.
It's very difficult in the faceof somebody saying, yeah, you're
okay.
When you were the center oftheir world.
Yeah.
That's really hard.
SPEAKER_01 (24:01):
And By the way, you're pouring every ounce of
love and energy and time thatyou have into that person to
turn around and feel that way.
And
SPEAKER_02 (24:19):
I knew, like your mind knows it's only because
it's sick, but your heart, it'sstill like a dagger.
Yeah.
In your heart.
And it's something that we dealwith all the time on our support
calls and try to wrap our brainsaround and try to love people
through.
Really, when you're on an FTDjourney, you can no longer
(24:41):
depend on that person to be whothey were for you.
When that person is your spouse,they're the person that you
normally went to when there wastrouble and they're no longer
there.
Right.
So you then have to find a tribeof people that you can rely on
and that will help you throughthose times.
(25:04):
And unfortunately, it's oftennot friends and family members
because they don't understand.
SPEAKER_01 (25:09):
Tell me about the group that you found and kind of
like what you learned from them.
SPEAKER_02 (25:17):
Sure.
So, and I'm still facilitatingthis chat.
UNKNOWN (25:21):
Yeah.
SPEAKER_02 (25:22):
Sharon Hall is a woman who started this chat nine
years ago.
Her husband, Rod, was diagnosedwith FTD and she started it back
before the ages of Zoom.
They were on a chat board kindof chat and they all get
together on this chat board fromaround the country and they
would talk via their keyboard.
And when Zoom came around, theyexpanded it to Zoom.
(25:45):
And many of the people that arestill on this chat were around
when she started it nine yearsago.
And she's a dynamo.
She's got her own podcast outthere, Talking FTD.
It's on Spotify and a lot ofother places.
But she approached it from avery scientific standpoint.
And she decided early on, well,we have this diagnosis.
(26:08):
I can fall apart and I can justlet the whole family fall apart.
Or I can take the bull by thehorns and I can learn as much
about it as I can.
And I can understand that it'sthe disease and it's not me.
And I can do what I can to makethings better.
For every problem, there's asolution.
And that's kind of the way sheruns this call.
(26:28):
We talk about any subject.
And with FTD, it runs the gamut.
I'm talking with a woman rightnow whose husband has not been
diagnosed.
They have four small children.
He has been very violent withthem.
he would not see a doctor.
Many with anosognosia will notadmit that there's a problem and
(26:50):
they won't go see a doctor.
And his behavior is really outof control.
And she's trying to get him seenby a neurologist and trying to
get him diagnosed while at thesame time, he's blaming her for
all the things that are goingwrong in his life.
He's lost his job.
He's lost his insurance.
They're going to lose theirhome.
(27:10):
Um, He helped theirseven-year-old over a second
story balcony one night just tobe funny.
When you end up with a situationlike that and there's no way of
looping that person in orlassoing that person in or
controlling their behavior,getting them diagnosed, getting
(27:32):
them on medications, whatrecourse is there but to abandon
that person and save yourselfand save your children?
SPEAKER_00 (27:42):
These
SPEAKER_02 (27:42):
are the kind of decisions that some FTD
caregivers have to make.
SPEAKER_00 (27:47):
Yeah.
SPEAKER_02 (27:48):
We all would like to say or like to think that when
our loved one is struck andstricken by this disease, that
we will take care of them.
Sometimes you can't.
What's the name of the group?
We call it the FTD chat and wehave it.
(28:08):
We advertise it on a number ofprivate groups, the FTD spouse
group.
the Association forFrontotemporal Dementia,
Frontotemporal Dementia 101, andALS FTD.
SPEAKER_01 (28:22):
And are those Facebook groups or are those
websites?
Those are private Facebookgroups.
SPEAKER_02 (28:29):
Okay.
And I can supply you with thoselinks.
Yeah, that'd be great.
In your notes if you'd like.
But you have to join the group.
You have to answer thequestions.
UNKNOWN (28:38):
Sure.
SPEAKER_02 (28:38):
They're very protective of those spaces.
We want to make sure it's eithera caregiver and on some of the
groups, the AFTD group is forpatients and caregivers.
Some of them are caregivers.
