July 14, 2026 • 50 mins
Writer and Peyronie’s disease advocate Don Cummings joins Dr. Mills to share the deeply personal—and often surprisingly funny—story behind his memoir, Bent But Not Broken. Don recounts the fear, guilt and depression he experienced after developing Peyronie’s at age 48, as well as the long treatment journey that ultimately restored his sexual function. He also explains how support from his husband, family, friends and fellow patients helped him cope with the condition’s emotional toll. Together, they offer an honest and hopeful reminder that Peyronie’s disease does not have to mean the end of intimacy, identity or a fulfilling sex life.
See omnystudio.com/listener for privacy information.
Listen
Watch
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Let's talk about it.
Speaker 2 (00:03):
Let's talk about the man.
Speaker 3 (00:05):
Hero.
Speaker 1 (00:08):
Let's talk about it. Let's talk about the man Hero.
Speaker 3 (00:17):
Welcome to the man, Welcome back to the mail room, everybody.
This is doctor Jesse Mills again here has always joined
with Jordan run Top, my producer extraordinaire, man.
Speaker 4 (00:27):
Of the people, and uh so good to have you back, Jordan.
Speaker 3 (00:31):
We are rolling through our gosh four part series or
so on Pironi's disease. We've looked at history, We've looked
at early treatments, we've looked at FDA proved treatments, we
looked at surgery. But I don't think there's a better
way to talk about a condition without actually bringing in
somebody that has suffered, is suffering from, or has experienced
(00:53):
the tradition the condition rather firsthand, because you know, as
a physician and I treat thousands of guys with this,
what I tell guys is not necessarily what I am
personally living, obviously, And so with that I bring in
our own in house celebrity. Don Cummings, who is an author,
an essayist, a screenwriter, a playwright, a musician, is the
(01:18):
multi multi poly He also was on Dharma greg I
didn't know this about you, Don, But acting also has
a Hollywood bend. We lives out here with his husband
and his poodle, which I also have two poodles, so
we got to talk about that. But Don and I
have known each other for a number of years. The
reason we got into each other's company is because he
(01:39):
wrote a book called Bent but Not Broken, which was
a memoir on Perone's But the brilliant thing about this
book is I encourage everybody that has Pironi's as a lover,
a friend, a family member that has is to get
this because, as we're going to find out, this guy
is hilarious and he takes something that is so traumatic
that we've spent a lot of serious time talking about
(02:00):
the psychological, emotionally devastating manifestations at Pronie's disease. But somehow
he figured out how to make it funny. And I
don't know how he does it. So we're going to
unpack and unlock his brain. Don, I'm going to stop
talking because I'm just so excited that.
Speaker 4 (02:13):
You're in the mailroom. Welcome.
Speaker 3 (02:15):
It's so good to see you again, my friend, especially
after surviving the Altadena fires and the trauma you went
through with that, and I know that you know, be
from the Palisades. We had both ends of the city
burning not that many months ago. So thanks for coming back,
and thanks for taking the time to talk to our
audience in the mail room.
Speaker 2 (02:33):
Welcome, welcome, thank you.
Speaker 1 (02:36):
I'm glad to be here. I'm glad to be of
service in any way that I can to people who
are going through Paroni's disease or or fires for that matter.
That's right, I guess today today, but today our subject
is Pernie's disease. So I having been through it, I'm
glad to talk to people about it and tell them,
you know, how they're going to be okay, probably.
Speaker 3 (02:58):
Yes, I love it. Look at this, he's got the
tag lar already. Just you opened with the closer. That's
good writing right there. Yeah.
Speaker 2 (03:07):
But yeah, it's so important. I mean, and I think
the way that.
Speaker 3 (03:10):
Jordan and I were sort of talking about how he
wanted to talk with you about this, because this is
such an important opportunity for listeners to hear from somebody
that has gone through it, has went through it, has
been through it, knows a lot about it, and actually
wrote about it.
Speaker 4 (03:23):
So read the book.
Speaker 3 (03:24):
But Meanwhile, let's spend the next a little while in
the mailroom talking about.
Speaker 4 (03:28):
The origin story.
Speaker 3 (03:30):
And I'm going to start with a question that's a
little bit backwards as well. I'm going to ask what
the twenty year old twenty five year old? Because this
happened to you in college, So you were what in
your early twenties or so?
Speaker 1 (03:43):
No, no, no, no, no, no, I was forty eight.
Speaker 3 (03:45):
Oh forty eight, okay, because you had this whole part
about you know, what you were doing in school.
Speaker 4 (03:49):
Yeah, that's right when you were I.
Speaker 1 (03:50):
Think, yeah, yeah, what you're remembering is so the book
has written the idea is like, you know, you're you're young,
and you're vital, and I was fortunate to that's right,
come from a place where sex was readily available, so
you know, being you know, safe sex and all that.
But I was young and willing, and so there's a
(04:12):
lot in the book that starts with this. It doesn't
start with it, but it gets interweaved, you know, throughout
the book about what it was like to be you know, young, hot,
having sex all the time, and very much feeling that
was a part of my identity and it was really
fun and you know, no one got hurt and for
(04:33):
the most part, no, I mean basically it was it
was really wonderful to be in that stage of life.
And then you know, you get into middle age and
you're not having as much sex, probably because you're busy
doing other things. But uh yeah, but I was really slammed.
And I was forty eight is when it happened. And
I think I probably told you, well, it's in the book,
and I probably told you too. I was a I
(04:55):
was a biology major in college. Even I did a
lot of theater too. I was a writer about I
just did too many things. But I was interested in
a lot of stuff. So I was a biology major.
And I was not only a biology major, but I
was a pre medical student at Tufts University in Boston,
and I knew a lot and I have, like I
have a nephew medical school. My mother worked in a
(05:15):
doctor's office. My sister's a hospital administrator, so I had
a lot of medicine stuff around me in my life.
As soon as I started seeing this curve of my penis,
I have Prony's disease, Like I just kind of knew.
And this was way before even the commercials were on TV.
I just kind of knew of on the list of
all the horrors that could happen to you in life,
(05:36):
and so it was a quick self diagnosed. So anyway,
I was forty eight when it happened. Yeah, and it
was you know, at the time, it was even though
I wasn't, you know, a kid, it was still forty
eight is young, you know to start thinking at least
I started thinking like, oh, okay, so my sex life
is over. Huh, you know, And that was really quite
(05:59):
maybe too severe a reaction for me to think that way.
But my mind went.
Speaker 4 (06:05):
There to begin with catastrophized.
Speaker 1 (06:07):
Yeah, I catastrophized for sure.
Speaker 4 (06:09):
And that was the question that yeah, I was.
Speaker 3 (06:10):
I was going to ask, Don is the what what
does what did you wish you knew when you were
forty eight and this happened? Because it sounds like you're right,
prone's is a diagnosis guys almost always make before they
There's nothing about my diagnostic acumen that allows me to
to say, oh, yeah, you have Broni's I mean, uh,
especially now with the ben Carrot commercials. You're right, but
(06:31):
but yeah, talk to me about what you wish you
knew at the beginning of this journey that you know.
Speaker 1 (06:35):
Now, I wish I knew z eye flex was going
to do the trick for me, because it did when
I came to see you.
Speaker 4 (06:41):
Yeah, I hippo violation, Yeah yeah, yeah.
Speaker 1 (06:46):
Yeah yeah yeah. Well I mean I can I can
self expose, right, I mean obviously yes, you can't know absolutely, Okay,
So I wish I knew that there was something that
was actually going to reduce the scar tissue because see
when I when I first had Prony's disease, the the
treatment at the time was verapamil and saline combo where
(07:10):
you injected the plaque with basically saline and verrap mill is.
You know, it is a blood pressure medication, but they
kind of mix it with saline and somehow this helped
loosen up this scar tissue a little. But I think
the way that worked, or it seemed to work, was,
as I explained to explain it in my book, is
you know they try to turn cheddar into Swiss. Yes,
(07:32):
so it's just like this sort of making lots and
lots and lots of holes and this plaque so it
kind of can expand, and that that worked, okay, you know,
but it didn't really do the full trick at the time.
So I wish I had known that something was coming
down the pike, and I heard of I heard of
what was coming down the pike. But I thought, well,
(07:53):
all right, Well I went to my doctor, I did
my deal. We were living in New York at the time,
and so that happened in the first few years, and
I didn't see you till many years after that.
Speaker 3 (08:04):
Actually, that's right, yeah, I mean, you know the clinical
trials we talked about zye flix in the past, and
that you know, really they did back to the early
two thousands, and actually the real history goes back even
to the nineteen eighties, and so there was a rumor
of this medication for so long before the FDA actually
approved it, And so you're right. I mean, guys like
(08:24):
you that had it, it must have been tantalizing. And
I remember seeing patients in my office saying, you know,
I want to be in the trial or when can
I start this and having to wait for that FDA approval.
Speaker 4 (08:35):
And so yeah, so talk me through this.
Speaker 3 (08:37):
So forty eight you wake up one day with the
band you had a trauma. Walk us through this, because
I think we always talk about the presentation of what
this looks like to a guy. And I always try
to disassociate the guilt factor of like you did something
wrong to your penis and did you go through any
of those things?
Speaker 4 (08:54):
That's like four questions and once I.
Speaker 1 (08:55):
Know, sure, no, no. Absolutely. Strangely enough, when it first
started present it south, it was I'm sure other guys
who told you about this, you start having your erections
at night start being somewhat painful. Yeah, And I had
already at forty eight, my erections weren't quite as strong
as they were when I was twenty eight. So I
(09:16):
was actually, strangely at the time when that started happening, thinking, oh,
my erections are They're getting stronger, that's why they're hurting.
So at first at first I thought like yeah, so
I was like, yeah, here we go, man, you know. So,
you know, and then after about three weeks of that,
I started seeing the curve, you know. And I hoped,
(09:40):
of course at first that like, well, this will just
be a little bit, it'll be fine, but it just
got worse and worse, you know, So I don't what's
the next part of your questions? There were there were
a few.
Speaker 3 (09:49):
There, Yeah, yeah, I know, it's just essentially how quickly
did it develop? And then really the most important thing is,
yeah is it how much did you feel guilt because
of the Do you.
Speaker 4 (10:00):
Think you did something wrong?
Speaker 1 (10:02):
I see, I see. Yeah, okay, so the guilt. So
the short answer for the development was I would say
within three weeks I was went from painful night time
directions to a curve. It was pretty fast and I
knew what it was. So but as far as the
guild goes, yeah I did. I was afraid that I
had sex a little bit too hard with someone, and
(10:24):
the truth is that someone was not who I was
married to. So so the guild came in. Now where
we're older now and this doesn't quite happen anymore, but
you know, we're a gay couple. When we were younger,
there was an understanding. It didn't happen frequently, but if
you were out of town and you needed to take
care of business, you could. So it was one of
(10:45):
those situations, and I was with someone who wanted sex
to be a little harder than I'm used to. I'm
quite vanilla kind of sex guy. There's not much. I'm
not a kink guy or anything, but there was someone
who wanted things to be a little rougher than I
would want to do, and I said, oh, okay, and
I was I was a top, as they say in
(11:09):
the gay world. So I was the inserter, and I
was just doing things, just slamming a little harder than
I usually would do. Yeah, And then I thought, oh,
did that do it? Was? Was that why this happened?
Because that sexual encounter happened maybe maybe six or six
or seven months before I started showing Berni's disease. And
(11:31):
then I just started thinking about, well, it was really
that I didn't have other I didn't have other thoughts
of other sexual activities that I had that would have
caused it. But it made me also start thinking, like,
I know myself and I am someone who has this
thinking that I can control things more than I can.
