Insight With Sylvia Maus 102625 Let Hope Grow

“After her husband, a veteran, was diagnosed with ALS, a local woman became a tireless advocate for other patients and their families.” lethopegrow.org

Episode Transcript

Speaker 1 (00:00):
Hi, I'm Sylvia Moss, and this is Insight, a presentation
of iHeartMedia, where we really do care about our local
communities and all our listeners who live here. You know,
plenty of us have faced us that heart wrenching moment
when somebody that we deeply love is diagnosed with a
serious health condition. It shakes us to the core, and

(00:20):
suddenly we're willing to do whatever it takes, move mountains,
cross oceans, anything to help them in any way that
we can. Well, my guest today has done exactly that.
In twenty fifteen, Laura Sawyer of Mechanics, received life altering
news when her husband Pete, who was a Vietnam VETT,
was diagnosed with ALS or as it's better known Luke

(00:41):
Gerrig's disease. Over the past ten years, Laura has faced
a deeply personal, challenging journey, and I've asked her to
come in and share that journey with us, and Howard
drives her unrelenting advocacy for al's patients and their families.

Speaker 2 (00:54):
Her story.

Speaker 1 (00:55):
I can hardly wait to get to it, Laura boyl Boy,
thanks so much for coming in, and I have so
many questions to ask you, but let's start with the basics.

Speaker 2 (01:03):
You know, we've only start recently hearing.

Speaker 1 (01:07):
ALS over the last couple of years, you know, I mean,
I don't even know if people connected ALS with lou
Gerg's disease. We heard lou Gerg's disease, then we start
hearing LS. But because of you, there's so many more
people know about ALS. Exactly, I think I have it
written down here, but I know I'm going to mess
it up. It's amyotrophic lateral sclerosis. Did I say that right?

Speaker 3 (01:31):
Said it better than I would? Okay? Good?

Speaker 1 (01:33):
What exactly in Layman's streams is it?

Speaker 4 (01:36):
It's where it goes in and it's a motor neuron disease,
so it starts tearing your nerves and stuff apart, and
then your muscles break down. Your mind is still there,
but everything else breaks down, and before you know it,
then you lose your breathing ability. And that's pretty much
where it ends.

Speaker 1 (01:53):
I guess it's different with different people. I mean, how
fast the degeneration is, right.

Speaker 4 (01:59):
Yes, there's no like stages, Like you're not in stage one,
stage two, stage three?

Speaker 1 (02:04):
Well, what are some of the signs of that are symptoms?
Because what I understand about. It's hard to diagnose because
it has a lot of the same symptoms as other
diseases like this, right, and I'm i calling is these
diseases like okay, I can call it disease?

Speaker 2 (02:18):
Is that right?

Speaker 3 (02:19):
Yes, there's limb on set and there's bullbar on set.

Speaker 2 (02:23):
What does that mean?

Speaker 4 (02:24):
Limb is when your arms or your legs or something
start being affected. First, okay, we start losing the muscle
in those areas. The bullbar is where it affects your
speech and swallowing.

Speaker 1 (02:37):
Does it always Do they always combine at some point
or you.

Speaker 4 (02:42):
Have one that they always combined or not? Because there's
I know there's people who cannot walk and stuff. You
can still talk or eat? Okay, stuff, Okay. What happened
to Pete? Tell us about his diagnosis? How why did
it all start?

Speaker 3 (02:56):
It started?

Speaker 4 (02:57):
Well, started watching American Idol and shows like that, and
he would sit there and cry, and I'm going, who
is this man? Because he would not cried that And
then he woke up one day and his face was
drooped and I thought we.

Speaker 3 (03:08):
Had a stroke.

Speaker 2 (03:08):
Right, that makes sense.

Speaker 4 (03:09):
Yes, we go to the doctors, we go everywhere, and
nothing they had him with the cardiologists everywhere. We finally
ended up with John Hopkins and they diagnosed him with als.

Speaker 2 (03:19):
Wow, well he was a veteran.

Speaker 3 (03:22):
He was a veteran.

Speaker 1 (03:23):
Yes, And I think one of the real important things
that you want to come out of our conversation today
is there's a connection between als and veterans.

