May 27, 2025 • 22 mins
Billy Joel recently announced that he has been diagnosed with normal pressure hydrocephalus, or NPH.
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Episode Transcript
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Speaker 1 (00:00):
Was it Friday afternoon when the Billy Joel news came out? Yes,
that he's got normal pressure hydro cephalis. I think I'm
saying that right, didn't they say for a lot of people,
it's really underdiagnosed because a lot of people just chalk
(00:21):
it up to and you don't have to be old
to have it, But more people that get it are older,
but they just chalk it up to it's just part
of aging or some of the issues that come with
NP and p h.
Speaker 2 (00:36):
Am I saying that right? Yeah?
Speaker 1 (00:38):
Are just again they just get chalked up to a normal,
regular part of.
Speaker 3 (00:45):
The deterioration of your hearing and your vision and your balance.
Speaker 4 (00:48):
Right, right?
Speaker 1 (00:48):
So what part what part of it was from Billy
Joel was where they oh, because he had fallen?
Speaker 3 (00:54):
Well, what's that clip they kept showing of him on
stage where he was Did he toss the mic stand
or something and he.
Speaker 4 (01:00):
Fell or this is in February? Kenneticut, Yeah, yeah, he
just I mean he fell. Was this the first sign
of something being wrong? Or had he fallen behind the scenes.
Speaker 1 (01:10):
Could have been the first sign, right, I would think not.
I think it was the first real public one.
Speaker 2 (01:17):
Yea of him going.
Speaker 4 (01:21):
And they say it comes out of the blue. Other
than maybe aging.
Speaker 2 (01:26):
They said he has problems with hearing, vision and balance.
What is the is it?
Speaker 1 (01:35):
I don't want to say common because common makes it
sound like everybody has it. But do a lot of
people have it and just don't know? Well, I mean,
especially as you get older. That part I get.
Speaker 4 (01:50):
Says the prevalence if you're over eighty is six percent.
Speaker 2 (01:55):
Oh that's it.
Speaker 4 (01:58):
And it's less than one between your seventies.
Speaker 2 (02:02):
Oh so it's really not that prevalent.
Speaker 1 (02:05):
Didn't they say for younger people you can get it
reversed or treated through surgery.
Speaker 4 (02:11):
Like draining, like actual.
Speaker 2 (02:13):
I don't know if it's draining.
Speaker 1 (02:14):
I mean, it has to be right because all you're
trying to do is limitluid, the fluid on the brain.
Speaker 4 (02:23):
So is he having surgery for it?
Speaker 2 (02:24):
I don't think so, I don't think because it's too old.
Speaker 1 (02:28):
That's the way that I was reading it is that
for younger people who get it, and I when they
say younger, I don't know what they mean by that.
Speaker 2 (02:35):
I don't know if it's like.
Speaker 1 (02:38):
In rare cases you get somebody who's young who has
it well, I mean, we've heard of people who have
hydrosyphallus before, whre's water on the brain.
Speaker 2 (02:47):
But I don't know if it's the same as this.
Speaker 1 (02:51):
But they they did say that for younger people, they'll
go in and they'll do surgery. But I don't know
what they classify as younger people, Like the people in
their thirties get it, people learn in their twenties and thirties,
get it, I would assume, or is that a whole
different kinds of sophaalis Kristin?
Speaker 4 (03:07):
Well, normal pressure honestly sounds good. What is it when
it's not normal pressure? What is it called then?
Speaker 2 (03:15):
Not normal? I have no idea. I have no idea.
Speaker 1 (03:20):
Christian, will you find me somebody who had maybe a
grandparent or a parent who had it or they would
even know? And they said in so many cases, like
if it's somebody who's older, Like let's say it's a grandparent, right,
If it's somebody who's older and they just seem like
they've lost their balance, they've lost some of their vision,
you may not even think to have that looked at.
(03:42):
You might just think it's part of the aging process,
and like, well, of course they're older.
Speaker 4 (03:46):
Their vision is shot. But when it's someone they're unsteady.
When it's someone younger, is it usually tied to some
sort of head trauma. So you know they've they bonked
their head, he took a shot or a blow to
the skull.
Speaker 1 (04:04):
See, I was going to go the other way that
the way that you would know they're younger is that
they're falling, Not that the fault caused it, but they
were falling a lot.
Speaker 4 (04:14):
That could definitely be a symptom. But since they say
it comes out of the blue when you're older, there's no, no,
I have no idea.
Speaker 2 (04:19):
What would cause it if you were younger? I have
no idea.
Speaker 3 (04:23):
But it can be reversible if it's diagnosed and treated early.
Speaker 2 (04:27):
Right, But what is early?
Speaker 1 (04:29):
Like I thought I had read about Billy Joel, he's
not getting surgery.
Speaker 2 (04:33):
And you see his you know his I don't know
how you treat it.
Speaker 3 (04:37):
Christie Brinkley comes out, and then his daughter Alexa Ray
is saying, you know, he is entirely committed to making
a full recovery. So that gives you a sense or
a little hope, right.
Speaker 1 (04:47):
Yeah, but I don't know what is what is the
treatment for somebody who's who's older.
Speaker 2 (04:52):
Billy Joel is an older guy.
Speaker 4 (04:56):
The fluid tends to take up a little more space
in older adults because main volume shrinks as a normal
part of the aging process. But what happens in n
p H is an abnormal built up of fluid that
causes the brain to disfunction. Patients are often thought to
(05:19):
be developing dementia, which would make sense with some of
the also bladder control issues and trouble lifting their feet.
Oh I think I have audio of that.
Speaker 1 (05:34):
But but that could be that could be Go ahead,
go ahead, pull it up through every single one.
Speaker 2 (05:41):
No, but no, no, but but bladder, Okay, but bladder.