(11:52):
So I was able to say to myself, well done,
You're you might be beating your You might be beating
yourself up when you don't need to. So I went
back and forth. So at times I thought, well, you're
beating yourself up and you don't need to to, Like, oh,
if I had only not gone down the street to
to to this this attractive man who wanted this certain
(12:12):
kind of sex, and if I wasn't such a people pleaser,
like it's like, oh, oh you want to like this,
Sure I'll do it.
Speaker 3 (12:19):
You know, it's like you're victim shaming your own penis exactly.
Speaker 1 (12:25):
No, I mean it was. It was so funny.
Speaker 4 (12:27):
It was.
Speaker 1 (12:27):
It was and I remember, and you know, just as
an aside to that sexual activity, I remember doing it,
and like, I don't know if you ever do something
like I don't know, go to six Flags or something,
something you really aren't that interested in doing, and you're
going through the motions and parties like looking at going
like this isn't really me. I don't even want to
be here, and you're just kind of doing it. And
it's almost like I always had a smirk on when
(12:48):
I was just like Okay, well this guy wants this,
and I'll just do it. But yeah, but I went
back and forth. So it was and and but I
don't let go of things easily, so I went back
back and forth for a long time. I went back
and forth for easily a couple of years. So it
wasn't like something I processed swiftly. And then but I'm
(13:09):
you know, it depends on your personality. I'm someone who
I do change, which is great. I'm happy for that.
But I'm not a fast changer. I'm not a fast learner,
you know so, but I do get there.
Speaker 3 (13:43):
Your story is very similar, as we talked about a
couple of episodes ago about the when Perni described Pirnie's disease.
It was a case report of a guy that stepped
out on his wife in eighteenth century France and came
back with a curvature. And Perni's like, well, that's why
it happened. You're unfaithful, You had a crazy encounter, and
(14:03):
you know, sort of like back of the carriage sex
or something like that. I think they had carriages in
seventy and eighteenth century France. It wasn't exactly an nineteen
eighty one Camaro or something, and that's what set it off.
And there's probably an aerial disease and all kinds of things,
and so you sort of process that quickly. And what
I always like to tell guys, and we probably talked
about this, you know, unless you had a sexual encounter
(14:25):
where your penis was black and blue and swelled up
to an egg plant, you probably didn't do anything to
hurt your penis, and the penis is so able to
handle all kinds of crazy things, vanilla kink and everything
in between. And so you know, I always try to
disavow guys that you did anything wrong. And one thing
you brought up, which I think is important just from
a medical standpoint, though, is that you were in because
(14:48):
you were in your forties and your erections may not
have been as strong. Is that we do think that
that maybe that little micro trauma when you start to
not get as strong of an erection, that maybe you
have a little more flex injury within her, and then
that leads to the perronis. But I've had a lot
of guys in my practice that don't engage in really
any kind of penetrative intercourse that still get pirronis, and
(15:10):
so so I don't even think the flex injury necessarily
holds a lot of water.
Speaker 4 (15:15):
I think this is something that just happens.
Speaker 3 (15:17):
And as we probably talked to me, and you have
a genetic predisposition, and here you are, and it's common,
you know, I mean ten percent plus guys have this
and it gets more common every year that we have
more and more disease state awareness about it. So Okay,
So basically you would tell yourself, hey, I didn't do
anything wrong here it is, this is a hand i'med doubt.
Speaker 4 (15:36):
Now I got to go find somebody that's going to
fix this for me.
Speaker 1 (15:38):
Yeah, yeah, exactly exactly right. And you said the genetic component.
You know, my my paternal grandfather had I cant pronounce correctly,
deep in trends, deep in trends.
Speaker 4 (15:49):
Yeah, potrens.
Speaker 1 (15:50):
Yes, he had that.
Speaker 4 (15:51):
Another French guy.
Speaker 1 (15:52):
Yeah, no, yeah, he had that. Really his ring finger
on his right hand was like, you know, like that,
that's right, and he used to joke that it was
from an injury in World War One, you know.
Speaker 4 (16:02):
But yeah, yeah, yes.
Speaker 3 (16:04):
So I had a guy years ago I took care of,
Actually was not I didn't take care of.
Speaker 4 (16:09):
He was.
Speaker 3 (16:09):
He was one of my rips, and he had the
Putrin's and he had the exact same treatment. He had
zyaflex for his hands so that he could get hand
function back. And he was the first guy that had
a positive experience from xio flix. And he came into
my office saying, as a single man, Doctor Mills, I
finally got my sex life back because his hands started working.
Speaker 5 (16:30):
I have it.
Speaker 1 (16:30):
I have it a little bit on this right hand.
Ye say it right?
Speaker 4 (16:34):
You have a pucker.
Speaker 1 (16:35):
Yeah, but it hasn't It's been that way for eight
years and hasn't changed. And I did go to a
hand sergeant and he said, can you lay your hand flat?
I said, no problem. He said, we get out of here,
so perfect.
Speaker 3 (16:47):
Yeah, that's right. And you can't lay your penis flat.
So now you can probably lay when your penis is flat.
Speaker 4 (16:55):
With this.
Speaker 2 (16:55):
You're the guy with the jokes. Don help us out here.
Speaker 4 (16:58):
Oh my god.
Speaker 1 (16:59):
You know it is funny, you know it is. It's
funny to someone I was in college. I mean, people
just say, yeah, you should be a stun a comedian.
The problem with that was that I'm funnier when I'm
alone writing.
Speaker 2 (17:09):
Than I am.
Speaker 4 (17:11):
I am not, I am not.
Speaker 1 (17:12):
I'm not really like an improv guy. I was always
amazed that these people can just get up and and
and and be really funny in the moment and stuff.
I'm more of a studied kind of guy, which is
you know, but any event that's like, that's that's my humor.
Speaker 3 (17:26):
The worst thing you do with the stand up is
to say, tell me a joke, shut him down, Promise
I won't do that to you as we as we
go through this. Yeah, so so talk to me about
your support mechanisms. You know when you're going through this.
Is this a disease that you suffered alone or is
it something you know you had support for, And just
(17:47):
walk me through. You know who was there for you,
was in your corner.
Speaker 1 (17:50):
Well, you know, I don't think we're officially married yet,
but we've been together. We were alreadgether many years. My
husband Adam, who was fantastic through the whole thing and
was right there with me from the beginning. And then
I'm not a shy guy, so we were in I
just said, we're in New York at the time. I
have a lot of friends, and I just would talk
(18:10):
to a lot of my friends about it, and also
my family, my parents. My parents were very much My
parents were both passed now, but they were alive at
the time, and and I talked to them and they
were really wonderful about it. A matter of fact, we
were up I told him about it. We were up
in Lenox, Massachusetts, just like you know, walking around having
(18:31):
some meals and having a weekend, and it was and
I told him about it. I remember that really is
the Lions something that that that really nice place in Lenox. Anyway,
we were at a really nice hotel and having lunch
and I was telling them about it and they were,
you know, super supportive. I'm very lucky that my parents
were that way. And then, of course the doctor I
(18:54):
saw in New York am I allowed to say his name?
Of course, Yeah, yeah, doctor Mahall is his name. He
was at Sloan Kettering. He was Yeah, he was fantastic.
I mean, he was super super helpful back and he
was the one, you know who told me that Zye
Flex was coming and I was like, okay when but
uh yeah, so I was. I was fortunate and and
(19:16):
interestingly so I was in a writer's group in Brooklyn
at the time, and then all the writers in the
writers group became supportive because I actually began to write
Bemp and Up Broken. It's really more like a just
a simple book about, you know, helping people get through
Perni's disease. I was just taking the notes on my
(19:37):
treatments and I was going to put out this kind
of dry pamphlet. But when I started telling stories about
the human element of it and the the the horrors
of I mean the the mostly my comedic descriptions in
the book are like of what my penis looked like.
You know, I went from you know, rocket to mouse
to you know, curve to upside down candy cane. My
(19:59):
penis kept change shapes. It was all over the place.
So every a few months it was like somewhere else.
And just when I thought just what I thought, it
couldn't be any worse, it got smaller and thinner and
more bent. You know. It was just wouldn't end. But
again my writing group that they you know, and I
would talk about how it was affecting me personally. They said, well,
you need to write, you need to write about all this,
(20:20):
the whole experience. You need to write about, yeah, the
penis and helping others, but like how you're going through
it emotionally. So that group was very supportive. So I
was quite out there with it, like I now because
I was quite out there with it. And I also
have a Facebook group called Prony's Disease Support that a
lot of people join us, about two thousand guys on
it now. And also when you know people who are
(20:41):
in a relationship with people who have pronus disease, so
people are, you know, have always been coming at me
ever since this, and I'm I'm glad I was quite
out there and I wasn't. I wasn't embarrassed by I
don't know why. I wasn't embarrassed. I don't know why,
but I wasn't because I think it's my biology background.
I was like, well, this is just like I'm an animal.
(21:02):
I got this animal thing happening to me, and I'm
just gonna say, oh, you know, I had some bad
luck and so I was fortunate that so many people
were in my corner. But I will give myself a
small pat in the back saying this was in many
ways due to the fact that my personality is such
(21:24):
that I'm a bit of a yaky open guy, and
that was helpful. So my point being a lot of
guys coming at me. Most men who talk on the
Facebook site or reach me privately, believe me, they're not
doing what I did. Like most guys are not out
there with a book or a billboard or a you know,
(21:45):
a T shirt or making jokes about it because it's
or a podcast cook They're rightfully upset, you know, as
was I very much. But I don't know I'm not
comfortable things inside, they get extra I feel like I
get extra upset more than others. Like I think these
(22:06):
Taska turn types maybe they just I don't know, they
have those personalities and they can do that. I'm not
built that way.
Speaker 4 (22:13):
So I was going to ask about anger.
Speaker 3 (22:16):
You know, how does how did anger fit into your
stages of acceptance?
Speaker 1 (22:20):
I had no anger? No, yeah, strangely no, no, I had.
I had depression, that's for sure. I had at times.
I have this thing that happened to me. So I'm
forty eight on, I'm forty nine, and I'm thinking, well,
I'm getting into my Yoda years. I'm like, I'm becoming
an old man before my time, and I'm going to
(22:43):
be one of these guys who's sort of on the
outside of things, being a sage. And I thought, well,
I tried to sort of get into this weird you know,
I'm believing me I'm not that spiritual. I try to
get to this spiritual idea of like I'm going to
be like post sex. I'm going to be like this
guy who who has this aura, you know, be a
tific way about him, who sits on a lawn chair
(23:06):
and just dispenses wisdom and you don't have to worry
about him like being a horn dog, because that is over,
you know.
Speaker 4 (23:14):
Meta.
Speaker 1 (23:15):
Yeah, And I started tried to I tried to see
myself that way.
Speaker 4 (23:20):
Now.
Speaker 1 (23:20):
The truth is, then as soon as there was an
inkling that I might get a little better, you know,
like the Yoda, I kicked to the curb.
Speaker 4 (23:26):
You know.
Speaker 1 (23:26):
I definitely definitely didn't want to be Yoda. But no,
I didn't. I didn't have anger, but there were there
were days where I was I will definitely say that
there was a joy of life that was sapped and
something I probably shouldn't leave out too. I started drinking,
oh yeah, a lot.
Speaker 5 (23:47):
Yeah.
Speaker 1 (23:47):
And I was never a big drinker. I actually don't
drink it all now for other reasons. But I just
started drinking a lot. And drinking is depressing, right, I
mean it's a known depressant alcohol. So that wasn't good.