SPEAKER_01 (28:50):
For anyone that isn't at a point where they know
what they're dealing with withFTD, what advice or what
watchouts do you have?
that might connect someone'sbehavior with possible FTD.
(29:15):
You know, just what informationdo you have that can lead
someone to the right place?
SPEAKER_02 (29:21):
Sure.
So I found my information onYouTube and mostly webinars that
were put on by the AFTD, theAssociation of Frontotemporal
Dementia.
They have so many webinars outthere describing symptoms
describing clinical symptoms,describing the disease itself,
describing what's right andwhat's not right.
(29:44):
Perfect.
That seems to be the best placefor me to connect symptoms with
behaviors.
SPEAKER_01 (29:49):
Yeah.
SPEAKER_02 (29:50):
I can see that I'm on a lot of ALS groups as well,
and I chat with ALS and FTDpeople.
I think it's more prevalent thanwe know in the ALS community.
When I hear caregivers And theyall get frustrated, right?
There's a lot of work that'sinvolved in caring for someone
who's immobile and you have todo everything for them.
(30:13):
But I hear when I, whenever Ihear the words, he's so
narcissistic, he doesn't evencare about us.
She doesn't understand how, youknow, how her decisions are
affecting the family.
They are going out and spendingall of this money and we don't
have all of this money.
And, you know, When you hearthis, my mind always goes to FTD
(30:40):
because those are classicsymptoms.
It's not they're losing theirmemory.
It's not that they can'tremember where they put their
socks.
It's not that they can't dressthemselves necessarily.
SPEAKER_00 (30:51):
It's
SPEAKER_02 (30:53):
not their memory.
It's things like judgment andapathy and potentially not even
understanding how sick they are,as we've talked about with
anosognosia.
I think there's a lot ofpatients that are spared that,
but because both ALS and FTDoccur in the brain, it's not
(31:15):
like there's a firewall in ourbrain that says, hey, this area
is starting to degenerate.
Don't go over into this otherarea and degenerate as well.
I think that's why there's somuch crossover.
FTD can affect everyonedifferently, right?
Not everybody is running downthe street naked.
SPEAKER_01 (31:31):
Not everybody is hopping into the Corvette
SPEAKER_02 (31:35):
and racing around the neighborhood at 60 miles an
hour when it's a 20 mile an hourspeed limit.
Yeah, yeah.
SPEAKER_01 (31:42):
All different types of behavior, for sure.
Yeah.
So it's been a couple of yearssince Larry passed.
So looking back now, is thereanything that you would have
done differently
SPEAKER_02 (32:01):
sure i'm going to unequivocally say i have one
regret and it has nothing to dowith taking care of myself or
taking care of him or any of thethings like i i couldn't do any
better before i knew any betterright sure i'm not one to beat
myself up about things that idid not know um and the the
(32:21):
support group really helped methrough all of this the the This
is what I'm seeing.
What do you know about this?
And so they were able to give meinstant feedback and I was able
to act on it.
I was very responsive to theadvice that I was given.
I was very careful about caringfor myself physically.
I think I was in better shapeafter his diagnosis than I had
(32:44):
been in the 15 years before.
I made sure that I was gettingsleep.
I made sure that I was walking.
I made sure I was eatingproperly.
I stopped consuming as muchalcohol.
I'm not saying I no longer drinkalcohol because I'm out of
tequila, but it wasn't as often.
And I'm very conscious of here'sour schedule and everything was
(33:06):
regimented in our household.
Keeping things the same andkeeping on a schedule and
keeping things calm in thehousehold was instrumental in us
keeping them home.
Because FTD patients don't dowell with noise and they don't
do well with change and theydon't do well with a lot of
anxiety.
I was really able to tamp all ofthat down in myself and keep
(33:27):
really good control of all ofthat.
We kept our Christmas tree upfor two years.
I didn't take it down.
I didn't want anything to changeand have him be confused by it.
Yeah.
I think I made all the rightdecisions at all the right time,
again, only because I had theadvice of good people.
(33:50):
Yeah.
I got him on hospice right away.
They helped me monitor hisphysical condition.
They got me all of the equipmentthat I needed.