Speaker 4 (03:30):
Yes, the largest group of people with als are veterans.
And that's not just here. If speaking to people who
have als and like your United Kingdom and stuff, and
they it's the same there. So there's a lot of
there's no real knowledge of why that is.

Speaker 1 (03:47):
Well, they don't know exactly what cause it is. What
is it about about my stress being?

Speaker 4 (03:55):
My thought is stress and the environmental chemicals or anything
like that, that is my idea.

Speaker 1 (04:01):
Well, i'll tell you what I think you might be
on the right track. And I think as I told
you a little earlier, and we chatting before we started
the program, that I did a program with the Parkinson's
Association and they say the same thing, environmental factors. And
there's a heck of a lot of people here in
central Pennsylvania who have it because of what you know, manufacturing. Right,
it's the street where I'm from that were colled, the

(04:22):
call holes and everything else, and there's a lot of
stuff with that, but what can we do? And yet
people don't want to They don't want to take a
look at our environment and what's going on. Anyway, that's
that's a whole nother story. Okay, So you went to
Johns Hopkins found out about it. But then you how
come you dined he was a vet? How come he
didn't go there to the veterans?

Speaker 4 (04:45):
Never thought any thing that he could be get any
help through them. I knew nothing about it.

Speaker 3 (04:51):
I called.

Speaker 4 (04:54):
The ALS Clinic or the ALS Association at that time
here and I said, can I get I need help
with some stuff? And they said, they asked me, is
he a veteran? And I said, oh, I don't know.
I wasn't married too, but at the time it was
in the military, so I said, And as I figured
it out, we found out yeah, and he fell out,
filled out all the paperwork. And now we go to

(05:14):
the VA in Lebanon.

Speaker 1 (05:16):
Tell me about what the time he had spent at Hershey,
About the what at the time at Hershey?

Speaker 4 (05:23):
What we do at Hershey's a four hour pretty much
about a four hour day. You go in and you
see every doctor that you need to see in one visit.

Speaker 2 (05:31):
That's good.

Speaker 3 (05:32):
It is.

Speaker 4 (05:32):
It's although when you're sitting here thinking, oh I want
to go home, Yeah, it's it's going to end.

Speaker 3 (05:38):
But it really saves a lot of time.

Speaker 4 (05:42):
So the neurologist is there for him, the speech therapist,
the dietitians, everything is there. Because our clinic, the VA
here does not have an als clinic, so that's they
send you there.

Speaker 1 (05:53):
That's why it is. Okay, Well, I want to know
more about Pete. So you guys when you were from
what I understand, when he was first diagnosed, it wasn't
as bad. I mean, the symptoms didn't okay, So you
guys just took off and did your thing, right.

Speaker 3 (06:09):
We did.

Speaker 4 (06:09):
We still kept living like we were for a very
short time because it very quickly hit that he could
not do a lot of things on his own. Within
a year, he was in the wheelchair. Is that right,
couldn't talk well, could still type out things, but couldn't
talk well. We got in the igazed computer, he couldn't
use that because his eyes fluttered too much. And he

(06:32):
spell out his name, it would be p pppe and so,
but that doesn't stop us from doing things we still
want on vacations and good. One of the big jokes
is the first vacation we went on was I called
it a vacation. We were going to a funeral in Illinois,
where he's from, and we made it to Cincinnati, Ohio, believe,

(06:53):
and I got up the next day and went, oh my,
I forgot his pills.

Speaker 3 (06:57):
Oh my, Oh so that's all the further we made it.

Speaker 4 (06:59):
We went back home and yeah, I was told, well,
you're the only person I know of that goes a
vacation to a funeral.

Speaker 3 (07:05):
But for me, it was that's okay. It was a
time out. It was a way to go.

Speaker 4 (07:09):
And a year ago we went to Lewis, Delaware for
vacation and I have to take a nurse with me
now because I can't. We would never get out of
the place and time to go do anything. But it
was a great vacation, although we had to find a
room big enough to rent a hospital bed and bring
all the equipment with you and all that kind of stuff.

