October 19, 2024 • 30 mins
Rick lives with ALS. He and his wife discuss his diagnosis and how their lives have changed. You'll be inspired by their courrage and optimistic outlook.
Danatria Spears is the associate director of development for the ALS Association of Texas. The ALS Walk on Saturday Nov 16th at the University of Houston. www.als.org
Danatria Spears is the associate director of development for the ALS Association of Texas. The ALS Walk on Saturday Nov 16th at the University of Houston. www.als.org
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Episode Transcript
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Speaker 1 (00:06):
Welcome to Houston, PA, Houston's public affairs show, an iHeartMedia broadcast.
Our disclaimer says that the opinion is expressed on this
show do not necessarily reflect those.
Speaker 2 (00:17):
Hell by this radio stations.
Speaker 1 (00:18):
It's management staff for any of its advertisers. My name
is Laurent I am the Texan from France and we're
going to talk about ALS today. That was called lou
Garrig's disease when I was a kid, and you probably
remember the what maybe the most viral videos in the
(00:39):
world when the ALS community came together to start the
ice Bucket Challenge. Remember when people were dumping entire buckets
of ice on themselves to raise money and awareness for ALS.
Speaker 2 (00:52):
That's them.
Speaker 1 (00:53):
It's this muscular degenerative disease that happens in the brain.
It's extremely complicated. It's all so one of those orphaned
diseases that is not spoken of very often.
Speaker 2 (01:04):
We don't know a whole lot.
Speaker 1 (01:05):
About it, as you can tell from the way I'm
talking about it. I'm certainly no expert, but one of
those diseases that is known by the first famous person
to get sick with it. It was Lugerig, who was a
baseball player is the kind of disease that is in
need of attention and awareness, and we're going to speak
with a man who is living with it, but his
(01:25):
life experience is really what is so amazing about him.
He was a Vietnam War veteran, he was a teacher
in England in the Bahamas, and he married a Canadian.
We're talking about an international existence that is worth an
interview too itself. So we're going to stay really positive
about it. But we want to make this connection for
people to raise awareness so that those of us who
(01:48):
like to donate a little money to research or to
nonprofit organizations can help to get together and do this. Remember,
if you can't afford to give a whole lot of money,
giving a little bit, even if it's just five bucks,
just a few bucks. As a commune, when we come together,
we can make a huge difference. My guests today are
Rick Thornberg. He is living with als. He is also
a veteran of the Vietnam War, as I mentioned, and
(02:11):
he was a teacher and he lived on Cat Island
in the Bahamas, which happens to be the only island
in the Bahamas.
Speaker 2 (02:17):
I've been to.
Speaker 1 (02:17):
I've been to Nassau, but you sort of land there
to go through customs and then you travel on on
a smaller plane to your final destination. It's a beautiful place.
We'll definitely talk about that with him. Is his wife,
Joyce Thornberg. And Danatria Spears is the associate director of
Development for the ALS Association of Texas and Danatria, I'd
(02:39):
like to start with you because you need to tell
us what ALS is and how your organization helps the
people that are sick with it, but also the people
living with them, because it's the kind of disease since
it limits mobility and it is degenerative. It is without
a cure, which means that people get progressively sicker and
(03:01):
need a whole lot of help. Although I think we're
going to talk about the possibility of these neuro implants
that Elon Musk is making famous as one of the
potential therapies because since they're essentially about hacking the brain
into seeing again if someone is blind, for example, the
future is actually really bright. And will say this as
(03:23):
a history of humanity. If you know about the advances
that are made in the field of cancer therapies, for example,
breast cancer we know that if you pay attention to
these diseases and you talk about them, and you compel
people to first of all, get checked out and also
to fund the research that goes into finding the cures. Well,
(03:44):
we find a cure. It has been the history of humanity,
or just eradicate the diseases little by little, and there's
no reason to believe that we won't be able to
do it.
Speaker 2 (03:52):
So the NATRIA tell.
Speaker 1 (03:53):
Us about the ALS Association of Texas and again they're
online at a LS dot org. A l S dot org.
You will get to the Texas chapter or wherever you
are if you're listening to this in another place in
the world. But it's a great place to start getting
information and I guess especially if you need a community
of help.
Speaker 3 (04:13):
Yes. So our mission at the ALS Association is to
make ALS a livable disease and one of the ways
that we are trying to do that is with early testing.
It could sometimes takes months for someone to get their
diagnosis of ALS. Some of the services we provide we
have support groups where individuals are able to connect with
(04:34):
others on their like journey and you know, give each
other that emotional support. We also have our medical equipment
loan program because it's estimated that someone living with ALS
will have the at a pocket cost of two hundred
and eighty thousand dollars a year, So it's very expensive,
and we, of course we fund research and advocacy as well.
Speaker 1 (05:00):
Yeah, the advocacy comes in line with this community building.
I obviously the direct connection of the association to helping
people get what they need as far as the care
that they need is in it. Well. I guess in
addition to that, you have this community building aspect to
all these organizations that allow people to just get in
(05:22):
contact with someone else who's experiencing the same thing or
is way ahead of them, so that you can share
this information and help people get to the right place
or the right physicians for instance. Correct, you're telling me
that the out of pocket expenses of someone living with
ALS can be over two hundred thousand dollars. That's all
the doctor visits and the drugs that they are prescribed.
Speaker 3 (05:41):
Yes, and even the equipment that you know one might
need in the different stages of their diagnosis.
Speaker 2 (05:47):
So it's extremely expensive.
Speaker 1 (05:50):
Rick Thornberg is living with ALS, and I guess Rick,
we could start by how you got your diagnosis because
I should say, you look great, sir, and you are
still perfectly functioning hopefully. The disease is very slow moving,
and you caught it early, right, which means that you're
probably on some therapy to slow it way down.
Speaker 4 (06:10):
Yes, I am taking right now. I was diagnosed last spring.
I think I probably had this disease before that. But
what I did notice is a tremendous fatigue even doing
small jobs. And I was a guy that would do
a lot of jobs right to the end, you know,
I'd work myself to the bone kind of. But I
can't do that anymore. I don't do the lawn anymore
(06:33):
in my house. Got somebody else doing that.
Speaker 2 (06:36):
It's just too tiring.
Speaker 4 (06:37):
And too tiring. The fatigue factor is enormous. I mean,
after a shower out of these days, I got to
go take a little nap after the shower.
Speaker 2 (06:45):
Really, But.
Speaker 4 (06:48):
What was I going to say, Well, you.
Speaker 1 (06:50):
Were talking about how you were diagnosed. Oh yeah, I
felt a fatigued.
Speaker 4 (06:54):
But how I was diagnosed was I had this twitching
in my arms, and my dermatologist, oddly enough, suggested I
go to my primary which I did, and she recommended
a neurologist and the neurologist doctor Kassar, a wonderful doctor
out here. She's e Lebanese by the way. She's her
(07:17):
family's in trouble kind of, but she diagnosed it and
then she sent me down for second opinion of doctor
Appel downtown, a Houston Methodist who runs a neurological clinic.