Speaker 4 (05:49):
Stop talking for a second. Don't look at the front
of your cargo. Shorts the.
Speaker 2 (05:59):
Balance and like that. That could be a normal sign
of aging. There, I am.
Speaker 4 (06:08):
So yeah, they would They wouldn't know, it, says the
hallmark symptoms go along with this catchphrase wet, wobbly, and weird.
Speaker 5 (06:18):
That's mean myrtle. So wait, it's wet, wobbly and weird.
Speaker 1 (06:29):
Yeah, oh that's a shirt.
Speaker 2 (06:34):
That's good.
Speaker 1 (06:34):
Okay, So wobbly is a valid balance, right, Wet is
your pissing yourself?
Speaker 4 (06:40):
Well, they call it urinarian continents.
Speaker 2 (06:41):
Right, that's called pissing yourself weird. I don't know, Bill,
he's just acting weird.
Speaker 4 (06:46):
I don't know, like cognitive Yeah.
Speaker 2 (06:48):
Yeah, well but that, by the way, that's rude.
Speaker 1 (06:52):
That's rude. That should be the name of is messed up. Oh,
it's the wet, wobbly and weird tour. So it says
the key difference, it's.
Speaker 2 (07:08):
Billion Elton's wet, wobbly and weird tour.
Speaker 4 (07:11):
Elton may have had.
Speaker 3 (07:12):
To special guess Rod Stewart.
Speaker 4 (07:17):
Ah, he's kicking soccer balls right in your head, it says, uh. Commonly,
this makes it seem like at any age, neurosurgeons will
do the shunt that which is obviously to drain. Yes,
but isn't this where you doesn't it drain, It doesn't
sit here. But one of the cases where it's drained
into another part of the body.
Speaker 3 (07:39):
Yeah, they said, this goes into the aptomen Oh there
you go. Yeah, and it's just absorbed.
Speaker 2 (07:43):
Oh, so it doesn't make it so it doesn't make
you like have to piss.
Speaker 4 (07:47):
No.
Speaker 3 (07:47):
I think it just sort of absorbs into your body.
Then I mean ultimately you'll go pee, right.
Speaker 4 (07:51):
Okay, but it's not a not a bedpan or a bag. Right,
So he the what was from the statement that he's
undergoing physical therapy right, So that sounds it's like it's
just for his balance.
Speaker 2 (08:08):
Yeah, well that's good, that's good.
Speaker 4 (08:12):
You feel hard February.
Speaker 2 (08:14):
Yeah, no, he went down.
Speaker 4 (08:15):
At the second I saw the news. I felt bad
because I'd made a joke about it on social media.
Speaker 2 (08:18):
Oh, don't feel bad.
Speaker 1 (08:19):
It's no, it's not like you knew. You were like, oh,
there goes Billy. Joel probably has nph.
Speaker 4 (08:25):
Remember he was as an Instagram or snapped out. Remember,
but I had him reacting to an old Milburnaire's program
where we sang one of his songs news too.
Speaker 2 (08:37):
Actually, am I going to line one? Hi Elliet the morning?
Speaker 6 (08:44):
Hey, good morning.
Speaker 2 (08:45):
Hey, who's this?
Speaker 6 (08:47):
My name is Philip. How are you Philip?
Speaker 2 (08:49):
I am doing great? What can I do for you? Sir?
Speaker 6 (08:52):
Well, I'm in my forties and I've hydrocephalus, but it's
been brought on by concussions. I've hit my head a
sixteen time or so, two of them considered traumatic brain injuries.
Speaker 1 (09:02):
So is that so that kind of goes back to
what Tyler asked earlier. Can it be caused by trauma
to the brain?
Speaker 6 (09:11):
YEP, they're not sure. If I just produce too much
cerebral spinal fluid. I wake up in the morning with headaches.
It gets better as the day goes on, and by
night time I'm without pain. So I don't get too
much sleep because I don't really want to go to
sleep because I wake up everyone. Definitely, but it definitely
(09:35):
affects my balance. I don't know of any cognitive issues,
but maybe I'm not cognitive enough to understand.
Speaker 1 (09:42):
That, so can I Can I ask you this like
when when you say balance issues, like how how.
Speaker 6 (09:48):
Bad I will trip five or six times a day.
I'm young enough, I've never fallen, but everyone that works
with me or sees me is like, you almost fell,
and it's like, yeah, that happens.
Speaker 1 (10:03):
So it doesn't look like you know, like sometimes like
you like like if you're walking, you catch an edge
where like you're you're hard put.
Speaker 2 (10:11):
So that's that's what you're doing.
Speaker 6 (10:14):
Just just just just just small little missteps that you
that you think you know where your foot's going to
go and it misses by happid inch And.
Speaker 2 (10:22):
What is the what does the doctor say.
Speaker 6 (10:26):
I've been lucky enough to be able to go to Hopkins.
I went up to NAO. They said the shunt would work.
It absolutely does drain into the abdomen for me. They
specifically said they were concerned because they weren't positive it
would be one hundred percent effective. And every surgeon I
(10:47):
talked to said, uh, you have an eighty five or
ninety percent chance of this fixing it. But if we
do surgery to you and and and and change your body,
you're going to have life time effects, and so you
should probably just stick with pain management.
Speaker 1 (11:05):
So the so the the the effects of so let's
say you have an eighty five percent chance of it working,
the effects of their fifteen percent are pretty severe.
Speaker 6 (11:16):
I mean, it isn't it isn't that big of an issue.
But when you put a mechanical machine into your brain,
it needs to be maintained. If I get another head hit,
which apparently I have an opportunity to because I've had
enough of them before, something could go wrong with it.
And so from that it's just why would we take
(11:38):
the chance if we aren't certain it's going to work.