And then I and I stopped that too. I was like, uh,
you know, now, am I drinkings like if I got
to France or if it's a wedding, But I'm not.
(24:08):
I was one of those college kids. I didn't drink.
I just I wasn't that interested in it. You know,
I don't know why never agree with me. Actually, my
my mother and my sister don't drink it really bothers
our systems. I think it's like, I don't know. I
think for me, it's been inflammatory. It doesn't work well
in my system. But anyway, I was drinking a lot
and it was bad, and uh, and that's you know,
I was trying to escape these feelings of loss. Really,
(24:32):
I think I think what I was feeling mostly was
grief and loss is what I really was feeling at
the ripe old age of forty eight. And so I'm
half Irish, so I grabbed the bottle.
Speaker 4 (24:46):
He poured one out, poured out your penis. Yeah, I mean.
Speaker 3 (24:50):
I think that's what you brought up is interesting in
that you're, yeah, you're kind of mourning what you know,
what your penis used to be. And also you sort
of became very stoic very quickly and became well, I
had a good run. Now I'm just going to sit
back and watch everybody else do this at forty eight.
That's that's not a good run. That's you know, that's
a career cut very short. So not to use that
(25:13):
pun I think we'll but but yeah, it's a career
cut short, right, So so then tell me about the
redemption arc.
Speaker 4 (25:20):
Then.
Speaker 3 (25:20):
So you you're on the sidelines, your lightsaber is not
what it used to be, and you are thinking, wait
a minute, there might be somebody out there that can help,
and so you found doctor mohall. So we started this
with you're probably going to be okay, So we're going
to use you as you're probably.
Speaker 4 (25:37):
Going to be okay for this thing.
Speaker 3 (25:40):
Just say yeah, now you said, oh, there is something
maybe out there to help me, So walk us through
your journey, through everything you did to get to where
you are today.
Speaker 1 (25:49):
Oh sure, okay. Well, first of all, you know, a
shout out to the American government for making healthcare such
a difficult process. But Adam was switching jobs and his
insurance changed three times, like it was like old job
than intermediate insurance the new job. So the insurance kept changing.
(26:12):
So I was actually held up a little bit this.
Let's see, I discovered this around February March, and I
wasn't really at the doctor until July, and it all
had to do with insurance scrambling, which was such a drag.
But doctor Mahall like when you did her search. He
definitely was the guy to go see. And I imagine
(26:32):
you've spoken about this and on other episodes, but you know,
you go in for a curvature assessment, and how that
works is you go in and they give you what's
the drug? You use a little something to give you
an direction, you know that.
Speaker 3 (26:47):
Yeah, I mean it's al prostitutal, try and mix eedex.
There's all kinds of ones out there, penis and pop
yeah and yeah.
Speaker 1 (26:55):
I pop you up. So and in my particular case,
I had no idea when I was going in for
the curvature assessment. I had no idea they were going
to give me a needle to do that. I just
didn't know, and I was already so I was pretty
wired up when I finally got there, because you see,
you know, so I have this, I see this thing
(27:17):
happen to me, and you know, February March months are
going by, I'm beating myself up because of the sex
down the street. I'm heading into my maybe Yoda years,
and so all these stories are building up on me
and I'm ready to explode. So I get to the
doctor's office and maybe this is what the anger comes in.
I get to the doctor's office and they're gonna give
(27:38):
me a needle. And I had to get an erection publicly,
and I'm thinking, there's no way I'm gonna it doesn't
matter what they do, I'm not gonna be able to
get an interaction. Right, So they hand you some porn,
you know, you get your choice to what kind they
give you the needle. And the truth is, I didn't
get an erection. I barely got one, and I would
they just say, well, I need some more, so they
(28:01):
had to double the dosage. Now when they doubled it.
When they doubled the dosage, that worked because I didn't
even need porn. It was just like you know, but
and apparently, like doctor Mahall told me that adrenaline maybe
you know this, I guess, is that adrenaline is an
antidote for getting a good direction that apparently messes up
your age. So I was a drenalized, you know, I was.
(28:23):
I was. I was very upset, and I remembered I
was telling doctor you know, I was telling doctor Maha,
I said, you didn't tell me. You didn't tell me
that I was going to get a needle, like someone
should have told me. I was. I was so upset
that this thing happened, that I was getting a needle
on my penis, and I didn't know like you think
(28:43):
someone would tell you that, you know, so I was.
I was quite upset. But anyway, they did the assessment.
Sure enough, over thirty degrees. At that time, my penis
was going to the side, it was going to the left.
So then they set me up for you know verrap
mal treatments, which went on and on forever. So there
(29:04):
were I had a total of sixteen verrap meal saline treatments.
So they're separated by you know, a few weeks whatever.
It was three four not not as far as separated
as zyoflex is. It was a little closer, but maybe
just every few weeks. And you know, I went in out. Now,
(29:25):
once I knew I was going in and getting injections,
I was more ready. Plus they use lytocane. When then
they do the treatments with the verrap mill so they
the light a kane, you know, numbs your penis. So
they give you some lightocane shot at the base your penis.
Your penis is numb, and they go in there with
the needle and they're kind of talking to you, and
the needle's going in, like so they put the needle.
(29:47):
They put the needle in. When they're doing these rapmeal
saline treatments, they would put the needle in and then
they would move it around, so they go, yeah, they
moved all over the place. So you're going all over
the place under the skin. And then they take you
to that and maybe do that in a couple of other places,
and luckily you're none the whole time, and then of
course when you get home a few hours later, you're
(30:09):
you know, your penis is bright purple. But what I
liked about the saline rap mael treatment was all that siline,
like it just kind of filled up your penis, Like
you just for the first time, I was like, you
have this like elephant penis hanging there. You're like, oh, well,
at least You're like, I'm like, well, at least it
can still stretch too, you know, bigger, you know. So
(30:31):
that was kind of good. And then so and between that,
so I had had eight treatments at first, and I
was using at the time, it was called andro penis
was the stretcher I was using, and I was doing that,
I was stretching my penis. They said, you know, the longer,
the more amount of time you could do it, the better.
In the beginning and the first months, I would stretch
(30:54):
my penis up to eight hours a day. Yeah, I
was committed, you know, I was. I was like, we're
going to do this. You know. Now, granted, you don't
stretch it like a couple of days after for rapnel
treatment because you're too raw, But then like a few
days later you're back at it and you're just stretching.
And I would do it. I do it watching TV.
I do it reading the newspaper. And I am someone
(31:16):
who I wasn't someone who could put this stretcher on
and walk around and have my life. And frankly, I
didn't know anyone who could do that like I, you know,
talk to some guys who also have Bronie's disease. So
the only way that would work is I would have
to like kind of sit up in bed or sit
up on a couch. So there was a lot of
(31:37):
like sitting going on, you know, like U and I
would just do other things while that was going on.
So that went on for you know, eight treatments that
probably went on for about maybe. That went on for
about four or five months, yep. And then and I
was doing pretty well, and then doctor Mahall said, well,
I think you're done. Keep doing the stretching. Keep I
(31:58):
was also using a vacuum device, but I'd never found
that that helped much. I didn't use it. I did
that for a while, but I actually felt that it
hurt and I didn't like it, So I didn't do
that much. But but within two months after my first
rounds of treatments, things got worse. My penis shrunk more.
(32:19):
The upper half looked like a mousehead. It got so tiny,
and then it started curving, reversed candy cane toward my
belly button. And that was and that was that was like,
well now what? And then that was really really distressing.
So I went back to the doctor and he's and
I said to him, I said, well, did we didn't
we start too soon? Was it? You know? Because they
(32:41):
talk about the acute phase and then the you know,
the the what's the next phase after cute chronic, so
act to chronic. Yeah, so I was, you know, so
I did we did we just do it too soon?
And he's, well, maybe, so I did a whole other
round of eight treatments and that and that did that
(33:02):
helped a lot. And you know, I think it was
a combination of getting out of the acute phase and
getting you know, getting all these treatments. But that all
of that took eighteen months. Yeah, and then after that
I continued with the penis stretcher one or two hours
a day, had to be for four or five years.
(33:24):
I just kept doing it. And then of course I
wrote that this book came out, and a friend of
mine right here and I would moved back. We had
moved back to Los Angeles by then, and a friend
of mine who uh uh, you know, we'll call him Jack,
which is definitely not his name. Jack tells me, you, uh,
you got to you gotta go see doctor Mills. You know,
(33:47):
you got to get zyophlex. And I said, really, And
because I thought I was done what I had left,
And when when I came to see you, do was
I had a constriction band still a little bit in
the center of my penis, and it was enough so
that it felt like, you know, it was the shape
of you. And it was just like this tight band
that made my penis look like it was in two sections.
(34:10):
My eruptions were okay, you know, they weren't amazing, but
they were okay. And then I came to see you,
and you again we did the assessment and and you
were faster and easier than the first time I went around.
Speaker 4 (34:25):
And fast and easy.
Speaker 1 (34:29):
That's that's that's that that should be, yeah, that should
be right on the fore. But we only we did
four you know, like the treatments are A and B
whatever you did to treatment spirituat so we did four
with you, and I think it was like over five
months or or six months maybe, and and that constriction
(34:50):
band completely was removed and it has never come back.
And I've never had another look at Proni's again. In
the end, I mean, the beautiful thing about all this
is my penis is perfectly straight. There is not a
bend anywhere near it. There is no howard glassing is
what they call it. Right with that constrictions, there's no
(35:11):
hour glassing, there's no mouse head, there's no sometimes with
that hour glassing you could get you know, you'd be
erect below the construction and not erect above it. All
that's none of that trouble is going on now. I
am I am in my early sixties and my erections
aren't as strong as he used to be. But uh,
(35:35):
talk to me, you know, and most guys I know
at this age, you know, there's that's going on. So
but the good news is that I definitely still do
have erections, I still have sex, and I'm very fortunate
I feel how it turned out. You know, as doctor
Mahall used to say, he used to always say, nobody
ever died from Pironi's disease. He said that all the time,
(35:58):
and that was you know, kept it somewhat in perspective
because you know, this was not a death sentence. It
was just a you know, exceptionally inconvenient thing to have
to go through.
Speaker 4 (36:10):
You know.
Speaker 3 (36:10):
Yeah, well, I'll push back at John a lot because
we're very friendly and good professional colleagues. But but I
will say nobody's ever died from Prony's. But I've seen
another guys that would rather be dead than have prounies.
And I think you talked about a little bit of
the mental health component, which I never discount is that
these you know, some guys are so devastated. Yeah, you know,
they become shut ins. And thankfully you had good support
(36:32):
through it. And it sounds like you got good medical care.
Speaker 1 (36:36):
And not to be a bummer about it. Like a
couple of people in the Facebook group there were there
were two guys who suicides.
Speaker 4 (36:42):
There were yeah, thank you for yeah.
Speaker 1 (36:45):
Which is just you know, and now granted you don't
know what state they're in before they get Prony's disease,
but still whatever. You know, It's like I was in
an Okay state before I got Pronic's disease and I
got really depressed and drank a lot. So yeah, and
I didn't seem like the kind of guy who would do.
Speaker 4 (36:59):
That, so right.
Speaker 3 (37:01):
Yeah, But note, John, that's so important. I think I
talk about this a lot. And we I had a
study with some colleagues of mine from Karlinska Institute in
Sweden years ago that we publish looking at the rate
of suicidality and completion of suicide, and myth pronius is
something like three times greater than the general population and
men in general already, you know, we had other guests
(37:21):
to talk about the mental health aspect of men's health.