(07:32):
And that's one of the things I'd like to see
in for people who want to take a vacation to
the beach.

Speaker 1 (07:37):
Through all this stuff you've learned. Oh my gosh, I
can't imagine what you've learned. You could probably teach a
class in this. And this is exactly what I'm getting at.
In the middle of everything, you decided to go to school.

Speaker 2 (07:52):
I did tell us about that.

Speaker 4 (07:53):
I went to school for my master I did the
bachelor's and social work and the masters right after. So
I spent five years of my time at home with
my husband going to school. And I did my internship
at the ALS clinic, So something I never thought i'd do.
I had started college a couple of times, never finished it,

(08:15):
and I was determined this time to make it through.
I wanted to help people, and I figured I needed
to have some of that knowledge to help some people.

Speaker 2 (08:24):
Did you know?

Speaker 1 (08:25):
You know people say now you hear or maybe two
or three years ago you heard kids are not being
hired because they don't have experience, and years ago it
used to be you don't have the education.

Speaker 2 (08:44):
I don't know what I've learned.

Speaker 1 (08:46):
I have both, but what I've learned is that life's
experience means more than anything.

Speaker 2 (08:53):
What have you found?

Speaker 4 (08:54):
I think life experience is huge, especially after going through this. Yeah,
I never in my entire life wanted to do anything nursing.
I ask my kids, they'd cut themselves and I go,
go get a band aid because I don't want to
see it. And now I put up with more things
than most humans do in a day.

Speaker 3 (09:14):
With everything I do with my husband.

Speaker 1 (09:17):
What's a day a typical I guess there is no
typical day.

Speaker 2 (09:20):
But what do you go through?

Speaker 1 (09:21):
I mean, does he get up or I can't even
say that's a poor trace of words, but tell us
about your day.

Speaker 3 (09:28):
Our day was a little more simple.

Speaker 4 (09:31):
But we would get up, we cast him, then we
would do his level throckx in and then we do
other meds. We do coffices, a nebulizer and coffeeist. We
clean him up, We get him in the shower, we
get him dressed, or if he wants to stay in bed,
it's his choice. He stays in bed. Then you start
food because he is on a feeding tube. You start

(09:52):
his food, then you go back and you repeat until
it spend time.

Speaker 1 (09:57):
How do you keep from crying? That's that is that's
the man, that's the love of your life. And I've
often wondered, like you see and what's his name? That
guy had passed away. That was brilliant in the wheelchair.
What was his name, Yes, Stephen Hawking. I think to
myself he had he had different things he could use,
you know, But I often wonder, this is a man

(10:21):
who stood by you, This is.

Speaker 2 (10:23):
A man who.

Speaker 1 (10:25):
Knew everything about He knew everything about you, and I
does ever, is there a way of diagnosing his mental state?
This has got to do it, Especially for men, I
wonder how what.

Speaker 3 (10:40):
It does to them.

Speaker 4 (10:41):
Yeah, he's he has no facial muscles anymore, so there's
no way of knowing, no thing there. Yes, the only
thing I can say is if it's an important question
about his health or his medical treatment. When or go
to the hospital for something, and I asked him a
question like do you still want full suscitation because you're
heading to the hospital. We blink for answers. One blink

(11:04):
is yes, two blinks is no. And when I ask
those types of questions, I get one blink that means
he wants to continue living. Two blinks would mean he didn't,
And I always get one, So that I take is
in at least understanding what's happening at that time.

Speaker 3 (11:23):
Depression. I'm sure there's depression in there.

Speaker 4 (11:26):
I mean I can't help but think I couldn't lay
there and know that I have an itch someplace that
nobody could know that it's there and help me, I
would be depressed.

Speaker 3 (11:36):
I'm going to guess that he is depressed over some
of that.

Speaker 1 (11:39):
Well, you know, people only recently people have started to
realize that caregivers need support. I mean that's that you
must have learned an awful lot through that tell us
about that and why it's so important to help caregivers
and make things pay caregivers more.

Speaker 2 (12:02):
Excuse me a second.