Speaker 2 (11:42):
Because it's so.
Speaker 6 (11:45):
Yeah, But on the other side, it's it's one hundred
percent chance it's going to need maintenance and issues going forward,
but we're not certain it's going to help you. I
don't know.
Speaker 2 (12:01):
I like that. I like that high.
Speaker 1 (12:02):
I mean, listen, I don't have it right, so it's
easy for me to just sit here and go, oh, well,
that's what I would do without even knowing.
Speaker 4 (12:09):
You also love surgery.
Speaker 2 (12:10):
The well, that is true. When was your last when
was it?
Speaker 6 (12:17):
Oh?
Speaker 2 (12:18):
Well, let me back up a step.
Speaker 1 (12:19):
So you you trip from time to time, and like
you said, cognitively, you don't know. You have no idea.
You think you're all right, but I mean you'd be
crazy the but you're not.
Speaker 2 (12:28):
You're not.
Speaker 1 (12:28):
You're not pissing yourself, are you?
Speaker 6 (12:31):
Nope?
Speaker 2 (12:31):
Good? Thank you?
Speaker 4 (12:36):
Weird?
Speaker 2 (12:37):
Oh have you heard that before? Have you heard of
our new T shirt, the wet wobbly weird?
Speaker 6 (12:42):
I have I have not heard the wet, certainly the wobbly.
I mean it's that that that that that. As far
as day to day walking, I'm that I that I
currently work as a server and so i'm i'm I'm
carrying plates and trays and drinks and constantly and every
now five ten times I'm a shift. I will take
a misstep and I'll stumble a little bit. But I
(13:04):
haven't dropped anything and broken it in yet.
Speaker 2 (13:06):
Oh thank god. I was just gonna says my guy.
It's my guy. Great, I got I got mph.
Speaker 6 (13:12):
Server But but but but but I would wager someone
who's a little older, who isn't as active, Yeah that
if you if you take a misstep and you can't recover,
Oh sure, yeah you then you break a hip.
Speaker 1 (13:27):
Sure no, but and I mean it may he thank you, sir,
thank you. But this makes sense why they would say
so many cases don't go reported. This may actually I mean, listen,
does it suck for Billy Joel?
Speaker 3 (13:39):
But yes, creating awareness absolutely anytime somebody famous comes down
with something absolutely.
Speaker 4 (13:45):
Ste I'm hearing from more ticket holders than I am,
people familiar with MPUs.
Speaker 1 (13:53):
So, I mean the tours off, all tours, a lot
of dates. Yeah, yeah, everything's canceled. Didn't they say things
were autumn being refunded.
Speaker 4 (14:01):
So there's no dates he left on the schedule.
Speaker 1 (14:03):
I thought everything was white clean, yeah, and now everything
was being done like obviously if you went through a
third part of your screwed. But like just your regular Ticketmaster,
whatever you bought your tickets through.
Speaker 2 (14:16):
That that was being automatically done.
Speaker 4 (14:18):
Now I do know that the Billy Joel tribute We
May Be Right still performed Saturday night at the Rehobot
Beach Bandstand.
Speaker 2 (14:26):
Excellent.
Speaker 4 (14:26):
I didn't see the show. I saw it on social
media because the kids wanted to swim at the hotel
rather than stick around for the show. It is worth
pointing out, just so everyone can be as sensitive as
need be. Some specialists are moving away from the weird
w so wet, wobbly and weird.
Speaker 2 (14:48):
Oh wait, can we guess you will?
Speaker 4 (14:50):
You know it's going to have to do with the
dementia like symptoms, the cognitive issues, and you can understand
that we want it's not what but that wet?
Speaker 2 (15:01):
What that weird?
Speaker 4 (15:04):
It's like it's it's means sounding.
Speaker 2 (15:08):
Yeah, so is wobbley.
Speaker 4 (15:10):
No wobbley. If you are actually stumbling and having balance issues,
you are wobbley. But calling someone weird is it's rude?
Speaker 3 (15:18):
Wonky no.
Speaker 2 (15:21):
Wa, that's my favorite.
Speaker 4 (15:28):
Whoa, No, that's wobbley. You're falling. They're sticking with wet.
They we they found no probably yeah.
Speaker 1 (15:37):
No, that that's that's fine, that's fine, that's funny, that's fine.
Speaker 2 (15:40):
We can go with that.
Speaker 1 (15:41):
So wet, wet, wobbley and wacky.
Speaker 2 (15:45):
No, that's wacky.
Speaker 3 (15:47):
Is like way.
Speaker 2 (15:49):
Look at my shirts? Look at my shirt?
Speaker 1 (15:51):
Well it's probably covered in.
Speaker 3 (15:54):
Wet wobbly in cash?
Speaker 2 (15:59):
Am I going on the line three?
Speaker 1 (16:00):
I could do that warm season Diane, Hi elliot in
the morning.
Speaker 7 (16:07):
Hey is this me?
Speaker 6 (16:08):
Yeah?
Speaker 1 (16:08):
Hi?
Speaker 2 (16:09):
Who's this Hi?
Speaker 7 (16:10):
My name is Rebecca on Gong from the Eastern Shore
in Maryland. Yes, ma'am, we said, you guys talking about hydrocephalus.
My son was actually born with hydrocephalus in twenty twenty one.
Speaker 2 (16:20):
Now can I can I ask you this? Is it?
Speaker 6 (16:22):
Is?
Speaker 2 (16:23):
Is that different than nph?
Speaker 1 (16:27):
And I don't mean like in case of like where
it comes on older, but like I've definitely heard the
term of somebody being hydrocephallic before?
Speaker 2 (16:35):
Which is which is water on the brain? Is it?
Speaker 7 (16:38):
Is it?
Speaker 2 (16:39):
Is it what your what your son has? Is that
different than what Billy Joel has?