We're already really much better at killing ourselves than our
female female counterparts are. And so you put something like
this is one step over the edge. Then yeah, this
is why it's so important to have these conversations to
talk about it. And I think just you and I
having this conversation today, it's going to at least let
guys know there's something out there that you have a
(37:42):
support network, whether it's friends, family, or healthcare providers. And
that's you know, that is our PSA for today is
just that, you know, and then a lot of it
comes from the courage of you to be able to.
Speaker 4 (37:53):
Sit down and have the talk we're having. So thank
you for that.
Speaker 1 (37:57):
Yeah, no, no, my pleasure. And also, you know, I
think I wrote this in the book too, Like I
wrote something like and this is in my yoda, you know,
bit at my Yoda stage.
Speaker 4 (38:07):
But it was like.
Speaker 1 (38:09):
Some at some point I understood in life that I
was I am not my teeth and I am not
my hair, you know, And then I realized I am
not my teeth, I'm not my hair, and I'm not
my penis. Like I had to do that, you know,
and say like I can't you know, because you realize,
you know, especially hey, when we all get into eighties
(38:30):
and nineties, you know, there are going to be things
that are going to disappear on you in your body.
You know that are you know you could it could
be something as simple as, you know, a gallbladder, you know,
or or you could lose your sight, you know. I mean,
these things happen, and somehow I'm not saying, you know,
(38:51):
people talk about like you have to do this thing
to accept this big thing. I'm not saying I'm good
at it, you know, but I can say that I
am aware that this is part of the of dealing
with living is is these things that that you know
now granted, you know these things that will go wrong
(39:12):
eventually in life. Obviously, healthcare gets better and better every
day as far as what you know we're able to do.
But you know, these these things in life are are
little I can't say tests because I don't feel like
I was being tested, but they are lessons in some way,
you know, in some weird way that this accepting the
(39:35):
fact that you're you are a biological entity. And as
discussing as this sounds like when you're driving on the
street and you see a dead possum on the side
of the road, you know it's not much different from
your future ultimately, and it's a horrible thing. And I
can say these people some times and think, oh, don
shut up. You know, I'm trying to enjoy book club
or whatever. And I'm like, well, but that is the deal,
(39:58):
you know that there's that old uh well whatever. I
don't want to get too morbid here, but but but
it wasn't. But it wasn't. It wasn't. It wasn't like
this is not out of the ordinary of what happens
to people, you know. You know, I think that especially
in the United States, we're taught like you can have
it all and nothing bad's that were going to happen
(40:20):
if you had the right attitude, and you can you know,
you could Dale Carnegie your way to anything and all
these you know, all these things, and it's like, well,
actually the truth is, you know, look, look, okay, yeah,
I've been a creative person. So I've been a mostly
a writer, but I but for many years I was
an actor and a musician. I've done all these things.
(40:40):
And it's like like, like I can assure you from
from where I'm sitting, having lived right in the middle
of Manhattan, live right in the middle of Hollywood, and
having access to all these things, you know, I haven't
gotten everything I wanted? Who has really you know what
I mean? And and this kind of goes all you know,
and I am in all of people really who get
(41:03):
through life like totally healthy the whole way, get everything
they want. Uh, their marriage is perfect, their friends are brilliant.
I mean, I have you met many of these people.
Let's let's find them.
Speaker 4 (41:13):
You know.
Speaker 2 (41:14):
That's right.
Speaker 3 (41:17):
I've just been trying to win friends and influence penises
my entire.
Speaker 1 (41:23):
That's that's my sequel.
Speaker 2 (41:25):
That's the sequel put out there, but it's it's there.
Speaker 3 (41:50):
I don't think I've ever heard a more existential approach
to to Peroni's disease than what you've done here today.
This is this is exactly why I wanted you on
to have this conversation.
Speaker 4 (42:02):
Jordan, talk to us.
Speaker 3 (42:03):
You've been quiet, You've been You're still trying to figure
out how a possum has anything to do with Pironi's disease.
Speaker 5 (42:09):
I'm coming from all the needle talk now.
Speaker 4 (42:11):
I have a needle phobia a little bit. You talked
about the penis.
Speaker 2 (42:16):
Yeah, yeah, yeah, yeah.
Speaker 6 (42:18):
I mean it's beautiful that you have this support system
online and in your own home. You talked about Adam,
your husband so supportive, but you've also mentioned that partners
can still feel helpless. What do you think that partners
of men with pronis need to understand?
Speaker 4 (42:35):
Is there any advice that you'd have for them?
Speaker 1 (42:37):
Oh? Wow, yeah, I honestly that the big word is patient,
because if you're going to be patient, Uh, if you're
if you're partner with prony's disease, is being proactive and
taken care of it, and it will, it will get better,
probably it will, it will most likely proove And so
(43:02):
if you so, you have to be so as a partner,
you've got to be really generous and patient and understand.
Like I look, I mean, we all know this as adults. Here,
Like there's lots of ways to have sex, and there's
other parts of your body you can use for different things.
So you know, I'm not gonna be graphic here, but
but we we've all, you know, we we've all have
(43:24):
discovered different ways to enjoy each other's bodies. So do
that until the penis is back online, you know, like
find other things to do. And certainly you're you're a partner.
If they are in the mood, you can't you know,
want to force anyone, but if they still are feeling
a little bit sexy at times, you know, that person
(43:46):
with pron dises might be more than happy to oblige
and do other things for you with you, So patience
and generosity and then on the other side and to
understand on the other side, like yeah, things might be
a little different, but more patience and more generosity, I guess,
and flexibility yeah yeah.
Speaker 3 (44:05):
Both physical as well as emotional flexibility.
Speaker 1 (44:08):
Yeah yeah, yeah, yeah. So that's and I was fortunate that,
you know, Adam was great. I mean I have that's funny,
you know, like like my my, my joke about Adam
and so he's not going to close the cabinets, you know,
but my joke has always been, you know, uh, he
forgets to close the cabinets, but he doesn't forget to
go to work, you know. So that's very important.
Speaker 4 (44:30):
And he's if you had to choose, if you yeah,
I've got to do that.
Speaker 1 (44:33):
And and he was, you know, he was fantastic during
all this, So I was I was very lucky in
that way.
Speaker 4 (44:39):
So yeah, I love this.
Speaker 1 (44:41):
Yeah, yeah, I love that.
Speaker 3 (44:43):
Okay, so tell me this. We we always talk about
the show. You're probably going to be okay, and you've
done an entire episode of how this is not a
life sentence.
Speaker 4 (44:53):
By any means.
Speaker 3 (44:53):
And certainly if you're feeling like this is something that
is overwhelming and devastating and is questioning your existence, then
you know we have ways to help. But tell me
what makes you you on a daily basis? So this
is the other question I always like to ask all
my guests. Just you know, you're a fire survivor. Now
you made it through the Altadena fires, so you've had
a lot of perspective in your life, suffering from Prona's disease,
(45:16):
suffering from this devastation of the Adena fire. What did
you do during that recovery? What do you do every
day to make you you so that you can get
on with your day and be the best person you can.
What is your non a? What is the Dawn Cummings
approach to getting up out of bed in the morning.
Speaker 1 (45:34):
Yeah, yeah, well I'm very project oriented. So usually what
happens is is I'm I'm disciplined, I guess, and so
I do my morning routine like anyone does, you know,
eat breakfast, read the paper or whatever. But I'm more
of an afternoon worker than I am a morning person,
so I either have something to write or practice or
(45:58):
mostly write. But I all so you know, you'll see
the piano behind me. I do some music work too.
I have things I like to do. So where I'm
very fortunate is that I am drawn. I am very
strongly drawn to writing and doing music and being with
(46:20):
writer folk, theater folk, whatever. So I don't have to
I don't have to try too hard to come up
with a plan. Like the plan is kind of internal,
you know. So that's the good news. So that's what
I do. So I work on my projects in the
afternoon as usually, and then frankly, my evenings are mostly
(46:43):
you know, I exercise. I do exercise. I think it's
very good for mental health. I do do some form
of exercise five days a week. And my favorite thing
is to do with the I this four mile, very
e strenuous walk up here in Altadena because's lots of
hills up here, so and I do that twice a week,
and that's my favorite thing. Is I like to be outside,
but I do, you know, I do core work and
glut work and yoga, and I just I do think
(47:06):
being in your body physically and using your body every
day is absolutely essential for mental health, you know. So yeah,
so I I have projects to do. I take care
of my body as best I can. Like I said,
I don't drink. I'm not opposed to drinking, but it
doesn't quite agree with me. And I definitely again very
(47:28):
fortunately I have a husband and on it goes to work.
But he he's a good cook, and we eat really
healthy We eat really healthy food. So these kinds of things,
you know, and and and keeping. You know, I meet
these people who get to a certain age, you're going
to retire and move to some cheap town in the
middle of nowhere. I would never leave La, like like
I been here for decades, like this incredible support group
(47:52):
of friends. I don't. I would. I would be devastated
if I lost my my friend group.
Speaker 4 (47:59):
I would. It would be Yeah, I love it.
Speaker 3 (48:01):
I love the plug for LA is a place where
real people can live and be real.
Speaker 1 (48:06):
Yes, I love La. I mean people people who have
never lived here that they don't really understand what it is.
But I think La is amazing. I think it's an
amazing city.
Speaker 3 (48:15):
It's one of the world's most amazing and addictive drugs. Yeah,
you know it makes us do irrational things like mortgages
and taxes that are out of control. We have to
live through traffic, fires and floods and earthquakes, and.
Speaker 2 (48:28):
Yet I just keep needing more and more of it.
I know it is so good for me.
Speaker 4 (48:35):
I hear you, I hear you. I'm right there with you.
Speaker 3 (48:38):
Well, Don, you delivered on the mail Room. I'm so
grateful for your candor and your humor and your ability
to to just share your story in such a great
and entertaining way.
Speaker 4 (48:49):
Bent but not Broken is the is the book?
Speaker 3 (48:51):
And please, guys, it's it's it's really just truly a
terrific read. It's hilarious, it's also very heartfelt, and now
you get to know the author personally.
Speaker 4 (49:01):
So thank you.
Speaker 1 (49:03):
Oh it's all I'm looking at right now, and it's
only two hundred and twelve pages.
Speaker 4 (49:07):
There you go. Sure, yes, that's right. I do would
say it's.
Speaker 3 (49:10):
An easy read, but it's a good read. And I'm
grateful you're in my life. Don, thanks so much for
coming on the program, Jordan, thank you so much for
putting this together. And uh, and then yeah, let's take
it out with some little blues music with a long Transit.
Thanks so much to ihearten everybody my pleasure.
Speaker 4 (49:38):
Let's talk about it. Let's talk about the man, Hero.
Speaker 1 (49:46):
Let's talk about it. Let's talk about him, the man Hero.
Let's talk about it.
Speaker 2 (49:57):
Let's talk about the man.
Speaker 5 (50:01):
The mail Room with Doctor Jesse Mills was a production
of iHeartRadio. It was executive produced by Jordan Runtogg. It
was edited, mixed, and mastered by Beheid Fraser, and the
theme was provided by Long Transit. If you like what
you heard, please subscribe and leave a review. For more
podcasts from iHeart Radio, check out the iHeartRadio app, Apple Podcasts,
(50:23):
or wherever you listen to your favorite shows. This program
is intended for educational and informational purposes only. It is
not a substitute for professional medical advice, diagnosis, or treatment.
Consult your healthcare provider for any medical or other related
questions or concerns. The views and discussions aired on this
podcast are those of doctor Mills and do not represent
(50:45):
the official positions of UCLA or UCLA Health
Let's talk about it.
Speaker 2 (00:03):
Let's talk about the man.
Speaker 3 (00:05):
Hero.
