November 11, 2025 • 47 mins
This Veterans Day episode brings together three service members living with ALS—Liz Fassler (Army), Ron Faretra (Air Force), and John Hudacek (Army)—to share how the discipline, teamwork, and purpose they learned in uniform now guide them through life with this disease. They talk candidly about the realities of ALS, the unique challenges and resources available to veterans, and the importance of building a strong support team. Through stories from the field and insights from daily life, they offer both practical guidance and a reminder that courage doesn’t end when service ends—it evolves. 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.
Paul Carey (00:08):
Hey, I'm Paul.
Christian Carey (00:10):
And I'm Christian.
Paul Carey (00:11):
Welcome to I'm Dying to Tell You.
Inspiration shared by our momwho is dying from ALS.
Christian Carey (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.
Paul Carey (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,our mom, your host, Lorri.
Lorri Carey (00:46):
Hi, I'm Lorri, your host of I'm Dying to Tell You.
Thank you for being here.
Okay, this episode is supposedto drop around Veterans Day.
So, in honor of all themilitary veterans, thank you,
thank you, thank you, thank youfor your service, for your
(01:11):
courage, and your commitment.
We really, really appreciateyou.
And to line up with VeteransDay, today I am talking to three
military veterans.
All of them living with ALS.
And did you know that militaryveterans are twice as likely to
(01:38):
get ALS as non-veterans?
Twice as likely.
They don't know why, but that'sa fact.
And the VA actually recognizesALS as a service-connected
disease.
The three veterans that I'mtalking to today are Liz
(02:02):
Fassler, US Army veteran, RonFaretra, US Air Force veteran,
and John Hudacek, US Armyveteran as well.
Yeah, and I want to talk tothem about not only their
military experience, but alsohow that translates into their
(02:27):
life now.
I am so incredibly proud of myguests today.
Okay, so let's jump on Zoom andget connected with Liz, Ron,
and John and get started.
Okay, let's go.
So, Liz, Ron, John.
(02:49):
Thank you all for agreeing tobe on this special episode.
Veterans Living with ALS.
Also, thank you all for yourservice, for your sacrifices for
our country.
Thank you for everything thatyou've done in the military and
(03:10):
that you are currently doing inour ALS community.
So thank you all.
I want to hear a little bitabout your military background.
Uh, Liz, do you want to start?
Tell me a little bit about howyou even got interested in the
(03:31):
military and what you did.
Liz Fassler (03:35):
Sure.
I was raised in aservice-oriented uh family, just
in general, but my dad had beenin the army in the 1960s, like
a pre-Vietnam era, and he was inthe 101st airborne, and I heard
(03:58):
a lot of stories about his timein.
Um, but at the time of goinginto high school, I had a cousin
that was in junior ROTC, so Ibecame interested in that, and
then that sense of service andmilitary-esque type of
(04:22):
experience made me interested ingoing into the military as a
career, and so I followed alonginto ROTC in college and then
went into the military.
Lorri Carey (04:39):
Okay.
And tell me a little bit aboutyour time.
Liz Fassler (04:42):
And in my time in, I was never in one place for
more than six months.
Within a year, I was deployedto Saudi Arabia.
So I wasn't in the army forvery long comparatively, but I
(05:04):
did um experience a deployment.
That's also where I met myhusband.
Lorri Carey (05:12):
Oh, nice.
Nice.
Okay.
Ron, tell me a little bit aboutwhat made you decide to go the
military route.
Ron Faretra (05:22):
Well, um starting off, my father was in the Navy
uh during World War II in Korea.
My mother was in the CoastGuard during World War II.
I was in college until 1968.
And 1968, we had a very activedraft.
We did not have a lottery backin 1968.
(05:43):
18-year-olds went first.
So if you were a 20-year-oldand you dropped out of college,
then you become next.
So I elected to go in the AirForce.
I will admit right off the bat,my intention was to go in the
Air Force, spend my four years,and get out.
Air Force actually was more tomy liking than I thought it
(06:07):
would be.
I was an aircraft loadmaster.
I spent the first five years onC-130.
Then I went to C-141 afterVietnam ended.
There was absolutely no PCSmoves for loadmasters.
We kind of stayed where wewere.
I was here in Charleston for avery long time.
(06:29):
After 21 years, I decided toquit flying and went to finance
to learn a marketable skill forretirement.
And I did that.
I thoroughly loved the AirForce.
I did a lot of neat things inthe Air Force.
I did lots of airdrop testing,uh, both on the C-130 and the
141.
Love doing airdrop.
(06:50):
Nothing better than standing onthe back of the standing in the
back ramp of the airplane withit open, hanging on and just
looking at the scenery as youfly along.
Lorri Carey (07:00):
Well, for some of us.
Oh thank you for sharing that.
John, what about you?
John Hudacek (07:08):
Well, I got into the military because for us, I
want to say it was more or lessthe family business.
My dad was career air force.
Uh, and in our family, it wasvery well spoken.
If you're a male, you're goingin the military.
If you're female, you're gonnaget married.
But one way or the other, youyou're out of the house at 18.
(07:29):
Yeah.
So even though my two brotherswent Air Force, the recruiter
down where I was didn't quiteknow his stuff well enough.
And so I ended up going intothe army because I got a better
financial deal and then startedfrom there.
And then, very much like Ron,once I got in, you get hooked.
It doesn't matter what uniformyou wear, they're all the same
(07:52):
at some level.
So I started off as aninfantryman.
So I may have jumped out ofsome of the C 130s and 141s that
Ron was loadmaster on back whenI was in Savannah or Bragg.
And the enlisted side, everytime you re-enlist, if you
choose, if there's an opening,you can change jobs.
And so I took advantage of thatafter four years of carrying a
(08:15):
rucksack and sleeping in therain.
I became air crew on a verysmall two-seat, two-turboprop
airplane that the Army had foraerial intelligence, radars and
photos and stuff.
And so I was on flight status,which is funny.
I was in the Army on flightstatus, and none of my Air Force
(08:36):
family ever was.
Did that for about eight years,but two years of that was being
a drill sergeant, working oncareer progression and doing the
right ticket punches.
When I got up at about the10-year mark, my job was
undergoing a transformation.
So I jumped ship again andstarted at 12 years of service
(08:59):
into a third job, and that wasbeing a medic in special forces.
So the pipeline training ofthat was almost two years long.
Finished up with in thatparticular world, being on a
team, being on an A team is whatyou want to do.
That's why you go through thetraining.
So luckily, I was able to stayon a team for the rest of my
(09:21):
time and I retired out at 20because I wanted to be able
enough and not broken down thatI could have a second career,
even though I didn't have amarketable skill like Ron.
At least I had one semi-workingknee and one broken knee.
But yeah, so I got out after20.
Lorri Carey (09:41):
Wow.
You have had quite theexperience.
Is there something that each ofyou can share an experience, an
adventure, good or bad, thathas stuck with you that when you
tell someone about that youserved like that story always
(10:01):
comes to mind.
Liz?
Liz Fassler (10:04):
Yeah, there's a couple.
One of them is the deployment.
Not that deployments are fun,they're not meant to be fun, but
I had never been out of thecountry, save for going down to
(10:24):
Mexico because I grew up inArizona.
I had never been out of thecountry.
So that wet my whistle to learnabout other cultures and
experience, experience the worldoutside of just my little area
of growing up.
(10:46):
So um, and that's proved to betrue to this day that we've been
to different countries inEurope several times and have a
trip planned for October.
The other thing is um I was notin a job that um necessarily
(11:07):
warranted going to airborneschool and getting my jump
wings.
Um, and then it's more uniquefor a female to do it.
Um so I am proud of that.
I'm proud to be able to saythat I jumped successively out
(11:29):
of airplanes five times, butthat was also carrying on a
legacy.
Um like I said, my father was ahundred and first airborne, and
that was a goal of mine was toattend airborne school.
And so I'm quite proud of that.
Lorri Carey (11:49):
Absolutely, that's amazing, and I can imagine the
pride of your father as well.
Yeah, that's great.
John?
John Hudacek (11:59):
Okay, uh, two stories that stand out to me.
One was early in the career andone was late.
Early in the career.
Ron remembered this, but I'mnot sure about Liz or you, Lori.