And they are fantastic people here. If you're going to
have als Danatria and all the people that work with
als here in Houston, you couldn't do better. I don't think,
(07:38):
And I've talked to a bunch of people from different areas.
They know as much as anybody. But right now, to
slow down, I guess the process a little bit. I
am taking two drugs. One of them is called rylasol,
which I take twice a day, and the other is
called rata kava, which is a crazy thing. You take
(08:00):
it fourteen days, and then you don't take it fourteen days,
and then you take it fourteen days and so on
and so forth. But hopefully that's doing something for me.
I don't notice dramatic differences, but that's what they said.
You wouldn't necessarily notice what's going on. But it's supposed
to extend your life a little bit.
Speaker 1 (08:19):
Yeah, so it's supposed to slow down the degeneration in
the brain. We should explain what ALS is. As we said,
it was known as lou Garry's disease. I'm gonna attempt
to say what it is. It is amuotrophic elateral sclerosis.
Speaker 2 (08:33):
That's what it stands for.
Speaker 1 (08:35):
I do not know what amotrophic means.
Speaker 4 (08:39):
It's screwing up my nerves, uncles. And what they say is,
by the way I used to lift weights. I used
to try to increase my weights, like pressing and so on.
But they said, you've got to stop that, so you
don't when you have ALS, you don't do any extra stuff.
I try to do an exercise routine every day. I
(08:59):
walk five thousand steps, but I don't try to do
any super extra weightlifting types of things. They say, don't
do that because you will cause yourself to be more
degenerated by doing that, and don't ask me the medical
explanation for that. But I'm trying to obey those things now.
(09:21):
And another thing is all these commercials on TV telling
people that go on diets and everything lose twenty pounds
et cetera. What they tell me now, Rick, eat more,
eat between meals. Yeah, so I'm losing weight. I used
to be one hundred and seventy pounds. I'm down right now,
(09:41):
probably do about one hundred and forty six hundred and
forty seven pounds.
Speaker 1 (09:46):
So you eat a lot of eggs and French cheese.
Maybe you have a Canadian wife, which means that she
is definitely in touch for me.
Speaker 4 (09:53):
And I drink, yeah, protein drinks and in between meals,
and you know, I try to eat regular meals and
so on like that. I don't have the appetite I
used to, but I try to eat anyway. Physically, I
try to do it. And because you because you need to.
You can't lose keep losing the weight. So I've kind
of stabilized now in between say one forty five and
(10:17):
one fifty, kind of somewhere in that area.
Speaker 1 (10:19):
And you go, do you go to regular doctor's visits?
Speaker 4 (10:22):
Oh? Absolutely, yeah, I've got so many doctors. Yeah, Donetria
knows that that. Uh, it's it's I can't even remember
a lot of their names, but yes, they do. You
go to these clinics in Houston and they'll go through
that you'll go down there, They'll they'll bring dietitians out,
they'll do blood work for you. Uh, they'll they'll talk
(10:45):
socially with you if you need some social help. I mean,
they just do everything. These people are wonderful. And the
veterans are the same way. The debate people over here
are are just incredible. They've done so much for me.
I don't want to talk about no, but the civilian
population is in as Danatrius says, they're in trouble financially,
(11:07):
whereas the veterans are helping me out. And I don't
want to tell you how much, but I've got to
get my house.
Speaker 1 (11:11):
No, but it's good to know that you're getting the
help that we promised you as a society. Like you
served and you went to school and on the GI
bill and for the Masters, And I like how you mentioned,
yeah it was you know, it was, it was, it was.
It was kind of given to me. That's the impression
that I get. And it's like, no, sir, you earned that.
That was part of your pay. It is literally part
(11:33):
of the payment package you get for serving in the army.
And you went to Vietnam, you had to go to
you were deployed right before you were married, or actually, no,
you got married a day before you were deployed essentially.
Speaker 4 (11:46):
Well, I was at Fort Knox, Yeah, it was. It
was a couple of weeks before, but we kept the
wedding date. Yes, and I did go over. And as
I say, I was sitting in that room before I
left San Francis go make my last phone call to
my wife, and they were playing I'm leaving on a
jet plane in the background, and I'm thinking, what what's
(12:09):
going on here? Right? Yeah? I mean, and my parents said, oh,
you'll get an office job. Wrong infantry.
Speaker 2 (12:16):
Yeah, you carried a grenade launcher, you told me.
Speaker 4 (12:18):
I did seventy nine grenade launch or a pretty bad
weapon if you're trying to kill people. But kid asked
me in one of my classrooms. I like, do you hunt,
mister Thornberg? And I said, no, I don't hunt, except
I did hunt people once and I didn't much like that.
Speaker 1 (12:33):
So I didn't much like being shot at either.
Speaker 3 (12:35):
No.
Speaker 4 (12:36):
I didn't much like being shot at. No.
Speaker 1 (12:38):
So I would say that a grateful country could definitely
afford to pay for your masters, and especially since you
put it to good use to helping more people.
Speaker 4 (12:46):
I never I never asked the veterans for anything until
with the masters. Yes, but that was just basic stuff.
But I never until now with the ALS, I never
asked them for a dime and their hell and they're
helping me out of this.
Speaker 1 (13:01):
It's great to hear because we see if this is
one of these subjects, it's usually negative when it comes up.
We usually hear about how the veterans are neglected, and
we also know that they do some things right, and
it's it's good to hear. This is we this is
what we want, and therefore we should replicate that.
Speaker 3 (13:19):
Well.
Speaker 4 (13:20):
I want to say, if you're in the Houston area
and you're a veteran and you have a paralytic disease
of some sort and that includes Parkinson's and whatever, including ALS,
go to a guy who is in the Veterans Administration's
name is Greg Tracy, and he is an incredible guy.
Because I heard stories about people that were diagnosed and
(13:42):
they didn't get any help for months. He got me,
He got me a certified as one hundred percent disabled
within two weeks.
Speaker 2 (13:51):
Did his job.
Speaker 4 (13:52):
Yes, he is a great guy. He's a great guy.
So that all these people in Houston. I can't Joyce
keeps saying, Gee, these ale less people like to not you.
They're so wonderful. What.
Speaker 1 (14:03):
Well, it's a small community, and as we've mentioned, it's
a sort of an orphan disease.
Speaker 2 (14:08):
It's a disease that isn't very well understood.
Speaker 1 (14:11):
We only know it by its initials or that it
was Lugerrig's disease. And therefore the community must feel the
impetus to help itself. It's just there's so few of
you thus far. But we can grow those numbers, and
especially we can grow the amount of money and elbow
grease that goes into searching for a cure. There is
(14:32):
no cure yet for als. You are listening to Houston
PA Houston's Public Affairs Show. My name is Laurent and
my guests today are from the Als Association of Texas.