Speaker 1 (00:08):
Let's talk about it. Let's talk about the man Hero.
Speaker 3 (00:17):
Welcome to the man, Welcome back to the mail room, everybody.
This is doctor Jesse Mills again here has always joined
with Jordan run Top, my producer extraordinaire, man.
Speaker 4 (00:27):
Of the people, and uh so good to have you back, Jordan.
Speaker 3 (00:31):
We are rolling through our gosh four part series or
so on Pironi's disease. We've looked at history, We've looked
at early treatments, we've looked at FDA proved treatments, we
looked at surgery. But I don't think there's a better
way to talk about a condition without actually bringing in
somebody that has suffered, is suffering from, or has experienced
(00:53):
the tradition the condition rather firsthand, because you know, as
a physician and I treat thousands of guys with this,
what I tell guys is not necessarily what I am
personally living, obviously, And so with that I bring in
our own in house celebrity. Don Cummings, who is an author,
an essayist, a screenwriter, a playwright, a musician, is the
(01:18):
multi multi poly He also was on Dharma greg I
didn't know this about you, Don, But acting also has
a Hollywood bend. We lives out here with his husband
and his poodle, which I also have two poodles, so
we got to talk about that. But Don and I
have known each other for a number of years. The
reason we got into each other's company is because he
(01:39):
wrote a book called Bent but Not Broken, which was
a memoir on Perone's But the brilliant thing about this
book is I encourage everybody that has Pironi's as a lover,
a friend, a family member that has is to get
this because, as we're going to find out, this guy
is hilarious and he takes something that is so traumatic
that we've spent a lot of serious time talking about
(02:00):
the psychological, emotionally devastating manifestations at Pronie's disease. But somehow
he figured out how to make it funny. And I
don't know how he does it. So we're going to
unpack and unlock his brain. Don, I'm going to stop
talking because I'm just so excited that.
Speaker 4 (02:13):
You're in the mailroom. Welcome.
Speaker 3 (02:15):
It's so good to see you again, my friend, especially
after surviving the Altadena fires and the trauma you went
through with that, and I know that you know, be
from the Palisades. We had both ends of the city
burning not that many months ago. So thanks for coming back,
and thanks for taking the time to talk to our
audience in the mail room.
Speaker 2 (02:33):
Welcome, welcome, thank you.
Speaker 1 (02:36):
I'm glad to be here. I'm glad to be of
service in any way that I can to people who
are going through Paroni's disease or or fires for that matter.
That's right, I guess today today, but today our subject
is Pernie's disease. So I having been through it, I'm
glad to talk to people about it and tell them,
you know, how they're going to be okay, probably.
Speaker 3 (02:58):
Yes, I love it. Look at this, he's got the
tag lar already. Just you opened with the closer. That's
good writing right there. Yeah.
Speaker 2 (03:07):
But yeah, it's so important. I mean, and I think
the way that.
Speaker 3 (03:10):
Jordan and I were sort of talking about how he
wanted to talk with you about this, because this is
such an important opportunity for listeners to hear from somebody
that has gone through it, has went through it, has
been through it, knows a lot about it, and actually
wrote about it.
Speaker 4 (03:23):
So read the book.
Speaker 3 (03:24):
But Meanwhile, let's spend the next a little while in
the mailroom talking about.
Speaker 4 (03:28):
The origin story.
Speaker 3 (03:30):
And I'm going to start with a question that's a
little bit backwards as well. I'm going to ask what
the twenty year old twenty five year old? Because this
happened to you in college, So you were what in
your early twenties or so?
Speaker 1 (03:43):
No, no, no, no, no, no, I was forty eight.
Speaker 3 (03:45):
Oh forty eight, okay, because you had this whole part
about you know, what you were doing in school.
Speaker 4 (03:49):
Yeah, that's right when you were I.
Speaker 1 (03:50):
Think, yeah, yeah, what you're remembering is so the book
has written the idea is like, you know, you're you're young,
and you're vital, and I was fortunate to that's right,
come from a place where sex was readily available, so
you know, being you know, safe sex and all that.
But I was young and willing, and so there's a
(04:12):
lot in the book that starts with this. It doesn't
start with it, but it gets interweaved, you know, throughout
the book about what it was like to be you know, young, hot,
having sex all the time, and very much feeling that
was a part of my identity and it was really
fun and you know, no one got hurt and for
(04:33):
the most part, no, I mean basically it was it
was really wonderful to be in that stage of life.
And then you know, you get into middle age and
you're not having as much sex, probably because you're busy
doing other things. But uh yeah, but I was really slammed.
And I was forty eight is when it happened. And
I think I probably told you, well, it's in the book,
and I probably told you too. I was a I
(04:55):
was a biology major in college. Even I did a
lot of theater too. I was a writer about I
just did too many things. But I was interested in
a lot of stuff. So I was a biology major.
And I was not only a biology major, but I
was a pre medical student at Tufts University in Boston,
and I knew a lot and I have, like I
have a nephew medical school. My mother worked in a
(05:15):
doctor's office. My sister's a hospital administrator, so I had
a lot of medicine stuff around me in my life.
As soon as I started seeing this curve of my penis,
I have Prony's disease, Like I just kind of knew.
And this was way before even the commercials were on TV.
I just kind of knew of on the list of
all the horrors that could happen to you in life,
(05:36):
and so it was a quick self diagnosed. So anyway,
I was forty eight when it happened. Yeah, and it
was you know, at the time, it was even though
I wasn't, you know, a kid, it was still forty
eight is young, you know to start thinking at least
I started thinking like, oh, okay, so my sex life
is over. Huh, you know, And that was really quite
(05:59):
maybe too severe a reaction for me to think that way.
But my mind went.
Speaker 4 (06:05):
There to begin with catastrophized.
Speaker 1 (06:07):
Yeah, I catastrophized for sure.
Speaker 4 (06:09):
And that was the question that yeah, I was.
Speaker 3 (06:10):
I was going to ask, Don is the what what
does what did you wish you knew when you were
forty eight and this happened? Because it sounds like you're right,
prone's is a diagnosis guys almost always make before they
There's nothing about my diagnostic acumen that allows me to
to say, oh, yeah, you have Broni's I mean, uh,
especially now with the ben Carrot commercials. You're right, but
(06:31):
but yeah, talk to me about what you wish you
knew at the beginning of this journey that you know.
Speaker 1 (06:35):
Now, I wish I knew z eye flex was going
to do the trick for me, because it did when
I came to see you.
Speaker 4 (06:41):
Yeah, I hippo violation, Yeah yeah, yeah.
Speaker 1 (06:46):
Yeah yeah yeah. Well I mean I can I can
self expose, right, I mean obviously yes, you can't know absolutely, Okay,
So I wish I knew that there was something that
was actually going to reduce the scar tissue because see
when I when I first had Prony's disease, the the
treatment at the time was verapamil and saline combo where
(07:10):
you injected the plaque with basically saline and verrap mill is.
You know, it is a blood pressure medication, but they
kind of mix it with saline and somehow this helped
loosen up this scar tissue a little. But I think
the way that worked, or it seemed to work, was,
as I explained to explain it in my book, is
you know they try to turn cheddar into Swiss. Yes,
(07:32):
so it's just like this sort of making lots and
lots and lots of holes and this plaque so it
kind of can expand, and that that worked, okay, you know,
but it didn't really do the full trick at the time.
So I wish I had known that something was coming
down the pike, and I heard of I heard of
what was coming down the pike. But I thought, well,
(07:53):
all right, Well I went to my doctor, I did
my deal. We were living in New York at the time,
and so that happened in the first few years, and
I didn't see you till many years after that.
Speaker 3 (08:04):
Actually, that's right, yeah, I mean, you know the clinical
trials we talked about zye flix in the past, and
that you know, really they did back to the early
two thousands, and actually the real history goes back even
to the nineteen eighties, and so there was a rumor
of this medication for so long before the FDA actually
approved it, And so you're right. I mean, guys like
(08:24):
you that had it, it must have been tantalizing. And
I remember seeing patients in my office saying, you know,
I want to be in the trial or when can
I start this and having to wait for that FDA approval.
Speaker 4 (08:35):
And so yeah, so talk me through this.
Speaker 3 (08:37):
So forty eight you wake up one day with the
band you had a trauma. Walk us through this, because
I think we always talk about the presentation of what
this looks like to a guy. And I always try
to disassociate the guilt factor of like you did something
wrong to your penis and did you go through any
of those things?
Speaker 4 (08:54):
That's like four questions and once I.
Speaker 1 (08:55):
Know, sure, no, no. Absolutely. Strangely enough, when it first
started present it south, it was I'm sure other guys
who told you about this, you start having your erections
at night start being somewhat painful. Yeah, And I had
already at forty eight, my erections weren't quite as strong
as they were when I was twenty eight. So I
(09:16):
was actually, strangely at the time when that started happening, thinking, oh,
my erections are They're getting stronger, that's why they're hurting.
So at first at first I thought like yeah, so
I was like, yeah, here we go, man, you know. So,
you know, and then after about three weeks of that,
I started seeing the curve, you know. And I hoped,
(09:40):
of course at first that like, well, this will just
be a little bit, it'll be fine, but it just
got worse and worse, you know, So I don't what's
the next part of your questions? There were there were
a few.
Speaker 3 (09:49):
There, Yeah, yeah, I know, it's just essentially how quickly
did it develop? And then really the most important thing is,
yeah is it how much did you feel guilt because
of the Do you.
Speaker 4 (10:00):
Think you did something wrong?
Speaker 1 (10:02):
I see, I see. Yeah, okay, so the guilt. So
the short answer for the development was I would say
within three weeks I was went from painful night time
directions to a curve. It was pretty fast and I
knew what it was. So but as far as the
guild goes, yeah I did. I was afraid that I
had sex a little bit too hard with someone, and
(10:24):
the truth is that someone was not who I was
married to. So so the guild came in. Now where
we're older now and this doesn't quite happen anymore, but
you know, we're a gay couple. When we were younger,
there was an understanding. It didn't happen frequently, but if
you were out of town and you needed to take
care of business, you could. So it was one of
(10:45):
those situations, and I was with someone who wanted sex
to be a little harder than I'm used to. I'm
quite vanilla kind of sex guy. There's not much. I'm
not a kink guy or anything, but there was someone
who wanted things to be a little rougher than I
would want to do, and I said, oh, okay, and
I was I was a top, as they say in
(11:09):
the gay world. So I was the inserter, and I
was just doing things, just slamming a little harder than
I usually would do. Yeah, And then I thought, oh,
did that do it? Was? Was that why this happened?
Because that sexual encounter happened maybe maybe six or six
or seven months before I started showing Berni's disease. And
(11:31):
then I just started thinking about, well, it was really
that I didn't have other I didn't have other thoughts
of other sexual activities that I had that would have
caused it. But it made me also start thinking, like,
I know myself and I am someone who has this
thinking that I can control things more than I can.
(11:52):
So I was able to say to myself, well done,
You're you might be beating your You might be beating
yourself up when you don't need to. So I went
back and forth. So at times I thought, well, you're
beating yourself up and you don't need to to, Like, oh,
if I had only not gone down the street to
to to this this attractive man who wanted this certain
(12:12):
kind of sex, and if I wasn't such a people pleaser,
like it's like, oh, oh you want to like this,
Sure I'll do it.
Speaker 3 (12:19):
You know, it's like you're victim shaming your own penis exactly.
Speaker 1 (12:25):
No, I mean it was. It was so funny.
Speaker 4 (12:27):
It was.