Speaker 7 (16:44):
Or is it my son? My son did have high pressure,
so he did have to get a shun. There was
you know, no other no other treatment option. He wouldn't
survive without a shun right to help during the fluid
and didn't.
Speaker 2 (16:59):
I read that?
Speaker 1 (17:00):
And maybe it's different when when you're talking about like
what what Billy Joel has versus what your son was
was born with. But the the advancements that they've made
in doing that type of surgery, because they are I mean,
look where you're going in right, you're going into the head.
Speaker 2 (17:16):
That the advancements they've made.
Speaker 1 (17:18):
In that type of surgery are are I don't know,
fivefold or but the things are so much better now
than they were even a handful of years ago.
Speaker 7 (17:29):
So they are, but still to this day, fifty percent
of pediatric shunts will ship will sale within the first
two years. My son actually had four brain surgeries in
the first three months that he was born, and last
May he went into shunt failure and from complications. He
did actually pass away on the thirty first of last year,
just before his third birthday. So they have made advancements,
(17:52):
but still, you know, so it is you know, unfortunate
that Billy Joel has has developed this. But anytime I think,
as Diane mentioned that about a celebrity can kind of
shed light on hydrocephalis, we can bring more awareness because
you know, sure they've made advancements, but in twenty twenty four,
twenty twenty five, people are still dying some hydrocephalis. So
it's important to continue sharing about it and spreading awareness
(18:16):
so that we can we can make better technology. Like
you know, there's no real technology that will let you
know when when someone who's in a shut failure. These days,
we've got smart houses, you smart terror you smartphones, smart watches,
but we don't have a smart shunt for hydrocephalis, and
so we're we're hoping and working towards that.
Speaker 1 (18:33):
Can I can I ask you two questions if you
don't mind, so the like when you you mentioned like
shunt failure right and that there's not like a smart shunt,
and I understand what you mean. And the number that
really shocked me is when you said, what did you say?
Fifty percent of them will will fail?
Speaker 2 (18:51):
How how do you know?
Speaker 1 (18:53):
How how does somebody know that they've entered shunt failure?
Speaker 7 (18:58):
Sure, different symce them. It can be very mild to
very drastic. You can someone can just have a headache
and that can be the beginning of shunt failure. And
when it's a younger person. They can't necessarily articulate that
to you, or you could essentially go into a coma
and then it's you know, it's certainly much more clear
from my phone. He actually it was a year ago
(19:19):
today when he first past sick, and he just wasn't
wasn't feeling very well. He was not quite three, about
a month away from his third birthday, and so we
just thought he had a tommy bug and and unfortunately
did the watch and wait, and the next morning on
the on the way to the hospital, he aspirated and
unfortunately did not did not survive all of that. So
(19:40):
his symptoms were very mild. You know, they say you
can be projectile vomiting, which he was certainly not doing,
eyes rolling back in the head, being in a coma,
and that it can assoul be very mild. So if
we had technology that would immediately alert to you that
something's not quite working, it's not during you one hundred percent,
that would that would definitely be very benefit. Sure are
(20:00):
they the younger kids.
Speaker 1 (20:02):
I feel like the answer is yes, But I'm assuming
that there is a ton of work in that field
right now to create a smart shunt.
Speaker 7 (20:12):
Sure, yep, I do understand from members are great, a
great organization, Hydrocephalis Awareness, and they they they are in
the work trying to trying to get that to happen.
There are definitely things moving behind the scenes. But you know,
this is forth takes a lot of research. Research takes
a lot of funding, so or you know, always partnering
and participating in walks. There's a walk in Baltimore and
(20:32):
Acturber for Hydrocephalis to spread awareness and get that additional
funding so that we can get that across the finish line.
Speaker 1 (20:40):
And then last last thing, if you if you don't mind,
like at at such a young age, how did how
did you know.
Speaker 7 (20:48):
There you have hydrocephalus? So they actually found out when
I was pregnant. When we when at you know, the
halfway mark for the whole anatomy span and everything, they
determined that the ventures in his brain were enlarged and
so we had to do a f MRI which determined
that he would have hydrocephalus. But when he was four
years old is when he had that first surgery took place.
Speaker 2 (21:06):
The first shend I gotcha, I gotcha.
Speaker 1 (21:09):
Well listen, I obviously I hate the story, but I'm
done I'm very happy that you called.
Speaker 6 (21:15):
Yeah.
Speaker 7 (21:16):
Yeah, well, and I want to say two quick things,
if I may. So wobbily is definitely a good description.
I would say wet, wobbily and wonderful. Let's take out
the weirder rackney and call it webbily and wonderful.
Speaker 2 (21:27):
Wait, have you have you really thought about what like?
Did you really take that into account?
Speaker 6 (21:34):
Yeah?
Speaker 7 (21:35):
Which, no, just now after hearing you, okay, all right,
that's wonderful, after hearing you, guys. No, my son was
definitely very, very wobbily. He loved going to playgrounds and
could never really quite navigate. Then he would have needed
a playground. It was more for a new, wobbily, you know,
one year old, this fight being almost three, so a
little proud, if I may. My husband and I started
(21:55):
the foundation. It's called Noah's Perfect Playground, and we're working
with the the parks and rec in Queen An's County
where we live to help overhaul and an existing playground
to make it more inclusive for everyone at all, but
to include a smaller playground. A lot of times outdoor
equipment aren't geared for younger kids. You have to be,
you know too for it to really be safe for
you to navigate. So we're working to make that change
(22:17):
for notice Perfect Playground so that we can we can
help make the playground be a little more inclusive for
everybody in our especially all lobbily lobbly friends.
Speaker 1 (22:25):
You know what, good for you, Good for you and
your your husband for taking that underway.