They are online at a LS dot org a l
S dot org. That website is like plugging yourself into
a support group. Instant help. Literally, you'll you'll have on
(14:56):
the page an opportunity to even find your local chapter.
It's probably the quickest and easiest way to get instant help,
so to speak. If you've been diagnosed with ALS. Rick
Thornberg is living with ALS. He is also a veteran
of the Vietnam War. He served as a member of
the fourth Infantry Division in nineteen seventy. He was a
(15:17):
recon killer team member. He carried a grenade launcher and
went on recon mentions and felt sniper bullets. Literally his
head nearly grays his head. You were thankfully not actually touched.
His wife, Joyce is with him. We haven't spoken to
her yet, but I'm about to ask her a question.
And the Natrius Spears is the associate director of development
(15:39):
for the ALS Association of Texas. Joyce, do you must
You're right next to Rick, and you're not sick, but
you're obviously completely affected by the disease. And you're the
kind of person who would go to ALS dot org
to find the support group of the spouses, for instance,
of the family members who are also living with this disease.
Speaker 2 (16:01):
Can you speak a little bit to that.
Speaker 1 (16:03):
It must have been terrifying to hear the diagnosis.
Speaker 5 (16:06):
Well, when we first heard the diagnosis, we just looked
at each other and said, well, we'll continue doing what
we have always done. Just keep going one foot after
the other and day after day, and we were going
to as we've always done. We're going to enjoy life
as much as we can. I have a binder of
(16:28):
literature on everything from exercises to food, nutrition, socializing, whatever
you need. I just go to the index and I
check on it, read the pages over again. He is
getting high calorie, high protein meals, making French cheese French
(16:57):
and it's all for him. Cannot eat the same diet
as him, but it's it works for him. I have
seen him losing weight, uh, and he's very tired all
the time.
Speaker 4 (17:15):
But it's the same old Rick.
Speaker 5 (17:17):
I mean, he's the same enthusiastic, and we are lucky
to have a great support team with our relatives, family
and people. Wherever we've been living, we've got people. Rick
was very popular at his high school where he taught.
Dulles was Yes, he was a very yeah popular from
(17:44):
the other teachers and from his students. But we're just
going to keep going and as things pop up, we
have a support system and very knowledgeable people to get
information from, and we just feel like we're not in this.
Speaker 2 (18:00):
Yeah.
Speaker 1 (18:02):
But this has also monopolized a great deal of your time.
You have to driving him around probably brick.
Speaker 2 (18:07):
Do you still drive?
Speaker 1 (18:08):
He's still driving? Yeah, you see, so that's good because
people who live with epilepsy, for instance, can't drive anymore.
There are some diseases which preclude there will come a time.
Yeah maybe not maybe now, aren't you would? I feel
I'm not affected by the disease directly the way you are.
It feels cruel to just be optimistic without knowing so
(18:29):
much about it. But don't you feel like there is
reason that we keep talking about technologies that are being
developed right now and coming to the market which will
be helpful to you.
Speaker 4 (18:40):
Yes, I think you're right, Loren, And I'm hoping it's
a pill.
Speaker 1 (18:44):
Actually, yeah, of course, yeah, yeah, although we've talked about
the neurolink the brain implants, which may very well be
part of the solution. And you'll be happy to know
that the first person who had this brain implant installed
has reported feeling zero pin literally he just apparently the
operation room very very well, even though it's somewhat invasive,
(19:07):
but he he, he has and he's enthusiastic. And if
you've seen what this this first human being with a
with a computer chip implanted in his brain can do,
he is a quadriplegic. He lives in a chair and
can now compute control a computer with his brain. It's extraordinary,
(19:27):
and they expect to be able to help people see again,
or for for some people, it'll be the first time
that they see. It's not the same kind of vision
that we're used to, but it stimulates the brain into
seeing or hearing, and there's just absolutely no reason.
Speaker 2 (19:41):
That they won't.
Speaker 1 (19:42):
They shouldn't be able to figure out a way to
hack around the disabilities that this disease is inflicting upon you.
But you're right, I think a pill would be The
problem is the problem is that you're living with a
great deal of unknown. We don't know what causes the disease.
We don't have a cure.
Speaker 4 (19:59):
No, it's and the way you're diagnosed here they eliminate
everything else. Then you are diagnosed as luga or als.
It's not as though they have a blood thing that's
going to just tell you there, it's not.
Speaker 2 (20:14):
Wow.
Speaker 1 (20:15):
Yeah, Well the NATUA was mentioning this. You mentioned how
long it can take for people to become diagnosed. The
nature of what you're saying is that what it means
that first they must be diagnosed to not be sick
with any of the other diseases which give symptoms. Rick
was describing that he has some twitches in his arms.
There are several potential problems that can make muscles twitch,
(20:37):
and I guess you're going to have to go through
an entire battery of tests, maybe with even several physicians
before they eliminate every possibility and come to als.
Speaker 4 (20:47):
Well, that's what these clinics are for. They go through
all these tests, anything that you can possibly imagine they're
doing for you. The EMG test, which do electrical muscle
tests on all your muscles and nerves and something like that,
and they're very thorough, so they know what's going on
and hopefully they will be able to find some kind
(21:09):
of a cure here. I don't know what's going to
happen in my lifetime, but at least well, another thing
is an interesting thing is finding out if you do
have this, whether it's genetic or not, because the genetic
has different possible solutions here. And I sent in my
DNA and I got back the word Actually, mine is sporadic.
(21:32):
It's not the genetic type. And so I was able
to at least tell my children I've got two boys
and a daughter that they probably won't get this because
I don't have the genetic strain. And veterans have almost
twice as likely to get als, and combat veterans even
more likely to get als than just regular civilian populations.
(21:57):
We don't actually know why that is. But ill, if
they want to call Agent Orange, okay, fine, they can
say that, but I.
Speaker 1 (22:05):
But Agent Orange wouldn't explain why people are still getting
it today, right, because obviously it's not in the air
for us, but people are still becoming sick with it.
Speaker 2 (22:16):
Is It seems to me.
Speaker 4 (22:17):
It could be something, yeah, like skin cancer, you know,
oh yeah, because sometimes you don't know what's going on
with your skin until decades and decades later. So I
don't know that that's what it is, Laurent. I'm just
saying veterans are more likely to have als than regular
civilian population.
Speaker 1 (22:37):
Well, since it's a disease that affects the brain, maybe
suffering from enormous trauma is something that can trigger an anomaly.
Speaker 2 (22:45):
Yeah, we don't know.
Speaker 1 (22:46):
But I just that's the first thing that comes to mind. Obviously,
veterans and to have harrowing experiences in common.
Speaker 4 (22:52):
It could be, could be.