Speaker 1 (12:27):
It was and I remember, and you know, just as
an aside to that sexual activity, I remember doing it,
and like, I don't know if you ever do something
like I don't know, go to six Flags or something,
something you really aren't that interested in doing, and you're
going through the motions and parties like looking at going
like this isn't really me. I don't even want to
be here, and you're just kind of doing it. And
it's almost like I always had a smirk on when
(12:48):
I was just like Okay, well this guy wants this,
and I'll just do it. But yeah, but I went
back and forth. So it was and and but I
don't let go of things easily, so I went back
back and forth for a long time. I went back
and forth for easily a couple of years. So it
wasn't like something I processed swiftly. And then but I'm
(13:09):
you know, it depends on your personality. I'm someone who
I do change, which is great. I'm happy for that.
But I'm not a fast changer. I'm not a fast learner,
you know so, but I do get there.
Speaker 3 (13:43):
Your story is very similar, as we talked about a
couple of episodes ago about the when Perni described Pirnie's disease.
It was a case report of a guy that stepped
out on his wife in eighteenth century France and came
back with a curvature. And Perni's like, well, that's why
it happened. You're unfaithful, You had a crazy encounter, and
(14:03):
you know, sort of like back of the carriage sex
or something like that. I think they had carriages in
seventy and eighteenth century France. It wasn't exactly an nineteen
eighty one Camaro or something, and that's what set it off.
And there's probably an aerial disease and all kinds of things,
and so you sort of process that quickly. And what
I always like to tell guys, and we probably talked
about this, you know, unless you had a sexual encounter
(14:25):
where your penis was black and blue and swelled up
to an egg plant, you probably didn't do anything to
hurt your penis, and the penis is so able to
handle all kinds of crazy things, vanilla kink and everything
in between. And so you know, I always try to
disavow guys that you did anything wrong. And one thing
you brought up, which I think is important just from
a medical standpoint, though, is that you were in because
(14:48):
you were in your forties and your erections may not
have been as strong. Is that we do think that
that maybe that little micro trauma when you start to
not get as strong of an erection, that maybe you
have a little more flex injury within her, and then
that leads to the perronis. But I've had a lot
of guys in my practice that don't engage in really
any kind of penetrative intercourse that still get pirronis, and
(15:10):
so so I don't even think the flex injury necessarily
holds a lot of water.
Speaker 4 (15:15):
I think this is something that just happens.
Speaker 3 (15:17):
And as we probably talked to me, and you have
a genetic predisposition, and here you are, and it's common,
you know, I mean ten percent plus guys have this
and it gets more common every year that we have
more and more disease state awareness about it. So Okay,
So basically you would tell yourself, hey, I didn't do
anything wrong here it is, this is a hand i'med doubt.
Speaker 4 (15:36):
Now I got to go find somebody that's going to
fix this for me.
Speaker 1 (15:38):
Yeah, yeah, exactly exactly right. And you said the genetic component.
You know, my my paternal grandfather had I cant pronounce correctly,
deep in trends, deep in trends.
Speaker 4 (15:49):
Yeah, potrens.
Speaker 1 (15:50):
Yes, he had that.
Speaker 4 (15:51):
Another French guy.
Speaker 1 (15:52):
Yeah, no, yeah, he had that. Really his ring finger
on his right hand was like, you know, like that,
that's right, and he used to joke that it was
from an injury in World War One, you know.
Speaker 4 (16:02):
But yeah, yeah, yes.
Speaker 3 (16:04):
So I had a guy years ago I took care of,
Actually was not I didn't take care of.
Speaker 4 (16:09):
He was.
Speaker 3 (16:09):
He was one of my rips, and he had the
Putrin's and he had the exact same treatment. He had
zyaflex for his hands so that he could get hand
function back. And he was the first guy that had
a positive experience from xio flix. And he came into
my office saying, as a single man, Doctor Mills, I
finally got my sex life back because his hands started working.
Speaker 5 (16:30):
I have it.
Speaker 1 (16:30):
I have it a little bit on this right hand.
Ye say it right?
Speaker 4 (16:34):
You have a pucker.
Speaker 1 (16:35):
Yeah, but it hasn't It's been that way for eight
years and hasn't changed. And I did go to a
hand sergeant and he said, can you lay your hand flat?
I said, no problem. He said, we get out of here,
so perfect.
Speaker 3 (16:47):
Yeah, that's right. And you can't lay your penis flat.
So now you can probably lay when your penis is flat.
Speaker 4 (16:55):
With this.
Speaker 2 (16:55):
You're the guy with the jokes. Don help us out here.
Speaker 4 (16:58):
Oh my god.
Speaker 1 (16:59):
You know it is funny, you know it is. It's
funny to someone I was in college. I mean, people
just say, yeah, you should be a stun a comedian.
The problem with that was that I'm funnier when I'm
alone writing.
Speaker 2 (17:09):
Than I am.
Speaker 4 (17:11):
I am not, I am not.
Speaker 1 (17:12):
I'm not really like an improv guy. I was always
amazed that these people can just get up and and
and and be really funny in the moment and stuff.
I'm more of a studied kind of guy, which is
you know, but any event that's like, that's that's my humor.
Speaker 3 (17:26):
The worst thing you do with the stand up is
to say, tell me a joke, shut him down, Promise
I won't do that to you as we as we
go through this. Yeah, so so talk to me about
your support mechanisms. You know when you're going through this.
Is this a disease that you suffered alone or is
it something you know you had support for, And just
(17:47):
walk me through. You know who was there for you,
was in your corner.
Speaker 1 (17:50):
Well, you know, I don't think we're officially married yet,
but we've been together. We were alreadgether many years. My
husband Adam, who was fantastic through the whole thing and
was right there with me from the beginning. And then
I'm not a shy guy, so we were in I
just said, we're in New York at the time. I
have a lot of friends, and I just would talk
(18:10):
to a lot of my friends about it, and also
my family, my parents. My parents were very much My
parents were both passed now, but they were alive at
the time, and and I talked to them and they
were really wonderful about it. A matter of fact, we
were up I told him about it. We were up
in Lenox, Massachusetts, just like you know, walking around having
(18:31):
some meals and having a weekend, and it was and
I told him about it. I remember that really is
the Lions something that that that really nice place in Lenox. Anyway,
we were at a really nice hotel and having lunch
and I was telling them about it and they were,
you know, super supportive. I'm very lucky that my parents
were that way. And then, of course the doctor I
(18:54):
saw in New York am I allowed to say his name?
Of course, Yeah, yeah, doctor Mahall is his name. He
was at Sloan Kettering. He was Yeah, he was fantastic.
I mean, he was super super helpful back and he
was the one, you know who told me that Zye
Flex was coming and I was like, okay when but
uh yeah, so I was. I was fortunate and and
(19:16):
interestingly so I was in a writer's group in Brooklyn
at the time, and then all the writers in the
writers group became supportive because I actually began to write
Bemp and Up Broken. It's really more like a just
a simple book about, you know, helping people get through
Perni's disease. I was just taking the notes on my
(19:37):
treatments and I was going to put out this kind
of dry pamphlet. But when I started telling stories about
the human element of it and the the the horrors
of I mean the the mostly my comedic descriptions in
the book are like of what my penis looked like.
You know, I went from you know, rocket to mouse
to you know, curve to upside down candy cane. My
(19:59):
penis kept change shapes. It was all over the place.
So every a few months it was like somewhere else.
And just when I thought just what I thought, it
couldn't be any worse, it got smaller and thinner and
more bent. You know. It was just wouldn't end. But
again my writing group that they you know, and I
would talk about how it was affecting me personally. They said, well,
you need to write, you need to write about all this,
(20:20):
the whole experience. You need to write about, yeah, the
penis and helping others, but like how you're going through
it emotionally. So that group was very supportive. So I
was quite out there with it, like I now because
I was quite out there with it. And I also
have a Facebook group called Prony's Disease Support that a
lot of people join us, about two thousand guys on
it now. And also when you know people who are
(20:41):
in a relationship with people who have pronus disease, so
people are, you know, have always been coming at me
ever since this, and I'm I'm glad I was quite
out there and I wasn't. I wasn't embarrassed by I
don't know why. I wasn't embarrassed. I don't know why,
but I wasn't because I think it's my biology background.
I was like, well, this is just like I'm an animal.
(21:02):
I got this animal thing happening to me, and I'm
just gonna say, oh, you know, I had some bad
luck and so I was fortunate that so many people
were in my corner. But I will give myself a
small pat in the back saying this was in many
ways due to the fact that my personality is such
(21:24):
that I'm a bit of a yaky open guy, and
that was helpful. So my point being a lot of
guys coming at me. Most men who talk on the
Facebook site or reach me privately, believe me, they're not
doing what I did. Like most guys are not out
there with a book or a billboard or a you know,
(21:45):
a T shirt or making jokes about it because it's
or a podcast cook They're rightfully upset, you know, as
was I very much. But I don't know I'm not
comfortable things inside, they get extra I feel like I
get extra upset more than others. Like I think these
(22:06):
Taska turn types maybe they just I don't know, they
have those personalities and they can do that. I'm not
built that way.
Speaker 4 (22:13):
So I was going to ask about anger.
Speaker 3 (22:16):
You know, how does how did anger fit into your
stages of acceptance?
Speaker 1 (22:20):
I had no anger? No, yeah, strangely no, no, I had.
I had depression, that's for sure. I had at times.
I have this thing that happened to me. So I'm
forty eight on, I'm forty nine, and I'm thinking, well,
I'm getting into my Yoda years. I'm like, I'm becoming
an old man before my time, and I'm going to
(22:43):
be one of these guys who's sort of on the
outside of things, being a sage. And I thought, well,
I tried to sort of get into this weird you know,
I'm believing me I'm not that spiritual. I try to
get to this spiritual idea of like I'm going to
be like post sex. I'm going to be like this
guy who who has this aura, you know, be a
tific way about him, who sits on a lawn chair
(23:06):
and just dispenses wisdom and you don't have to worry
about him like being a horn dog, because that is over,
you know.
Speaker 4 (23:14):
Meta.
Speaker 1 (23:15):
Yeah, And I started tried to I tried to see
myself that way.
Speaker 4 (23:20):
Now.
Speaker 1 (23:20):
The truth is, then as soon as there was an
inkling that I might get a little better, you know,
like the Yoda, I kicked to the curb.
Speaker 4 (23:26):
You know.
Speaker 1 (23:26):
I definitely definitely didn't want to be Yoda. But no,
I didn't. I didn't have anger, but there were there
were days where I was I will definitely say that
there was a joy of life that was sapped and
something I probably shouldn't leave out too. I started drinking,
oh yeah, a lot.
Speaker 5 (23:47):
Yeah.
Speaker 1 (23:47):
And I was never a big drinker. I actually don't
drink it all now for other reasons. But I just
started drinking a lot. And drinking is depressing, right, I
mean it's a known depressant alcohol. So that wasn't good.
And then I and I stopped that too. I was like, uh,
you know, now, am I drinkings like if I got
to France or if it's a wedding, But I'm not.
(24:08):
I was one of those college kids. I didn't drink.
I just I wasn't that interested in it. You know,
I don't know why never agree with me. Actually, my
my mother and my sister don't drink it really bothers
our systems. I think it's like, I don't know. I
think for me, it's been inflammatory. It doesn't work well
in my system. But anyway, I was drinking a lot
and it was bad, and uh, and that's you know,
I was trying to escape these feelings of loss. Really,
(24:32):
I think I think what I was feeling mostly was
grief and loss is what I really was feeling at
the ripe old age of forty eight. And so I'm
half Irish, so I grabbed the bottle.
Speaker 4 (24:46):
He poured one out, poured out your penis. Yeah, I mean.