Speaker 2 (22:29):
Hey, I do I appreciate the phone call. Thank you, ma'am.
Was it Friday afternoon when the Billy Joel news came out? Yes,
that he's got normal pressure hydro cephalis. I think I'm
saying that right, didn't they say for a lot of people,
it's really underdiagnosed because a lot of people just chalk
(00:21):
it up to and you don't have to be old
to have it, But more people that get it are older,
but they just chalk it up to it's just part
of aging or some of the issues that come with
NP and p h.
Speaker 2 (00:36):
Am I saying that right? Yeah?
Speaker 1 (00:38):
Are just again they just get chalked up to a normal,
regular part of.
Speaker 3 (00:45):
The deterioration of your hearing and your vision and your balance.
Speaker 4 (00:48):
Right, right?
Speaker 1 (00:48):
So what part what part of it was from Billy
Joel was where they oh, because he had fallen?
Speaker 3 (00:54):
Well, what's that clip they kept showing of him on
stage where he was Did he toss the mic stand
or something and he.
Speaker 4 (01:00):
Fell or this is in February? Kenneticut, Yeah, yeah, he
just I mean he fell. Was this the first sign
of something being wrong? Or had he fallen behind the scenes.
Speaker 1 (01:10):
Could have been the first sign, right, I would think not.
I think it was the first real public one.
Speaker 2 (01:17):
Yea of him going.
Speaker 4 (01:21):
And they say it comes out of the blue. Other
than maybe aging.
Speaker 2 (01:26):
They said he has problems with hearing, vision and balance.
What is the is it?
Speaker 1 (01:35):
I don't want to say common because common makes it
sound like everybody has it. But do a lot of
people have it and just don't know? Well, I mean,
especially as you get older. That part I get.
Speaker 4 (01:50):
Says the prevalence if you're over eighty is six percent.
Speaker 2 (01:55):
Oh that's it.
Speaker 4 (01:58):
And it's less than one between your seventies.
Speaker 2 (02:02):
Oh so it's really not that prevalent.
Speaker 1 (02:05):
Didn't they say for younger people you can get it
reversed or treated through surgery.
Speaker 4 (02:11):
Like draining, like actual.
Speaker 2 (02:13):
I don't know if it's draining.
Speaker 1 (02:14):
I mean, it has to be right because all you're
trying to do is limitluid, the fluid on the brain.
Speaker 4 (02:23):
So is he having surgery for it?
Speaker 2 (02:24):
I don't think so, I don't think because it's too old.
Speaker 1 (02:28):
That's the way that I was reading it is that
for younger people who get it, and I when they
say younger, I don't know what they mean by that.
Speaker 2 (02:35):
I don't know if it's like.
Speaker 1 (02:38):
In rare cases you get somebody who's young who has
it well, I mean, we've heard of people who have
hydrosyphallus before, whre's water on the brain.
Speaker 2 (02:47):
But I don't know if it's the same as this.
Speaker 1 (02:51):
But they they did say that for younger people, they'll
go in and they'll do surgery. But I don't know
what they classify as younger people, Like the people in
their thirties get it, people learn in their twenties and thirties,
get it, I would assume, or is that a whole
different kinds of sophaalis Kristin?
Speaker 4 (03:07):
Well, normal pressure honestly sounds good. What is it when
it's not normal pressure? What is it called then?
Speaker 2 (03:15):
Not normal? I have no idea. I have no idea.
Speaker 1 (03:20):
Christian, will you find me somebody who had maybe a
grandparent or a parent who had it or they would
even know? And they said in so many cases, like
if it's somebody who's older, Like let's say it's a grandparent, right,
If it's somebody who's older and they just seem like
they've lost their balance, they've lost some of their vision,
you may not even think to have that looked at.
(03:42):
You might just think it's part of the aging process,
and like, well, of course they're older.
Speaker 4 (03:46):
Their vision is shot. But when it's someone they're unsteady.
When it's someone younger, is it usually tied to some
sort of head trauma. So you know they've they bonked
their head, he took a shot or a blow to
the skull.
Speaker 1 (04:04):
See, I was going to go the other way that
the way that you would know they're younger is that
they're falling, Not that the fault caused it, but they
were falling a lot.
Speaker 4 (04:14):
That could definitely be a symptom. But since they say
it comes out of the blue when you're older, there's no, no,
I have no idea.
Speaker 2 (04:19):
What would cause it if you were younger? I have
no idea.
Speaker 3 (04:23):
But it can be reversible if it's diagnosed and treated early.
Speaker 2 (04:27):
Right, But what is early?
Speaker 1 (04:29):
Like I thought I had read about Billy Joel, he's
not getting surgery.
Speaker 2 (04:33):
And you see his you know his I don't know
how you treat it.
Speaker 3 (04:37):
Christie Brinkley comes out, and then his daughter Alexa Ray
is saying, you know, he is entirely committed to making
a full recovery. So that gives you a sense or
a little hope, right.
Speaker 1 (04:47):
Yeah, but I don't know what is what is the
treatment for somebody who's who's older.
Speaker 2 (04:52):
Billy Joel is an older guy.
Speaker 4 (04:56):
The fluid tends to take up a little more space
in older adults because main volume shrinks as a normal
part of the aging process. But what happens in n
p H is an abnormal built up of fluid that
causes the brain to disfunction. Patients are often thought to
(05:19):
be developing dementia, which would make sense with some of
the also bladder control issues and trouble lifting their feet.
Oh I think I have audio of that.
Speaker 1 (05:34):
But but that could be that could be Go ahead,
go ahead, pull it up through every single one.
Speaker 2 (05:41):
No, but no, no, but but bladder, Okay, but bladder.
Speaker 4 (05:49):
Stop talking for a second. Don't look at the front
of your cargo. Shorts the.
