July 16, 2025 • 58 mins
The emotional aftermath of losing someone to ALS is a journey rarely discussed but vitally important to understand. Caroline, Jill, Jenny, and Deb—four remarkable women who lost husbands and a sister to ALS—share their paths through grief toward finding purpose and even joy again. Years after their losses, these women formed "Antiques Roadshow for ALS," a cycling team of women over 60 who donned pearls, vintage clothing, and tutus while raising over $28,000 for ALS TDI's research. Their stories reveal the complex reality of grief—how it never truly ends but evolves into something you learn to carry alongside new experiences and memories. These women candidly discuss experiencing depression, anxiety, and PTSD years after their losses, normalizing these ongoing struggles while demonstrating that healing doesn't mean forgetting. For those currently caregiving or recently bereaved, their stories offer a glimpse into a future where community, purpose, and even joy remain possible. Enjoy the listen and thanks for sharing with a friend. Hugs, Lorri
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 2 (00:09):
Hey, I'm Paul and I'm Christian.
Welcome to.
I'm Dying to Tell youinspiration shared by our mom,
who is dying from ALS.
There is no cure for our mom oranyone else with ALS, but right
now she's on a mission to findand share stories of inspiration
Coming to you from Cincinnati,ohio.
We're happy to introduce theone lady we've both loved since
the first day we laid eyes onher the queen of the queen city,
(00:32):
our mom, your host of.
I'm Dying to Tell you.
Speaker 4 (00:55):
Thank you for being here, welcome, welcome if this
is your first time and if youhave been here before, welcome
back.
So so grateful for each of you.
Well, I'm really excited abouttoday's episode because there
are some powerful, amazing womenthat I am getting ready to talk
(01:23):
to.
I know them because they are apart of the ALS community.
Unfortunately, each of them haslost someone to ALS, so for
them, the season that they arein is after ALS, and the way
(01:45):
that they are handling grief,the way that they have leaned
into community, really, reallyinspires me.
And even if you don't have aconnection with ALS, with ALS,
(02:10):
chances are pretty good that youhave lost someone in your tribe
and man.
That is just the toughest andit can really take you down.
Which is why I am encouragingeveryone to into this episode,
because each of these women havelearned so much about grief and
(02:30):
about living with grief andabout moving forward in the new
season of life without theirvery important person.
And I don't think that they'regoing to tell us that they have
all the answers or that life isgreat every single day, but I
(02:52):
bet they have some really goodinsights on what they have done
to best live in this season andone of the things that they have
recently done, they formed ateam in ALS TDI's Tri-State Trek
(03:18):
, and it is a cycling event andthey had a lot of fun with it,
starting with the name of theirteam, which is Antiques Roadshow
for ALS.
So I'm sure we're going to hearall about their team, how this
(03:42):
even came to be and what theywant you to know about their
experience there.
So I'm going to let my guestsintroduce themselves.
But I, her sister to ALS, jennyDwyer, jill Bratton and Deb
(04:10):
Poust and all three of them havelost their husband to ALS.
Here they are fighting for allof us that are living with ALS.
They are getting on bikes, theyare riding who knows how many
miles, they are dressing up intutus and calling themselves
(04:35):
antiques, all in the name oftrying to find effective drugs
and treatments for ALS.
We had a heck of a time tryingto schedule these for women.
They are busy, busy, but todayI've got them jumping on Zoom
(04:58):
and super excited for you tomeet them.
So let's go on over to our chat.
Let's go.
Speaker 1 (05:10):
Good morning.
Good morning, I'm at mybrother's plastics company in
Pennsylvania.
Those are the silos that arefull of plastic, whatever.
Speaker 6 (05:23):
I am in a hotel room in La Crosse, wisconsin, so
we're coming to you all over theplace.
Speaker 3 (05:29):
Hi everyone, hi Jen, hi Jenny, I'm coming to you from
Blakely's bedroom in Alaska.
Speaker 5 (05:38):
I'm coming to you from a spare bedroom in
Jacksonville, florida, mybrother's house.
Speaker 4 (05:44):
I love it.
I love you, ladies.
Oh my gosh.
We did it All right.
This is the accomplishmentright here, and thank you all so
much for sacrificing.
I know traveling and up at allhours in the morning to try to
(06:08):
get together, so I'm so in aweof those of you that stay in the
community, because how easythat would be to walk away and
say I don't ever want to hearALS again.
I don't want to witness all theheartache that people are going
(06:31):
through, and so, first of all,thank you for continuing to be
here and do everything that youall are doing, so I appreciate
it, and do everything that youall are doing, so I appreciate
it.
Speaker 5 (06:46):
Thanks so much for saying that, Lori.
Speaker 4 (06:48):
Yeah, really, I mean, I don't know, I don't know if I
was in your position when Iwent to it's easier because we
have each other.
Speaker 5 (07:00):
We have found each other, yeah, and yeah, I don't
know how long I'd stay in thisif I would, if I wasn't hanging
out with these ladies, you know.
Speaker 6 (07:11):
Yeah, yeah.
And there are so many peoplethat say, and it's true, we get
it.
We get what each other aregoing through, and the support
that we find in each other helpsus continue to do this.
I don't think any of us want towalk away.
We have a commitment to ALS fordifferent reasons, but it also
is so helpful to have peoplethat understand you and
(07:33):
understand the trauma and thePTSD that you carry with you
from this disease and are thereto support you.
Speaker 2 (07:40):
Yeah.
Speaker 5 (07:41):
Yeah, and the other thing is is I think there's a
misconception that all we do istalk about als and and we don't.
We, you know we're friends.
We talk about other things.
So it's not like we're a youknow als 100 of the time, and a
lot of us are the same age, wehave children, we have
(08:02):
grandchildren, and so it's notspecifically an ALS relationship
, it's a true friendship.
Speaker 3 (08:10):
Yeah, I like that and I think too for me.
You ask how we can stillcontinue to stay in this fight.
And it's because, number one,we have to end this disease.
But we continue to meet newpeople along the way, like you,
who inspire us.
And you know after I've alwayssaid after you met ALS, you
(08:34):
can't walk away from it.
And you know I can't turn myback on the people that are
fighting this disease now,because I know what the end is
going to be on the other sideand I will do whatever I can to
make that not happen forsomebody else.
Speaker 5 (08:54):
And I think the other piece of that too is that the
heartache, especially for thoseof us who have children and had
to see our children go throughthis disease with our person.
I would love to have a cure inmy lifetime and, I think, my
(09:15):
children.
We don't have a familialcomponent to ALS, but I think
there would be a collectiveexhale and relief and probably a
better quality of life if therewas a cure, and I want that for
my kids and my grandkids andfor every family that has
endured that diagnosis.
Speaker 1 (09:37):
And no family should have to go through this.
That's what we're fighting for.
No family should have to gothrough this.
And Deb's right, hopefully atsome point in our lifetimes, boy
, wouldn't it be nice if thatwere the case.
Speaker 6 (09:50):
Yeah, and I'll just.
I'll just add to that.
You know my husband, dave, wasa veteran and, as we know,
veterans are at least twice aslikely to be diagnosed with ALS.
In 99, there was a militarymedicine study that said it's
more to six to 10 times morelikely to be diagnosed with ALS,
depending on your job.
(10:10):
Our son, who is active military, has one of those jobs.
So you worry about what thisnext generation is going to face
, and Jenny said it so well youcan't walk away from this fight
when you've been so intimatelyinvolved in it.
Speaker 5 (10:26):
Yeah, yeah.
One thing I do want to say isthat, you know, I have a lot of
friends that I have met yearsago that don't stay in the fight
, and I respect that too, and Iknow everyone here does as well.
It's not for everyone andthere's no shame or guilt or
judging for those who don't, whoare not able to do that, and
(10:49):
that's just important to share.
Speaker 4 (10:50):
No, no, I love that.
That's a great point, and Ifeel like even those of us that
are living with ALS, I mean, forall the people that you see out
there on social media, there'sway more than that that you
don't see and you know.
Again, that's okay, like.
(11:12):
However, you have to process,however, you have to live with
it, totally okay.
Yeah, good point, you guys aredoing great, like.
I love how you're just jumpingin, absolutely perfect.
Let me go back.
Why doesn't everyone just goaround introduce yourself so
(11:36):
that the listeners know he'stalking, since we have a full
house here.
Since we have a full house here, caroline, why don't you go
first?
Speaker 1 (11:56):
I'm Caroline Shredway .
I live just north of Manhattanand my sister Nell was diagnosed
with ALS in 2009.
She was the youngest of foursiblings that I had five
children in total.
She was diagnosed in 2009 andwhen I tell you, she lived with
ALS, she went on cruises, shewrote newspaper columns with her
(12:18):
Toby Dynavok, but sadly we losther in 2017.
She was the mother of threechildren and the aunt to 10
children.
She lived for eight years withthe disease.
She was on a ventilator.
Speaker 4 (12:38):
three years in she developed pneumonia and was on a
ventilator for the rest of herlife with ALS.
Mm-hmm, that had to have beenreally hard, as a big sis for
sure.
Speaker 1 (12:50):
Mm-hmm.
Speaker 4 (12:51):
Yes, yeah, okay, jill .
Speaker 6 (12:53):
Hi, I'm Jill Bratton and I live just northwest of
Indianapolis, indiana.
My husband, dave, was diagnosedwith ALS in May of 2015.
He was an Army veteran thatserved during the Vietnam era,
did not see conflict in Vietnam,but served during that time
(13:14):
frame, and he passed from hisjourney with ALS in January of
2019.
We have three amazing kids thathelped us immensely during that
time.
Those three kids have blessedme with six grandchildren, soon
to be eight grandchildren.
Dave got to meet one of thosegrandchildren.
(13:37):
He absolutely loved our family,he loved adventure and we loved
our life together.
Speaker 4 (13:49):
Okay, Jenny.
Speaker 3 (13:53):
Okay, composing myself here, I know I'm like I
was starting to cry when youfirst got online, lori, and
started talking.
I'm like, oh, this is not goingto go.
Speaker 4 (14:07):
Well, I know I'm like wait a minute.
I didn't think this was goingto be emotional.
Speaker 3 (14:14):
So my name's Jenny Gordwyer.
I live in Seattle, washington.