I had enlisted the people that Iknew were going to help me, not
the people I expected to helpme, but the people who offered.
And I accepted help wherever itwas offered.
SPEAKER_00 (34:09):
Mm-hmm.
SPEAKER_02 (34:11):
The only regret that I have is very difficult to
voice also.
SPEAKER_00 (34:14):
His
SPEAKER_02 (34:16):
last couple of days were difficult for him.
They were physically difficultfor him.
He didn't sleep.
I think he knew what was coming.
And I was very careful about themedications.
I didn't want to over-medicatehim.
But I had all of the medicationsnecessary to sedate him.
SPEAKER_00 (34:32):
And
SPEAKER_02 (34:34):
I didn't sedate him.
And he was conscious.
And his last 12 hours werereally difficult and confusing
for him.
SPEAKER_00 (34:45):
He
SPEAKER_02 (34:46):
was conscious when he died.
And I think he was really mad.
He was fighting to the end.
And that was very difficult towatch.
So I think the only regret thatI have is in not sedating him in
those last hours that I knewwere coming.
Anyway, it's a personal regret.
(35:08):
That's really the only one thatI have.
Yeah.
SPEAKER_01 (35:13):
When do you want people to know or to understand
when it's really like to haveboth ALS and FTD in your life?
Well,
SPEAKER_02 (35:25):
every patient is different.
For us, it was really difficultto make the decision to do
nothing.
There are things we can do forALS to slow progression.
There's nothing we can do forFTD to correct the condition.
SPEAKER_00 (35:40):
We
SPEAKER_02 (35:41):
can offer medications when someone's
aggressive or agitated orfrightened.
We can change the environment toaccommodate them so that they
are less afraid of what'shappening.
But With ALS, you have theoption, I can fight, I can get a
(36:04):
feeding tube, I can getventilation, I can decide to be
trached, I can get a wheelchair,I can do all these things.
SPEAKER_01 (36:11):
Right.
SPEAKER_02 (36:12):
It was really very difficult to do nothing except
love him.
SPEAKER_00 (36:18):
Yeah.
SPEAKER_02 (36:19):
And with an FTD patient, that is the most
important thing is to love them.
Yeah.
I see caregivers who arefrustrated because they've lost
their abilities.
They're not the same person.
I had someone tell me a coupleof weeks ago, but he's lost his
humanity.
And
SPEAKER_00 (36:38):
I
SPEAKER_02 (36:38):
said, but how are you defining his humanity?
Is it defined by the things thathe can and cannot do?
The things that he used to dothat he can't do any longer?
Or is it defined by the personthat he is deep down inside?
My husband never lost hishumanity, ever.
Not for one second did he losehis humanity.
SPEAKER_00 (36:58):
He
SPEAKER_02 (37:01):
continued to love God and he continued to love
people until the day he died.
We would go to McDonald's and hewould fist bump strangers,
everybody that he saw.
You know, he's giving a littlepiece of himself.
SPEAKER_00 (37:17):
It's
SPEAKER_02 (37:18):
more human than anything I know.
So even though somebody's losingtheir capabilities, they're not
losing themselves.
The only thing that's happeningis they're regressing to an
earlier version of themselves.
I watched the movie A CuriousCase of Benjamin Button about a
(37:42):
month after he died.
I don't know why.
It was foolish.
But That movie reallyillustrated the journey, the
mental journey that he wentthrough.
That was similar to the mentaljourney that Larry went through.
He just kept getting younger andyounger and younger, but that
doesn't eliminate his humanityor who he was.
SPEAKER_01 (38:02):
Yeah.
Right.
You know?
Yeah.
And he also didn't have achoice.
Yeah.
You know, in the condition thathe was in.
Yeah.
If you can say something toLarry right now, What would it
be?
I would tell him how proud I amof him.
SPEAKER_02 (38:24):
For all the reasons that I mentioned before.
I was proud to be his wife, butI was even more proud and
honored to be his caregiver.
And to see him home.
It was the hardest thing I'veever done.
You know, I was with my mom.
(38:44):
I was with my dad.
Those things are hard.
This was harder.
But I was really proud of himand really proud to be there
SPEAKER_01 (38:58):
for him.