Speaker 2 (05:59):
Balance and like that. That could be a normal sign
of aging. There, I am.
Speaker 4 (06:08):
So yeah, they would They wouldn't know, it, says the
hallmark symptoms go along with this catchphrase wet, wobbly, and weird.
Speaker 5 (06:18):
That's mean myrtle. So wait, it's wet, wobbly and weird.
Speaker 1 (06:29):
Yeah, oh that's a shirt.
Speaker 2 (06:34):
That's good.
Speaker 1 (06:34):
Okay, So wobbly is a valid balance, right, Wet is
your pissing yourself?
Speaker 4 (06:40):
Well, they call it urinarian continents.
Speaker 2 (06:41):
Right, that's called pissing yourself weird. I don't know, Bill,
he's just acting weird.
Speaker 4 (06:46):
I don't know, like cognitive Yeah.
Speaker 2 (06:48):
Yeah, well but that, by the way, that's rude.
Speaker 1 (06:52):
That's rude. That should be the name of is messed up. Oh,
it's the wet, wobbly and weird tour. So it says
the key difference, it's.
Speaker 2 (07:08):
Billion Elton's wet, wobbly and weird tour.
Speaker 4 (07:11):
Elton may have had.
Speaker 3 (07:12):
To special guess Rod Stewart.
Speaker 4 (07:17):
Ah, he's kicking soccer balls right in your head, it says, uh. Commonly,
this makes it seem like at any age, neurosurgeons will
do the shunt that which is obviously to drain. Yes,
but isn't this where you doesn't it drain, It doesn't
sit here. But one of the cases where it's drained
into another part of the body.
Speaker 3 (07:39):
Yeah, they said, this goes into the aptomen Oh there
you go. Yeah, and it's just absorbed.
Speaker 2 (07:43):
Oh, so it doesn't make it so it doesn't make
you like have to piss.
Speaker 4 (07:47):
No.
Speaker 3 (07:47):
I think it just sort of absorbs into your body.
Then I mean ultimately you'll go pee, right.
Speaker 4 (07:51):
Okay, but it's not a not a bedpan or a bag. Right,
So he the what was from the statement that he's
undergoing physical therapy right, So that sounds it's like it's
just for his balance.
Speaker 2 (08:08):
Yeah, well that's good, that's good.
Speaker 4 (08:12):
You feel hard February.
Speaker 2 (08:14):
Yeah, no, he went down.
Speaker 4 (08:15):
At the second I saw the news. I felt bad
because I'd made a joke about it on social media.
Speaker 2 (08:18):
Oh, don't feel bad.
Speaker 1 (08:19):
It's no, it's not like you knew. You were like, oh,
there goes Billy. Joel probably has nph.
Speaker 4 (08:25):
Remember he was as an Instagram or snapped out. Remember,
but I had him reacting to an old Milburnaire's program
where we sang one of his songs news too.
Speaker 2 (08:37):
Actually, am I going to line one? Hi Elliet the morning?
Speaker 6 (08:44):
Hey, good morning.
Speaker 2 (08:45):
Hey, who's this?
Speaker 6 (08:47):
My name is Philip. How are you Philip?
Speaker 2 (08:49):
I am doing great? What can I do for you? Sir?
Speaker 6 (08:52):
Well, I'm in my forties and I've hydrocephalus, but it's
been brought on by concussions. I've hit my head a
sixteen time or so, two of them considered traumatic brain injuries.
Speaker 1 (09:02):
So is that so that kind of goes back to
what Tyler asked earlier. Can it be caused by trauma
to the brain?
Speaker 6 (09:11):
YEP, they're not sure. If I just produce too much
cerebral spinal fluid. I wake up in the morning with headaches.
It gets better as the day goes on, and by
night time I'm without pain. So I don't get too
much sleep because I don't really want to go to
sleep because I wake up everyone. Definitely, but it definitely
(09:35):
affects my balance. I don't know of any cognitive issues,
but maybe I'm not cognitive enough to understand.
Speaker 1 (09:42):
That, so can I Can I ask you this like
when when you say balance issues, like how how.
Speaker 6 (09:48):
Bad I will trip five or six times a day.
I'm young enough, I've never fallen, but everyone that works
with me or sees me is like, you almost fell,
and it's like, yeah, that happens.
Speaker 1 (10:03):
So it doesn't look like you know, like sometimes like
you like like if you're walking, you catch an edge
where like you're you're hard put.
Speaker 2 (10:11):
So that's that's what you're doing.
Speaker 6 (10:14):
Just just just just just small little missteps that you
that you think you know where your foot's going to
go and it misses by happid inch And.
Speaker 2 (10:22):
What is the what does the doctor say.
Speaker 6 (10:26):
I've been lucky enough to be able to go to Hopkins.
I went up to NAO. They said the shunt would work.
It absolutely does drain into the abdomen for me. They
specifically said they were concerned because they weren't positive it
would be one hundred percent effective. And every surgeon I
(10:47):
talked to said, uh, you have an eighty five or
ninety percent chance of this fixing it. But if we
do surgery to you and and and and change your body,
you're going to have life time effects, and so you
should probably just stick with pain management.
Speaker 1 (11:05):
So the so the the the effects of so let's
say you have an eighty five percent chance of it working,
the effects of their fifteen percent are pretty severe.
Speaker 6 (11:16):
I mean, it isn't it isn't that big of an issue.
But when you put a mechanical machine into your brain,
it needs to be maintained. If I get another head hit,
which apparently I have an opportunity to because I've had
enough of them before, something could go wrong with it.
And so from that it's just why would we take
(11:38):
the chance if we aren't certain it's going to work.
Speaker 2 (11:42):
Because it's so.