Back in 1979, the Iranianstudents had captured 52
hostages and held them inTehran.
And I was in the right unit atthe right time to be on that
(12:24):
rescue mission.
Although we didn't get furtherthan our forward deployment base
in Egypt.
My unit would have been the oneon the second day to go in and
capture the airfield that wewould all flight the helicopters
to transload on the airplanesand then fly out.
And even though the missiondidn't happen, if it would have
(12:45):
happened, the trajectory of mylife would have changed
tremendously, but it ended indisaster with uh C-130 and a
couple of helicopters burningup.
We lost eight lives.
But to be on a mission likethat, one of those true missions
you couldn't talk about formany years, was a high point of
my life.
(13:06):
Uh, and the other part waslater on when I was in special
forces, much more mature andold.
I'm a floor, I'm a Floridian.
And so I don't do cold and Idon't do hills.
And I ended up being in thegroup assigned to Europe.
And not only did I have tolearn to ski with military
stuff, I had to sleep in thesnow and be happy about it.
(13:29):
So that was a challenge of me.
But the one thing that sticksout about that whole experience
of living in the mountains inthe snow for half the year is I
learned that you do ski uphills.
You you go uphills, acrosshills, downhills, you do
everything on skis.
And that includes with yourrucksack carrying all your life
(13:51):
support stuff, plus the missionstuff.
And it was just notrecreational downhill skiing by
no means.
Uh it was it was the gut checkfrom from heck.
Lorri Carey (14:02):
Wow.
And you made it.
You made it.
You did it.
Yeah.
John Hudacek (14:05):
I did, yep.
Lorri Carey (14:08):
Ron, what about you?
What what's something that'sjust stuck with you that you
want to share?
Ron Faretra (14:13):
First, I have to tell John.
John, the 141 for that mission,yeah, was out of Charleston and
a lot of my friends were on it.
John Hudacek (14:22):
I was had because I was down to Savannah.
So yeah, we Charleston 141probably flew us over.
So I'm I'm glad that we have anassociation on that, Ron.
Ron Faretra (14:33):
Yep.
The first thing that comes tomind is how I grew up.
You know, I told you I droppedout of college at 20.
Um, and I dropped out ofcollege at 20 because of A, my
grades were bad, and B, I hadn'tpaid for the first year before
I wanted to start the thirdyear.
I was just a young kid.
I didn't know anything aboutVietnam, to tell you the truth,
(14:55):
other than it was something thatwas on the news.
And and like most kids, Ididn't watch the news.
So my very first trip out ofCharleston, we went from here to
go to Delaware, picked up aplane load of 5-K explosives.
It was all Howard's shells.
Um, I don't remember whetherthey were 105s or 155s, but we
(15:19):
carried them to Alaska.
We get off the airplane,another crew takes the airplane,
and the airplane keeps moving.
The crews get to sleepsomewhere.
The next mission we had, we hada plane load of rations.
The third mission we had, wehad a plane load of mail.
And then we ended up inBangkok, Thailand.
We left and we started backhome.
(15:41):
Well, coming back home, we gotto, we just had regular old
cargo till we got to Japan.
Going from Japan to Alaska, wehad um an Arabac mission with
some wounded troops on it.
And then we carried it inAlaska.
And then when we left Alaska, Iwent out to the airplane and I
looked at the load, and we had awhole bunch of transfer cases
(16:04):
on there.
People that had been killed inaction.
And um that's when I grew up.
I'll be honest with you.
I mean, I was just a dumbassteenager.
Uh and and that grew me up realfast on the the lighter side of
(16:24):
memories while I was stationedat Pope.
At that time we did a thingcalled late low-altitude
paraticing systems.
And um, in Vietnam, we droppeda lot of ammo and a lot of fuel
that way.
And somebody decided at Popethat we needed to learn how to
drop a Sheridan tank.
(16:45):
So I worked with the Army andwe made probably about 10
Sheridan tank airdrops.
You come in about 10 feet offthe ground.
One chute pulls out threechutes that pulls the load right
out and it plops down on theground and slides along, and
there you have it.
It's pretty hard to mix yourtarget.
It's a good airdrop system, butit required pilots that were
(17:09):
extremely good.
Uh you have a 35,000 poundobject going out of the
airplane.
The airplane all of a sudden is35,000 pounds lighter, and it's
gets a little hard to control.
Unfortunately, they had twocrashes fairly close to each
other and and they stopped it.
But that was a highlight of mycareer, I think, was actually
(17:33):
working with the army on how toget that rigged and airdrop
safely.
Lorri Carey (17:38):
Yeah.
Yeah.
Well, again, thank you all forfor what you've done and just
continuing to be out helping,you know, other people and
helping this community.
I was just curious, did you allknow anything about ALS or and
(17:59):
or ALS and the militaryconnection when you were in the
okay, you're all shaking yourheads no.
No.
So did you know about ALS?
No.
Not even so.
You didn't know about ALS, youdidn't know about that there was
a connection.
John Hudacek (18:19):
I never learned to say the word amyotrophic, so
therefore, if I couldn'tpronounce it, I didn't it
was Lou Gehrig's disease.
I knew it existed, had no ideawhat it was.
Lorri Carey (18:29):
Right, right.
Right, right.
Yeah.
Isn't that crazy?
Like, no one talked about it.
I mean, my husband also saidwhen I was diagnosed, Lou
Gehrig's disease, that's not athing anymore.
You know, associating that withsomething that has been around
(18:50):
for a long time, therefore,probably already gotten a cure.
Yeah, yeah.
John Hudacek (18:58):
Yeah.
Lorri Carey (18:59):
Thinking about where you are now, you are all
living with ALS.
Do you think that there issomething that you learned in
the military that has helped youall live with this disease a
(19:20):
little bit better?
You know, like has preparedyou.
Does anyone have any thoughtson that?
Ron Faretra (19:28):
I think the military taught you to accept
what you have.
Um whether we're talking abouteating food or or a place to
sleep or where you getstationed.
It taught you just, you know,make the best of what you have.
Um and when you get diagnosedwith ALS, you get angry and then
(19:51):
one of two things happens, atleast that's my perspective,
that it's what I've seen and allof the people that I've met
with ALS.
You either become very angry,you just get pissed off and you
become a hermit and sit at home.
Or you decide I am pissed off,I'm gonna do something about
(20:12):
this, and and you startfighting, if you will, the
disease.
Um you do the kind of thingsthat that you can do.
You continue to do stuff, youcontinue to exercise, you
continue to get involved.
Lorri Carey (20:28):
Yeah, yeah.
And you all are doing that.
You all are doing that.
Ron Faretra (20:32):
Yeah.
Lorri Carey (20:32):
Uh, which is remarkable.
So John.
John Hudacek (20:35):
And then from my experience, adding to that, all
that what Ron says is true.
Yeah.
And as I became more of asenior uh sergeant, you're much
more involved with the planning.
And in special forces, inparticular, everything is around
the planning and coming up withcontingencies.
If this happens, we do that.
(20:55):
If this happens, we do that.
And you know, you have matricesall over that you can never
foresee every circumstance, butyou try to cover as many as you
can beforehand.
And so once I got my diagnosis,I launched back into that
mindset.
Gather information, assess it,see what you can do, what you
(21:17):
can't do, what's probable,what's possible.
And me having a routine to fallback on helped me on this
because as we all know, nobodyknows enough to give you to
answer your questions.
You have to search it out.
And so, fortunately for me,I've been connected with some
great people that led me on theright path, not just doing
(21:39):
Google searches and hoping forthe best.
Lorri Carey (21:42):
Yeah, yeah.
It all comes back to thatcommunity.
Right.
Yeah.
Liz, how about you?
Liz Fassler (21:48):
I can't say it any better than both the gentleman,
but an extra added layer for mehas been that my husband was
also military.
So that's how we are handlingthis.
That it's like, oh, a new issueor a new challenge.
(22:13):
Let's MacGyver it and you know,let's plan for it and let's
accept where we're at.
Like uh Ron was saying, likesometimes in the military you're
plopped into undesirablesituations, and this is a big
undesirable situation.
(22:34):
So um it's just that also thatstoicism that we get from being
in the military, it helps topersevere.