My husband, pat, was diagnosedwith his ALS in 2005 and lived
with it for eight years, passedaway from his disease in 2013.
He hated everything about ALS.
(14:34):
He was type A personality andyou know you do things right the
first time and with ALS thatdoesn't happen but in spite of
that he made the most of everyday.
He always said ALS wasn't goingto define him and in the course
(14:55):
of his disease we boughtanother boat, we got it ready to
fish in Alaska and he set us upfor living without him, which
you know.
I can't even imagine how he wasable to do that with everything
he was going through with hisALS.
(15:17):
We have two kids, my daughterBrenna and my son Sean.
They're 36 and 33.
I have a beautifulgranddaughter, blakely Jade,
who's almost four, and it's been12 years since Pat passed away
and every morning I wake upstunned that he's not with me.
(15:40):
We just miss him every day withme.
Speaker 4 (15:41):
we just miss him every day yeah, yeah, I know a
lot of people have said to methat you know they feel like
it's a bad dream that one ofthese mornings they're just
gonna walk through the door likethey were on a golf trip or um,
you know, just hard to believethat's your reality.
All right, tim.
Speaker 5 (16:02):
Hi everyone.
I'm Deb Paust and I liveoutside of Chicago and my
connection to ALS is that I lostTim, my husband.
We were childhood sweethearts.
He was the love of my life andwe were blessed with three great
kids Brad, sammy and Jake.
(16:23):
I am a grandmother of three andanother one in about three more
weeks.
So that's me and Tim had.
(16:47):
Al was this great guy who lovedlife, he worked hard and he
played hard and he just wantedto have fun and that's what we
did.
We had a very nice life and wewere just devastated, as
everyone is when they get thatdiagnosis.
But I have to say, you know,tim was a stubborn guy and he
(17:10):
wasn't going to let ALS win andwe had a bucket list that we
worked mine and his and wereally had some good quality
time despite ALS.
Yeah, yeah, yeah.
(17:31):
So you know.
So he's been gone for 11 yearsnow and it feels like yesterday
and forever all at the same time.
And I also agree with whatJenny said is, like you know,
she wakes up stunned andsometimes I I just can't believe
that it happened and I feellike that sounds a little crazy,
but I know my friends hereunderstand that.
Speaker 4 (17:54):
Oh, you know I listened to you ladies talking
about your children and yourgrandchildren.
Anyone want to comment just onlike how does that feel?
I would imagine that it's sucha blessing to obviously see your
family grow, have thatcommunity, have that extra
(18:17):
comfort and joy in your life,but yet I would imagine that
you're also saying I wish theywere here to see this.
Or do you look at anyone andsay I see my sister or I see my
husband in you and you know,kind of get that daily earthly
(18:41):
reminder of their spiritabsolutely go ahead, jill, do
you want to?
go ahead.
Everyone's shaking their hand.
Speaker 6 (18:51):
What a great, great question and what a great point,
lori.
It is such a bittersweet thing,I would say, for me and
probably for all of us.
Every grandchild that is bornto our family has chubby cheeks
and it was kind of known for hischubby cheeks and so we always
say Papa sent chubby cheeks withthis one, and you know the kids
(19:14):
are so good about talking totheir kids about Papa that they
feel like Papa is still part ofthe family.
And he is, of course, still partof the family.
He may not be physically here,but he is still a big part of
this family and it brings me joyto see his mannerisms show up
(19:34):
in our kids and then show up inthe grandkids, see how they
resemble him so much and see howhe is still part of this
Bratton family and will alwaysremain part of this Bratton
family.
Speaker 4 (19:49):
Oh my gosh.
Yes, absolutely yeah.
Speaker 5 (19:53):
Yeah, that is super sweet, Jill.
I definitely see it in my threechildren and it's really a
great joy.
It's those ordinary experiencesof a regular day.
Yeah, that and yeah, they'rejust great reminders of Tim in
(20:13):
the best ways, and sometimes notin the best way, because Tim
was stubborn.
Speaker 4 (20:19):
And you're like and there he is again, yeah, yeah,
oh, that's awesome.
Anyone else jen?
Speaker 3 (20:28):
um, I definitely see pat in both my kids.
They both have differentqualities that were him I'm
starting to.
You know I obviously I did notknow Pat when he was a young boy
or growing up, when he was 25,I was 24.
(20:49):
But as I watch Blakely, thereare definitely some mannerisms
that I see.
And probably the most strikingthing for me about Blakely is
that Pat was born on April 14th,so 4-14.
And those are kind of like ournumbers, that anytime a 4-14
(21:12):
pops up we're like hi, pat.
And it happens more often thanI anticipate and usually at the
most strange times when I'mreally needing him, at the most
strange times when I'm reallyneeding him.
And Blakely was born on August28th and if you divide those
(21:34):
numbers in half it's 414.
And we all were like oh, she wasborn.
Speaker 4 (21:42):
If she couldn't be born on 41414,.
Speaker 3 (21:45):
She was born on 8-28.
Speaker 4 (21:48):
Oh my gosh.
Speaker 3 (21:49):
So I feel like Pat will be a part of her life for
forever.
Speaker 4 (21:55):
Yeah, so that's super special, absolutely.
Speaker 3 (21:59):
Absolutely.
Speaker 4 (22:01):
Yeah, yeah, caroline, is there anything about your
sister that kind of fueled youto be a part of this antique
road show?
Like you said, that she wasreally adventurous and you know,
did you think of that when youdecided that you were going to
(22:23):
do the Tri-State track?
Speaker 1 (22:26):
Oh, definitely, Definitely she.
Well, first of all, she wouldhave been right there with us.
She would have loved the ideathat we were cycling for monies
to go to research yeah, Mostdefinitely.
And secondly, she was I'm sortof the conservative one between
(22:50):
the two of us and she would havebeen right there with the
jersey, with the tutu, withloved being with a group of
women in a college dorm.
She, just she was theadventuresome one.
She was a big equestrian andwould drive those horses, those
(23:17):
huge animals, aroundcross-country courses and around
dressage units and betweendressage units.
And though I wasn't riding ahorse, I was riding a bike.
And when I was out there ridingmy bike, I thought you know,
I'm one with Nell really.
(23:39):
Yeah, I really did.
She would have loved it.
Speaker 4 (23:44):
Oh's awesome.
So let's talk about the antiqueroad show first of all.
How many ladies?
70, 60, 70?
Wait a minute.
Wait a minute, caroline.
How are you?
70?
You are jill.
(24:05):
How old are you?
Speaker 3 (24:08):
I'm 62, jenny I'm 63 damn 61.
Speaker 4 (24:15):
Okay, you're all over 60, all right, so, and then uh,
team captain jen.
Speaker 3 (24:24):
Yes, but in name only .
All these other ladies did allthe work.
Speaker 4 (24:31):
Okay, all right.
All right, let's talk about theAntique Roadshow.
So, for the listeners who arenot familiar with the Tri-State
Trek, it is one of the signaturefundraisers for ALS TDI and it
takes place in June and it is aweekend of cycling 200 miles in
(24:55):
a weekend 100 miles on Saturday,100 on Sunday.
Tell me, ladies, you did not do200 miles.
Speaker 5 (25:08):
No, they switched it up.
They used to do a three-daytrek that was 270-ish miles, and
I don't know how many yearsthey did that for, but in the
last past several years they'vechanged it to a 100-mile course
or a 30-mile course.
Speaker 4 (25:26):
Oh perfect.
Speaker 5 (25:28):
So you're looking at the 30-mile girls.
Speaker 4 (25:31):
Hey way to go.
So you did 30 miles on Saturdayand 30 on Sunday.
Speaker 3 (25:39):
Yeah, no, we did not do 30 miles on Sunday.
We all accomplished our 30miles on Sunday.
We all accomplished our 30miles on on Saturday.
Deb actually did 44, becausethat's Tim's number.
So she, she and a couple of herfriends rode to 44.
Sunday it was thunderstorms andraining and the roads were wet,
(26:01):
and I'm a picky bike rider, soI decided not to ride on wet
roads.
Uh, just because you're not.
Speaker 4 (26:11):
Antiques are smart you're right, there we go.
All that experience and wisdomhave led you to very good
decisions.
I love it.
So how did you guys even decidethat you were going to get
together and ride?
Speaker 5 (26:29):
I think it started last year I was riding, I
decided I wanted to ride.
And then Jenny's like well, ifyou're going to do it, I'm going
to do it.
So then we were a two-womanteam and a lot of our friends
were like you're riding, I think.
People were like you're riding,you're you know, I think people
were surprised we were riding,yeah and um.
(26:50):
Then people were saying well,you know, we had a lot of fun.
We were.
We were really all about theconnecting with the community,
um, and and the snacks.
They have really good snacks.
They feed you so well on thetrack or on the track.
And so we were all about wewere just having fun.
(27:11):
And people could see that.
And so people were saying lastyear, you know what, I think I'm
going to ride with you nextyear.
Speaker 3 (27:18):
Oh good, well, and I remember being at Caroline's
rest stop and and you know wecame in and we're, you know,
having fun and eating goodsnacks and you know Caroline was
, caroline was like I shouldride, I'm like you can totally
ride 30 miles, 30 miles, and sothat kind of that kind of
(27:41):
started everything.
It's like everybody that wetalked to, it's like it's 30
miles, you can do it.
Speaker 5 (27:48):
And we weren't even sore, like we didn't feel like
we trained very well for it, andwe were kind of nervous Like
what if we can't and we could,so do it.
And we had a blast, and weweren't even sore the next day.
So we were bragging about it,weren't we?
Speaker 4 (28:09):
yeah, I think we were right, jenny yeah, you're like
no big deal, because none of youare like big bikers, right?
No, no, I mean maybe, maybe mea little bit.
Speaker 5 (28:21):
You know big, but I do it somewhat frequently yeah,
and laurie, I mean laurie.
Speaker 6 (28:26):
When you listen to jenny and deb, how can you say
no, maybe me a little bit.
You know big, but I do itsomewhat frequently.
Yeah.
Speaker 2 (28:31):
And.
Speaker 6 (28:31):
Laurie, I mean Laurie .
When you listen to Jenny andDeb, how can you say no, I mean
they are.
They're like come on, we'llhave this great time, we'll be,
it'll be wonderful, and I'm likeokay.