Speaker 1 (22:54):
So that's that's why there's going to be an ALS
walk on Saturday, November sixteenth at the University of Houston
the NATREA. The purpose of this walk is to raise
money in awareness, but we really need people to donate
five bucks basically because it's the research that is going
to make a difference. We're gonna have to find that
little natural compound that exists in nature which will counter
(23:17):
this disease. We know it's out there. That's what history
has taught us in the sciences. Don't you agree? Are
you optimistic? Since you don't live with disease? Disease thankfully,
but you see a lot of people who do, and
you've seen an evolution probably of how the disease is
being treated by society, and the whole ice bucket challenge
(23:39):
was a big success. Do you see a difference? Do
you Are you feeling optimistic about the raise and awareness?
Speaker 3 (23:46):
Definitely? I do see that people usually get evolved with
the LS association once they have a connection to it,
so I feel like, yeah, it's not That's why the
walk is important to bring awareness and shine on this
because not a lot of people know about ALS.
Speaker 2 (24:03):
Yeah, and obviously.
Speaker 1 (24:04):
I mean that's normal, that's very human. You wouldn't pay
attention to something like this. We have busy lives until
it actually falls upon you, and then you realize that
you're part of a very small community and you.
Speaker 2 (24:15):
Need to grow it so you can do that.
Speaker 1 (24:17):
So they're going to have the ALS walk on Saturday,
November sixteenth at the University of Houston. You can go
to ALS dot org als dot org to find out
more about that and also to find out more about
the disease. You know, if you're sitting at home and
you've realized that maybe you have a symptom that resembles
what we're talking about here, a muscle or twitching, you
(24:40):
should go to your primary physician to get yourself checked out.
They're the ones who are going to be able to
connect you to a specialist or someone who can actually
look at what it can potentially be.
Speaker 4 (24:50):
I could mention one thing is that, and I was
just talking to a veteran yesterday. He emphasized the fact
that you really don't know how it's going to affect
you because it comes and is manifested in different ways
with different people like mine. Is upper body like that
a little bit trouble swallowing and so on like that,
(25:11):
and fatigue. For other people they have problems with their
lower limbs, they can't walk or they If you saw
it when I was at minimade, the guy next to
me who was in a wheelchair, he couldn't he couldn't
do anything. He couldn't move his arms, he couldn't move
his legs, he couldn't talk. And that's so you don't
(25:32):
you don't actually know what's what's going You don't know
how fast it's going to progress, and you don't know
what what's going to hit you next.
Speaker 1 (25:39):
What is hard to relate to is the amount stress
that you would be dealing with.
Speaker 2 (25:44):
Due to the unknown.
Speaker 1 (25:46):
Yeah, that that is a profound source of angst for
anyone if you don't know about something that is happening
to you and how it's going to progress.
Speaker 4 (25:55):
There was a guy that wrote a book a name
I can't remember thee the right now, but he called
it why Waste a perfectly good terminal illness?
Speaker 1 (26:06):
Oh No.
Speaker 4 (26:07):
In the book, he says that God gave him that
so he could do things for other people. That God,
he thought that was his reaction als God gave me Ailis.
I don't have the same opinion as a matter of fact,
but he was a good guy. And you know, uh,
this it just depends on your attitude.
Speaker 2 (26:28):
Yeah, you gotta have it.
Speaker 4 (26:29):
You got you figure Stephen Hawking, that guy was had
ALS for fifty five years. He was my goat, what
the funny thing is? Even before I had this disease.
To tell people, I said, you think you've got it
bed Yeah, with Stephen Hawking, and I never in the
world thought that I would be getting ALS myself. And
(26:49):
because the guy, you know, literally was operating and thinking
about black holes in the sky and theories. Because the
brain still works. That's the thing about ALS. The brain's
still working. Here kind of joyce.
Speaker 3 (27:02):
Uh.
Speaker 5 (27:03):
I've always had this plaque on my bathroom wall and
it said, it is what it is, but it can
be what you make of it. And you've just got
to take that attitude and live life as funny as
you can and deal with things as say, come along.
Speaker 2 (27:21):
How are your children dealing with it?
Speaker 4 (27:24):
Great?
Speaker 1 (27:25):
Uh?
Speaker 5 (27:26):
My daughter is the most active, and she's with Rick
for everything. She's better with the technology and she she
goes that route and he's doing a ice water ice
Bucket Challenge tomorrow high School.
Speaker 1 (27:44):
Oh, now, wait a minute, Rick, You're gonna let him
dump a bunch of ice water on you.
Speaker 4 (27:49):
And I'm gonna have them play I'm Unstoppable. It's by Sea.
It's an Australian singer. I'm going to have him play
that song. Oh, they're dumping the ice ice bucket on me.
Speaker 2 (28:01):
I hope it's a small bucket, man.
Speaker 4 (28:03):
I mean you're going to have to do it twice
because there's a couple of verses. Joyce is saying no, no, no, yeah,
no warm water with no don't worry.
Speaker 1 (28:15):
I gotta say I think it's an amazing viral idea.
Speaker 2 (28:18):
The ice bucket.
Speaker 1 (28:19):
Challenge was one of the coolest things we saw some
of the most entertaining videos to come out. And it
was genius to choose ice water obviously because of the
because of how funny it is. We all know exactly
what that would feel like and we don't need to
experience it to relate to it.
Speaker 4 (28:34):
Well, I went back to my old high school, but
I used to teach here at Dullest John Foster Dallas
out in sugar Land, and the coach there, he's going
to assemble the baseball team and a few other people.
He said, there's some people that are going to come
out that are going to be a surprise for you.
And I've had even the old baseball coach that I
used to teach with is going to come out apparently,
(28:55):
and so they're gonna.
Speaker 1 (28:57):
Be careful that if you see them carrying Iglus coolers,
you're in trouble.
Speaker 2 (29:03):
It's not gonna be smarter than you think.
Speaker 1 (29:05):
It's gonna be bigger than you think.
Speaker 4 (29:07):
Well, I'm gonna work bathy suit and then I'm gonna
change afterwards and do it twice the suret I have,
says qre A l S. That's it's red red shirt.
Speaker 1 (29:17):
I guess one of the things about the how virable
it got is that it sort of became part of
our media landscape and uh we we sort of see
it regularly. And I wonder if the the ice bucket
is not a thing onto itself now and that we
we need to remind people this is because of of
a l S. And it's it's the it's the it's
(29:39):
to raise awareness about this orphan disease.
Speaker 2 (29:42):
And you can go to a l.
Speaker 1 (29:43):
S dot org, a l S dot org two to
get some information about how you can get involved.
Speaker 2 (29:51):
You can donate.
Speaker 1 (29:52):
You can also participate by being a volunteer if if
you're affected by this disease. As Joyce and Bick have
already you mentioned, the support group has been what has
been one of the most important aspects of their life. Now,
Ladies and gentlemen, if you have any questions related to Houston, PA,
you can just send me an email. Texan from France
(30:12):
at gmail dot com. I'm glad to send you a
link to the organizations that promote or just you know,
I'll answer your questions or maybe even have your friends
on the show because they're involved with a nonprofit organization.
Speaker 2 (30:25):
I'm always looking.