And like Ron said, it's notthat it does ALS doesn't affect
us, we just are given differenttools in our kit to manage this.
Lorri Carey (23:00):
Yeah, that's great.
My mom and dad were both in thearmy, and my mom was tough, you
know, and uh always say like Igot the greatest gift from her
because I'm prettystrong. I'm in a fighter, and
(23:22):
you know, yeah, I can see allthat.
Today, is there something inparticular right now that is a
real challenge?
John Hudacek (23:34):
I'll go first if nobody minds.
Okay.
Uh for me right now, I wasfortunate in that I lost use of
my left non-dominant arm first,and that went on for about three
and a half years.
Over the course of the lastyear, my right arm is catching
up.
So I am learning to live withevery day there's something I
(23:57):
can't do.
I can't plug a jack into atelephone to charge it up.
I can't zip my pants upanymore.
I can't do little things that Ican't pick up a 12-ounce bottle
and drink from it.
I can't lift my elbow highenough.
So I'm trying to figure out theworkarounds to get over all
this.
And I cannot allow myself tothink of myself as not being
(24:23):
able to use both of my arms.
It scares me so much, eventhough I know it's coming.
I I try and focus on what I cando to mitigate what's going on
right now.
So my biggest challenge is, youknow, for every physical thing
that happens with ALS, no matterwhat, there's a mental aspect
that goes along with that.
(24:44):
No doubt that the two match.
And trying to stay positive andremind myself that I can still
breathe, I can still talk, I canstill stand up and sit down and
walk.
I can do a lot of things manyof my brothers and sisters
can't, but it is a challengebecause upper limb onsets, one
(25:04):
of those smaller ones.
Although we all have some phaseof it, for me, it's getting to
be uh the predominantidentifying feature for me.
Lorri Carey (25:13):
Yeah, I get that.
Ron Faretra (25:16):
For me, it's kind of like John said, it's what I
can't do anymore that drives mecrazy.
I guess it was about two monthsago the toilet was messing up.
And I thought, oh, I just needto change that.
I used to clean apartments inmy younger years as a second
job.
I've always built things, I'vealways taken stuff apart and put
(25:39):
it back together.
It'll take me 15 minutes.
Two and a half hours later, Ifinally got done a job that
should take 15 minutes.
You only have to unscrew onething, pull it out, put the new
one in, screw the piece on.
(26:00):
And most of my ALS is in mylegs.
Um I have a some problem withmy fingers not wanting to work
right.
Either that or it's my keyboardthat's not working right on the
typewriter.
But that to me is thefrustrating thing.
My wife won't let me get on astepladder.
She threatened me with death.
Lorri Carey (26:21):
Um rightly so.
Ron Faretra (26:26):
You know, a light bulb needs changing, uh, and I
can't change it.
It's it's something that wassecond nature.
Yeah, and and that'sfrustrating to me.
Liz Fassler (26:36):
Yeah.
Yeah.
Liz.
Yeah, I would say while noweverything is seemingly to be
impacted, um, and I'm a slowerprogressor.
So I I've never really like hadone area accelerate so much
(27:01):
faster compared to other areas.
Um I am a respiratory uhpredominant, I guess.
So needing support throughoutthe day is difficult.
And in as much as it's not avisible thing, like, you know,
(27:26):
if somebody's having troubleopening a door, um, be it
because their arms are no longerfunctioning, or they're in a
wheelchair and just navigatingthe door and a walker or
wheelchair, this is internal.
And so people don't understandthe impact and can't really help
(27:53):
at all with that, and notenough.
Being impacted respiratorilyalso affects like your speech
and your thinking, and um thatjust adds an extra layer of
having to deal with the ALS.
Lorri Carey (28:16):
Yeah, yeah, absolutely.
Yeah.
You all have a lineage to thepower of a community.
Is there anything that when youthink about where you are now
in the ALS community that you'reyou know gaining strength from
and you all are giving back toin such a great way?
(28:38):
Is there anything that is sosimilar within your military
family and your ALS family thatyou look back now, you can
really, really be a testamentto?
John Hudacek (28:54):
Yeah, in a way, you know, the thing about the
military is you don't get topick your teammates.
They're chosen for you.
You get whoever's throwntogether and you make stuff
work.
You don't like everybody, butat the end of the day, when you
accomplish the mission, you havethis great sense, or even
better, at the end of a fieldproblem or a deployment, or you
(29:15):
know, some coin, you know, youreally feel great, but then the
whistle blows and everyone goestheir own way.
And so for me, this ALS hasbeen like a deployment for me.
You get put into a newcircumstance, you're out with
strange surroundings you don'tknow, so you band together with
other people and you bondsimilar to the way you do, in my
(29:37):
opinion, in the military.
You make connections to helpyou over rough spots, and
likewise, you help other peoplethat may be having difficulties
with the same goal, the samemission in mind.
For us, obviously, a cure isgreat, but in the absence of a
cure, live the best life you cantoday.
And so I do see similaritiesfrom the military and the ALS
(29:58):
community.
Lorri Carey (30:00):
Oh, I love that so much.
Ron and Liz, anything on that?
Ron Faretra (30:04):
I agree with what John said.
Um, I've met a lot of peoplewith ALS.
And to tell you the truth,there's none of them that really
make me angry.
There's some that frustrate meevery now and then, but nobody
makes me angry.
We're all, in all honesty,Lori, the most wonderful people
in the world.
John Hudacek (30:23):
I know.
I know.
Ron Faretra (30:26):
The most caring people, they'll pretty much do
anything for you.
I even have somebody who'swilling to give me one of his
legs if I will give him one ofmy arms.
Um, and and John's probablygonna say, wait a minute, add me
to that list.
Lorri Carey (30:43):
He's like, wait a minute, yeah.
He's like, I thought we werefriends here.
Ron Faretra (30:55):
That's that's really kind of what's wonderful
about it.
John Hudacek (30:59):
Yes.
Ron Faretra (31:00):
And like John said, it's like in the military, you
you work with who who you haveto work with.
John Hudacek (31:07):
Now, if if I can add on a little bit to that,
there's a lot, there's a lot ofanimosity, let's say, good
natured, hopefully, butsometimes not, between the
people doing the work, theenlisted corps and the officers.
They don't always communicatewell together, they live in
separate worlds, and that's justthe nature of the beast.
(31:28):
The military wouldn't existwithout that.
But in the ALS community, as Imeet more doctors and
clinicians, they are, if I hadcommanders in the military that
treated me with the dignity andrespect and kindness that the
research doctors and their teamdo, I would have stayed forever.
(31:51):
I know people care about me asa person, and I've only seen
that in this ALS community, notmedicine in general, but in this
this particular sphere.
Liz Fassler (32:02):
Yep.
And I just wanted to add on towhat John said, and that is
unique about the ALS communityis that it seems to be and is
continuing to be apatient-centered, patient-driven
(32:23):
disease community.
Yeah.
And they respect us for ourknowledge and experience in
helping them find a cure.
Lorri Carey (32:37):
And so, so powerful, so powerful.
And talking about community andbeing, you know, so effective
coming together as a team.
What are you guys working onthat is specific to those that
are living with ALS and thatwere military veterans?
Ron Faretra (32:59):
One of the things that veterans have that people
with ALS that aren't veteransdon't have is veterans get
virtually everything they need.
We're given a lot of money toredo our house, we're given
we're given uh vehicle to carryour wheelchair in, we're given
(33:25):
top-of-the-line wheelchairs,top-of-the-line equipment.
One of the things that kind ofhas been a mandate for me to try
to do is to try to convince ourlegislatures to make the
equipment that's given out topeople in Medicaid and Medicare
(33:46):
to be the same quality equipmentthat the VA gives us.
There's I mean, it's totallydifferent.
I use the example as a walkerall the time.
You can go to Walmart and buy awalker for less than a hundred
bucks and it probably will lastyou not very long.
(34:06):
But you have to keep it fiveyears, otherwise Medicare and
Medicare won't replace it.
Um the VA will give you awalker that's like a tank.
Uh and the same withwheelchairs.
And I think the one thing thatveterans need to do, all
veterans, is not brag about whatthey get from the VA, but work
(34:30):
with their local politicians toget that change.