Speaker 1 (28:38):
I'm in and I kept telling Jill what a wonderful
experience this was.
I've been.
This was my fifth track, Ithink, but I had always been the
person at the rest stops.
I've been through for thoseyears, and and Jenny's right,
when they came in and I saw howmuch fun they were having, I
(29:01):
said, geez, I can do that, I cando that.
So that's how we were born, andwe came up with some very good
fundraising ideas too, andcurrently, you're at $28,420.
Speaker 4 (29:28):
So you have crushed your goal.
So I don't even care whathappened on the track, but you
guys are killing it here withyour fundraising goal and, of
course, all of that money goesdirectly to ALS TDI for the
research that they're doing totry to find effective drugs and
(29:50):
treatments for ALS.
So that's great and I love that.
You guys are showing that.
I mean, you're showing so manythings by coming together and
doing this and showing that agedoesn't matter.
You know in this season of lifethat you can do something and
in some cases, do something new,something physical, something
(30:14):
independent.
You're showing the power ofcommunity and coming together
within your team and within theentire ALS TDI community.
Speaker 6 (30:29):
Lori I would love to kind of speak to that.
You know, when Dave wasdiagnosed we had a phenomenal
clinic here in Indianapolis andwe became good friends with
those people and we really feltsupported and loved and we had a
support community that cametogether other people with ALS
and I made connections with thewives of those veterans and it
(30:53):
just felt so good to be part ofthat community.
And I feel like our ALScommunity is like that.
When you're diagnosed there arepeople that come beside you and
support you and love on you andcommunicate with you and then
when your loved one passes it'salmost like a door is shut.
You know you are not part ofthat integral ALS community
(31:15):
anymore.
You have your own grief thatyou're dealing with.
You have your own difficultiesthat you're dealing with and I
find myself looking around andsaying now what?
Where is that wonderfulcommunity that I loved so much
and just felt like family.
And then I found these ladiesand I found people that knew
exactly what I was going throughand wanted to support me
(31:37):
through that and knew they weregoing through the same thing and
we had that in common.
And that love just exudes evenmore when you get together with
these people anybody who haslost a loved one to ALS.
And so there's a community outthere for people who have lost
their loved one, and I don'twant them to feel left out in
(31:58):
the cold.
I don't want them to feel likethey have to do this alone.
That's what we're all here for.
Speaker 4 (32:04):
Yeah, I love that.
Speaker 5 (32:06):
Lori, you said all those really great things.
What we were demonstrating asour team.
But my hope and I kind of thinkwe do this is we show other
people who are caregiving nowthat the after ALS there's joy,
and I hope we're showing thatwe're surviving this.
There's joy and I hope we'reshowing that we're surviving
(32:27):
this.
We're surviving the after ALS.
Even though it's hard, we arecreating joyful moments and
we're doing good to thecommunity.
Speaker 4 (32:37):
That's a great great point.
Speaker 1 (32:38):
You're here, definitely and honestly.
It's almost like an adultsleepaway camp this weekend, the
weekend up there in NewHampshire, and it's just all
these people we've said it, butall these people who know
(32:59):
exactly what happened and whatyou've been through.
I this year met a woman who hadlost her sister and it was such
a lovely time that we spenttogether, you know, a couple
hours just sitting there talking, remembering our sisters, and
(33:20):
it's just lovely, you know.
Yeah, yeah, it's a wonderful.
Like Jenny spoke on Saturdaynight, they have an open mic
night when anybody can go up andspeak, and Jenny put it very
well that there was a whole lotof love under a big tent that we
had our meals and had ourprograms in, and it was just
(33:44):
lovely, full of love.
Speaker 5 (33:47):
And it was palpable, Like you could feel the vibe.
As soon as you get on thecampus there's a vibe and it's
really special.
Speaker 3 (33:57):
Yeah, and I think one of the other things too is that
you know most of the peoplethat do the track have a
connection to ALS.
Sometimes other fundraisersthat we do or go to there are
people there that are supportingyou, that but they haven't
lived through the whole journey.
And I think at the trackbecause most everybody is there
(34:22):
for the same reason, you knowthey've been affected and they
want to end this disease.
And I remember last year when Iwalked on, like Deb said, when
I walked onto the campus, or wasit Carolina, I can't remember.
But you're just all of a suddenthere's this fantastic vibe
that you are not alone andpeople understand what you've
(34:44):
been through and we're all herejust trying to do the best that
we can and and support researchand support those families who,
who might not have the ways orthe means to help in any way.
And it is, it's a temple oflove.
Speaker 6 (35:02):
Yeah, and if I could add, just quickly add to that
too, the Halas TDI group isamazing.
Every person who works for ALSTDI, I feel like, is there.
Every person who I hadn't evenknown came up to me this is my
first year, this was my firstyear Came up to me and hugged me
and said why is it taking youso long to get here?
(35:23):
We're so happy to have you hereand I'm like wow, these people
are amazing.
Speaker 1 (35:30):
Yeah, and you're riding your bike right beside
research scientists, who quicklyleft me in the dust, but
they're riding right there withyou.
Yeah, it's wonderful.
Speaker 4 (35:45):
Yeah, and that's great.
And, Jill, you said somethingthat struck me about you know,
you have this community and thenafterwards you were like now,
what kind of thing?
And you know, I've been in thiscommunity living with ALS for
21 years, so I have seen thatand I have seen so many
(36:06):
caregivers like where do I go?
I was really involved in thecommunity, not only taking care
of my person, but how can I help?
And where do I go?
And like for us and our localsupport group I don't know if
it's still this way, but it wasIf you had lost someone, they
(36:29):
wanted you to go to a differentmeeting.
They wanted you to go to like acaregiver's meeting or a legacy
meeting, because they didn'twant to.
They didn't want it to be adowner.
Or like to scare people in asupport group by like saying, oh
, my husband died, which isunfortunate, but I have always
(36:50):
thought it was really important.
Like saying, oh, my husbanddied, which is unfortunate, but
I have always thought it wasreally important.
Right next to me I have a wallyou can't see it because of the
camera but full of people thatI've lost.
And they're not just likepeople that I know their name.
They're dear friends, and so,to this day, I continue to bring
together those people that havelost.
(37:12):
You know, we all do it at aMexican restaurant or we'll do
it here, but we, they're family.
And now, because it's been solong, some of them are getting
remarried, some of them have aboyfriend of them are getting
(37:32):
remarried.
Some of them have a boyfriendand it's kind of funny to see
because they're kind of likeunsure to tell me.
You know, I'm like hey, you'reliving your life, you found love
again.
That's amazing and it's justdifferent for me because I've
been here so long that I'mseeing that rotation of life
(37:53):
from those people that you'retalking about and to have any
kind of support and love outthere is really, really
important.
Speaker 2 (38:02):
So, yeah.
Speaker 6 (38:04):
Yeah, yeah, I think grief is a funny and difficult
thing and, however, you need tomanage it and get support for it
is extremely important.
And yeah, your life goes on,whether you want it to go on or
not, your life goes on and itchanges in different ways, but
(38:24):
that doesn't mean that you'reover grief.
You're never over grief.
You learn how to carry it withyou, and so to have people that
understand that, whether they'restill in the ALS fight or after
they've lost their loved one,they're in the ALS fight.
It's important to connect howis most meaningful for you?
Speaker 5 (39:00):
Yeah, I think part of what keeps me afloat and keeps
me like I said, tim was allabout having fun and I think I
do it for I do for myself, I doit in even more.
So I think that's my drivingforce to living fully, because
Tim couldn't and Tim lived likehe was dying, before he was
(39:20):
dying he just had that zest forlife and did all the things and
you know I tagged along on that.
But now I try to channel myinner Tim and find my happiness
and it.
You know I'm up and down a lot.
You know I have PTSD,depression and anxiety and it
(39:43):
fluctuates for me, but I reallyam trying to live fully and he's
my inspiration for that.
Yeah.
Speaker 3 (39:54):
Yeah, to follow up on your point, deb, I think it's
also important for people livingin the after ALS that you know,
yes, we go out and we have ourfun and we find our joy, but
there are moments where you dohave depression, where you do
have anxiety and PTSD, and it'sokay, we all go through it.
(40:17):
And you know, a lot of timesyou're sitting there going, oh
my God, no one does anyone evenknow what, what, what this like,
and finding these group ofwomen and and the ALS community.
You know again, you realizeyou're not alone.
The things that you're goingthrough everybody goes through
(40:40):
at some point and hopefully thatwill bring others comfort when
they're, when they're goingthrough their issues, when
they're going through theirissues.
Speaker 4 (40:49):
Yeah, and you know you guys didn't just lose your
person yesterday, you know, soto say that it's still an
occurrence, you know, depressionafter years that have gone by
and then that is okay, is reallyreassuring and it's like
(41:12):
emotions are okay and ups anddowns are part of life and I
love that you all continue totalk about your person.
I feel like when I was younger,if someone passed away, you
didn't talk about them.
You didn't say their namebecause you don't want to upset
(41:34):
the person, but I feel like, asa society, you know we need to
talk about the person.
I talk about my mom all thetime, all the time, and so I
hope that people talk about mewhen I go, like my kids tell
(41:57):
their kids.
I think it's really, reallyimportant.
Speaker 5 (42:03):
Yes, laurie, our people are unforgettable, and so
are you, but I don't think wehave to worry about them talking
about you for a while.
No, no.
Speaker 1 (42:15):
And Laurie on the back of our jerseys.
We are peddling for all of ourpeople and everyone affected by
ALS.
That was on the back of ourjerseys, so we kept them all
with us, yeah.
Speaker 4 (42:38):
You guys are amazing.
Speaker 5 (42:40):
I just want to go back to what we were talking
about before, about having eachother.
We all are on Zoom at leastonce or twice a week together
through our advocate work and wecan just tell, like nobody's.
You know, if someone's notsharing that they're struggling.
We know each other and we cansee it.
(43:01):
And if I'm not myself, I haveno game face.
And you know Jenny's calling,she's like all right, what's
going on, like you don't?
You know she can just tell, andvice versa with all of us.
We know and you know we'll sendan encouraging text or I'm here
for you and I mean that's justanother um.
(43:22):
You know it's a, it's an afterblessing that we share in our
friendship.
You know it's an after blessingthat we share in our friendship
.
We have each other, yeah, yeah.