Speaker 3 (24:50):
I think that's what you brought up is interesting in
that you're, yeah, you're kind of mourning what you know,
what your penis used to be. And also you sort
of became very stoic very quickly and became well, I
had a good run. Now I'm just going to sit
back and watch everybody else do this at forty eight.
That's that's not a good run. That's you know, that's
a career cut very short. So not to use that
(25:13):
pun I think we'll but but yeah, it's a career
cut short, right, So so then tell me about the
redemption arc.
Speaker 4 (25:20):
Then.
Speaker 3 (25:20):
So you you're on the sidelines, your lightsaber is not
what it used to be, and you are thinking, wait
a minute, there might be somebody out there that can help,
and so you found doctor mohall. So we started this
with you're probably going to be okay, So we're going
to use you as you're probably.
Speaker 4 (25:37):
Going to be okay for this thing.
Speaker 3 (25:40):
Just say yeah, now you said, oh, there is something
maybe out there to help me, So walk us through
your journey, through everything you did to get to where
you are today.
Speaker 1 (25:49):
Oh sure, okay. Well, first of all, you know, a
shout out to the American government for making healthcare such
a difficult process. But Adam was switching jobs and his
insurance changed three times, like it was like old job
than intermediate insurance the new job. So the insurance kept changing.
(26:12):
So I was actually held up a little bit this.
Let's see, I discovered this around February March, and I
wasn't really at the doctor until July, and it all
had to do with insurance scrambling, which was such a drag.
But doctor Mahall like when you did her search. He
definitely was the guy to go see. And I imagine
(26:32):
you've spoken about this and on other episodes, but you know,
you go in for a curvature assessment, and how that
works is you go in and they give you what's
the drug? You use a little something to give you
an direction, you know that.
Speaker 3 (26:47):
Yeah, I mean it's al prostitutal, try and mix eedex.
There's all kinds of ones out there, penis and pop
yeah and yeah.
Speaker 1 (26:55):
I pop you up. So and in my particular case,
I had no idea when I was going in for
the curvature assessment. I had no idea they were going
to give me a needle to do that. I just
didn't know, and I was already so I was pretty
wired up when I finally got there, because you see,
you know, so I have this, I see this thing
(27:17):
happen to me, and you know, February March months are
going by, I'm beating myself up because of the sex
down the street. I'm heading into my maybe Yoda years,
and so all these stories are building up on me
and I'm ready to explode. So I get to the
doctor's office and maybe this is what the anger comes in.
I get to the doctor's office and they're gonna give
(27:38):
me a needle. And I had to get an erection publicly,
and I'm thinking, there's no way I'm gonna it doesn't
matter what they do, I'm not gonna be able to
get an interaction. Right, So they hand you some porn,
you know, you get your choice to what kind they
give you the needle. And the truth is, I didn't
get an erection. I barely got one, and I would
they just say, well, I need some more, so they
(28:01):
had to double the dosage. Now when they doubled it.
When they doubled the dosage, that worked because I didn't
even need porn. It was just like you know, but
and apparently, like doctor Mahall told me that adrenaline maybe
you know this, I guess, is that adrenaline is an
antidote for getting a good direction that apparently messes up
your age. So I was a drenalized, you know, I was.
(28:23):
I was. I was very upset, and I remembered I
was telling doctor you know, I was telling doctor Maha,
I said, you didn't tell me. You didn't tell me
that I was going to get a needle, like someone
should have told me. I was. I was so upset
that this thing happened, that I was getting a needle
on my penis, and I didn't know like you think
(28:43):
someone would tell you that, you know, so I was.
I was quite upset. But anyway, they did the assessment.
Sure enough, over thirty degrees. At that time, my penis
was going to the side, it was going to the left.
So then they set me up for you know verrap
mal treatments, which went on and on forever. So there
(29:04):
were I had a total of sixteen verrap meal saline treatments.
So they're separated by you know, a few weeks whatever.
It was three four not not as far as separated
as zyoflex is. It was a little closer, but maybe
just every few weeks. And you know, I went in out. Now,
(29:25):
once I knew I was going in and getting injections,
I was more ready. Plus they use lytocane. When then
they do the treatments with the verrap mill so they
the light a kane, you know, numbs your penis. So
they give you some lightocane shot at the base your penis.
Your penis is numb, and they go in there with
the needle and they're kind of talking to you, and
the needle's going in, like so they put the needle.
(29:47):
They put the needle in. When they're doing these rapmeal
saline treatments, they would put the needle in and then
they would move it around, so they go, yeah, they
moved all over the place. So you're going all over
the place under the skin. And then they take you
to that and maybe do that in a couple of other places,
and luckily you're none the whole time, and then of
course when you get home a few hours later, you're
(30:09):
you know, your penis is bright purple. But what I
liked about the saline rap mael treatment was all that siline,
like it just kind of filled up your penis, Like
you just for the first time, I was like, you
have this like elephant penis hanging there. You're like, oh, well,
at least You're like, I'm like, well, at least it
can still stretch too, you know, bigger, you know. So
(30:31):
that was kind of good. And then so and between that,
so I had had eight treatments at first, and I
was using at the time, it was called andro penis
was the stretcher I was using, and I was doing that,
I was stretching my penis. They said, you know, the longer,
the more amount of time you could do it, the better.
In the beginning and the first months, I would stretch
(30:54):
my penis up to eight hours a day. Yeah, I
was committed, you know, I was. I was like, we're
going to do this. You know. Now, granted, you don't
stretch it like a couple of days after for rapnel
treatment because you're too raw, But then like a few
days later you're back at it and you're just stretching.
And I would do it. I do it watching TV.
I do it reading the newspaper. And I am someone
(31:16):
who I wasn't someone who could put this stretcher on
and walk around and have my life. And frankly, I
didn't know anyone who could do that like I, you know,
talk to some guys who also have Bronie's disease. So
the only way that would work is I would have
to like kind of sit up in bed or sit
up on a couch. So there was a lot of
(31:37):
like sitting going on, you know, like U and I
would just do other things while that was going on.
So that went on for you know, eight treatments that
probably went on for about maybe. That went on for
about four or five months, yep. And then and I
was doing pretty well, and then doctor Mahall said, well,
I think you're done. Keep doing the stretching. Keep I
(31:58):
was also using a vacuum device, but I'd never found
that that helped much. I didn't use it. I did
that for a while, but I actually felt that it
hurt and I didn't like it, So I didn't do
that much. But but within two months after my first
rounds of treatments, things got worse. My penis shrunk more.
(32:19):
The upper half looked like a mousehead. It got so tiny,
and then it started curving, reversed candy cane toward my
belly button. And that was and that was that was like,
well now what? And then that was really really distressing.
So I went back to the doctor and he's and
I said to him, I said, well, did we didn't
we start too soon? Was it? You know? Because they
(32:41):
talk about the acute phase and then the you know,
the the what's the next phase after cute chronic, so
act to chronic. Yeah, so I was, you know, so
I did we did we just do it too soon?
And he's, well, maybe, so I did a whole other
round of eight treatments and that and that did that
(33:02):
helped a lot. And you know, I think it was
a combination of getting out of the acute phase and
getting you know, getting all these treatments. But that all
of that took eighteen months. Yeah, and then after that
I continued with the penis stretcher one or two hours
a day, had to be for four or five years.
(33:24):
I just kept doing it. And then of course I
wrote that this book came out, and a friend of
mine right here and I would moved back. We had
moved back to Los Angeles by then, and a friend
of mine who uh uh, you know, we'll call him Jack,
which is definitely not his name. Jack tells me, you, uh,
you got to you gotta go see doctor Mills. You know,
(33:47):
you got to get zyophlex. And I said, really, And
because I thought I was done what I had left,
And when when I came to see you, do was
I had a constriction band still a little bit in
the center of my penis, and it was enough so
that it felt like, you know, it was the shape
of you. And it was just like this tight band
that made my penis look like it was in two sections.
(34:10):
My eruptions were okay, you know, they weren't amazing, but
they were okay. And then I came to see you,
and you again we did the assessment and and you
were faster and easier than the first time I went around.
Speaker 4 (34:25):
And fast and easy.
Speaker 1 (34:29):
That's that's that's that that should be, yeah, that should
be right on the fore. But we only we did
four you know, like the treatments are A and B
whatever you did to treatment spirituat so we did four
with you, and I think it was like over five
months or or six months maybe, and and that constriction
(34:50):
band completely was removed and it has never come back.
And I've never had another look at Proni's again. In
the end, I mean, the beautiful thing about all this
is my penis is perfectly straight. There is not a
bend anywhere near it. There is no howard glassing is
what they call it. Right with that constrictions, there's no
(35:11):
hour glassing, there's no mouse head, there's no sometimes with
that hour glassing you could get you know, you'd be
erect below the construction and not erect above it. All
that's none of that trouble is going on now. I
am I am in my early sixties and my erections
aren't as strong as he used to be. But uh,
(35:35):
talk to me, you know, and most guys I know
at this age, you know, there's that's going on. So
but the good news is that I definitely still do
have erections, I still have sex, and I'm very fortunate
I feel how it turned out. You know, as doctor
Mahall used to say, he used to always say, nobody
ever died from Pironi's disease. He said that all the time,
(35:58):
and that was you know, kept it somewhat in perspective
because you know, this was not a death sentence. It
was just a you know, exceptionally inconvenient thing to have
to go through.
Speaker 4 (36:10):
You know.
Speaker 3 (36:10):
Yeah, well, I'll push back at John a lot because
we're very friendly and good professional colleagues. But but I
will say nobody's ever died from Prony's. But I've seen
another guys that would rather be dead than have prounies.
And I think you talked about a little bit of
the mental health component, which I never discount is that
these you know, some guys are so devastated. Yeah, you know,
they become shut ins. And thankfully you had good support
(36:32):
through it. And it sounds like you got good medical care.
Speaker 1 (36:36):
And not to be a bummer about it. Like a
couple of people in the Facebook group there were there
were two guys who suicides.
Speaker 4 (36:42):
There were yeah, thank you for yeah.
Speaker 1 (36:45):
Which is just you know, and now granted you don't
know what state they're in before they get Prony's disease,
but still whatever. You know, It's like I was in
an Okay state before I got Pronic's disease and I
got really depressed and drank a lot. So yeah, and
I didn't seem like the kind of guy who would do.
Speaker 4 (36:59):
That, so right.
Speaker 3 (37:01):
Yeah, But note, John, that's so important. I think I
talk about this a lot. And we I had a
study with some colleagues of mine from Karlinska Institute in
Sweden years ago that we publish looking at the rate
of suicidality and completion of suicide, and myth pronius is
something like three times greater than the general population and
men in general already, you know, we had other guests
(37:21):
to talk about the mental health aspect of men's health.
We're already really much better at killing ourselves than our
female female counterparts are. And so you put something like
this is one step over the edge. Then yeah, this
is why it's so important to have these conversations to
talk about it. And I think just you and I
having this conversation today, it's going to at least let
guys know there's something out there that you have a
(37:42):
support network, whether it's friends, family, or healthcare providers. And
that's you know, that is our PSA for today is
just that, you know, and then a lot of it
comes from the courage of you to be able to.
Speaker 4 (37:53):
Sit down and have the talk we're having. So thank
you for that.
Speaker 1 (37:57):
Yeah, no, no, my pleasure. And also, you know, I
think I wrote this in the book too, Like I
wrote something like and this is in my yoda, you know,
bit at my Yoda stage.
Speaker 4 (38:07):
But it was like.