Because if if Medicare andMedicaid buy into it like they
did with the lift done on thewheelchair, what was it, two
years ago, then local insuranceswill follow.
And to me, that's the one thingI think that people can do,
(34:52):
that veterans can do is forothers.
Lorri Carey (34:56):
Yeah.
I love that.
I think I remember talking toShelley Hoover a while ago, and
she was kind of saying the samething, and I even think that she
might have referred to it aslike veterans' guilt or, you
know, something that um justkind of unfair that everyone
(35:17):
doesn't have access to thatquality.
Liz Fassler (35:20):
But also, as I'm learning through doing this,
through um being part ofdifferent organizations outside
of veterans with ALS specificorganizations, is that the VA
strives to treat our veteransboth with the benefits as far as
(35:47):
durable medical goods, but alsoa higher level of excellence
when it comes to care.
And what benefits the veteranswill eventually benefit the
general ALS population as themedical community sees that
(36:10):
initiatives are being beneficialfor veterans, then it might
become more commonplace to helpout the rest of the community.
The veteran healthcare systemis known for its education of
newer people new to the medicalfield where they're doing the
(36:34):
residencies.
And so diminishing what theveteran, the VA in general, will
also slow the pipeline ofneurologists and OTs, PTs, etc.,
out into the generalpopulation, which would impact
(36:56):
the whole ALS community.
And so our two communities aremore related and symbiotic than
anyone in general realizes.
And we as veterans with ALS areworking towards communicating
(37:17):
more openly about what's goingon within the VA and the
differences and the disparaging,you know, points of care in
general.
And so there's a hope that wecan be successful with making it
(37:39):
better for all.
Lorri Carey (37:40):
Yeah, yeah.
It's like eyes on me, eh, John.
John Hudacek (37:44):
Okay, and and to add on to both of those, I think
in veterans' health carealtogether, for every veteran,
no matter why they're in thesystem, is to speak up.
If you see something wrong, yousee something you don't like.
It's a challenging,bureaucratic, slow system.
But if nobody says anything,nothing will ever change.
(38:05):
And if anything, benefits willlose or be lost unless someone
stands up.
So no matter where you are inthe VA system, but specifically
for us with a shorter shelflife, more than likely, we need
to let people know what we'regoing through.
And if we don't do that, we'refailing not just ourselves, but
our communities.
Lorri Carey (38:28):
Um, any advice to someone who is just diagnosed
and is a veteran?
John Hudacek (38:37):
Okay.
Make sure they get associatedwith an uh VA S C I D with an
ALS center.
Number two, make sure you gettogether with your PVA rep and
let them file all the stuff.
You have no idea what that pileof paperwork is, but they do.
So those are the two things.
Get the right treatment,doctor, and see your
(38:58):
representative to get yourbenefits started.
Lorri Carey (39:00):
Okay, perfect.
Um, does anyone have a uh afavorite motto or saying that
you currently live by?
John Hudacek (39:11):
I've got two of them.
One I learned uh at a at a VAevent a couple years ago.
Don't tell me what you can'tdo, show me what you can do.
And the other thing that keepsme focused and guided along, if
you ever read or saw The Lord ofthe Rings, when Frodo was given
the ring and he didn't know ifhe wanted to undertake the
(39:34):
mission.
And Gandalf more or less said,it's up to you, you've got to do
this.
And Gandalf the wise wizardsaid, uh, now I got to think of
the exact wording.
The question to you is, whatwill you do with the time that
you have been given?
And for me, the the fact thatour life is a gift that we
(39:55):
should use, and we should use itno matter how long or how short
it is, helps guide me through.
And of course, in that movie,Frodo does make it to Mordor and
throw the ring away andsuccessful.
And I've known enough uh a fewlong-term people like you, Lori,
and like Ron, that I have faithand hope that this is not a
(40:17):
fruitless journey.
Liz Fassler (40:19):
Yeah, yeah.
And Liz.
So this is in my signature onone of my email accounts, and it
kind of ties into John's Lordof the Rings.
But this quote is from Dek VanDyck, actually, and he said,
(40:39):
Don't be scared of dying, bemore frightened that you haven't
finished living.
And as we all have said, thatwe're more aware of a end time
than other diseases because ofthe nature of ALS.
And we're not in fear.
(41:02):
Well, I won't say that we'renot in fear of dying, but in the
meantime, we're continuing tolive, and because of our
backgrounds, we're alsocontinuing the fight until that
(41:23):
time.
Yeah.
Ron Faretra (41:28):
I have uh a quote from a wing commander that used
to be here at Charleston.
Most of the veterans, I hope,know his name.
Thomas Mikolaich.
He's the one that actuallyfought to get ALS to be
considered a presumptivemilitary disease.
But he always used to say, weneed to start strong, we need to
(41:52):
stay strong, and we need tofinish strong.
And uh and I try to do thatevery day.
Lorri Carey (42:01):
Yeah, well, you can see that.
Thank you.
Okay, I have one last question.
Liz, what are you dying to tellus?
Liz Fassler (42:12):
I'm dying to tell you that there is life after
diagnosis.
Lorri Carey (42:19):
Perfect.
Yeah, there is for sure.
John, what are you dying totell us?
John Hudacek (42:26):
I'm dying to tell people to don't focus on what
they cannot take care of, butfocus on what you can.
Live your life to the fullest.
And if you can still pursueyour passions, great if you
can't find a new passion, but dosomething to get you out of bed
in the morning, and at the endof the day, you can say, I lived
(42:46):
my life today.
Lorri Carey (42:48):
I love that.
I love that.
Oh my gosh.
And I talk to so many peoplewho are finding new passions in
this season of life or how toadapt their lifelong passion to
be able to continue to still doit.
So it's great.
Uh so Ron, what are you dyingto tell us?
Ron Faretra (43:07):
I'm dying to tell you why I go to a swimming pool
every day and swim.
Right after I was diagnosed, Ihad a friend whose mother died
of ALS a long time ago and theydidn't do anything for you.
She was going to a pool everyday to do water aerobics.
And she kept bugging me aboutit, then she got my wife bugging
(43:31):
me about it.
So I went to shut her up.
August 4th was my seventh yearof going to that pool.
Um, and and I'm dying to tellyou that I still believe that
the reason why I was able towalk up until about six months
ago, that is why.
Lorri Carey (43:54):
Yeah, that's great.
Find a way, find a way.
I know I was told 21 years ago,do not exercise.
Do not exercise.
You're gonna burn motor neuronsthat eventually you'll need to
walk.
Scared me, didn't do anythingfor a year, got more depressed
(44:16):
about not doing anything, andthen I just started easing back
into what I like to do in adifferent way, a safer way.
So I get that.
Yeah, I agree, totally agree.
Okay, thank you all so so muchfor being here.
Thank you for your service,your military service, your
(44:38):
current service to our preciouscommunity.
Like, I just really appreciateall of you and all that you're
doing, and thank you for sharingyour journeys and the
importance of ALS advocacy, evenfor all of our veterans.
So, thank you all for beinghere.
John Hudacek (45:00):
Nice meeting you, Lori.
Thank you, Lori.
Lorri Carey (45:02):
Okay, all right, thank you guys.
All right, bye-bye.
Bye.
Thank you again, Liz, Ron, andJohn for coming on and for
sharing all your experience.
And to my listeners, I am gonnaput in the show notes how you
(45:23):
can get connected to a couple ofgroups specifically for
veterans living with ALS.
And I'll put links in the shownotes that you can find on
Facebook and the website, bothat I'm Dying to Tell You
(45:46):
podcast.
So obviously, the connectionbetween ALS and military service
is a real area of concern andwith ongoing research needed uh
to fully understand the why.
So, another reason why ALSresearch is so, so important.
(46:11):
Thank you for listening today.
And in honor of Veterans Day,if you would share this episode
to let other people know howveterans are twice as likely to
be diagnosed with ALS, thatwould be really helpful.
So thank you for that, and ifyou want to stay connected, you
(46:36):
can find me pretty mucheverywhere on social media, all
at I'm Dying To TellYou podcast, Facebook, Twitter,
Instagram, LinkedIn, and TikTok.
You can find me there.
Until next time, no, you areloved.
(46:59):
And I'm alone.
Thanks for listening.