Speaker 1 (30:26):
Texan from France at gmail dot com. I want to
thank you for listening and caring about the issues that.
Speaker 2 (30:31):
Put on this show.
Speaker 1 (30:32):
My name is Lwald. I am the Texan from France
and this has been Houston PA, Houston's public affairs show,
Houston Strong
Welcome to Houston, PA, Houston's public affairs show, an iHeartMedia broadcast.
Our disclaimer says that the opinion is expressed on this
show do not necessarily reflect those.
Speaker 2 (00:17):
Hell by this radio stations.
Speaker 1 (00:18):
It's management staff for any of its advertisers. My name
is Laurent I am the Texan from France and we're
going to talk about ALS today. That was called lou
Garrig's disease when I was a kid, and you probably
remember the what maybe the most viral videos in the
(00:39):
world when the ALS community came together to start the
ice Bucket Challenge. Remember when people were dumping entire buckets
of ice on themselves to raise money and awareness for ALS.
Speaker 2 (00:52):
That's them.
Speaker 1 (00:53):
It's this muscular degenerative disease that happens in the brain.
It's extremely complicated. It's all so one of those orphaned
diseases that is not spoken of very often.
Speaker 2 (01:04):
We don't know a whole lot.
Speaker 1 (01:05):
About it, as you can tell from the way I'm
talking about it. I'm certainly no expert, but one of
those diseases that is known by the first famous person
to get sick with it. It was Lugerig, who was a
baseball player is the kind of disease that is in
need of attention and awareness, and we're going to speak
with a man who is living with it, but his
(01:25):
life experience is really what is so amazing about him.
He was a Vietnam War veteran, he was a teacher
in England in the Bahamas, and he married a Canadian.
We're talking about an international existence that is worth an
interview too itself. So we're going to stay really positive
about it. But we want to make this connection for
people to raise awareness so that those of us who
(01:48):
like to donate a little money to research or to
nonprofit organizations can help to get together and do this. Remember,
if you can't afford to give a whole lot of money,
giving a little bit, even if it's just five bucks,
just a few bucks. As a commune, when we come together,
we can make a huge difference. My guests today are
Rick Thornberg. He is living with als. He is also
a veteran of the Vietnam War, as I mentioned, and
(02:11):
he was a teacher and he lived on Cat Island
in the Bahamas, which happens to be the only island
in the Bahamas.
Speaker 2 (02:17):
I've been to.
Speaker 1 (02:17):
I've been to Nassau, but you sort of land there
to go through customs and then you travel on on
a smaller plane to your final destination. It's a beautiful place.
We'll definitely talk about that with him. Is his wife,
Joyce Thornberg. And Danatria Spears is the associate director of
Development for the ALS Association of Texas and Danatria, I'd
(02:39):
like to start with you because you need to tell
us what ALS is and how your organization helps the
people that are sick with it, but also the people
living with them, because it's the kind of disease since
it limits mobility and it is degenerative. It is without
a cure, which means that people get progressively sicker and
(03:01):
need a whole lot of help. Although I think we're
going to talk about the possibility of these neuro implants
that Elon Musk is making famous as one of the
potential therapies because since they're essentially about hacking the brain
into seeing again if someone is blind, for example, the
future is actually really bright. And will say this as
(03:23):
a history of humanity. If you know about the advances
that are made in the field of cancer therapies, for example,
breast cancer we know that if you pay attention to
these diseases and you talk about them, and you compel
people to first of all, get checked out and also
to fund the research that goes into finding the cures. Well,
(03:44):
we find a cure. It has been the history of humanity,
or just eradicate the diseases little by little, and there's
no reason to believe that we won't be able to
do it.
Speaker 2 (03:52):
So the NATRIA tell.
Speaker 1 (03:53):
Us about the ALS Association of Texas and again they're
online at a LS dot org. A l S dot org.
You will get to the Texas chapter or wherever you
are if you're listening to this in another place in
the world. But it's a great place to start getting
information and I guess especially if you need a community
of help.
Speaker 3 (04:13):
Yes. So our mission at the ALS Association is to
make ALS a livable disease and one of the ways
that we are trying to do that is with early testing.
It could sometimes takes months for someone to get their
diagnosis of ALS. Some of the services we provide we
have support groups where individuals are able to connect with
(04:34):
others on their like journey and you know, give each
other that emotional support. We also have our medical equipment
loan program because it's estimated that someone living with ALS
will have the at a pocket cost of two hundred
and eighty thousand dollars a year, So it's very expensive,
and we, of course we fund research and advocacy as well.
Speaker 1 (05:00):
Yeah, the advocacy comes in line with this community building.
I obviously the direct connection of the association to helping
people get what they need as far as the care
that they need is in it. Well. I guess in
addition to that, you have this community building aspect to
all these organizations that allow people to just get in
(05:22):
contact with someone else who's experiencing the same thing or
is way ahead of them, so that you can share
this information and help people get to the right place
or the right physicians for instance. Correct, you're telling me
that the out of pocket expenses of someone living with
ALS can be over two hundred thousand dollars. That's all
the doctor visits and the drugs that they are prescribed.
Speaker 3 (05:41):
Yes, and even the equipment that you know one might
need in the different stages of their diagnosis.
Speaker 2 (05:47):
So it's extremely expensive.
Speaker 1 (05:50):
Rick Thornberg is living with ALS, and I guess Rick,
we could start by how you got your diagnosis because
I should say, you look great, sir, and you are
still perfectly functioning hopefully. The disease is very slow moving,
and you caught it early, right, which means that you're
probably on some therapy to slow it way down.
Speaker 4 (06:10):
Yes, I am taking right now. I was diagnosed last spring.
I think I probably had this disease before that. But
what I did notice is a tremendous fatigue even doing
small jobs. And I was a guy that would do
a lot of jobs right to the end, you know,
I'd work myself to the bone kind of. But I
can't do that anymore. I don't do the lawn anymore
(06:33):
in my house. Got somebody else doing that.
Speaker 2 (06:36):
It's just too tiring.
Speaker 4 (06:37):
And too tiring. The fatigue factor is enormous. I mean,
after a shower out of these days, I got to
go take a little nap after the shower.
Speaker 2 (06:45):
Really, But.
Speaker 4 (06:48):
What was I going to say, Well, you.
Speaker 1 (06:50):
Were talking about how you were diagnosed. Oh yeah, I
felt a fatigued.
Speaker 4 (06:54):
But how I was diagnosed was I had this twitching
in my arms, and my dermatologist, oddly enough, suggested I
go to my primary which I did, and she recommended
a neurologist and the neurologist doctor Kassar, a wonderful doctor
out here. She's e Lebanese by the way. She's her
(07:17):
family's in trouble kind of, but she diagnosed it and
then she sent me down for second opinion of doctor
Appel downtown, a Houston Methodist who runs a neurological clinic.
And they are fantastic people here. If you're going to
have als Danatria and all the people that work with
als here in Houston, you couldn't do better. I don't think,
(07:38):
And I've talked to a bunch of people from different areas.