Speaker 1 (43:33):
Yes, Just last week was the anniversary of my
sister's passing and it was solovely.
I got so many messages, textsfrom people you know, just
saying I'm thinking of you, Knowthat you're with me, and it was
(44:00):
.
It was just beautiful.
This is how do we describe ourcommunity.
This is the worst communitythat you want to belong to, but
it's also the best, because ALSreally is the worst disease.
But it's the best because thereare so many wonderful people in
it.
Speaker 4 (44:13):
Oh, I agree for sure, I see that every day.
Speaker 3 (44:16):
Yeah, I was just going to say I.
I remember that one of yourquestions was how did we, how
did we get our team name?
Yeah, and so the lovely MissCaroline actually came up with
it.
We, we were talking withcaroline and she had decided she
was going to join, and a coupleweeks later, deb and I got this
email from her.
(44:37):
She's like I've come up withthe most fabulous name for our
team.
And we're like what, what?
And she said antiques roadshowfor als and we're like, of
course, that's our team namecaroline, you were beaming from
new york and I saw it fromchicago.
Speaker 5 (44:56):
I could, she was.
Speaker 1 (44:59):
You were just happy as can be with that name, and we
are too yes, yes I love it andI tell you what it brings a
smile to everybody's face whenthey saw us.
Yeah, yeah, and Lori, we justdidn't wear bike jerseys and
shorts.
No, no, we had our.
(45:19):
You know, because we wereantiques, we had our pearls on
Deb.
Speaker 5 (45:26):
Deb, deb, deb.
I had my mother's pearlearrings, my grandmother's pearl
brooch, and then Jenny and Iwent to Goodwill and we got the
most antique-looking purses andsweaters.
Speaker 4 (45:44):
Oh, that's great, I love it and the tutus and the
tutus and the tutus.
Absolutely yeah.
Well, if I ever get to the trekin person.
I will join your team becausenow I am 60.
So I feel like I qualify forthe Antique Roadshow now.
When I was 59 a month ago, Iwould have said uh, no.
Speaker 5 (46:07):
But Now, when I was 59 a month ago, I would have
said no, but so we just we hadantiques ranging from 40 to 70.
So you do not discriminateagainst young people.
Speaker 4 (46:21):
They just have to be fun.
Yeah, yeah, ok, I love that.
So for next year, anyone that'slistening if you want to be a
part of the Antiques Roadshow,you want to be a part of the ALS
TDI Trek, definitely.
I'll put a link in the shownotes to ALS TDI.
(46:43):
You can sign up and getconnected with them, learn all
about it, how you can getinvolved.
And if you absolutely cannotbike but you want to be at one
of the stations, there's a lotof opportunities for you there
as well.
Yeah, I know that I only have Ihave four of you here, but I
(47:08):
know there were other peoplethat were on your team and in
person biking with you.
Yeah, tell me about who elsewas on your team.
Speaker 5 (47:17):
My friends from Chicago, Bill and Trudy Falk and
Don and Scott Fransgrove andthey joined me when I rode the
first time in 2018.
And they kind of saw picturesonline and saw how much fun
Jenny and I had.
So they're like we're doing itnext year and they're saying
they're going to come back, sothey travel a long way.
(47:39):
And then I'll mention my cousin, Allie McGrath.
So that's part of our team andI'll let the other girls share
the other ones.
Speaker 3 (47:48):
Yeah, well, I'll talk about Lori Larson Heller, and
her person was Jim, who has beenpart of the track for I'm not
sure how many years, but she'salways there as part of the
cheer team, and so she was ourantiques cheerleader and just a
(48:08):
great, great part of our team,and we appreciate all she does
to keep us pepped up.
Speaker 4 (48:15):
Heck, yeah, that's an important role.
Speaker 6 (48:18):
Absolutely.
Speaker 1 (48:20):
Yeah, and who drove with you from the Midwest?
Speaker 6 (48:24):
Yeah, tina, tina Lee, who joined.
She lost her husband, brent,two years ago.
She lives just south of me inIndiana and when she all of us
get together on our after ALSZoom calls on Wednesday and Tina
met all these ladies and she'slike I want to be like them, and
(48:46):
that's a great example ofsomeone who just lost her loved
one and has found solace in thisgroup.
And so she came with me and mycohort, mandy Bailey, who is
amazing.
She's our youngest antique butshe is always up for a challenge
and to spend time with all ofus.
She lost her stepdad, fred, andshe was part of the team.
(49:09):
Unfortunately was not able tojoin us because of a death in
the family, but was there inspirit and cheered us on.
Speaker 1 (49:17):
Jenny mentions.
A great thing about the trek isthat.
You're right, laura, you canride, you can be at the stations
handing out food the rest stopsbut you can also be a
cheerleader.
Yeah, and you can do roadsupport.
I saw so many cars drive by mejust being road support.
(49:39):
Are you OK?
Do you need anything?
Speaker 6 (49:41):
No, Nice, sorry.
One of the questions asked wasa word that we thought of and
I'm going to share a word.
I felt like this trek wasredeeming.
I felt like you go through somany difficult things in ALS and
you also go out and you educateas advocates and you are on
patient advisory boards and youdo as much as you possibly can,
(50:02):
but this trek is for you and itis redeeming the love and the
support that you're engulfed inwhen you step out of the car and
onto that campus and peoplerush up to hug you and meet you
and greet you and spend the nexttwo days with you.
Just total redemption, yeah.
Speaker 5 (50:22):
I can jump in with my word, and it is well I couldn't
just pick one.
But my word is healing and lovefest.
Speaker 3 (50:35):
And I will say my word.
Two words are resilient joy.
Yeah, very good, resilient joyyeah enjoy, yeah, and mine would
just be fun, yeah, fun, fun.
(50:55):
Yeah, if I can just again givea shout out to alstdi and the
fabulous, fabulous event thatthey put together, and there is
not one thing that they will notgo the extra hundred miles for
for you to have a successfulride.
And, yeah, it's just a afabulous event staffed by
fabulous people.
(51:15):
And, yeah, I know that thatthrough the hard work that the
scientists do at alstdi, we willfind a treatment, or 20, and a
cure.
Speaker 4 (51:27):
Yeah, absolutely.
And to my listeners if you havetuned in before, you might have
heard me talking to Fernando,who's the lead scientist there.
Other scientists have done aentire episode on ALS TDI, so
you can go back and look forthose as well.
(51:48):
And yeah, and even if you can'tget in the track, you can do it
virtually.
So I finally wrapped up myvirtual component, doing 200
miles in 25 days, which was kindof insane because I did it over
vacation.
Insane because I did it overvacation and I've never like put
(52:14):
a goal and challenge out therewhile I was on vacation.
So it was really good for me andI was like walking or biking
however I could, if I was homefor a few days and can get on my
incumbent bike or find a bikein the gym.
So I was just trying to figureout how I can log that.
So, yeah, you can be a part ofit virtually and you can design
(52:38):
your own trek however it worksfor you.
So you ladies have been amazing.
Before I let you go, I want toask you all what you're dying to
tell us.
Caroline, what are you dying totell us?
Speaker 1 (52:56):
I am dying to tell you that.
It may not seem like it, butthere's a whole lot of life
after ALS.
Speaker 4 (53:05):
Perfect Jill.
What are you dying to tell us?
Speaker 6 (53:10):
Well, caroline stole mine, but I'll come up.
I am dying to tell you that,although grief will now live
with you forever, if you've lostsomeone to ALS, you are welcome
to join our community and weare here for you, no matter what
.
Speaker 4 (53:32):
Thank you, Jenny.
What are you dying to tell us?
Speaker 3 (53:36):
I'm dying to tell you that within this community,
there are people who are here tosupport you and love you
through every step of it, andyou are not alone and you are
always welcome to join andyou're always welcome to step
out when you need to take abreak.
(53:57):
We're here for you at any pointduring your journey.
Speaker 4 (54:03):
Good point, Tam.
What are you dying to tell us?
Speaker 5 (54:07):
I'm dying to tell you that, although the aftermath of
ALS is hard for those of usleft behind, there are
incredibly thoughtful, lovingand supportive friends and
organizations who know andunderstand at least part of your
journey and, although the lossand the grief never goes away,
there are true joyful moments inand out of the ALS community.
(54:31):
So, like the trek, especiallygoing, you know, to one of the
many fun things that you can doand joining the Antique Roadshow
is one example and everyone iswelcome, all ages.
Speaker 4 (54:55):
Yeah, example, and everyone is welcome, all ages.
Yeah, oh, thank you so verymuch for being here today, for
sharing your experiences, but,most importantly, for continuing
to really be here for all of us.
I really appreciate you all.
Speaker 1 (55:13):
No, Lori, you're so incredible.
You're amazing, Lori, and youknow, from the minute I met you,
that was the first thing youtold me Was thank you so much
for staying in the fight.
That was the.
I'll always remember.
That was the first thing.
You told me, that I wouldn't beanywhere else.
Speaker 4 (55:31):
It's the one thing that brings me to tears every
time, like I, I just feel it inmy bones.
Speaker 6 (55:38):
You are a shining star in this community and you
bring so many people togetherand you've done such stellar
things and we are all indebtedto you for everything that you
do, and we love you, girl.
Speaker 4 (55:49):
Aw, love you all back .
Yeah, I appreciate you allsacrificing.
Speaker 5 (55:54):
This was so much fun, lori, it really was.
We love you.
Speaker 4 (56:02):
What I absolutely love about these women is that
they remind us that, no matteryour age, your skills or your
grief, you still have somethingpowerful to give.
Yeah, look what they are givingeach other every day and the
(56:28):
hope that they are giving all ofus who are living with ALS.
Whether it is riding 30 miles,300 miles, whatever they are out
there, in this season of theirlife, they're all over 60.
They are making a difference.
(56:50):
One mile at a time, one hug ata time, one encouragement after
another.
Thank you again, caroline, deb,Jenny and Jill.
Keep moving forward and sharingall the love and experience
(57:11):
that you have with our preciouscommunity.
It is not too late to supportthe Antiques Road page, and you
can find the show notes onFacebook and the website, both
(57:36):
at I'm Dying to Tell you podcast.
Hey, if you are new here andyou want to stay connected, you
can find me pretty mucheverywhere on social media, all
at I'm Dying to Tell you podcast, facebook, twitter, instagram,
(58:00):
linkedin and even TikTok.