Speaker 1 (12:03):
I remember talking to Senator Kate well former Senators Casey
about this years and years ago when he was I
think auditory general about how people want to stay in
their homes. They should have that if they want to.
But when it's very expensive to get to pay for
caregivers because we have this loved one at home, but

(12:25):
somebody's got to pay the bill.

Speaker 3 (12:26):
So you go to work.

Speaker 2 (12:27):
But then you have to trust whoever's coming in.

Speaker 1 (12:30):
I've heard a lot of people when they hire people
to come in, all of a sudden something's missing from
their house.

Speaker 2 (12:35):
It's a terrible situation.

Speaker 1 (12:37):
So to have to go through what you do you
do everything and you're a little girl. You know, you're
not a big burly woman that can be lifting them
and everything else. But it's I think we need to
How can I put this? Could you please explain how
stressful it is and to be a full time caregiver.

Speaker 4 (12:59):
It's extremely st because every time you go to sit
down just to rest for a second, yeah, something happens
and you got to get back up and you got
to run. You've got to learn how to do something
I've never wanted to do in my life.

Speaker 3 (13:11):
Cast him so he can go to the bathroom.

Speaker 4 (13:14):
I looked at the doctor when he said that, I went, huh,
you're kidding.

Speaker 3 (13:18):
Me, right, And he said no. And there's less than
a five minute training.

Speaker 4 (13:21):
Go. They drop equipment off at the house, go and
need no training. You got to learn how to use it.
It's stressful because you watch people do things that you
can't do any longer, and you're sitting there go gosh.
I wish I could do that, but I won't do
that because I'd rather be with my husband make sure
he has what he needs. It is very expensive to

(13:44):
bring people in. We are lucky as he's a veteran.
I get to stay home with him and take care
of him. But we also fought hard and we now
have a nurse. But it was only home health as
that they would give us, but they couldn't do anything
for him because they're not allowed to. Yeah, and we
argued and argued, and I say we because I'm not
the only one that argued this, So they finally gave

(14:06):
us LPNs coming in and that has been a help.
I mean it's a few hours a day, but it's nice.
It's a little bit of a break, but it's still stressful.
You can't you know, you're at home at night and
you can't go anywhere. But that's not true because we
do go places. I can't say we don't. We I

(14:26):
don't allow him to just lay around and do nothing.
I make him leave the house with me.

Speaker 3 (14:31):
Good places, good. Yes.

Speaker 1 (14:34):
Well, you know, when you first started this, as you said,
you didn't know that the veterans' benefits were but you
learned so much because you did it on your own.
But because of that, you started an organization so other
families that had als patients and their their and their
families didn't have to go through all the longing you
went through. Talk to me about that, tell me what

(14:55):
it is.

Speaker 4 (14:56):
So I started the organization basically to help those that
are not veterans. I've seen how hard it is for
them to get some of the things they need or food, rent, mortgage,
because they do give up their jobs to try to
make things work, and that was one of the reasons
I started it. I will guide the veterans, but I

(15:19):
know what veterans can get. So once I have you
going in the right direction, if somebody comes to me
and says I don't know what to do, I can
guide them to the proper places to go to and
find the information they need.

Speaker 2 (15:30):
And that's through your website.

Speaker 4 (15:32):
There's stuff on my website also, yes, yeah, yeah, and
where is that? What's it called let Hope grow dot org?

Speaker 2 (15:38):
Okay, great? And what else we're going to You started it?

Speaker 3 (15:41):
Uh?

Speaker 4 (15:42):
Yeah, I started just and I started it here local,
and I've most of my requests come from across the
United States. I have people requesting I need help with mortgage,
and to be honest with you, without funding, I cannot
help these PEO people. And I have to many times
say I am so sorry, I don't have it right now,

(16:05):
but if I as soon as I get some funding in,
I will reach back out to you.

Speaker 3 (16:08):
I have a list.

Speaker 1 (16:10):
So so unless you're a bet there's no funding, all right,
well I know that. Uh, tell us about the I
think there's something with President Biden funding through that.

Speaker 3 (16:21):
But that goes.

Speaker 4 (16:22):
Yes, the association, the United Als United mid Atlantic here
they go through and Pittsburgh has their part. They go
and advocate for dollars and that's what they get, dollars
to help.