Speaker 1 (38:09):
Some at some point I understood in life that I
was I am not my teeth and I am not
my hair, you know, And then I realized I am
not my teeth, I'm not my hair, and I'm not
my penis. Like I had to do that, you know,
and say like I can't you know, because you realize,
you know, especially hey, when we all get into eighties
(38:30):
and nineties, you know, there are going to be things
that are going to disappear on you in your body.
You know that are you know you could it could
be something as simple as, you know, a gallbladder, you know,
or or you could lose your sight, you know. I mean,
these things happen, and somehow I'm not saying, you know,
(38:51):
people talk about like you have to do this thing
to accept this big thing. I'm not saying I'm good
at it, you know, but I can say that I
am aware that this is part of the of dealing
with living is is these things that that you know
now granted, you know these things that will go wrong
(39:12):
eventually in life. Obviously, healthcare gets better and better every
day as far as what you know we're able to do.
But you know, these these things in life are are
little I can't say tests because I don't feel like
I was being tested, but they are lessons in some way,
you know, in some weird way that this accepting the
(39:35):
fact that you're you are a biological entity. And as
discussing as this sounds like when you're driving on the
street and you see a dead possum on the side
of the road, you know it's not much different from
your future ultimately, and it's a horrible thing. And I
can say these people some times and think, oh, don
shut up. You know, I'm trying to enjoy book club
or whatever. And I'm like, well, but that is the deal,
(39:58):
you know that there's that old uh well whatever. I
don't want to get too morbid here, but but but
it wasn't. But it wasn't. It wasn't. It wasn't like
this is not out of the ordinary of what happens
to people, you know. You know, I think that especially
in the United States, we're taught like you can have
it all and nothing bad's that were going to happen
(40:20):
if you had the right attitude, and you can you know,
you could Dale Carnegie your way to anything and all
these you know, all these things, and it's like, well,
actually the truth is, you know, look, look, okay, yeah,
I've been a creative person. So I've been a mostly
a writer, but I but for many years I was
an actor and a musician. I've done all these things.
(40:40):
And it's like like, like I can assure you from
from where I'm sitting, having lived right in the middle
of Manhattan, live right in the middle of Hollywood, and
having access to all these things, you know, I haven't
gotten everything I wanted? Who has really you know what
I mean? And and this kind of goes all you know,
and I am in all of people really who get
(41:03):
through life like totally healthy the whole way, get everything
they want. Uh, their marriage is perfect, their friends are brilliant.
I mean, I have you met many of these people.
Let's let's find them.
Speaker 4 (41:13):
You know.
Speaker 2 (41:14):
That's right.
Speaker 3 (41:17):
I've just been trying to win friends and influence penises
my entire.
Speaker 1 (41:23):
That's that's my sequel.
Speaker 2 (41:25):
That's the sequel put out there, but it's it's there.
Speaker 3 (41:50):
I don't think I've ever heard a more existential approach
to to Peroni's disease than what you've done here today.
This is this is exactly why I wanted you on
to have this conversation.
Speaker 4 (42:02):
Jordan, talk to us.
Speaker 3 (42:03):
You've been quiet, You've been You're still trying to figure
out how a possum has anything to do with Pironi's disease.
Speaker 5 (42:09):
I'm coming from all the needle talk now.
Speaker 4 (42:11):
I have a needle phobia a little bit. You talked
about the penis.
Speaker 2 (42:16):
Yeah, yeah, yeah, yeah.
Speaker 6 (42:18):
I mean it's beautiful that you have this support system
online and in your own home. You talked about Adam,
your husband so supportive, but you've also mentioned that partners
can still feel helpless. What do you think that partners
of men with pronis need to understand?
Speaker 4 (42:35):
Is there any advice that you'd have for them?
Speaker 1 (42:37):
Oh? Wow, yeah, I honestly that the big word is patient,
because if you're going to be patient, Uh, if you're
if you're partner with prony's disease, is being proactive and
taken care of it, and it will, it will get better,
probably it will, it will most likely proove And so
(43:02):
if you so, you have to be so as a partner,
you've got to be really generous and patient and understand.
Like I look, I mean, we all know this as adults. Here,
Like there's lots of ways to have sex, and there's
other parts of your body you can use for different things.
So you know, I'm not gonna be graphic here, but
but we we've all, you know, we we've all have
(43:24):
discovered different ways to enjoy each other's bodies. So do
that until the penis is back online, you know, like
find other things to do. And certainly you're you're a partner.
If they are in the mood, you can't you know,
want to force anyone, but if they still are feeling
a little bit sexy at times, you know, that person
(43:46):
with pron dises might be more than happy to oblige
and do other things for you with you, So patience
and generosity and then on the other side and to
understand on the other side, like yeah, things might be
a little different, but more patience and more generosity, I guess,
and flexibility yeah yeah.
Speaker 3 (44:05):
Both physical as well as emotional flexibility.
Speaker 1 (44:08):
Yeah yeah, yeah, yeah. So that's and I was fortunate that,
you know, Adam was great. I mean I have that's funny,
you know, like like my my, my joke about Adam
and so he's not going to close the cabinets, you know,
but my joke has always been, you know, uh, he
forgets to close the cabinets, but he doesn't forget to
go to work, you know. So that's very important.
Speaker 4 (44:30):
And he's if you had to choose, if you yeah,
I've got to do that.
Speaker 1 (44:33):
And and he was, you know, he was fantastic during
all this, So I was I was very lucky in
that way.
Speaker 4 (44:39):
So yeah, I love this.
Speaker 1 (44:41):
Yeah, yeah, I love that.
Speaker 3 (44:43):
Okay, so tell me this. We we always talk about
the show. You're probably going to be okay, and you've
done an entire episode of how this is not a
life sentence.
Speaker 4 (44:53):
By any means.
Speaker 3 (44:53):
And certainly if you're feeling like this is something that
is overwhelming and devastating and is questioning your existence, then
you know we have ways to help. But tell me
what makes you you on a daily basis? So this
is the other question I always like to ask all
my guests. Just you know, you're a fire survivor. Now
you made it through the Altadena fires, so you've had
a lot of perspective in your life, suffering from Prona's disease,
(45:16):
suffering from this devastation of the Adena fire. What did
you do during that recovery? What do you do every
day to make you you so that you can get
on with your day and be the best person you can.
What is your non a? What is the Dawn Cummings
approach to getting up out of bed in the morning.
Speaker 1 (45:34):
Yeah, yeah, well I'm very project oriented. So usually what
happens is is I'm I'm disciplined, I guess, and so
I do my morning routine like anyone does, you know,
eat breakfast, read the paper or whatever. But I'm more
of an afternoon worker than I am a morning person,
so I either have something to write or practice or
(45:58):
mostly write. But I all so you know, you'll see
the piano behind me. I do some music work too.
I have things I like to do. So where I'm
very fortunate is that I am drawn. I am very
strongly drawn to writing and doing music and being with
(46:20):
writer folk, theater folk, whatever. So I don't have to
I don't have to try too hard to come up
with a plan. Like the plan is kind of internal,
you know. So that's the good news. So that's what
I do. So I work on my projects in the
afternoon as usually, and then frankly, my evenings are mostly
(46:43):
you know, I exercise. I do exercise. I think it's
very good for mental health. I do do some form
of exercise five days a week. And my favorite thing
is to do with the I this four mile, very
e strenuous walk up here in Altadena because's lots of
hills up here, so and I do that twice a week,
and that's my favorite thing. Is I like to be outside,
but I do, you know, I do core work and
glut work and yoga, and I just I do think
(47:06):
being in your body physically and using your body every
day is absolutely essential for mental health, you know. So yeah,
so I I have projects to do. I take care
of my body as best I can. Like I said,
I don't drink. I'm not opposed to drinking, but it
doesn't quite agree with me. And I definitely again very
(47:28):
fortunately I have a husband and on it goes to work.
But he he's a good cook, and we eat really
healthy We eat really healthy food. So these kinds of things,
you know, and and and keeping. You know, I meet
these people who get to a certain age, you're going
to retire and move to some cheap town in the
middle of nowhere. I would never leave La, like like
I been here for decades, like this incredible support group
(47:52):
of friends. I don't. I would. I would be devastated
if I lost my my friend group.
Speaker 4 (47:59):
I would. It would be Yeah, I love it.
Speaker 3 (48:01):
I love the plug for LA is a place where
real people can live and be real.
Speaker 1 (48:06):
Yes, I love La. I mean people people who have
never lived here that they don't really understand what it is.
But I think La is amazing. I think it's an
amazing city.
Speaker 3 (48:15):
It's one of the world's most amazing and addictive drugs. Yeah,
you know it makes us do irrational things like mortgages
and taxes that are out of control. We have to
live through traffic, fires and floods and earthquakes, and.
Speaker 2 (48:28):
Yet I just keep needing more and more of it.
I know it is so good for me.
Speaker 4 (48:35):
I hear you, I hear you. I'm right there with you.
Speaker 3 (48:38):
Well, Don, you delivered on the mail Room. I'm so
grateful for your candor and your humor and your ability
to to just share your story in such a great
and entertaining way.
Speaker 4 (48:49):
Bent but not Broken is the is the book?
Speaker 3 (48:51):
And please, guys, it's it's it's really just truly a
terrific read. It's hilarious, it's also very heartfelt, and now
you get to know the author personally.
Speaker 4 (49:01):
So thank you.
Speaker 1 (49:03):
Oh it's all I'm looking at right now, and it's
only two hundred and twelve pages.
Speaker 4 (49:07):
There you go. Sure, yes, that's right. I do would
say it's.
Speaker 3 (49:10):
An easy read, but it's a good read. And I'm
grateful you're in my life. Don, thanks so much for
coming on the program, Jordan, thank you so much for
putting this together. And uh, and then yeah, let's take
it out with some little blues music with a long Transit.
Thanks so much to ihearten everybody my pleasure.
Speaker 4 (49:38):
Let's talk about it. Let's talk about the man, Hero.
Speaker 1 (49:46):
Let's talk about it. Let's talk about him, the man Hero.
Let's talk about it.
Speaker 2 (49:57):
Let's talk about the man.
Speaker 5 (50:01):
The mail Room with Doctor Jesse Mills was a production
of iHeartRadio. It was executive produced by Jordan Runtogg. It
was edited, mixed, and mastered by Beheid Fraser, and the
theme was provided by Long Transit. If you like what
you heard, please subscribe and leave a review. For more
podcasts from iHeart Radio, check out the iHeartRadio app, Apple Podcasts,
(50:23):
or wherever you listen to your favorite shows. This program
is intended for educational and informational purposes only. It is
not a substitute for professional medical advice, diagnosis, or treatment.
Consult your healthcare provider for any medical or other related
questions or concerns. The views and discussions aired on this
podcast are those of doctor Mills and do not represent
(50:45):
the official positions of UCLA or UCLA Health
Popular Podcasts
Betrayal Weekly
Betrayal Weekly is back for a new season. Every Thursday, Betrayal Weekly shares first-hand accounts of broken trust, shocking deceptions, and the trail of destruction they leave behind. Hosted by Andrea Gunning, this weekly ongoing series digs into real-life stories of betrayal and the aftermath. From stories of double lives to dark discoveries, these are cautionary tales and accounts of resilience against all odds. From the producers of the critically acclaimed Betrayal series, Betrayal Weekly drops new episodes every Thursday. If you would like to share your story, you can reach out to the Betrayal Team by emailing them at betrayalpod@gmail.com and follow us on Instagram at @betrayalpod and @glasspodcasts. Please join our Substack for additional exclusive content, curated book recommendations, and community discussions. Sign up FREE by clicking this link Beyond Betrayal Substack. Join our community dedicated to truth, resilience, and healing. Your voice matters! Be a part of our Betrayal journey on Substack.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.