Speaker 6 (11:45):
Yeah, But on the other side, it's it's one hundred
percent chance it's going to need maintenance and issues going forward,
but we're not certain it's going to help you. I
don't know.
Speaker 2 (12:01):
I like that. I like that high.
Speaker 1 (12:02):
I mean, listen, I don't have it right, so it's
easy for me to just sit here and go, oh, well,
that's what I would do without even knowing.
Speaker 4 (12:09):
You also love surgery.
Speaker 2 (12:10):
The well, that is true. When was your last when
was it?
Speaker 6 (12:17):
Oh?
Speaker 2 (12:18):
Well, let me back up a step.
Speaker 1 (12:19):
So you you trip from time to time, and like
you said, cognitively, you don't know. You have no idea.
You think you're all right, but I mean you'd be
crazy the but you're not.
Speaker 2 (12:28):
You're not.
Speaker 1 (12:28):
You're not pissing yourself, are you?
Speaker 6 (12:31):
Nope?
Speaker 2 (12:31):
Good? Thank you?
Speaker 4 (12:36):
Weird?
Speaker 2 (12:37):
Oh have you heard that before? Have you heard of
our new T shirt, the wet wobbly weird?
Speaker 6 (12:42):
I have I have not heard the wet, certainly the wobbly.
I mean it's that that that that that. As far
as day to day walking, I'm that I that I
currently work as a server and so i'm i'm I'm
carrying plates and trays and drinks and constantly and every
now five ten times I'm a shift. I will take
a misstep and I'll stumble a little bit. But I
(13:04):
haven't dropped anything and broken it in yet.
Speaker 2 (13:06):
Oh thank god. I was just gonna says my guy.
It's my guy. Great, I got I got mph.
Speaker 6 (13:12):
Server But but but but but I would wager someone
who's a little older, who isn't as active, Yeah that
if you if you take a misstep and you can't recover,
Oh sure, yeah you then you break a hip.
Speaker 1 (13:27):
Sure no, but and I mean it may he thank you, sir,
thank you. But this makes sense why they would say
so many cases don't go reported. This may actually I mean, listen,
does it suck for Billy Joel?
Speaker 3 (13:39):
But yes, creating awareness absolutely anytime somebody famous comes down
with something absolutely.
Speaker 4 (13:45):
Ste I'm hearing from more ticket holders than I am,
people familiar with MPUs.
Speaker 1 (13:53):
So, I mean the tours off, all tours, a lot
of dates. Yeah, yeah, everything's canceled. Didn't they say things
were autumn being refunded.
Speaker 4 (14:01):
So there's no dates he left on the schedule.
Speaker 1 (14:03):
I thought everything was white clean, yeah, and now everything
was being done like obviously if you went through a
third part of your screwed. But like just your regular Ticketmaster,
whatever you bought your tickets through.
Speaker 2 (14:16):
That that was being automatically done.
Speaker 4 (14:18):
Now I do know that the Billy Joel tribute We
May Be Right still performed Saturday night at the Rehobot
Beach Bandstand.
Speaker 2 (14:26):
Excellent.
Speaker 4 (14:26):
I didn't see the show. I saw it on social
media because the kids wanted to swim at the hotel
rather than stick around for the show. It is worth
pointing out, just so everyone can be as sensitive as
need be. Some specialists are moving away from the weird
w so wet, wobbly and weird.
Speaker 2 (14:48):
Oh wait, can we guess you will?
Speaker 4 (14:50):
You know it's going to have to do with the
dementia like symptoms, the cognitive issues, and you can understand
that we want it's not what but that wet?
Speaker 2 (15:01):
What that weird?
Speaker 4 (15:04):
It's like it's it's means sounding.
Speaker 2 (15:08):
Yeah, so is wobbley.
Speaker 4 (15:10):
No wobbley. If you are actually stumbling and having balance issues,
you are wobbley. But calling someone weird is it's rude?
Speaker 3 (15:18):
Wonky no.
Speaker 2 (15:21):
Wa, that's my favorite.
Speaker 4 (15:28):
Whoa, No, that's wobbley. You're falling. They're sticking with wet.
They we they found no probably yeah.
Speaker 1 (15:37):
No, that that's that's fine, that's fine, that's funny, that's fine.
Speaker 2 (15:40):
We can go with that.
Speaker 1 (15:41):
So wet, wet, wobbley and wacky.
Speaker 2 (15:45):
No, that's wacky.
Speaker 3 (15:47):
Is like way.
Speaker 2 (15:49):
Look at my shirts? Look at my shirt?
Speaker 1 (15:51):
Well it's probably covered in.
Speaker 3 (15:54):
Wet wobbly in cash?
Speaker 2 (15:59):
Am I going on the line three?
Speaker 1 (16:00):
I could do that warm season Diane, Hi elliot in
the morning.
Speaker 7 (16:07):
Hey is this me?
Speaker 6 (16:08):
Yeah?
Speaker 1 (16:08):
Hi?
Speaker 2 (16:09):
Who's this Hi?
Speaker 7 (16:10):
My name is Rebecca on Gong from the Eastern Shore
in Maryland. Yes, ma'am, we said, you guys talking about hydrocephalus.
My son was actually born with hydrocephalus in twenty twenty one.
Speaker 2 (16:20):
Now can I can I ask you this? Is it?
Speaker 6 (16:22):
Is?
Speaker 2 (16:23):
Is that different than nph?
Speaker 1 (16:27):
And I don't mean like in case of like where
it comes on older, but like I've definitely heard the
term of somebody being hydrocephallic before?
Speaker 2 (16:35):
Which is which is water on the brain? Is it?
Speaker 7 (16:38):
Is it?
Speaker 2 (16:39):
Is it what your what your son has? Is that
different than what Billy Joel has?