Speaker 1 (16:37):
Okay, that's not necessarily you though that the yes, is
there support? Is there support in the legislature. Have you
tried to talk to anybody?

Speaker 3 (16:48):
I haven't yet.

Speaker 4 (16:49):
I am One of my board of directors is Eileen Miller,
who is the Paul Miller Bill and she's her and
I are planning on trying to start advocating for ourselves
for our organization to get extra help in and see
what we can do.

Speaker 1 (17:06):
Tell us more about what people can find on your
website because a lot of it is resources for people.

Speaker 3 (17:12):
Yes, there is our story.

Speaker 4 (17:15):
There is a dedicated spot to resources, whether it's to
find clothing, whether it's to find organizations that will help.
It's all on our website. We have stories, we do blogs,
monthly blogs help people. Yes, and we're always looking for
a good blog story. And I'll take it's not just mine,

(17:36):
it's not just somebody on our boarder directors. We try
to find people who want to tell their story. That's
a helpful story.

Speaker 1 (17:43):
How about like you mentioned clothes. You think that's not
a big deal. But that's a big deal, isn't it.

Speaker 4 (17:48):
It's hard to dress somebody who can't dress themselves, so
there are specialty clothing out there.

Speaker 3 (17:54):
Or I have tips and tricks.

Speaker 4 (17:55):
If you watch me on TikTok, I'll give you special
tips and tricks for dressing people. This is it is,
it is my life.

Speaker 1 (18:05):
Lifestyle modifications give us some examples, like I would think
the bathtub or a ramp, or for someone in a wheelchair.

Speaker 2 (18:13):
What else?

Speaker 4 (18:15):
Our shirts gotta put a shirt on somebody who can't
move their arms anymore. Oh boy, you can't. They're tight
because they are one piece. So we cut the backs out,
kind of strip up the back.

Speaker 3 (18:26):
Pants.

Speaker 4 (18:27):
I get this pants a little bit bigger, or I
get the new stretch your kind of pants, and you
can get those up and I hook them. My husband
always dressed wore khakis or dress pants and a nice shirt,
and I refuse to not do that for him. So
we make sure he's stressed the way he wants to be.
When we go out in public. There's a billy's foot

(18:49):
wear out there. They have shoes on zip all the
way off the top, and you put the foot down
it and zip it back up. So much easier than
trying to stick their foot into a shoe.

Speaker 1 (18:58):
What about I if I want to go on a
trip with my husband and he has a LS, do
you have any suggestions there?

Speaker 4 (19:07):
Make sure you take everything you need with you. The
pills for sure, because not you go home early. But
we have a We take everything. We take the coffases,
we take the breath. Everything has to go with you.
Coffa pushes air into the lungs and pulls it back out.
And if they're having a lot of problems with mucus,

(19:27):
a lot of times it'll pull the mucus out for you.
Make sure I take a nurse with me anymore. I can't,
like I said, do it. I rent a bed and
have it put at the hotel. You got to find
a hotel big enough, and you got to make sure
they're completely handicapped accessible. They have rolling showers, then you
have to take a shower chair, and that can get
bulky and big. A lot of times when we're on

(19:49):
a vacation, we do a bed bath for the time
we're gone. It's fine for a week or two vacation. Uh.
I would love to see a house at the beach
fully loaded with everything you would need and you could
go there for a vacation. That's one of my goals.
How I hit it, I don't know yet, but it's
a goal.

Speaker 1 (20:08):
Well, you you're real involved, you're out talking to people.
This website is awesome. I mean, it's a resource for anybody.
But let me ask you this, what would be the
first thing somebody it's newly diagnosed with als, what would
be the first thing you would want their family member
to find out about or what information at that point

(20:31):
in the very beginning.

Speaker 4 (20:32):
What beginning exactly where they can get the resource support?

Speaker 3 (20:36):
Okay, need resources.

Speaker 1 (20:38):
But even though you have ideas like the Veterans Associate
or the VETS and social Security disability all that other
kind of stuff you haven't listed, you're not going to
come and do. You got your own situation. This is
a starting point for them so they can go out
with the best. So if your family member is a veteran,
that's your first.