They know as much as anybody. But right now, to
slow down, I guess the process a little bit. I
am taking two drugs. One of them is called rylasol,
which I take twice a day, and the other is
called rata kava, which is a crazy thing. You take
(08:00):
it fourteen days, and then you don't take it fourteen days,
and then you take it fourteen days and so on
and so forth. But hopefully that's doing something for me.
I don't notice dramatic differences, but that's what they said.
You wouldn't necessarily notice what's going on. But it's supposed
to extend your life a little bit.
Speaker 1 (08:19):
Yeah, so it's supposed to slow down the degeneration in
the brain. We should explain what ALS is. As we said,
it was known as lou Garry's disease. I'm gonna attempt
to say what it is. It is amuotrophic elateral sclerosis.
Speaker 2 (08:33):
That's what it stands for.
Speaker 1 (08:35):
I do not know what amotrophic means.
Speaker 4 (08:39):
It's screwing up my nerves, uncles. And what they say is,
by the way I used to lift weights. I used
to try to increase my weights, like pressing and so on.
But they said, you've got to stop that, so you
don't when you have ALS, you don't do any extra stuff.
I try to do an exercise routine every day. I
(08:59):
walk five thousand steps, but I don't try to do
any super extra weightlifting types of things. They say, don't
do that because you will cause yourself to be more
degenerated by doing that, and don't ask me the medical
explanation for that. But I'm trying to obey those things now.
(09:21):
And another thing is all these commercials on TV telling
people that go on diets and everything lose twenty pounds
et cetera. What they tell me now, Rick, eat more,
eat between meals. Yeah, so I'm losing weight. I used
to be one hundred and seventy pounds. I'm down right now,
(09:41):
probably do about one hundred and forty six hundred and
forty seven pounds.
Speaker 1 (09:46):
So you eat a lot of eggs and French cheese.
Maybe you have a Canadian wife, which means that she
is definitely in touch for me.
Speaker 4 (09:53):
And I drink, yeah, protein drinks and in between meals,
and you know, I try to eat regular meals and
so on like that. I don't have the appetite I
used to, but I try to eat anyway. Physically, I
try to do it. And because you because you need to.
You can't lose keep losing the weight. So I've kind
of stabilized now in between say one forty five and
(10:17):
one fifty, kind of somewhere in that area.
Speaker 1 (10:19):
And you go, do you go to regular doctor's visits?
Speaker 4 (10:22):
Oh? Absolutely, yeah, I've got so many doctors. Yeah, Donetria
knows that that. Uh, it's it's I can't even remember
a lot of their names, but yes, they do. You
go to these clinics in Houston and they'll go through
that you'll go down there, They'll they'll bring dietitians out,
they'll do blood work for you. Uh, they'll they'll talk
(10:45):
socially with you if you need some social help. I mean,
they just do everything. These people are wonderful. And the
veterans are the same way. The debate people over here
are are just incredible. They've done so much for me.
I don't want to talk about no, but the civilian
population is in as Danatrius says, they're in trouble financially,
(11:07):
whereas the veterans are helping me out. And I don't
want to tell you how much, but I've got to
get my house.
Speaker 1 (11:11):
No, but it's good to know that you're getting the
help that we promised you as a society. Like you
served and you went to school and on the GI
bill and for the Masters, And I like how you mentioned,
yeah it was you know, it was, it was, it was.
It was kind of given to me. That's the impression
that I get. And it's like, no, sir, you earned that.
That was part of your pay. It is literally part
(11:33):
of the payment package you get for serving in the army.
And you went to Vietnam, you had to go to
you were deployed right before you were married, or actually, no,
you got married a day before you were deployed essentially.
Speaker 4 (11:46):
Well, I was at Fort Knox, Yeah, it was. It
was a couple of weeks before, but we kept the
wedding date. Yes, and I did go over. And as
I say, I was sitting in that room before I
left San Francis go make my last phone call to
my wife, and they were playing I'm leaving on a
jet plane in the background, and I'm thinking, what what's
(12:09):
going on here? Right? Yeah? I mean, and my parents said, oh,
you'll get an office job. Wrong infantry.
Speaker 2 (12:16):
Yeah, you carried a grenade launcher, you told me.
Speaker 4 (12:18):
I did seventy nine grenade launch or a pretty bad
weapon if you're trying to kill people. But kid asked
me in one of my classrooms. I like, do you hunt,
mister Thornberg? And I said, no, I don't hunt, except
I did hunt people once and I didn't much like that.
Speaker 1 (12:33):
So I didn't much like being shot at either.
Speaker 3 (12:35):
No.
Speaker 4 (12:36):
I didn't much like being shot at. No.
Speaker 1 (12:38):
So I would say that a grateful country could definitely
afford to pay for your masters, and especially since you
put it to good use to helping more people.
Speaker 4 (12:46):
I never I never asked the veterans for anything until
with the masters. Yes, but that was just basic stuff.
But I never until now with the ALS, I never
asked them for a dime and their hell and they're
helping me out of this.
Speaker 1 (13:01):
It's great to hear because we see if this is
one of these subjects, it's usually negative when it comes up.
We usually hear about how the veterans are neglected, and
we also know that they do some things right, and
it's it's good to hear. This is we this is
what we want, and therefore we should replicate that.
Speaker 3 (13:19):
Well.
Speaker 4 (13:20):
I want to say, if you're in the Houston area
and you're a veteran and you have a paralytic disease
of some sort and that includes Parkinson's and whatever, including ALS,
go to a guy who is in the Veterans Administration's
name is Greg Tracy, and he is an incredible guy.
Because I heard stories about people that were diagnosed and
(13:42):
they didn't get any help for months. He got me,
He got me a certified as one hundred percent disabled
within two weeks.
Speaker 2 (13:51):
Did his job.
Speaker 4 (13:52):
Yes, he is a great guy. He's a great guy.
So that all these people in Houston. I can't Joyce
keeps saying, Gee, these ale less people like to not you.
They're so wonderful. What.
Speaker 1 (14:03):
Well, it's a small community, and as we've mentioned, it's
a sort of an orphan disease.
Speaker 2 (14:08):
It's a disease that isn't very well understood.
Speaker 1 (14:11):
We only know it by its initials or that it
was Lugerrig's disease. And therefore the community must feel the
impetus to help itself. It's just there's so few of
you thus far. But we can grow those numbers, and
especially we can grow the amount of money and elbow
grease that goes into searching for a cure. There is
(14:32):
no cure yet for als. You are listening to Houston
PA Houston's Public Affairs Show. My name is Laurent and
my guests today are from the Als Association of Texas.
They are online at a LS dot org a l
S dot org. That website is like plugging yourself into
a support group. Instant help. Literally, you'll you'll have on
(14:56):
the page an opportunity to even find your local chapter.