Okay, thank you so much forbeing here.
Until next time, know you areloved and not alone.
Thanks for listening.
Speaker 2 (58:22):
Thank you for listening to our mom.
Make sure to visit her websiteat imdyingtotellyoupodcastcom,
where you'll find photos andshow notes about this episode.
If you liked this show, pleasesubscribe to the podcast and
share it with a friend.
Thank you.
Hey, I'm Paul and I'm Christian.
Welcome to.
I'm Dying to Tell youinspiration shared by our mom,
who is dying from ALS.
There is no cure for our mom oranyone else with ALS, but right
now she's on a mission to findand share stories of inspiration
Coming to you from Cincinnati,ohio.
We're happy to introduce theone lady we've both loved since
the first day we laid eyes onher the queen of the queen city,
(00:32):
our mom, your host of.
I'm Dying to Tell you.
Speaker 4 (00:55):
Thank you for being here, welcome, welcome if this
is your first time and if youhave been here before, welcome
back.
So so grateful for each of you.
Well, I'm really excited abouttoday's episode because there
are some powerful, amazing womenthat I am getting ready to talk
(01:23):
to.
I know them because they are apart of the ALS community.
Unfortunately, each of them haslost someone to ALS, so for
them, the season that they arein is after ALS, and the way
(01:45):
that they are handling grief,the way that they have leaned
into community, really, reallyinspires me.
And even if you don't have aconnection with ALS, with ALS,
(02:10):
chances are pretty good that youhave lost someone in your tribe
and man.
That is just the toughest andit can really take you down.
Which is why I am encouragingeveryone to into this episode,
because each of these women havelearned so much about grief and
(02:30):
about living with grief andabout moving forward in the new
season of life without theirvery important person.
And I don't think that they'regoing to tell us that they have
all the answers or that life isgreat every single day, but I
(02:52):
bet they have some really goodinsights on what they have done
to best live in this season andone of the things that they have
recently done, they formed ateam in ALS TDI's Tri-State Trek
(03:18):
, and it is a cycling event andthey had a lot of fun with it,
starting with the name of theirteam, which is Antiques Roadshow
for ALS.
So I'm sure we're going to hearall about their team, how this
(03:42):
even came to be and what theywant you to know about their
experience there.
So I'm going to let my guestsintroduce themselves.
But I, her sister to ALS, jennyDwyer, jill Bratton and Deb
(04:10):
Poust and all three of them havelost their husband to ALS.
Here they are fighting for allof us that are living with ALS.
They are getting on bikes, theyare riding who knows how many
miles, they are dressing up intutus and calling themselves
(04:35):
antiques, all in the name oftrying to find effective drugs
and treatments for ALS.
We had a heck of a time tryingto schedule these for women.
They are busy, busy, but todayI've got them jumping on Zoom
(04:58):
and super excited for you tomeet them.
So let's go on over to our chat.
Let's go.
Speaker 1 (05:10):
Good morning.
Good morning, I'm at mybrother's plastics company in
Pennsylvania.
Those are the silos that arefull of plastic, whatever.
Speaker 6 (05:23):
I am in a hotel room in La Crosse, wisconsin, so
we're coming to you all over theplace.
Speaker 3 (05:29):
Hi everyone, hi Jen, hi Jenny, I'm coming to you from
Blakely's bedroom in Alaska.
Speaker 5 (05:38):
I'm coming to you from a spare bedroom in
Jacksonville, florida, mybrother's house.
Speaker 4 (05:44):
I love it.
I love you, ladies.
Oh my gosh.
We did it All right.
This is the accomplishmentright here, and thank you all so
much for sacrificing.
I know traveling and up at allhours in the morning to try to
(06:08):
get together, so I'm so in aweof those of you that stay in the
community, because how easythat would be to walk away and
say I don't ever want to hearALS again.
I don't want to witness all theheartache that people are going
(06:31):
through, and so, first of all,thank you for continuing to be
here and do everything that youall are doing, so I appreciate
it, and do everything that youall are doing, so I appreciate
it.
Speaker 5 (06:46):
Thanks so much for saying that, Lori.
Speaker 4 (06:48):
Yeah, really, I mean, I don't know, I don't know if I
was in your position when Iwent to it's easier because we
have each other.
Speaker 5 (07:00):
We have found each other, yeah, and yeah, I don't
know how long I'd stay in thisif I would, if I wasn't hanging
out with these ladies, you know.
Speaker 6 (07:11):
Yeah, yeah.
And there are so many peoplethat say, and it's true, we get
it.
We get what each other aregoing through, and the support
that we find in each other helpsus continue to do this.
I don't think any of us want towalk away.
We have a commitment to ALS fordifferent reasons, but it also
is so helpful to have peoplethat understand you and
(07:33):
understand the trauma and thePTSD that you carry with you
from this disease and are thereto support you.
Speaker 2 (07:40):
Yeah.
Speaker 5 (07:41):
Yeah, and the other thing is is I think there's a
misconception that all we do istalk about als and and we don't.
We, you know we're friends.
We talk about other things.
So it's not like we're a youknow als 100 of the time, and a
lot of us are the same age, wehave children, we have
(08:02):
grandchildren, and so it's notspecifically an ALS relationship
, it's a true friendship.
Speaker 3 (08:10):
Yeah, I like that and I think too for me.
You ask how we can stillcontinue to stay in this fight.
And it's because, number one,we have to end this disease.
But we continue to meet newpeople along the way, like you,
who inspire us.
And you know after I've alwayssaid after you met ALS, you
(08:34):
can't walk away from it.
And you know I can't turn myback on the people that are
fighting this disease now,because I know what the end is
going to be on the other sideand I will do whatever I can to
make that not happen forsomebody else.
Speaker 5 (08:54):
And I think the other piece of that too is that the
heartache, especially for thoseof us who have children and had
to see our children go throughthis disease with our person.
I would love to have a cure inmy lifetime and, I think, my
(09:15):
children.
We don't have a familialcomponent to ALS, but I think
there would be a collectiveexhale and relief and probably a
better quality of life if therewas a cure, and I want that for
my kids and my grandkids andfor every family that has
endured that diagnosis.
Speaker 1 (09:37):
And no family should have to go through this.
That's what we're fighting for.
No family should have to gothrough this.
And Deb's right, hopefully atsome point in our lifetimes, boy
, wouldn't it be nice if thatwere the case.
Speaker 6 (09:50):
Yeah, and I'll just.
I'll just add to that.
You know my husband, dave, wasa veteran and, as we know,
veterans are at least twice aslikely to be diagnosed with ALS.
In 99, there was a militarymedicine study that said it's
more to six to 10 times morelikely to be diagnosed with ALS,
depending on your job.
(10:10):
Our son, who is active military, has one of those jobs.
So you worry about what thisnext generation is going to face
, and Jenny said it so well youcan't walk away from this fight
when you've been so intimatelyinvolved in it.
Speaker 5 (10:26):
Yeah, yeah.
One thing I do want to say isthat, you know, I have a lot of
friends that I have met yearsago that don't stay in the fight
, and I respect that too, and Iknow everyone here does as well.
It's not for everyone andthere's no shame or guilt or
judging for those who don't, whoare not able to do that, and
(10:49):
that's just important to share.
Speaker 4 (10:50):
No, no, I love that.
That's a great point, and Ifeel like even those of us that
are living with ALS, I mean, forall the people that you see out
there on social media, there'sway more than that that you
don't see and you know.
Again, that's okay, like.
(11:12):
However, you have to process,however, you have to live with
it, totally okay.
Yeah, good point, you guys aredoing great, like.
I love how you're just jumpingin, absolutely perfect.
Let me go back.
Why doesn't everyone just goaround introduce yourself so
(11:36):
that the listeners know he'stalking, since we have a full
house here.
Since we have a full house here, caroline, why don't you go
first?
Speaker 1 (11:56):
I'm Caroline Shredway .
I live just north of Manhattanand my sister Nell was diagnosed
with ALS in 2009.
She was the youngest of foursiblings that I had five
children in total.
She was diagnosed in 2009 andwhen I tell you, she lived with
ALS, she went on cruises, shewrote newspaper columns with her
(12:18):
Toby Dynavok, but sadly we losther in 2017.
She was the mother of threechildren and the aunt to 10
children.
She lived for eight years withthe disease.
She was on a ventilator.
Speaker 4 (12:38):
three years in she developed pneumonia and was on a
ventilator for the rest of herlife with ALS.
Mm-hmm, that had to have beenreally hard, as a big sis for
sure.
Speaker 1 (12:50):
Mm-hmm.
Speaker 4 (12:51):
Yes, yeah, okay, jill .
Speaker 6 (12:53):
Hi, I'm Jill Bratton and I live just northwest of
Indianapolis, indiana.
My husband, dave, was diagnosedwith ALS in May of 2015.
He was an Army veteran thatserved during the Vietnam era,
did not see conflict in Vietnam,but served during that time
(13:14):
frame, and he passed from hisjourney with ALS in January of
2019.
We have three amazing kids thathelped us immensely during that
time.
Those three kids have blessedme with six grandchildren, soon
to be eight grandchildren.
Dave got to meet one of thosegrandchildren.
(13:37):
He absolutely loved our family,he loved adventure and we loved
our life together.
Speaker 4 (13:49):
Okay, Jenny.
Speaker 3 (13:53):
Okay, composing myself here, I know I'm like I
was starting to cry when youfirst got online, lori, and
started talking.
I'm like, oh, this is not goingto go.
Speaker 4 (14:07):
Well, I know I'm like wait a minute.
I didn't think this was goingto be emotional.
Speaker 3 (14:14):
So my name's Jenny Gordwyer.
I live in Seattle, washington.
My husband, pat, was diagnosedwith his ALS in 2005 and lived
with it for eight years, passedaway from his disease in 2013.
He hated everything about ALS.
(14:34):
He was type A personality andyou know you do things right the
first time and with ALS thatdoesn't happen but in spite of
that he made the most of everyday.
He always said ALS wasn't goingto define him and in the course
(14:55):
of his disease we boughtanother boat, we got it ready to
fish in Alaska and he set us upfor living without him, which
you know.
I can't even imagine how he wasable to do that with everything
he was going through with hisALS.