Christian Carey (47:07):
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 a friend.
Thank you.
Hey, I'm Paul.
Christian Carey (00:10):
And I'm Christian.
Paul Carey (00:11):
Welcome to I'm Dying to Tell You.
Inspiration shared by our momwho is dying from ALS.
Christian Carey (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.
Paul Carey (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,our mom, your host, Lorri.
Lorri Carey (00:46):
Hi, I'm Lorri, your host of I'm Dying to Tell You.
Thank you for being here.
Okay, this episode is supposedto drop around Veterans Day.
So, in honor of all themilitary veterans, thank you,
thank you, thank you, thank youfor your service, for your
(01:11):
courage, and your commitment.
We really, really appreciateyou.
And to line up with VeteransDay, today I am talking to three
military veterans.
All of them living with ALS.
And did you know that militaryveterans are twice as likely to
(01:38):
get ALS as non-veterans?
Twice as likely.
They don't know why, but that'sa fact.
And the VA actually recognizesALS as a service-connected
disease.
The three veterans that I'mtalking to today are Liz
(02:02):
Fassler, US Army veteran, RonFaretra, US Air Force veteran,
and John Hudacek, US Armyveteran as well.
Yeah, and I want to talk tothem about not only their
military experience, but alsohow that translates into their
(02:27):
life now.
I am so incredibly proud of myguests today.
Okay, so let's jump on Zoom andget connected with Liz, Ron,
and John and get started.
Okay, let's go.
So, Liz, Ron, John.
(02:49):
Thank you all for agreeing tobe on this special episode.
Veterans Living with ALS.
Also, thank you all for yourservice, for your sacrifices for
our country.
Thank you for everything thatyou've done in the military and
(03:10):
that you are currently doing inour ALS community.
So thank you all.
I want to hear a little bitabout your military background.
Uh, Liz, do you want to start?
Tell me a little bit about howyou even got interested in the
(03:31):
military and what you did.
Liz Fassler (03:35):
Sure.
I was raised in aservice-oriented uh family, just
in general, but my dad had beenin the army in the 1960s, like
a pre-Vietnam era, and he was inthe 101st airborne, and I heard
(03:58):
a lot of stories about his timein.
Um, but at the time of goinginto high school, I had a cousin
that was in junior ROTC, so Ibecame interested in that, and
then that sense of service andmilitary-esque type of
(04:22):
experience made me interested ingoing into the military as a
career, and so I followed alonginto ROTC in college and then
went into the military.
Lorri Carey (04:39):
Okay.
And tell me a little bit aboutyour time.
Liz Fassler (04:42):
And in my time in, I was never in one place for
more than six months.
Within a year, I was deployedto Saudi Arabia.
So I wasn't in the army forvery long comparatively, but I
(05:04):
did um experience a deployment.
That's also where I met myhusband.
Lorri Carey (05:12):
Oh, nice.
Nice.
Okay.
Ron, tell me a little bit aboutwhat made you decide to go the
military route.
Ron Faretra (05:22):
Well, um starting off, my father was in the Navy
uh during World War II in Korea.
My mother was in the CoastGuard during World War II.
I was in college until 1968.
And 1968, we had a very activedraft.
We did not have a lottery backin 1968.
(05:43):
18-year-olds went first.
So if you were a 20-year-oldand you dropped out of college,
then you become next.
So I elected to go in the AirForce.
I will admit right off the bat,my intention was to go in the
Air Force, spend my four years,and get out.
Air Force actually was more tomy liking than I thought it
(06:07):
would be.
I was an aircraft loadmaster.
I spent the first five years onC-130.
Then I went to C-141 afterVietnam ended.
There was absolutely no PCSmoves for loadmasters.
We kind of stayed where wewere.
I was here in Charleston for avery long time.
(06:29):
After 21 years, I decided toquit flying and went to finance
to learn a marketable skill forretirement.
And I did that.
I thoroughly loved the AirForce.
I did a lot of neat things inthe Air Force.
I did lots of airdrop testing,uh, both on the C-130 and the
141.
Love doing airdrop.
(06:50):
Nothing better than standing onthe back of the standing in the
back ramp of the airplane withit open, hanging on and just
looking at the scenery as youfly along.
Lorri Carey (07:00):
Well, for some of us.
Oh thank you for sharing that.
John, what about you?
John Hudacek (07:08):
Well, I got into the military because for us, I
want to say it was more or lessthe family business.
My dad was career air force.
Uh, and in our family, it wasvery well spoken.
If you're a male, you're goingin the military.
If you're female, you're gonnaget married.
But one way or the other, youyou're out of the house at 18.
(07:29):
Yeah.
So even though my two brotherswent Air Force, the recruiter
down where I was didn't quiteknow his stuff well enough.
And so I ended up going intothe army because I got a better
financial deal and then startedfrom there.
And then, very much like Ron,once I got in, you get hooked.
It doesn't matter what uniformyou wear, they're all the same
(07:52):
at some level.
So I started off as aninfantryman.
So I may have jumped out ofsome of the C 130s and 141s that
Ron was loadmaster on back whenI was in Savannah or Bragg.
And the enlisted side, everytime you re-enlist, if you
choose, if there's an opening,you can change jobs.
And so I took advantage of thatafter four years of carrying a
(08:15):
rucksack and sleeping in therain.
I became air crew on a verysmall two-seat, two-turboprop
airplane that the Army had foraerial intelligence, radars and
photos and stuff.
And so I was on flight status,which is funny.
I was in the Army on flightstatus, and none of my Air Force
(08:36):
family ever was.
Did that for about eight years,but two years of that was being
a drill sergeant, working oncareer progression and doing the
right ticket punches.
When I got up at about the10-year mark, my job was
undergoing a transformation.
So I jumped ship again andstarted at 12 years of service
(08:59):
into a third job, and that wasbeing a medic in special forces.
So the pipeline training ofthat was almost two years long.
Finished up with in thatparticular world, being on a
team, being on an A team is whatyou want to do.
That's why you go through thetraining.
So luckily, I was able to stayon a team for the rest of my
(09:21):
time and I retired out at 20because I wanted to be able
enough and not broken down thatI could have a second career,
even though I didn't have amarketable skill like Ron.
At least I had one semi-workingknee and one broken knee.
But yeah, so I got out after20.
Lorri Carey (09:41):
Wow.
You have had quite theexperience.
Is there something that each ofyou can share an experience, an
adventure, good or bad, thathas stuck with you that when you
tell someone about that youserved like that story always
(10:01):
comes to mind.
Liz?
Liz Fassler (10:04):
Yeah, there's a couple.
One of them is the deployment.
Not that deployments are fun,they're not meant to be fun, but
I had never been out of thecountry, save for going down to
(10:24):
Mexico because I grew up inArizona.
I had never been out of thecountry.
So that wet my whistle to learnabout other cultures and
experience, experience the worldoutside of just my little area
of growing up.
(10:46):
So um, and that's proved to betrue to this day that we've been
to different countries inEurope several times and have a
trip planned for October.
The other thing is um I was notin a job that um necessarily
(11:07):
warranted going to airborneschool and getting my jump
wings.
Um, and then it's more uniquefor a female to do it.
Um so I am proud of that.
I'm proud to be able to saythat I jumped successively out
(11:29):
of airplanes five times, butthat was also carrying on a
legacy.
Um like I said, my father was ahundred and first airborne, and
that was a goal of mine was toattend airborne school.
And so I'm quite proud of that.
Lorri Carey (11:49):
Absolutely, that's amazing, and I can imagine the
pride of your father as well.
Yeah, that's great.
John?
John Hudacek (11:59):
Okay, uh, two stories that stand out to me.
One was early in the career andone was late.
Early in the career.
Ron remembered this, but I'mnot sure about Liz or you, Lori.
Back in 1979, the Iranianstudents had captured 52
hostages and held them inTehran.
And I was in the right unit atthe right time to be on that
(12:24):
rescue mission.
Although we didn't get furtherthan our forward deployment base
in Egypt.
My unit would have been the oneon the second day to go in and
capture the airfield that wewould all flight the helicopters
to transload on the airplanesand then fly out.
And even though the missiondidn't happen, if it would have
(12:45):
happened, the trajectory of mylife would have changed
tremendously, but it ended indisaster with uh C-130 and a
couple of helicopters burningup.