It's probably the quickest and easiest way to get instant help,
so to speak. If you've been diagnosed with ALS. Rick
Thornberg is living with ALS. He is also a veteran
of the Vietnam War. He served as a member of
the fourth Infantry Division in nineteen seventy. He was a
(15:17):
recon killer team member. He carried a grenade launcher and
went on recon mentions and felt sniper bullets. Literally his
head nearly grays his head. You were thankfully not actually touched.
His wife, Joyce is with him. We haven't spoken to
her yet, but I'm about to ask her a question.
And the Natrius Spears is the associate director of development
(15:39):
for the ALS Association of Texas. Joyce, do you must
You're right next to Rick, and you're not sick, but
you're obviously completely affected by the disease. And you're the
kind of person who would go to ALS dot org
to find the support group of the spouses, for instance,
of the family members who are also living with this disease.
Speaker 2 (16:01):
Can you speak a little bit to that.
Speaker 1 (16:03):
It must have been terrifying to hear the diagnosis.
Speaker 5 (16:06):
Well, when we first heard the diagnosis, we just looked
at each other and said, well, we'll continue doing what
we have always done. Just keep going one foot after
the other and day after day, and we were going
to as we've always done. We're going to enjoy life
as much as we can. I have a binder of
(16:28):
literature on everything from exercises to food, nutrition, socializing, whatever
you need. I just go to the index and I
check on it, read the pages over again. He is
getting high calorie, high protein meals, making French cheese French
(16:57):
and it's all for him. Cannot eat the same diet
as him, but it's it works for him. I have
seen him losing weight, uh, and he's very tired all
the time.
Speaker 4 (17:15):
But it's the same old Rick.
Speaker 5 (17:17):
I mean, he's the same enthusiastic, and we are lucky
to have a great support team with our relatives, family
and people. Wherever we've been living, we've got people. Rick
was very popular at his high school where he taught.
Dulles was Yes, he was a very yeah popular from
(17:44):
the other teachers and from his students. But we're just
going to keep going and as things pop up, we
have a support system and very knowledgeable people to get
information from, and we just feel like we're not in this.
Speaker 2 (18:00):
Yeah.
Speaker 1 (18:02):
But this has also monopolized a great deal of your time.
You have to driving him around probably brick.
Speaker 2 (18:07):
Do you still drive?
Speaker 1 (18:08):
He's still driving? Yeah, you see, so that's good because
people who live with epilepsy, for instance, can't drive anymore.
There are some diseases which preclude there will come a time.
Yeah maybe not maybe now, aren't you would? I feel
I'm not affected by the disease directly the way you are.
It feels cruel to just be optimistic without knowing so
(18:29):
much about it. But don't you feel like there is
reason that we keep talking about technologies that are being
developed right now and coming to the market which will
be helpful to you.
Speaker 4 (18:40):
Yes, I think you're right, Loren, And I'm hoping it's
a pill.
Speaker 1 (18:44):
Actually, yeah, of course, yeah, yeah, although we've talked about
the neurolink the brain implants, which may very well be
part of the solution. And you'll be happy to know
that the first person who had this brain implant installed
has reported feeling zero pin literally he just apparently the
operation room very very well, even though it's somewhat invasive,
(19:07):
but he he, he has and he's enthusiastic. And if
you've seen what this this first human being with a
with a computer chip implanted in his brain can do,
he is a quadriplegic. He lives in a chair and
can now compute control a computer with his brain. It's extraordinary,
(19:27):
and they expect to be able to help people see again,
or for for some people, it'll be the first time
that they see. It's not the same kind of vision
that we're used to, but it stimulates the brain into
seeing or hearing, and there's just absolutely no reason.
Speaker 2 (19:41):
That they won't.
Speaker 1 (19:42):
They shouldn't be able to figure out a way to
hack around the disabilities that this disease is inflicting upon you.
But you're right, I think a pill would be The
problem is the problem is that you're living with a
great deal of unknown. We don't know what causes the disease.
We don't have a cure.
Speaker 4 (19:59):
No, it's and the way you're diagnosed here they eliminate
everything else. Then you are diagnosed as luga or als.
It's not as though they have a blood thing that's
going to just tell you there, it's not.
Speaker 2 (20:14):
Wow.
Speaker 1 (20:15):
Yeah, Well the NATUA was mentioning this. You mentioned how
long it can take for people to become diagnosed. The
nature of what you're saying is that what it means
that first they must be diagnosed to not be sick
with any of the other diseases which give symptoms. Rick
was describing that he has some twitches in his arms.
There are several potential problems that can make muscles twitch,
(20:37):
and I guess you're going to have to go through
an entire battery of tests, maybe with even several physicians
before they eliminate every possibility and come to als.
Speaker 4 (20:47):
Well, that's what these clinics are for. They go through
all these tests, anything that you can possibly imagine they're
doing for you. The EMG test, which do electrical muscle
tests on all your muscles and nerves and something like that,
and they're very thorough, so they know what's going on
and hopefully they will be able to find some kind
(21:09):
of a cure here. I don't know what's going to
happen in my lifetime, but at least well, another thing
is an interesting thing is finding out if you do
have this, whether it's genetic or not, because the genetic
has different possible solutions here. And I sent in my
DNA and I got back the word Actually, mine is sporadic.
(21:32):
It's not the genetic type. And so I was able
to at least tell my children I've got two boys
and a daughter that they probably won't get this because
I don't have the genetic strain. And veterans have almost
twice as likely to get als, and combat veterans even
more likely to get als than just regular civilian populations.
(21:57):
We don't actually know why that is. But ill, if
they want to call Agent Orange, okay, fine, they can
say that, but I.
Speaker 1 (22:05):
But Agent Orange wouldn't explain why people are still getting
it today, right, because obviously it's not in the air
for us, but people are still becoming sick with it.
Speaker 2 (22:16):
Is It seems to me.
Speaker 4 (22:17):
It could be something, yeah, like skin cancer, you know,
oh yeah, because sometimes you don't know what's going on
with your skin until decades and decades later. So I
don't know that that's what it is, Laurent. I'm just
saying veterans are more likely to have als than regular
civilian population.
Speaker 1 (22:37):
Well, since it's a disease that affects the brain, maybe
suffering from enormous trauma is something that can trigger an anomaly.
Speaker 2 (22:45):
Yeah, we don't know.
Speaker 1 (22:46):
But I just that's the first thing that comes to mind. Obviously,
veterans and to have harrowing experiences in common.
Speaker 4 (22:52):
It could be, could be.
Speaker 1 (22:54):
So that's that's why there's going to be an ALS
walk on Saturday, November sixteenth at the University of Houston
the NATREA. The purpose of this walk is to raise
money in awareness, but we really need people to donate
five bucks basically because it's the research that is going
to make a difference. We're gonna have to find that
little natural compound that exists in nature which will counter
(23:17):
this disease. We know it's out there. That's what history
has taught us in the sciences. Don't you agree? Are
you optimistic? Since you don't live with disease? Disease thankfully,
but you see a lot of people who do, and
you've seen an evolution probably of how the disease is
being treated by society, and the whole ice bucket challenge
(23:39):
was a big success. Do you see a difference? Do
you Are you feeling optimistic about the raise and awareness?