(15:17):
We have two kids, my daughterBrenna and my son Sean.
They're 36 and 33.
I have a beautifulgranddaughter, blakely Jade,
who's almost four, and it's been12 years since Pat passed away
and every morning I wake upstunned that he's not with me.
(15:40):
We just miss him every day withme.
Speaker 4 (15:41):
we just miss him every day yeah, yeah, I know a
lot of people have said to methat you know they feel like
it's a bad dream that one ofthese mornings they're just
gonna walk through the door likethey were on a golf trip or um,
you know, just hard to believethat's your reality.
All right, tim.
Speaker 5 (16:02):
Hi everyone.
I'm Deb Paust and I liveoutside of Chicago and my
connection to ALS is that I lostTim, my husband.
We were childhood sweethearts.
He was the love of my life andwe were blessed with three great
kids Brad, sammy and Jake.
(16:23):
I am a grandmother of three andanother one in about three more
weeks.
So that's me and Tim had.
(16:47):
Al was this great guy who lovedlife, he worked hard and he
played hard and he just wantedto have fun and that's what we
did.
We had a very nice life and wewere just devastated, as
everyone is when they get thatdiagnosis.
But I have to say, you know,tim was a stubborn guy and he
(17:10):
wasn't going to let ALS win andwe had a bucket list that we
worked mine and his and wereally had some good quality
time despite ALS.
Yeah, yeah, yeah.
(17:31):
So you know.
So he's been gone for 11 yearsnow and it feels like yesterday
and forever all at the same time.
And I also agree with whatJenny said is, like you know,
she wakes up stunned andsometimes I I just can't believe
that it happened and I feellike that sounds a little crazy,
but I know my friends hereunderstand that.
Speaker 4 (17:54):
Oh, you know I listened to you ladies talking
about your children and yourgrandchildren.
Anyone want to comment just onlike how does that feel?
I would imagine that it's sucha blessing to obviously see your
family grow, have thatcommunity, have that extra
(18:17):
comfort and joy in your life,but yet I would imagine that
you're also saying I wish theywere here to see this.
Or do you look at anyone andsay I see my sister or I see my
husband in you and you know,kind of get that daily earthly
(18:41):
reminder of their spiritabsolutely go ahead, jill, do
you want to?
go ahead.
Everyone's shaking their hand.
Speaker 6 (18:51):
What a great, great question and what a great point,
lori.
It is such a bittersweet thing,I would say, for me and
probably for all of us.
Every grandchild that is bornto our family has chubby cheeks
and it was kind of known for hischubby cheeks and so we always
say Papa sent chubby cheeks withthis one, and you know the kids
(19:14):
are so good about talking totheir kids about Papa that they
feel like Papa is still part ofthe family.
And he is, of course, still partof the family.
He may not be physically here,but he is still a big part of
this family and it brings me joyto see his mannerisms show up
(19:34):
in our kids and then show up inthe grandkids, see how they
resemble him so much and see howhe is still part of this
Bratton family and will alwaysremain part of this Bratton
family.
Speaker 4 (19:49):
Oh my gosh.
Yes, absolutely yeah.
Speaker 5 (19:53):
Yeah, that is super sweet, Jill.
I definitely see it in my threechildren and it's really a
great joy.
It's those ordinary experiencesof a regular day.
Yeah, that and yeah, they'rejust great reminders of Tim in
(20:13):
the best ways, and sometimes notin the best way, because Tim
was stubborn.
Speaker 4 (20:19):
And you're like and there he is again, yeah, yeah,
oh, that's awesome.
Anyone else jen?
Speaker 3 (20:28):
um, I definitely see pat in both my kids.
They both have differentqualities that were him I'm
starting to.
You know I obviously I did notknow Pat when he was a young boy
or growing up, when he was 25,I was 24.
(20:49):
But as I watch Blakely, thereare definitely some mannerisms
that I see.
And probably the most strikingthing for me about Blakely is
that Pat was born on April 14th,so 4-14.
And those are kind of like ournumbers, that anytime a 4-14
(21:12):
pops up we're like hi, pat.
And it happens more often thanI anticipate and usually at the
most strange times when I'mreally needing him, at the most
strange times when I'm reallyneeding him.
And Blakely was born on August28th and if you divide those
(21:34):
numbers in half it's 414.
And we all were like oh, she wasborn.
Speaker 4 (21:42):
If she couldn't be born on 41414,.
Speaker 3 (21:45):
She was born on 8-28.
Speaker 4 (21:48):
Oh my gosh.
Speaker 3 (21:49):
So I feel like Pat will be a part of her life for
forever.
Speaker 4 (21:55):
Yeah, so that's super special, absolutely.
Speaker 3 (21:59):
Absolutely.
Speaker 4 (22:01):
Yeah, yeah, caroline, is there anything about your
sister that kind of fueled youto be a part of this antique
road show?
Like you said, that she wasreally adventurous and you know,
did you think of that when youdecided that you were going to
(22:23):
do the Tri-State track?
Speaker 1 (22:26):
Oh, definitely, Definitely she.
Well, first of all, she wouldhave been right there with us.
She would have loved the ideathat we were cycling for monies
to go to research yeah, Mostdefinitely.
And secondly, she was I'm sortof the conservative one between
(22:50):
the two of us and she would havebeen right there with the
jersey, with the tutu, withloved being with a group of
women in a college dorm.
She, just she was theadventuresome one.
She was a big equestrian andwould drive those horses, those
(23:17):
huge animals, aroundcross-country courses and around
dressage units and betweendressage units.
And though I wasn't riding ahorse, I was riding a bike.
And when I was out there ridingmy bike, I thought you know,
I'm one with Nell really.
(23:39):
Yeah, I really did.
She would have loved it.
Speaker 4 (23:44):
Oh's awesome.
So let's talk about the antiqueroad show first of all.
How many ladies?
70, 60, 70?
Wait a minute.
Wait a minute, caroline.
How are you?
70?
You are jill.
(24:05):
How old are you?
Speaker 3 (24:08):
I'm 62, jenny I'm 63 damn 61.
Speaker 4 (24:15):
Okay, you're all over 60, all right, so, and then uh,
team captain jen.
Speaker 3 (24:24):
Yes, but in name only .
All these other ladies did allthe work.
Speaker 4 (24:31):
Okay, all right.
All right, let's talk about theAntique Roadshow.
So, for the listeners who arenot familiar with the Tri-State
Trek, it is one of the signaturefundraisers for ALS TDI and it
takes place in June and it is aweekend of cycling 200 miles in
(24:55):
a weekend 100 miles on Saturday,100 on Sunday.
Tell me, ladies, you did not do200 miles.
Speaker 5 (25:08):
No, they switched it up.
They used to do a three-daytrek that was 270-ish miles, and
I don't know how many yearsthey did that for, but in the
last past several years they'vechanged it to a 100-mile course
or a 30-mile course.
Speaker 4 (25:26):
Oh perfect.
Speaker 5 (25:28):
So you're looking at the 30-mile girls.
Speaker 4 (25:31):
Hey way to go.
So you did 30 miles on Saturdayand 30 on Sunday.
Speaker 3 (25:39):
Yeah, no, we did not do 30 miles on Sunday.
We all accomplished our 30miles on Sunday.
We all accomplished our 30miles on on Saturday.
Deb actually did 44, becausethat's Tim's number.
So she, she and a couple of herfriends rode to 44.
Sunday it was thunderstorms andraining and the roads were wet,
(26:01):
and I'm a picky bike rider, soI decided not to ride on wet
roads.
Uh, just because you're not.
Speaker 4 (26:11):
Antiques are smart you're right, there we go.
All that experience and wisdomhave led you to very good
decisions.
I love it.
So how did you guys even decidethat you were going to get
together and ride?
Speaker 5 (26:29):
I think it started last year I was riding, I
decided I wanted to ride.
And then Jenny's like well, ifyou're going to do it, I'm going
to do it.
So then we were a two-womanteam and a lot of our friends
were like you're riding, I think.
People were like you're riding,you're you know, I think people
were surprised we were riding,yeah and um.
(26:50):
Then people were saying well,you know, we had a lot of fun.
We were.
We were really all about theconnecting with the community,
um, and and the snacks.
They have really good snacks.
They feed you so well on thetrack or on the track.
And so we were all about wewere just having fun.
(27:11):
And people could see that.
And so people were saying lastyear, you know what, I think I'm
going to ride with you nextyear.
Speaker 3 (27:18):
Oh good, well, and I remember being at Caroline's
rest stop and and you know wecame in and we're, you know,
having fun and eating goodsnacks and you know Caroline was
, caroline was like I shouldride, I'm like you can totally
ride 30 miles, 30 miles, and sothat kind of that kind of
(27:41):
started everything.
It's like everybody that wetalked to, it's like it's 30
miles, you can do it.
Speaker 5 (27:48):
And we weren't even sore, like we didn't feel like
we trained very well for it, andwe were kind of nervous Like
what if we can't and we could,so do it.
And we had a blast, and weweren't even sore the next day.
So we were bragging about it,weren't we?
Speaker 4 (28:09):
yeah, I think we were right, jenny yeah, you're like
no big deal, because none of youare like big bikers, right?
No, no, I mean maybe, maybe mea little bit.
Speaker 5 (28:21):
You know big, but I do it somewhat frequently yeah,
and laurie, I mean laurie.
Speaker 6 (28:26):
When you listen to jenny and deb, how can you say
no, maybe me a little bit.
You know big, but I do itsomewhat frequently.
Yeah.
Speaker 2 (28:31):
And.
Speaker 6 (28:31):
Laurie, I mean Laurie .
When you listen to Jenny andDeb, how can you say no, I mean
they are.
They're like come on, we'llhave this great time, we'll be,
it'll be wonderful, and I'm likeokay.
Speaker 1 (28:38):
I'm in and I kept telling Jill what a wonderful
experience this was.
I've been.
This was my fifth track, Ithink, but I had always been the
person at the rest stops.
I've been through for thoseyears, and and Jenny's right,
when they came in and I saw howmuch fun they were having, I
(29:01):
said, geez, I can do that, I cando that.
So that's how we were born, andwe came up with some very good
fundraising ideas too, andcurrently, you're at $28,420.
Speaker 4 (29:28):
So you have crushed your goal.