We lost eight lives.
But to be on a mission likethat, one of those true missions
you couldn't talk about formany years, was a high point of
my life.
(13:06):
Uh, and the other part waslater on when I was in special
forces, much more mature andold.
I'm a floor, I'm a Floridian.
And so I don't do cold and Idon't do hills.
And I ended up being in thegroup assigned to Europe.
And not only did I have tolearn to ski with military
stuff, I had to sleep in thesnow and be happy about it.
(13:29):
So that was a challenge of me.
But the one thing that sticksout about that whole experience
of living in the mountains inthe snow for half the year is I
learned that you do ski uphills.
You you go uphills, acrosshills, downhills, you do
everything on skis.
And that includes with yourrucksack carrying all your life
(13:51):
support stuff, plus the missionstuff.
And it was just notrecreational downhill skiing by
no means.
Uh it was it was the gut checkfrom from heck.
Lorri Carey (14:02):
Wow.
And you made it.
You made it.
You did it.
Yeah.
John Hudacek (14:05):
I did, yep.
Lorri Carey (14:08):
Ron, what about you?
What what's something that'sjust stuck with you that you
want to share?
Ron Faretra (14:13):
First, I have to tell John.
John, the 141 for that mission,yeah, was out of Charleston and
a lot of my friends were on it.
John Hudacek (14:22):
I was had because I was down to Savannah.
So yeah, we Charleston 141probably flew us over.
So I'm I'm glad that we have anassociation on that, Ron.
Ron Faretra (14:33):
Yep.
The first thing that comes tomind is how I grew up.
You know, I told you I droppedout of college at 20.
Um, and I dropped out ofcollege at 20 because of A, my
grades were bad, and B, I hadn'tpaid for the first year before
I wanted to start the thirdyear.
I was just a young kid.
I didn't know anything aboutVietnam, to tell you the truth,
(14:55):
other than it was something thatwas on the news.
And and like most kids, Ididn't watch the news.
So my very first trip out ofCharleston, we went from here to
go to Delaware, picked up aplane load of 5-K explosives.
It was all Howard's shells.
Um, I don't remember whetherthey were 105s or 155s, but we
(15:19):
carried them to Alaska.
We get off the airplane,another crew takes the airplane,
and the airplane keeps moving.
The crews get to sleepsomewhere.
The next mission we had, we hada plane load of rations.
The third mission we had, wehad a plane load of mail.
And then we ended up inBangkok, Thailand.
We left and we started backhome.
(15:41):
Well, coming back home, we gotto, we just had regular old
cargo till we got to Japan.
Going from Japan to Alaska, wehad um an Arabac mission with
some wounded troops on it.
And then we carried it inAlaska.
And then when we left Alaska, Iwent out to the airplane and I
looked at the load, and we had awhole bunch of transfer cases
(16:04):
on there.
People that had been killed inaction.
And um that's when I grew up.
I'll be honest with you.
I mean, I was just a dumbassteenager.
Uh and and that grew me up realfast on the the lighter side of
(16:24):
memories while I was stationedat Pope.
At that time we did a thingcalled late low-altitude
paraticing systems.
And um, in Vietnam, we droppeda lot of ammo and a lot of fuel
that way.
And somebody decided at Popethat we needed to learn how to
drop a Sheridan tank.
(16:45):
So I worked with the Army andwe made probably about 10
Sheridan tank airdrops.
You come in about 10 feet offthe ground.
One chute pulls out threechutes that pulls the load right
out and it plops down on theground and slides along, and
there you have it.
It's pretty hard to mix yourtarget.
It's a good airdrop system, butit required pilots that were
(17:09):
extremely good.
Uh you have a 35,000 poundobject going out of the
airplane.
The airplane all of a sudden is35,000 pounds lighter, and it's
gets a little hard to control.
Unfortunately, they had twocrashes fairly close to each
other and and they stopped it.
But that was a highlight of mycareer, I think, was actually
(17:33):
working with the army on how toget that rigged and airdrop
safely.
Lorri Carey (17:38):
Yeah.
Yeah.
Well, again, thank you all forfor what you've done and just
continuing to be out helping,you know, other people and
helping this community.
I was just curious, did you allknow anything about ALS or and
(17:59):
or ALS and the militaryconnection when you were in the
okay, you're all shaking yourheads no.
No.
So did you know about ALS?
No.
Not even so.
You didn't know about ALS, youdidn't know about that there was
a connection.
John Hudacek (18:19):
I never learned to say the word amyotrophic, so
therefore, if I couldn'tpronounce it, I didn't it
was Lou Gehrig's disease.
I knew it existed, had no ideawhat it was.
Lorri Carey (18:29):
Right, right.
Right, right.
Yeah.
Isn't that crazy?
Like, no one talked about it.
I mean, my husband also saidwhen I was diagnosed, Lou
Gehrig's disease, that's not athing anymore.
You know, associating that withsomething that has been around
(18:50):
for a long time, therefore,probably already gotten a cure.
Yeah, yeah.
John Hudacek (18:58):
Yeah.
Lorri Carey (18:59):
Thinking about where you are now, you are all
living with ALS.
Do you think that there issomething that you learned in
the military that has helped youall live with this disease a
(19:20):
little bit better?
You know, like has preparedyou.
Does anyone have any thoughtson that?
Ron Faretra (19:28):
I think the military taught you to accept
what you have.
Um whether we're talking abouteating food or or a place to
sleep or where you getstationed.
It taught you just, you know,make the best of what you have.
Um and when you get diagnosedwith ALS, you get angry and then
(19:51):
one of two things happens, atleast that's my perspective,
that it's what I've seen and allof the people that I've met
with ALS.
You either become very angry,you just get pissed off and you
become a hermit and sit at home.
Or you decide I am pissed off,I'm gonna do something about
(20:12):
this, and and you startfighting, if you will, the
disease.
Um you do the kind of thingsthat that you can do.
You continue to do stuff, youcontinue to exercise, you
continue to get involved.
Lorri Carey (20:28):
Yeah, yeah.
And you all are doing that.
You all are doing that.
Ron Faretra (20:32):
Yeah.
Lorri Carey (20:32):
Uh, which is remarkable.
So John.
John Hudacek (20:35):
And then from my experience, adding to that, all
that what Ron says is true.
Yeah.
And as I became more of asenior uh sergeant, you're much
more involved with the planning.
And in special forces, inparticular, everything is around
the planning and coming up withcontingencies.
If this happens, we do that.
(20:55):
If this happens, we do that.
And you know, you have matricesall over that you can never
foresee every circumstance, butyou try to cover as many as you
can beforehand.
And so once I got my diagnosis,I launched back into that
mindset.
Gather information, assess it,see what you can do, what you
(21:17):
can't do, what's probable,what's possible.
And me having a routine to fallback on helped me on this
because as we all know, nobodyknows enough to give you to
answer your questions.
You have to search it out.
And so, fortunately for me,I've been connected with some
great people that led me on theright path, not just doing
(21:39):
Google searches and hoping forthe best.
Lorri Carey (21:42):
Yeah, yeah.
It all comes back to thatcommunity.
Right.
Yeah.
Liz, how about you?
Liz Fassler (21:48):
I can't say it any better than both the gentleman,
but an extra added layer for mehas been that my husband was
also military.
So that's how we are handlingthis.
That it's like, oh, a new issueor a new challenge.
(22:13):
Let's MacGyver it and you know,let's plan for it and let's
accept where we're at.
Like uh Ron was saying, likesometimes in the military you're
plopped into undesirablesituations, and this is a big
undesirable situation.
(22:34):
So um it's just that also thatstoicism that we get from being
in the military, it helps topersevere.
And like Ron said, it's notthat it does ALS doesn't affect
us, we just are given differenttools in our kit to manage this.
Lorri Carey (23:00):
Yeah, that's great.
My mom and dad were both in thearmy, and my mom was tough, you
know, and uh always say like Igot the greatest gift from her
because I'm prettystrong. I'm in a fighter, and
(23:22):
you know, yeah, I can see allthat.
Today, is there something inparticular right now that is a
real challenge?
John Hudacek (23:34):
I'll go first if nobody minds.