SPEAKER_00 (39:00):
Yeah.
SPEAKER_01 (39:01):
Well, I want to say that I'm very proud of you.
I'm extremely proud of you tocontinue to be an advocate in
the ALS and FTD space.
I'm incredibly proud of you forhaving this conversation and for
(39:25):
you leaning into the communityand helping others that are
going through what you wentthrough.
Really, it's everything.
Thank you.
Thank you for that.
So speaking about honoring himAnd moving forward, you are very
active in the communities.
(39:46):
And tell me about like whatinspired you to continue in the
space where it always strikes meas so admirable of people who
have lost their person, but yetthey continue to live in that
space.
Sure.
Because they have a choice.
SPEAKER_02 (40:07):
Sure.
Everybody has the choice ofclosing the book and moving on.
I think it has to be my faith.
There has to be some reason thatthis happened.
And maybe it has nothing to dowith Larry.
And maybe it has everything todo with I was meant for a higher
purpose.
And if I can find any purposeout of his journey, maybe this
(40:30):
is it.
Maybe I was meant to help people
SPEAKER_00 (40:35):
on
SPEAKER_02 (40:35):
their journey.
And maybe that's a calling thatI've been ignoring.
SPEAKER_00 (40:39):
And
SPEAKER_02 (40:39):
maybe this is my chance to follow that calling.
SPEAKER_00 (40:43):
Is it
SPEAKER_02 (40:43):
hard?
You betcha.
SPEAKER_00 (40:46):
As
SPEAKER_02 (40:46):
you know, it's very difficult when we lose somebody
week after week.
It's difficult to listen to thestories and the heartache that
people go through.
But if we weren't there withthem and for them, they'd have
no one.
I didn't have to go through myjourney alone and I don't want
anyone else to have to gothrough it either.
SPEAKER_01 (41:07):
Yeah.
Even the one lady that you weretalking about, that you were
talking to, you know, if youthink about it, how lost and
confused you can be dealing withALS or FTD, but yet one person,
if you have one person that youcan bring clarity to, it's
(41:28):
really so worthwhile.
SPEAKER_02 (41:30):
We call it the hair on fire year, the year after
your diagnosis, when you'retrying to figure out what you
have to do and in what order youhave to do it.
And you have all these thoughtsoverwhelming you.
And if it's not for a group ofpeople saying one bite of the
elephant at a time,
SPEAKER_00 (41:46):
get
SPEAKER_02 (41:48):
your, you know, go see your elder law attorney, get
your durable POA, lock down yourcredit.
take care of your bank accounts,step by step, all of the things
that you need to do to not onlyset up your person to be cared
for, but it was also told to methat I'm a young woman.
(42:10):
I still had a young son who wasin high school.
And I thought when we first gotour diagnosis, well, I'll just
quit working and I'll cash in my401k and we'll take care of him
and we'll do...
And I had a very good friend whosaid, no, you cannot do that.
You have a future.
He does not have a future, butyou do have a future.
SPEAKER_00 (42:29):
And you
SPEAKER_02 (42:30):
have to protect that future at all costs.
Yeah.
So here's what you do instead.
Yeah.
I can't tell you how importantit is to lean on the advice of
others when you're scramblingfor a solution to the
impossible.
SPEAKER_01 (42:48):
Yeah.
Especially someone that's beenthere, you know, it's worth
everything.
SPEAKER_02 (42:52):
Precisely.
SPEAKER_01 (42:53):
Yeah.
So I just want to mention acouple of things that you're
involved in.
You are a part of I Am ALS in afew different ways.
One of them is the Artistry ofALS, which I think is an
amazing, amazing, amazinghighlight feature, whatever you
want to call it.
Can I tell you where that wasborn?
(43:15):
Yeah,
SPEAKER_00 (43:16):
sure.
SPEAKER_02 (43:17):
So Brandy Trigona, I don't know if you've heard her
name, is a woman who's livingwith ALS and was creating art at
the rate of more than one imagea day and posting it on social
media.
And I came across her stuff inone of the Facebook groups and
just loved her artwork.
And she and I began conversingand she helped me through
(43:40):
Larry's, you know, the hardestpart of Larry's journey.