So I don't even care whathappened on the track, but you
guys are killing it here withyour fundraising goal and, of
course, all of that money goesdirectly to ALS TDI for the
research that they're doing totry to find effective drugs and
(29:50):
treatments for ALS.
So that's great and I love that.
You guys are showing that.
I mean, you're showing so manythings by coming together and
doing this and showing that agedoesn't matter.
You know in this season of lifethat you can do something and
in some cases, do something new,something physical, something
(30:14):
independent.
You're showing the power ofcommunity and coming together
within your team and within theentire ALS TDI community.
Speaker 6 (30:29):
Lori I would love to kind of speak to that.
You know, when Dave wasdiagnosed we had a phenomenal
clinic here in Indianapolis andwe became good friends with
those people and we really feltsupported and loved and we had a
support community that cametogether other people with ALS
and I made connections with thewives of those veterans and it
(30:53):
just felt so good to be part ofthat community.
And I feel like our ALScommunity is like that.
When you're diagnosed there arepeople that come beside you and
support you and love on you andcommunicate with you and then
when your loved one passes it'salmost like a door is shut.
You know you are not part ofthat integral ALS community
(31:15):
anymore.
You have your own grief thatyou're dealing with.
You have your own difficultiesthat you're dealing with and I
find myself looking around andsaying now what?
Where is that wonderfulcommunity that I loved so much
and just felt like family.
And then I found these ladiesand I found people that knew
exactly what I was going throughand wanted to support me
(31:37):
through that and knew they weregoing through the same thing and
we had that in common.
And that love just exudes evenmore when you get together with
these people anybody who haslost a loved one to ALS.
And so there's a community outthere for people who have lost
their loved one, and I don'twant them to feel left out in
(31:58):
the cold.
I don't want them to feel likethey have to do this alone.
That's what we're all here for.
Speaker 4 (32:04):
Yeah, I love that.
Speaker 5 (32:06):
Lori, you said all those really great things.
What we were demonstrating asour team.
But my hope and I kind of thinkwe do this is we show other
people who are caregiving nowthat the after ALS there's joy,
and I hope we're showing thatwe're surviving this.
There's joy and I hope we'reshowing that we're surviving
(32:27):
this.
We're surviving the after ALS.
Even though it's hard, we arecreating joyful moments and
we're doing good to thecommunity.
Speaker 4 (32:37):
That's a great great point.
Speaker 1 (32:38):
You're here, definitely and honestly.
It's almost like an adultsleepaway camp this weekend, the
weekend up there in NewHampshire, and it's just all
these people we've said it, butall these people who know
(32:59):
exactly what happened and whatyou've been through.
I this year met a woman who hadlost her sister and it was such
a lovely time that we spenttogether, you know, a couple
hours just sitting there talking, remembering our sisters, and
(33:20):
it's just lovely, you know.
Yeah, yeah, it's a wonderful.
Like Jenny spoke on Saturdaynight, they have an open mic
night when anybody can go up andspeak, and Jenny put it very
well that there was a whole lotof love under a big tent that we
had our meals and had ourprograms in, and it was just
(33:44):
lovely, full of love.
Speaker 5 (33:47):
And it was palpable, Like you could feel the vibe.
As soon as you get on thecampus there's a vibe and it's
really special.
Speaker 3 (33:57):
Yeah, and I think one of the other things too is that
you know most of the peoplethat do the track have a
connection to ALS.
Sometimes other fundraisersthat we do or go to there are
people there that are supportingyou, that but they haven't
lived through the whole journey.
And I think at the trackbecause most everybody is there
(34:22):
for the same reason, you knowthey've been affected and they
want to end this disease.
And I remember last year when Iwalked on, like Deb said, when
I walked onto the campus, or wasit Carolina, I can't remember.
But you're just all of a suddenthere's this fantastic vibe
that you are not alone andpeople understand what you've
(34:44):
been through and we're all herejust trying to do the best that
we can and and support researchand support those families who,
who might not have the ways orthe means to help in any way.
And it is, it's a temple oflove.
Speaker 6 (35:02):
Yeah, and if I could add, just quickly add to that
too, the Halas TDI group isamazing.
Every person who works for ALSTDI, I feel like, is there.
Every person who I hadn't evenknown came up to me this is my
first year, this was my firstyear Came up to me and hugged me
and said why is it taking youso long to get here?
(35:23):
We're so happy to have you hereand I'm like wow, these people
are amazing.
Speaker 1 (35:30):
Yeah, and you're riding your bike right beside
research scientists, who quicklyleft me in the dust, but
they're riding right there withyou.
Yeah, it's wonderful.
Speaker 4 (35:45):
Yeah, and that's great.
And, Jill, you said somethingthat struck me about you know,
you have this community and thenafterwards you were like now,
what kind of thing?
And you know, I've been in thiscommunity living with ALS for
21 years, so I have seen thatand I have seen so many
(36:06):
caregivers like where do I go?
I was really involved in thecommunity, not only taking care
of my person, but how can I help?
And where do I go?
And like for us and our localsupport group I don't know if
it's still this way, but it wasIf you had lost someone, they
(36:29):
wanted you to go to a differentmeeting.
They wanted you to go to like acaregiver's meeting or a legacy
meeting, because they didn'twant to.
They didn't want it to be adowner.
Or like to scare people in asupport group by like saying, oh
, my husband died, which isunfortunate, but I have always
(36:50):
thought it was really important.
Like saying, oh, my husbanddied, which is unfortunate, but
I have always thought it wasreally important.
Right next to me I have a wallyou can't see it because of the
camera but full of people thatI've lost.
And they're not just likepeople that I know their name.
They're dear friends, and so,to this day, I continue to bring
together those people that havelost.
(37:12):
You know, we all do it at aMexican restaurant or we'll do
it here, but we, they're family.
And now, because it's been solong, some of them are getting
remarried, some of them have aboyfriend of them are getting
(37:32):
remarried.
Some of them have a boyfriendand it's kind of funny to see
because they're kind of likeunsure to tell me.
You know, I'm like hey, you'reliving your life, you found love
again.
That's amazing and it's justdifferent for me because I've
been here so long that I'mseeing that rotation of life
(37:53):
from those people that you'retalking about and to have any
kind of support and love outthere is really, really
important.
Speaker 2 (38:02):
So, yeah.
Speaker 6 (38:04):
Yeah, yeah, I think grief is a funny and difficult
thing and, however, you need tomanage it and get support for it
is extremely important.
And yeah, your life goes on,whether you want it to go on or
not, your life goes on and itchanges in different ways, but
(38:24):
that doesn't mean that you'reover grief.
You're never over grief.
You learn how to carry it withyou, and so to have people that
understand that, whether they'restill in the ALS fight or after
they've lost their loved one,they're in the ALS fight.
It's important to connect howis most meaningful for you?
Speaker 5 (39:00):
Yeah, I think part of what keeps me afloat and keeps
me like I said, tim was allabout having fun and I think I
do it for I do for myself, I doit in even more.
So I think that's my drivingforce to living fully, because
Tim couldn't and Tim lived likehe was dying, before he was
(39:20):
dying he just had that zest forlife and did all the things and
you know I tagged along on that.
But now I try to channel myinner Tim and find my happiness
and it.
You know I'm up and down a lot.
You know I have PTSD,depression and anxiety and it
(39:43):
fluctuates for me, but I reallyam trying to live fully and he's
my inspiration for that.
Yeah.
Speaker 3 (39:54):
Yeah, to follow up on your point, deb, I think it's
also important for people livingin the after ALS that you know,
yes, we go out and we have ourfun and we find our joy, but
there are moments where you dohave depression, where you do
have anxiety and PTSD, and it'sokay, we all go through it.
(40:17):
And you know, a lot of timesyou're sitting there going, oh
my God, no one does anyone evenknow what, what, what this like,
and finding these group ofwomen and and the ALS community.
You know again, you realizeyou're not alone.
The things that you're goingthrough everybody goes through
(40:40):
at some point and hopefully thatwill bring others comfort when
they're, when they're goingthrough their issues, when
they're going through theirissues.
Speaker 4 (40:49):
Yeah, and you know you guys didn't just lose your
person yesterday, you know, soto say that it's still an
occurrence, you know, depressionafter years that have gone by
and then that is okay, is reallyreassuring and it's like
(41:12):
emotions are okay and ups anddowns are part of life and I
love that you all continue totalk about your person.
I feel like when I was younger,if someone passed away, you
didn't talk about them.
You didn't say their namebecause you don't want to upset
(41:34):
the person, but I feel like, asa society, you know we need to
talk about the person.
I talk about my mom all thetime, all the time, and so I
hope that people talk about mewhen I go, like my kids tell
(41:57):
their kids.
I think it's really, reallyimportant.
Speaker 5 (42:03):
Yes, laurie, our people are unforgettable, and so
are you, but I don't think wehave to worry about them talking
about you for a while.
No, no.
Speaker 1 (42:15):
And Laurie on the back of our jerseys.
We are peddling for all of ourpeople and everyone affected by
ALS.
That was on the back of ourjerseys, so we kept them all
with us, yeah.
Speaker 4 (42:38):
You guys are amazing.
Speaker 5 (42:40):
I just want to go back to what we were talking
about before, about having eachother.
We all are on Zoom at leastonce or twice a week together
through our advocate work and wecan just tell, like nobody's.
You know, if someone's notsharing that they're struggling.
We know each other and we cansee it.
(43:01):
And if I'm not myself, I haveno game face.
And you know Jenny's calling,she's like all right, what's
going on, like you don't?
You know she can just tell, andvice versa with all of us.
We know and you know we'll sendan encouraging text or I'm here
for you and I mean that's justanother um.
(43:22):
You know it's a, it's an afterblessing that we share in our
friendship.
You know it's an after blessingthat we share in our friendship
.
We have each other, yeah, yeah.
Speaker 1 (43:33):
Yes, Just last week was the anniversary of my
sister's passing and it was solovely.
I got so many messages, textsfrom people you know, just
saying I'm thinking of you, Knowthat you're with me, and it was
(44:00):
.
It was just beautiful.
This is how do we describe ourcommunity.
This is the worst communitythat you want to belong to, but
it's also the best, because ALSreally is the worst disease.
But it's the best because thereare so many wonderful people in
it.