Speaker 2 (20:58):
Stop, then right it is? Is it like you didn't
did you know?

Speaker 1 (21:03):
You didn't know anything about this disease when when Pete
first got it?

Speaker 2 (21:06):
Did you no?

Speaker 4 (21:07):
The only thing I knew was somebody told me to
pour Bucke advice over my head and I said, I'm
not doing that, and I didn't donate the money, so
I thought maybe I was getting paid back.

Speaker 1 (21:15):
But well, you know what, I know, you're real involved
in all anything locally, as far as the walk to
VA defeat.

Speaker 2 (21:25):
Excuse me, a LS. Do you ever get a break?

Speaker 3 (21:33):
I get massages.

Speaker 4 (21:35):
I I'm getting a break soon November because I'm going
down to do the Bay Bridge run.

Speaker 1 (21:42):
See that's what I mean. You are totally a LS.
They don't know what as we talked about early, they're
not sure what causes it. They suspect. But your husband,
how well, let me ask you this. How's he doing now?

Speaker 4 (21:59):
He's he's fully dependent upon anything that we do for him.

Speaker 2 (22:05):
That went pretty fast, isn't it.

Speaker 4 (22:07):
Yes, he's been this way for about nine years out
of the ten and a half. Recently he was in
the hospital for forty eight days and came out and
we are now on dialysis. So we get up at
five am, three days a week and go to dialysis
and make sure his pills and stuff in and before
we go so we can get all that done. And

(22:29):
then I'm being trained next week to do hemo dialysis
at home at home the next home of our stage.

Speaker 2 (22:36):
Wow.

Speaker 4 (22:36):
But in general, he does pretty good. He gets up
and says, we put him in a chair. He watches TV.

Speaker 3 (22:41):
With his heart's okay, yeah, he watches TV.

Speaker 1 (22:45):
So he's able. It hasn't affected his hearing or anything
like that. Not that we just can't communicate with r
and you have to feed him and everything else.

Speaker 4 (22:53):
You know.

Speaker 1 (22:53):
One of the other things when you're thinking about stuff
like this, one of the things on your website people
don't even think about, but you have to have a
lot of time, special type of fork, spoon knife, defeats
somewhere like that. This is why I'm saying you have
to check out Laura's website Let Hope Grow dot org
because a whole lot of the stuff that you need

(23:15):
to get through life with this. And I don't want
to make it sound like it's a sure because you
know what I've done this, not as much as you.
But when it's somebody you love, you're there, you know
you can't help it. That's you know, you put yourself,
especially if it's like a spouse or a child, you
would put yourself in their place immediately. But how has

(23:39):
it affected your relationship with Pete? I mean, I bet
you he's there and he looks at you, probably thinks, oh, honey,
I love you so much.

Speaker 3 (23:49):
I hope he does.

Speaker 2 (23:51):
Well.

Speaker 4 (23:51):
Heck, I love you some days, I'm not sure.

Speaker 3 (23:56):
Sure.

Speaker 4 (23:56):
There's times when I can lose my temper and he'll
sit there and look at me and roll his eyes
me so but at least I know that he's there
and he's paying attention.

Speaker 3 (24:06):
It kind of gets tough because I'm.

Speaker 4 (24:09):
The person taking care of him, yet I'm also his wife,
but yet there's no relationship anymore that way, and it
gets tough.

Speaker 3 (24:18):
But I love him with all my heart and I'm
there for him, and.

Speaker 1 (24:21):
That's what it's appar end, that's exactly what it's about.
Because of all your work and what you've done, because you're,
like you said, you're hearing from people on a national level,
and that's that's a lot of what you want to happen.
You don't care if they're all in in Harrisburg and
three are in Pittsburgh or five or in Columbia, Missouri.

(24:42):
You want to help whoever you can hear, and you
want peep other people to pass the information on to
others because you're not I mean, you need money.

Speaker 2 (24:50):
Who doesn't need money?

Speaker 1 (24:51):
You need resources for other people, because that somewhere there
costs like two hundred and fifty dollars. Is that a
year to take care of someone with LA ALS?