Okay.
Uh for me right now, I wasfortunate in that I lost use of
my left non-dominant arm first,and that went on for about three
and a half years.
Over the course of the lastyear, my right arm is catching
up.
So I am learning to live withevery day there's something I
(23:57):
can't do.
I can't plug a jack into atelephone to charge it up.
I can't zip my pants upanymore.
I can't do little things that Ican't pick up a 12-ounce bottle
and drink from it.
I can't lift my elbow highenough.
So I'm trying to figure out theworkarounds to get over all
this.
And I cannot allow myself tothink of myself as not being
(24:23):
able to use both of my arms.
It scares me so much, eventhough I know it's coming.
I I try and focus on what I cando to mitigate what's going on
right now.
So my biggest challenge is, youknow, for every physical thing
that happens with ALS, no matterwhat, there's a mental aspect
that goes along with that.
(24:44):
No doubt that the two match.
And trying to stay positive andremind myself that I can still
breathe, I can still talk, I canstill stand up and sit down and
walk.
I can do a lot of things manyof my brothers and sisters
can't, but it is a challengebecause upper limb onsets, one
(25:04):
of those smaller ones.
Although we all have some phaseof it, for me, it's getting to
be uh the predominantidentifying feature for me.
Lorri Carey (25:13):
Yeah, I get that.
Ron Faretra (25:16):
For me, it's kind of like John said, it's what I
can't do anymore that drives mecrazy.
I guess it was about two monthsago the toilet was messing up.
And I thought, oh, I just needto change that.
I used to clean apartments inmy younger years as a second
job.
I've always built things, I'vealways taken stuff apart and put
(25:39):
it back together.
It'll take me 15 minutes.
Two and a half hours later, Ifinally got done a job that
should take 15 minutes.
You only have to unscrew onething, pull it out, put the new
one in, screw the piece on.
(26:00):
And most of my ALS is in mylegs.
Um I have a some problem withmy fingers not wanting to work
right.
Either that or it's my keyboardthat's not working right on the
typewriter.
But that to me is thefrustrating thing.
My wife won't let me get on astepladder.
She threatened me with death.
Lorri Carey (26:21):
Um rightly so.
Ron Faretra (26:26):
You know, a light bulb needs changing, uh, and I
can't change it.
It's it's something that wassecond nature.
Yeah, and and that'sfrustrating to me.
Liz Fassler (26:36):
Yeah.
Yeah.
Liz.
Yeah, I would say while noweverything is seemingly to be
impacted, um, and I'm a slowerprogressor.
So I I've never really like hadone area accelerate so much
(27:01):
faster compared to other areas.
Um I am a respiratory uhpredominant, I guess.
So needing support throughoutthe day is difficult.
And in as much as it's not avisible thing, like, you know,
(27:26):
if somebody's having troubleopening a door, um, be it
because their arms are no longerfunctioning, or they're in a
wheelchair and just navigatingthe door and a walker or
wheelchair, this is internal.
And so people don't understandthe impact and can't really help
(27:53):
at all with that, and notenough.
Being impacted respiratorilyalso affects like your speech
and your thinking, and um thatjust adds an extra layer of
having to deal with the ALS.
Lorri Carey (28:16):
Yeah, yeah, absolutely.
Yeah.
You all have a lineage to thepower of a community.
Is there anything that when youthink about where you are now
in the ALS community that you'reyou know gaining strength from
and you all are giving back toin such a great way?
(28:38):
Is there anything that is sosimilar within your military
family and your ALS family thatyou look back now, you can
really, really be a testamentto?
John Hudacek (28:54):
Yeah, in a way, you know, the thing about the
military is you don't get topick your teammates.
They're chosen for you.
You get whoever's throwntogether and you make stuff
work.
You don't like everybody, butat the end of the day, when you
accomplish the mission, you havethis great sense, or even
better, at the end of a fieldproblem or a deployment, or you
(29:15):
know, some coin, you know, youreally feel great, but then the
whistle blows and everyone goestheir own way.
And so for me, this ALS hasbeen like a deployment for me.
You get put into a newcircumstance, you're out with
strange surroundings you don'tknow, so you band together with
other people and you bondsimilar to the way you do, in my
(29:37):
opinion, in the military.
You make connections to helpyou over rough spots, and
likewise, you help other peoplethat may be having difficulties
with the same goal, the samemission in mind.
For us, obviously, a cure isgreat, but in the absence of a
cure, live the best life you cantoday.
And so I do see similaritiesfrom the military and the ALS
(29:58):
community.
Lorri Carey (30:00):
Oh, I love that so much.
Ron and Liz, anything on that?
Ron Faretra (30:04):
I agree with what John said.
Um, I've met a lot of peoplewith ALS.
And to tell you the truth,there's none of them that really
make me angry.
There's some that frustrate meevery now and then, but nobody
makes me angry.
We're all, in all honesty,Lori, the most wonderful people
in the world.
John Hudacek (30:23):
I know.
I know.
Ron Faretra (30:26):
The most caring people, they'll pretty much do
anything for you.
I even have somebody who'swilling to give me one of his
legs if I will give him one ofmy arms.
Um, and and John's probablygonna say, wait a minute, add me
to that list.
Lorri Carey (30:43):
He's like, wait a minute, yeah.
He's like, I thought we werefriends here.
Ron Faretra (30:55):
That's that's really kind of what's wonderful
about it.
John Hudacek (30:59):
Yes.
Ron Faretra (31:00):
And like John said, it's like in the military, you
you work with who who you haveto work with.
John Hudacek (31:07):
Now, if if I can add on a little bit to that,
there's a lot, there's a lot ofanimosity, let's say, good
natured, hopefully, butsometimes not, between the
people doing the work, theenlisted corps and the officers.
They don't always communicatewell together, they live in
separate worlds, and that's justthe nature of the beast.
(31:28):
The military wouldn't existwithout that.
But in the ALS community, as Imeet more doctors and
clinicians, they are, if I hadcommanders in the military that
treated me with the dignity andrespect and kindness that the
research doctors and their teamdo, I would have stayed forever.
(31:51):
I know people care about me asa person, and I've only seen
that in this ALS community, notmedicine in general, but in this
this particular sphere.
Liz Fassler (32:02):
Yep.
And I just wanted to add on towhat John said, and that is
unique about the ALS communityis that it seems to be and is
continuing to be apatient-centered, patient-driven
(32:23):
disease community.
Yeah.
And they respect us for ourknowledge and experience in
helping them find a cure.
Lorri Carey (32:37):
And so, so powerful, so powerful.
And talking about community andbeing, you know, so effective
coming together as a team.
What are you guys working onthat is specific to those that
are living with ALS and thatwere military veterans?
Ron Faretra (32:59):
One of the things that veterans have that people
with ALS that aren't veteransdon't have is veterans get
virtually everything they need.
We're given a lot of money toredo our house, we're given
we're given uh vehicle to carryour wheelchair in, we're given
(33:25):
top-of-the-line wheelchairs,top-of-the-line equipment.
One of the things that kind ofhas been a mandate for me to try
to do is to try to convince ourlegislatures to make the
equipment that's given out topeople in Medicaid and Medicare
(33:46):
to be the same quality equipmentthat the VA gives us.
There's I mean, it's totallydifferent.
I use the example as a walkerall the time.
You can go to Walmart and buy awalker for less than a hundred
bucks and it probably will lastyou not very long.
(34:06):
But you have to keep it fiveyears, otherwise Medicare and
Medicare won't replace it.
Um the VA will give you awalker that's like a tank.
Uh and the same withwheelchairs.
And I think the one thing thatveterans need to do, all
veterans, is not brag about whatthey get from the VA, but work
(34:30):
with their local politicians toget that change.
Because if if Medicare andMedicaid buy into it like they
did with the lift done on thewheelchair, what was it, two
years ago, then local insuranceswill follow.
And to me, that's the one thingI think that people can do,
(34:52):
that veterans can do is forothers.
Lorri Carey (34:56):
Yeah.
I love that.
I think I remember talking toShelley Hoover a while ago, and
she was kind of saying the samething, and I even think that she
might have referred to it aslike veterans' guilt or, you
know, something that um justkind of unfair that everyone
(35:17):
doesn't have access to thatquality.