Speaker 3 (23:46):
Definitely? I do see that people usually get evolved with
the LS association once they have a connection to it,
so I feel like, yeah, it's not That's why the
walk is important to bring awareness and shine on this
because not a lot of people know about ALS.
Speaker 2 (24:03):
Yeah, and obviously.
Speaker 1 (24:04):
I mean that's normal, that's very human. You wouldn't pay
attention to something like this. We have busy lives until
it actually falls upon you, and then you realize that
you're part of a very small community and you.
Speaker 2 (24:15):
Need to grow it so you can do that.
Speaker 1 (24:17):
So they're going to have the ALS walk on Saturday,
November sixteenth at the University of Houston. You can go
to ALS dot org als dot org to find out
more about that and also to find out more about
the disease. You know, if you're sitting at home and
you've realized that maybe you have a symptom that resembles
what we're talking about here, a muscle or twitching, you
(24:40):
should go to your primary physician to get yourself checked out.
They're the ones who are going to be able to
connect you to a specialist or someone who can actually
look at what it can potentially be.
Speaker 4 (24:50):
I could mention one thing is that, and I was
just talking to a veteran yesterday. He emphasized the fact
that you really don't know how it's going to affect
you because it comes and is manifested in different ways
with different people like mine. Is upper body like that
a little bit trouble swallowing and so on like that,
(25:11):
and fatigue. For other people they have problems with their
lower limbs, they can't walk or they If you saw
it when I was at minimade, the guy next to
me who was in a wheelchair, he couldn't he couldn't
do anything. He couldn't move his arms, he couldn't move
his legs, he couldn't talk. And that's so you don't
(25:32):
you don't actually know what's what's going You don't know
how fast it's going to progress, and you don't know
what what's going to hit you next.
Speaker 1 (25:39):
What is hard to relate to is the amount stress
that you would be dealing with.
Speaker 2 (25:44):
Due to the unknown.
Speaker 1 (25:46):
Yeah, that that is a profound source of angst for
anyone if you don't know about something that is happening
to you and how it's going to progress.
Speaker 4 (25:55):
There was a guy that wrote a book a name
I can't remember thee the right now, but he called
it why Waste a perfectly good terminal illness?
Speaker 1 (26:06):
Oh No.
Speaker 4 (26:07):
In the book, he says that God gave him that
so he could do things for other people. That God,
he thought that was his reaction als God gave me Ailis.
I don't have the same opinion as a matter of fact,
but he was a good guy. And you know, uh,
this it just depends on your attitude.
Speaker 2 (26:28):
Yeah, you gotta have it.
Speaker 4 (26:29):
You got you figure Stephen Hawking, that guy was had
ALS for fifty five years. He was my goat, what
the funny thing is? Even before I had this disease.
To tell people, I said, you think you've got it
bed Yeah, with Stephen Hawking, and I never in the
world thought that I would be getting ALS myself. And
(26:49):
because the guy, you know, literally was operating and thinking
about black holes in the sky and theories. Because the
brain still works. That's the thing about ALS. The brain's
still working. Here kind of joyce.
Speaker 3 (27:02):
Uh.
Speaker 5 (27:03):
I've always had this plaque on my bathroom wall and
it said, it is what it is, but it can
be what you make of it. And you've just got
to take that attitude and live life as funny as
you can and deal with things as say, come along.
Speaker 2 (27:21):
How are your children dealing with it?
Speaker 4 (27:24):
Great?
Speaker 1 (27:25):
Uh?
Speaker 5 (27:26):
My daughter is the most active, and she's with Rick
for everything. She's better with the technology and she she
goes that route and he's doing a ice water ice
Bucket Challenge tomorrow high School.
Speaker 1 (27:44):
Oh, now, wait a minute, Rick, You're gonna let him
dump a bunch of ice water on you.
Speaker 4 (27:49):
And I'm gonna have them play I'm Unstoppable. It's by Sea.
It's an Australian singer. I'm going to have him play
that song. Oh, they're dumping the ice ice bucket on me.
Speaker 2 (28:01):
I hope it's a small bucket, man.
Speaker 4 (28:03):
I mean you're going to have to do it twice
because there's a couple of verses. Joyce is saying no, no, no, yeah,
no warm water with no don't worry.
Speaker 1 (28:15):
I gotta say I think it's an amazing viral idea.
Speaker 2 (28:18):
The ice bucket.
Speaker 1 (28:19):
Challenge was one of the coolest things we saw some
of the most entertaining videos to come out. And it
was genius to choose ice water obviously because of the
because of how funny it is. We all know exactly
what that would feel like and we don't need to
experience it to relate to it.
Speaker 4 (28:34):
Well, I went back to my old high school, but
I used to teach here at Dullest John Foster Dallas
out in sugar Land, and the coach there, he's going
to assemble the baseball team and a few other people.
He said, there's some people that are going to come
out that are going to be a surprise for you.
And I've had even the old baseball coach that I
used to teach with is going to come out apparently,
(28:55):
and so they're gonna.
Speaker 1 (28:57):
Be careful that if you see them carrying Iglus coolers,
you're in trouble.
Speaker 2 (29:03):
It's not gonna be smarter than you think.
Speaker 1 (29:05):
It's gonna be bigger than you think.
Speaker 4 (29:07):
Well, I'm gonna work bathy suit and then I'm gonna
change afterwards and do it twice the suret I have,
says qre A l S. That's it's red red shirt.
Speaker 1 (29:17):
I guess one of the things about the how virable
it got is that it sort of became part of
our media landscape and uh we we sort of see
it regularly. And I wonder if the the ice bucket
is not a thing onto itself now and that we
we need to remind people this is because of of
a l S. And it's it's the it's the it's
(29:39):
to raise awareness about this orphan disease.
Speaker 2 (29:42):
And you can go to a l.
Speaker 1 (29:43):
S dot org, a l S dot org two to
get some information about how you can get involved.
Speaker 2 (29:51):
You can donate.
Speaker 1 (29:52):
You can also participate by being a volunteer if if
you're affected by this disease. As Joyce and Bick have
already you mentioned, the support group has been what has
been one of the most important aspects of their life. Now,
Ladies and gentlemen, if you have any questions related to Houston, PA,
you can just send me an email. Texan from France
(30:12):
at gmail dot com. I'm glad to send you a
link to the organizations that promote or just you know,
I'll answer your questions or maybe even have your friends
on the show because they're involved with a nonprofit organization.
Speaker 2 (30:25):
I'm always looking.
Speaker 1 (30:26):
Texan from France at gmail dot com. I want to
thank you for listening and caring about the issues that.
Speaker 2 (30:31):
Put on this show.
Speaker 1 (30:32):
My name is Lwald. I am the Texan from France
and this has been Houston PA, Houston's public affairs show,
Houston Strong
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