Speaker 4 (44:13):
Oh, I agree for sure, I see that every day.
Speaker 3 (44:16):
Yeah, I was just going to say I.
I remember that one of yourquestions was how did we, how
did we get our team name?
Yeah, and so the lovely MissCaroline actually came up with
it.
We, we were talking withcaroline and she had decided she
was going to join, and a coupleweeks later, deb and I got this
email from her.
(44:37):
She's like I've come up withthe most fabulous name for our
team.
And we're like what, what?
And she said antiques roadshowfor als and we're like, of
course, that's our team namecaroline, you were beaming from
new york and I saw it fromchicago.
Speaker 5 (44:56):
I could, she was.
Speaker 1 (44:59):
You were just happy as can be with that name, and we
are too yes, yes I love it andI tell you what it brings a
smile to everybody's face whenthey saw us.
Yeah, yeah, and Lori, we justdidn't wear bike jerseys and
shorts.
No, no, we had our.
(45:19):
You know, because we wereantiques, we had our pearls on
Deb.
Speaker 5 (45:26):
Deb, deb, deb.
I had my mother's pearlearrings, my grandmother's pearl
brooch, and then Jenny and Iwent to Goodwill and we got the
most antique-looking purses andsweaters.
Speaker 4 (45:44):
Oh, that's great, I love it and the tutus and the
tutus and the tutus.
Absolutely yeah.
Well, if I ever get to the trekin person.
I will join your team becausenow I am 60.
So I feel like I qualify forthe Antique Roadshow now.
When I was 59 a month ago, Iwould have said uh, no.
Speaker 5 (46:07):
But Now, when I was 59 a month ago, I would have
said no, but so we just we hadantiques ranging from 40 to 70.
So you do not discriminateagainst young people.
Speaker 4 (46:21):
They just have to be fun.
Yeah, yeah, ok, I love that.
So for next year, anyone that'slistening if you want to be a
part of the Antiques Roadshow,you want to be a part of the ALS
TDI Trek, definitely.
I'll put a link in the shownotes to ALS TDI.
(46:43):
You can sign up and getconnected with them, learn all
about it, how you can getinvolved.
And if you absolutely cannotbike but you want to be at one
of the stations, there's a lotof opportunities for you there
as well.
Yeah, I know that I only have Ihave four of you here, but I
(47:08):
know there were other peoplethat were on your team and in
person biking with you.
Yeah, tell me about who elsewas on your team.
Speaker 5 (47:17):
My friends from Chicago, Bill and Trudy Falk and
Don and Scott Fransgrove andthey joined me when I rode the
first time in 2018.
And they kind of saw picturesonline and saw how much fun
Jenny and I had.
So they're like we're doing itnext year and they're saying
they're going to come back, sothey travel a long way.
(47:39):
And then I'll mention my cousin, Allie McGrath.
So that's part of our team andI'll let the other girls share
the other ones.
Speaker 3 (47:48):
Yeah, well, I'll talk about Lori Larson Heller, and
her person was Jim, who has beenpart of the track for I'm not
sure how many years, but she'salways there as part of the
cheer team, and so she was ourantiques cheerleader and just a
(48:08):
great, great part of our team,and we appreciate all she does
to keep us pepped up.
Speaker 4 (48:15):
Heck, yeah, that's an important role.
Speaker 6 (48:18):
Absolutely.
Speaker 1 (48:20):
Yeah, and who drove with you from the Midwest?
Speaker 6 (48:24):
Yeah, tina, tina Lee, who joined.
She lost her husband, brent,two years ago.
She lives just south of me inIndiana and when she all of us
get together on our after ALSZoom calls on Wednesday and Tina
met all these ladies and she'slike I want to be like them, and
(48:46):
that's a great example ofsomeone who just lost her loved
one and has found solace in thisgroup.
And so she came with me and mycohort, mandy Bailey, who is
amazing.
She's our youngest antique butshe is always up for a challenge
and to spend time with all ofus.
She lost her stepdad, fred, andshe was part of the team.
(49:09):
Unfortunately was not able tojoin us because of a death in
the family, but was there inspirit and cheered us on.
Speaker 1 (49:17):
Jenny mentions.
A great thing about the trek isthat.
You're right, laura, you canride, you can be at the stations
handing out food the rest stopsbut you can also be a
cheerleader.
Yeah, and you can do roadsupport.
I saw so many cars drive by mejust being road support.
(49:39):
Are you OK?
Do you need anything?
Speaker 6 (49:41):
No, Nice, sorry.
One of the questions asked wasa word that we thought of and
I'm going to share a word.
I felt like this trek wasredeeming.
I felt like you go through somany difficult things in ALS and
you also go out and you educateas advocates and you are on
patient advisory boards and youdo as much as you possibly can,
(50:02):
but this trek is for you and itis redeeming the love and the
support that you're engulfed inwhen you step out of the car and
onto that campus and peoplerush up to hug you and meet you
and greet you and spend the nexttwo days with you.
Just total redemption, yeah.
Speaker 5 (50:22):
I can jump in with my word, and it is well I couldn't
just pick one.
But my word is healing and lovefest.
Speaker 3 (50:35):
And I will say my word.
Two words are resilient joy.
Yeah, very good, resilient joyyeah enjoy, yeah, and mine would
just be fun, yeah, fun, fun.
(50:55):
Yeah, if I can just again givea shout out to alstdi and the
fabulous, fabulous event thatthey put together, and there is
not one thing that they will notgo the extra hundred miles for
for you to have a successfulride.
And, yeah, it's just a afabulous event staffed by
fabulous people.
(51:15):
And, yeah, I know that thatthrough the hard work that the
scientists do at alstdi, we willfind a treatment, or 20, and a
cure.
Speaker 4 (51:27):
Yeah, absolutely.
And to my listeners if you havetuned in before, you might have
heard me talking to Fernando,who's the lead scientist there.
Other scientists have done aentire episode on ALS TDI, so
you can go back and look forthose as well.
(51:48):
And yeah, and even if you can'tget in the track, you can do it
virtually.
So I finally wrapped up myvirtual component, doing 200
miles in 25 days, which was kindof insane because I did it over
vacation.
Insane because I did it overvacation and I've never like put
(52:14):
a goal and challenge out therewhile I was on vacation.
So it was really good for me andI was like walking or biking
however I could, if I was homefor a few days and can get on my
incumbent bike or find a bikein the gym.
So I was just trying to figureout how I can log that.
So, yeah, you can be a part ofit virtually and you can design
(52:38):
your own trek however it worksfor you.
So you ladies have been amazing.
Before I let you go, I want toask you all what you're dying to
tell us.
Caroline, what are you dying totell us?
Speaker 1 (52:56):
I am dying to tell you that.
It may not seem like it, butthere's a whole lot of life
after ALS.
Speaker 4 (53:05):
Perfect Jill.
What are you dying to tell us?
Speaker 6 (53:10):
Well, caroline stole mine, but I'll come up.
I am dying to tell you that,although grief will now live
with you forever, if you've lostsomeone to ALS, you are welcome
to join our community and weare here for you, no matter what
.
Speaker 4 (53:32):
Thank you, Jenny.
What are you dying to tell us?
Speaker 3 (53:36):
I'm dying to tell you that within this community,
there are people who are here tosupport you and love you
through every step of it, andyou are not alone and you are
always welcome to join andyou're always welcome to step
out when you need to take abreak.
(53:57):
We're here for you at any pointduring your journey.
Speaker 4 (54:03):
Good point, Tam.
What are you dying to tell us?
Speaker 5 (54:07):
I'm dying to tell you that, although the aftermath of
ALS is hard for those of usleft behind, there are
incredibly thoughtful, lovingand supportive friends and
organizations who know andunderstand at least part of your
journey and, although the lossand the grief never goes away,
there are true joyful moments inand out of the ALS community.
(54:31):
So, like the trek, especiallygoing, you know, to one of the
many fun things that you can doand joining the Antique Roadshow
is one example and everyone iswelcome, all ages.
Speaker 4 (54:55):
Yeah, example, and everyone is welcome, all ages.
Yeah, oh, thank you so verymuch for being here today, for
sharing your experiences, but,most importantly, for continuing
to really be here for all of us.
I really appreciate you all.
Speaker 1 (55:13):
No, Lori, you're so incredible.
You're amazing, Lori, and youknow, from the minute I met you,
that was the first thing youtold me Was thank you so much
for staying in the fight.
That was the.
I'll always remember.
That was the first thing.
You told me, that I wouldn't beanywhere else.
Speaker 4 (55:31):
It's the one thing that brings me to tears every
time, like I, I just feel it inmy bones.
Speaker 6 (55:38):
You are a shining star in this community and you
bring so many people togetherand you've done such stellar
things and we are all indebtedto you for everything that you
do, and we love you, girl.
Speaker 4 (55:49):
Aw, love you all back .
Yeah, I appreciate you allsacrificing.
Speaker 5 (55:54):
This was so much fun, lori, it really was.
We love you.
Speaker 4 (56:02):
What I absolutely love about these women is that
they remind us that, no matteryour age, your skills or your
grief, you still have somethingpowerful to give.
Yeah, look what they are givingeach other every day and the
(56:28):
hope that they are giving all ofus who are living with ALS.
Whether it is riding 30 miles,300 miles, whatever they are out
there, in this season of theirlife, they're all over 60.
They are making a difference.
(56:50):
One mile at a time, one hug ata time, one encouragement after
another.
Thank you again, caroline, deb,Jenny and Jill.
Keep moving forward and sharingall the love and experience
(57:11):
that you have with our preciouscommunity.
It is not too late to supportthe Antiques Road page, and you
can find the show notes onFacebook and the website, both
(57:36):
at I'm Dying to Tell you podcast.
Hey, if you are new here andyou want to stay connected, you
can find me pretty mucheverywhere on social media, all
at I'm Dying to Tell you podcast, facebook, twitter, instagram,
(58:00):
linkedin and even TikTok.
Okay, thank you so much forbeing here.
Until next time, know you areloved and not alone.
Thanks for listening.
Speaker 2 (58:22):
Thank you for listening to our mom.
Make sure to visit her websiteat imdyingtotellyoupodcastcom,
where you'll find photos andshow notes about this episode.
If you liked this show, pleasesubscribe to the podcast and
share it with a friend.
Thank you.
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