Liz Fassler (35:20):
But also, as I'm learning through doing this,
through um being part ofdifferent organizations outside
of veterans with ALS specificorganizations, is that the VA
strives to treat our veteransboth with the benefits as far as
(35:47):
durable medical goods, but alsoa higher level of excellence
when it comes to care.
And what benefits the veteranswill eventually benefit the
general ALS population as themedical community sees that
(36:10):
initiatives are being beneficialfor veterans, then it might
become more commonplace to helpout the rest of the community.
The veteran healthcare systemis known for its education of
newer people new to the medicalfield where they're doing the
(36:34):
residencies.
And so diminishing what theveteran, the VA in general, will
also slow the pipeline ofneurologists and OTs, PTs, etc.,
out into the generalpopulation, which would impact
(36:56):
the whole ALS community.
And so our two communities aremore related and symbiotic than
anyone in general realizes.
And we as veterans with ALS areworking towards communicating
(37:17):
more openly about what's goingon within the VA and the
differences and the disparaging,you know, points of care in
general.
And so there's a hope that wecan be successful with making it
(37:39):
better for all.
Lorri Carey (37:40):
Yeah, yeah.
It's like eyes on me, eh, John.
John Hudacek (37:44):
Okay, and and to add on to both of those, I think
in veterans' health carealtogether, for every veteran,
no matter why they're in thesystem, is to speak up.
If you see something wrong, yousee something you don't like.
It's a challenging,bureaucratic, slow system.
But if nobody says anything,nothing will ever change.
(38:05):
And if anything, benefits willlose or be lost unless someone
stands up.
So no matter where you are inthe VA system, but specifically
for us with a shorter shelflife, more than likely, we need
to let people know what we'regoing through.
And if we don't do that, we'refailing not just ourselves, but
our communities.
Lorri Carey (38:28):
Um, any advice to someone who is just diagnosed
and is a veteran?
John Hudacek (38:37):
Okay.
Make sure they get associatedwith an uh VA S C I D with an
ALS center.
Number two, make sure you gettogether with your PVA rep and
let them file all the stuff.
You have no idea what that pileof paperwork is, but they do.
So those are the two things.
Get the right treatment,doctor, and see your
(38:58):
representative to get yourbenefits started.
Lorri Carey (39:00):
Okay, perfect.
Um, does anyone have a uh afavorite motto or saying that
you currently live by?
John Hudacek (39:11):
I've got two of them.
One I learned uh at a at a VAevent a couple years ago.
Don't tell me what you can'tdo, show me what you can do.
And the other thing that keepsme focused and guided along, if
you ever read or saw The Lord ofthe Rings, when Frodo was given
the ring and he didn't know ifhe wanted to undertake the
(39:34):
mission.
And Gandalf more or less said,it's up to you, you've got to do
this.
And Gandalf the wise wizardsaid, uh, now I got to think of
the exact wording.
The question to you is, whatwill you do with the time that
you have been given?
And for me, the the fact thatour life is a gift that we
(39:55):
should use, and we should use itno matter how long or how short
it is, helps guide me through.
And of course, in that movie,Frodo does make it to Mordor and
throw the ring away andsuccessful.
And I've known enough uh a fewlong-term people like you, Lori,
and like Ron, that I have faithand hope that this is not a
(40:17):
fruitless journey.
Liz Fassler (40:19):
Yeah, yeah.
And Liz.
So this is in my signature onone of my email accounts, and it
kind of ties into John's Lordof the Rings.
But this quote is from Dek VanDyck, actually, and he said,
(40:39):
Don't be scared of dying, bemore frightened that you haven't
finished living.
And as we all have said, thatwe're more aware of a end time
than other diseases because ofthe nature of ALS.
And we're not in fear.
(41:02):
Well, I won't say that we'renot in fear of dying, but in the
meantime, we're continuing tolive, and because of our
backgrounds, we're alsocontinuing the fight until that
(41:23):
time.
Yeah.
Ron Faretra (41:28):
I have uh a quote from a wing commander that used
to be here at Charleston.
Most of the veterans, I hope,know his name.
Thomas Mikolaich.
He's the one that actuallyfought to get ALS to be
considered a presumptivemilitary disease.
But he always used to say, weneed to start strong, we need to
(41:52):
stay strong, and we need tofinish strong.
And uh and I try to do thatevery day.
Lorri Carey (42:01):
Yeah, well, you can see that.
Thank you.
Okay, I have one last question.
Liz, what are you dying to tellus?
Liz Fassler (42:12):
I'm dying to tell you that there is life after
diagnosis.
Lorri Carey (42:19):
Perfect.
Yeah, there is for sure.
John, what are you dying totell us?
John Hudacek (42:26):
I'm dying to tell people to don't focus on what
they cannot take care of, butfocus on what you can.
Live your life to the fullest.
And if you can still pursueyour passions, great if you
can't find a new passion, but dosomething to get you out of bed
in the morning, and at the endof the day, you can say, I lived
(42:46):
my life today.
Lorri Carey (42:48):
I love that.
I love that.
Oh my gosh.
And I talk to so many peoplewho are finding new passions in
this season of life or how toadapt their lifelong passion to
be able to continue to still doit.
So it's great.
Uh so Ron, what are you dyingto tell us?
Ron Faretra (43:07):
I'm dying to tell you why I go to a swimming pool
every day and swim.
Right after I was diagnosed, Ihad a friend whose mother died
of ALS a long time ago and theydidn't do anything for you.
She was going to a pool everyday to do water aerobics.
And she kept bugging me aboutit, then she got my wife bugging
(43:31):
me about it.
So I went to shut her up.
August 4th was my seventh yearof going to that pool.
Um, and and I'm dying to tellyou that I still believe that
the reason why I was able towalk up until about six months
ago, that is why.
Lorri Carey (43:54):
Yeah, that's great.
Find a way, find a way.
I know I was told 21 years ago,do not exercise.
Do not exercise.
You're gonna burn motor neuronsthat eventually you'll need to
walk.
Scared me, didn't do anythingfor a year, got more depressed
(44:16):
about not doing anything, andthen I just started easing back
into what I like to do in adifferent way, a safer way.
So I get that.
Yeah, I agree, totally agree.
Okay, thank you all so so muchfor being here.
Thank you for your service,your military service, your
(44:38):
current service to our preciouscommunity.
Like, I just really appreciateall of you and all that you're
doing, and thank you for sharingyour journeys and the
importance of ALS advocacy, evenfor all of our veterans.
So, thank you all for beinghere.
John Hudacek (45:00):
Nice meeting you, Lori.
Thank you, Lori.
Lorri Carey (45:02):
Okay, all right, thank you guys.
All right, bye-bye.
Bye.
Thank you again, Liz, Ron, andJohn for coming on and for
sharing all your experience.
And to my listeners, I am gonnaput in the show notes how you
(45:23):
can get connected to a couple ofgroups specifically for
veterans living with ALS.
And I'll put links in the shownotes that you can find on
Facebook and the website, bothat I'm Dying to Tell You
(45:46):
podcast.
So obviously, the connectionbetween ALS and military service
is a real area of concern andwith ongoing research needed uh
to fully understand the why.
So, another reason why ALSresearch is so, so important.
(46:11):
Thank you for listening today.
And in honor of Veterans Day,if you would share this episode
to let other people know howveterans are twice as likely to
be diagnosed with ALS, thatwould be really helpful.
So thank you for that, and ifyou want to stay connected, you
(46:36):
can find me pretty mucheverywhere on social media, all
at I'm Dying To TellYou podcast, Facebook, Twitter,
Instagram, LinkedIn, and TikTok.
You can find me there.
Until next time, no, you areloved.
(46:59):
And I'm alone.
Thanks for listening.
Christian Carey (47:07):
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 a friend.
Thank you.
Popular Podcasts
Las Culturistas with Matt Rogers and Bowen Yang
Ding dong! Join your culture consultants, Matt Rogers and Bowen Yang, on an unforgettable journey into the beating heart of CULTURE. Alongside sizzling special guests, they GET INTO the hottest pop-culture moments of the day and the formative cultural experiences that turned them into Culturistas. Produced by the Big Money Players Network and iHeartRadio.
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.