Speaker 7 (16:44):
Or is it my son? My son did have high pressure,
so he did have to get a shun. There was
you know, no other no other treatment option. He wouldn't
survive without a shun right to help during the fluid
and didn't.
Speaker 2 (16:59):
I read that?
Speaker 1 (17:00):
And maybe it's different when when you're talking about like
what what Billy Joel has versus what your son was
was born with. But the the advancements that they've made
in doing that type of surgery, because they are I mean,
look where you're going in right, you're going into the head.
Speaker 2 (17:16):
That the advancements they've made.
Speaker 1 (17:18):
In that type of surgery are are I don't know,
fivefold or but the things are so much better now
than they were even a handful of years ago.
Speaker 7 (17:29):
So they are, but still to this day, fifty percent
of pediatric shunts will ship will sale within the first
two years. My son actually had four brain surgeries in
the first three months that he was born, and last
May he went into shunt failure and from complications. He
did actually pass away on the thirty first of last year,
just before his third birthday. So they have made advancements,
(17:52):
but still, you know, so it is you know, unfortunate
that Billy Joel has has developed this. But anytime I think,
as Diane mentioned that about a celebrity can kind of
shed light on hydrocephalis, we can bring more awareness because
you know, sure they've made advancements, but in twenty twenty four,
twenty twenty five, people are still dying some hydrocephalis. So
it's important to continue sharing about it and spreading awareness
(18:16):
so that we can we can make better technology. Like
you know, there's no real technology that will let you
know when when someone who's in a shut failure. These days,
we've got smart houses, you smart terror you smartphones, smart watches,
but we don't have a smart shunt for hydrocephalis, and
so we're we're hoping and working towards that.
Speaker 1 (18:33):
Can I can I ask you two questions if you
don't mind, so the like when you you mentioned like
shunt failure right and that there's not like a smart shunt,
and I understand what you mean. And the number that
really shocked me is when you said, what did you say?
Fifty percent of them will will fail?
Speaker 2 (18:51):
How how do you know?
Speaker 1 (18:53):
How how does somebody know that they've entered shunt failure?
Speaker 7 (18:58):
Sure, different symce them. It can be very mild to
very drastic. You can someone can just have a headache
and that can be the beginning of shunt failure. And
when it's a younger person. They can't necessarily articulate that
to you, or you could essentially go into a coma
and then it's you know, it's certainly much more clear
from my phone. He actually it was a year ago
(19:19):
today when he first past sick, and he just wasn't
wasn't feeling very well. He was not quite three, about
a month away from his third birthday, and so we
just thought he had a tommy bug and and unfortunately
did the watch and wait, and the next morning on
the on the way to the hospital, he aspirated and
unfortunately did not did not survive all of that. So
(19:40):
his symptoms were very mild. You know, they say you
can be projectile vomiting, which he was certainly not doing,
eyes rolling back in the head, being in a coma,
and that it can assoul be very mild. So if
we had technology that would immediately alert to you that
something's not quite working, it's not during you one hundred percent,
that would that would definitely be very benefit. Sure are
(20:00):
they the younger kids.
Speaker 1 (20:02):
I feel like the answer is yes, But I'm assuming
that there is a ton of work in that field
right now to create a smart shunt.
Speaker 7 (20:12):
Sure, yep, I do understand from members are great, a
great organization, Hydrocephalis Awareness, and they they they are in
the work trying to trying to get that to happen.
There are definitely things moving behind the scenes. But you know,
this is forth takes a lot of research. Research takes
a lot of funding, so or you know, always partnering
and participating in walks. There's a walk in Baltimore and
(20:32):
Acturber for Hydrocephalis to spread awareness and get that additional
funding so that we can get that across the finish line.
Speaker 1 (20:40):
And then last last thing, if you if you don't mind,
like at at such a young age, how did how
did you know.
Speaker 7 (20:48):
There you have hydrocephalus? So they actually found out when
I was pregnant. When we when at you know, the
halfway mark for the whole anatomy span and everything, they
determined that the ventures in his brain were enlarged and
so we had to do a f MRI which determined
that he would have hydrocephalus. But when he was four
years old is when he had that first surgery took place.
Speaker 2 (21:06):
The first shend I gotcha, I gotcha.
Speaker 1 (21:09):
Well listen, I obviously I hate the story, but I'm
done I'm very happy that you called.
Speaker 6 (21:15):
Yeah.
Speaker 7 (21:16):
Yeah, well, and I want to say two quick things,
if I may. So wobbily is definitely a good description.
I would say wet, wobbily and wonderful. Let's take out
the weirder rackney and call it webbily and wonderful.
Speaker 2 (21:27):
Wait, have you have you really thought about what like?
Did you really take that into account?
Speaker 6 (21:34):
Yeah?
Speaker 7 (21:35):
Which, no, just now after hearing you, okay, all right,
that's wonderful, after hearing you, guys. No, my son was
definitely very, very wobbily. He loved going to playgrounds and
could never really quite navigate. Then he would have needed
a playground. It was more for a new, wobbily, you know,
one year old, this fight being almost three, so a
little proud, if I may. My husband and I started
(21:55):
the foundation. It's called Noah's Perfect Playground, and we're working
with the the parks and rec in Queen An's County
where we live to help overhaul and an existing playground
to make it more inclusive for everyone at all, but
to include a smaller playground. A lot of times outdoor
equipment aren't geared for younger kids. You have to be,
you know too for it to really be safe for
you to navigate. So we're working to make that change
(22:17):
for notice Perfect Playground so that we can we can
help make the playground be a little more inclusive for
everybody in our especially all lobbily lobbly friends.
Speaker 1 (22:25):
You know what, good for you, Good for you and
your your husband for taking that underway.
Speaker 2 (22:29):
Hey, I do I appreciate the phone call. Thank you, ma'am.
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