She knew he was passing and shewas creating art specifically
for us.
And it's not just a piece ofart, but it's also what she
would say because she knew whatwe were going through.
And after everything happened, Ithought to myself, I want people
(44:01):
to see her artwork.
I want to put it out there.
I want to put together a book ofher work.
Like she's such an incredibleperson and this is such amazing.
It's not just the art, it's whatshe says.
And so Mandy Bailey, who livesright down the street from me,
Also an ALS advocate.
And you know her well.
Saw her artwork in a local copyshop that I had posted.
(44:24):
And said, hey, you know what wecould do?
We could have this virtual artshow.
We could invite all kinds ofartists.
And, you know, she's great forideas.
Oh, yeah.
That is where it came from.
Oh,
SPEAKER_01 (44:35):
my gosh.
Wow.
It was meant to be.
It was meant to be.
Definitely was
SPEAKER_02 (44:41):
meant to be.
SPEAKER_01 (44:42):
For sure.
And then...
Scribes of Strength.
Tell me a little bit about that.
So the Scribes
SPEAKER_02 (44:48):
of Strength is a group that was started by Juan
Reyes, another warrior.
One and only.
One and only.
And I joined his group a couple,well, shortly after Larry
passed.
It was in the spring of 2022, Iguess, 2023, spring of 2023.
And And where ALS caregivers andor patients can express
(45:16):
themselves through creativewriting and through essays.
It's another outlet other thanjust our social media.
It's a place to construct all ofour stories.
And so we meet once a week andtalk about our stories and post
things.
And it's scribesforals.com.
UNKNOWN (45:36):
Okay.
SPEAKER_02 (45:36):
is the website address if anybody wants to go
and read our writings.
SPEAKER_01 (45:42):
Okay, great.
And I'll put a link in the shownotes for that and a couple of
other things that we've talkedabout.
And the show notes can be foundon Facebook and the website,
both at I'm Dying to Tell Youpodcast.
So Ellen, I really appreciateyou sharing for not only all
(46:02):
that you're doing, but just whoyou are as a person.
Thank you so much for talkingwith me today.
But before I let you go, whatare you dying to tell us?
I am dying
SPEAKER_02 (46:16):
to tell you that you are not alone on this difficult
journey, that you can betransformed by this journey if
you let it in a very good way.
If you reach out for help, thereare people there who are going
through the same thing you'regoing through who will help you
get through it.
SPEAKER_00 (46:38):
People
SPEAKER_02 (46:38):
like me, people like Lori, like I am ALS, the
Association for FrontotemporalDementia.
It's too much for one person tohandle alone.
I know that we think we're theones that are going to care for
our people.
These diseases are much too big.
for one person to handle alone.
(47:00):
So please, lean on your tribe.
That's perfect.
Your tribe is not always your
SPEAKER_01 (47:07):
family.
Right.
It's always who you think it'sgoing to be.
Yeah, that's true.
That is true.
Yeah.
My sister and I tried to takecare of my mom during COVID in
her home.
I mean, we would cover her 24-7and we would split the shifts,
(47:27):
you know, Yeah.
But like you said, I mean,impossible for one person,
impossible for two people,sometimes even three.
So yeah, I'd love that.
Reach out to whatever communityis going to be helpful for you.
Absolutely.
It's great advice.
(47:50):
Thank you so much, Ellen.
I really appreciate appreciateand admire all that you are
doing and the strength and thecourage that you continue to
have and to help other familiesthat are going through ALS and
FTD individually and at the verysame time.
(48:12):
I know how painful both of thoseare and I cannot tell you how
much you are appreciated.
Okay, to my listeners, If you'relistening in for the first time,
I would love for you to stayconnected.
And you can get connectedanywhere on social media,
(48:32):
Facebook, Twitter, Instagram,LinkedIn, and TikTok.
See who's coming up and justcontinue to be a part of this
special community.
Okay, until next time, know thatyou are loved and not alone.
(48:53):
Thanks
SPEAKER_04 (48:58):
for listening.
Popular Podcasts
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
The Breakfast Club
The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy And Charlamagne Tha God!
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.