Speaker 2 (25:00):
Well what if.

Speaker 1 (25:01):
You're not a veteran, you know, and they have resources,
people still need that support and that insurance.

Speaker 2 (25:07):
So but what the point I'm getting to is you.

Speaker 1 (25:11):
Have received national recognition the Greater Philadelphia ALS Association. Well,
I'll let you tell about your two awards that you've
gotten and why I got the.

Speaker 4 (25:25):
Oh my gosh, I can't remember the name of the
award now, the Flame Flame of Hope Awards, the Flame
of Hope Award from it was a Philadelphia chapter at
that town now known as the ALS United mid Atlantic Chapter.

Speaker 2 (25:38):
And that was for what advocating Okay, we advocated.

Speaker 1 (25:43):
We're you're advocating is wide openly advocate anytime we can
advocate for the rights of ALS patients and caregivers.

Speaker 4 (25:52):
And the other award that I won from the ALS
Association was also for advocating and being there, and that
was They both to me were just an honor to get.
I felt accomplished at something that I've worked so hard
at over the years.

Speaker 3 (26:11):
When I won those awards.

Speaker 2 (26:13):
I think that's fantastic.

Speaker 1 (26:14):
What, as we said, it can get, it can get
very exhausting and frustrating. What do you say to yourself
and what would you tell somebody else who's in the
midst of this to get through it. I mean, I
know it's all about how it's all about you love
the guy, bottom line, That's what it is.

Speaker 3 (26:33):
But I love the guy, but you have to have
some patience with yourself.

Speaker 1 (26:37):
And I'm sure there are places out there where you
have resources for caregivers when things get tough too.

Speaker 2 (26:44):
On your on your website right there.

Speaker 4 (26:46):
Are support groups out there. I attended some for quite
some time. I don't attend many now. I run a
support group right now through Neil's which is a research
division for ALS, and I run one for new patients.
Although we don't get many new patients, and it's become

(27:07):
more of a place where we can all freely talk
about things. And that's every Friday afternoon we do that one.

Speaker 1 (27:18):
But we definitely another thing I want to let our
listeners know. Let Hope grow dot org. Besides all the
resources that we mentioned, now you have also a patient
Lets anyone who wants to go on there know what's
going on as far as grant not grants, as far
as research and clinical trials and all that other times.

(27:40):
I mean these just that if I were in that position,
I would absolutely let's do that.

Speaker 4 (27:46):
It's all out there, everything that I can find, I'm updating.

Speaker 3 (27:49):
That's a living The resource page is a live document.

Speaker 4 (27:53):
We add to it as we find new things because
there's always something new coming out for the resources, What
do you need from our listeners? Tell me what would
help you funding? Okay, to be able to help people.

Speaker 1 (28:04):
And you recently had an event okay, and we're going
to keep doing things like that, yes, and.

Speaker 2 (28:11):
What else.

Speaker 1 (28:12):
You can't ask for volunteers unless it's for the walks
and stuff like that, but we.

Speaker 4 (28:18):
Have volunteers for the events and stuff that we throw.
If we don't have volunteers, to help us set them
up or get supplies and stuff, but we'll.

Speaker 1 (28:26):
Let our listeners know exactly when you have those and
what's going on.

Speaker 2 (28:29):
We'll have to do this again.

Speaker 1 (28:31):
You know what, I wish I could give you no work,
but all I can say is honest Scott, thank you
from the bottom of my heart for anything you do.

Speaker 2 (28:41):
You can be sure.

Speaker 1 (28:43):
That's one of the best parts about doing this program
all these years is I meet people like you, and
I can go tell everybody I know about what you're
doing and continue that, you know, keep continuing going so
other people know. It's so Again, I want to thank
you Laura Sawyer for coming in and for my listeners again.
The website addresses let hopegrow dot org. Remember that you

(29:05):
can catch inside every Sunday in one of our ten
Ihearts stations, or anytime on your favorite podcast staff.

Speaker 2 (29:11):
I'm Sylvia Moss.

Speaker 1 (29:12):
This has been insight Thanks so much for listening to
you next week