Speaker 1: And we have with us now via phone. I believe
our friend Charles Maddox is there. Charles, is that you.
Speaker 2: Hey, how's everybody doing this morning?
Speaker 3: Good?
Speaker 1: Good, welcome, or I should say welcome back. You've been
on with us a couple of times.
Speaker 3: Before over the years.
Speaker 1: I think the first time. The first time was jeez,
it had to be at least five years ago. The
first time you were on, I think you had had
you put out the documentary about diabetes.
Speaker 4: Was that okay, yeah, yeah, yeah, that's been out.
Speaker 3: It's coming back to me now, yeah. Yeah.
Speaker 1: Well you're a busy guy. You do a lot of stuff.
So so welcome to the show on this Saturday morning.
Jenny is here of course as well. And the subject
of your newest documentary, Trial by Fire, is something that
obviously Jenny is she can relate to, unfortunately, because it
is about a very serious subject CRPS, complex regional pain syndrome.
Speaker 3: And let me ask you right.
Speaker 1: Off the top, Charles, what what was it that compelled
you to make this particular documentary Trial by Fire?
Speaker 2: Yeah, you know it.
Speaker 4: My mother suffers from from CRPS, and I remember she
had it probably about maybe about three two three years
maybe even longer and I would go see her, and
I really didn't have any understanding of what she was
going through. And she was was at a place where
you know, she would complain about the pain. Not once again,
I was ignorant to what CRPS was. I would just say, well, Mom,
maybe you should go to the gym, maybe you should
try to stretch it out. You know, you got to
walk it out. You know, things like that that you know,
really weren't going to help.
Speaker 2: And then one day I went over there.
Speaker 4: Now you know, she's a very proud Jamaican woman, and
I was there one day and this was you know,
like I said, she was doing with a lot of pain,
but you know, she was still mobile and so on
and so forth. And I remember her saying something about,
you know, wanting to maybe not be on earth anymore.
And I said, whoa hold on a second. That that
you know, my mother talked like this, you know. So
at that moment, I literally went online and went to
YouTube and just started you know, looking up stuff and
online looking up stuff. And I just bumped into someone
who I think had CRPS, and it was real bad
and they were talking about how bad it was and
about suicide and things like that, and that's when I said, wow,
you know what, I don't know what this is or
what this is doing to her. I get it now
because I saw someone else who was explaining it, and
I said, you know what, I've got to do something
about this. And it was kind of like I wanted
to kind of chronicle what she was going through, but
through chronicling or trying to chronicle what she was going
to go through or going through, you know, I had
to kind of reach out into the community to say,
you know, let me reach out, try to find other
people who were dealing with this, because I want to
tell this story, not just her story, but just overall
and see what was going on with this condition called CRPS.
And that kind of opened up the door and I
met some people in Tampa Saint you know, I was
living in Orlando at the time, so I met some
people who were.
Speaker 2: In Orlando area.
Speaker 4: Who were I have the kids of it, and you know,
they they said, hey, Charles, you know what would love to,
you know, help you tell this story. And that's that's
pretty much how it got started. I was really just
wanting to see what she was living through, but then
also met other people who were dealing.
Speaker 1: With it as well in terms of reaching out to
other people who are dealing with it. Was that, I mean,
how challenging was it to find those people? Because CRPS?
I mean the average person probably has no idea what
it is, and and it's not always uh, you know,
as as you mentioned, easy to diagnose. And I mean, Jenny,
how long is.
Speaker 3: The years before the diagnose yours?
Speaker 1: Yeah, you know, obviously, And and the thing is too,
it's it's such a conundrum. It's like when you have
an illness that is rare. Of course, it's it's harder
to diagnose because fewer medical professionals have seen that particular illness,
and there's a lack of research and whatnot because it's
you know, it's not again, it's not something most people
have heard of. You know, everybody knows what diabetes is,
but the average person has no idea what CRPS is.
So was it was that challenging finding these people?
Speaker 2: No, it actually wasn't.
Speaker 4: The thing is is, you know, there are some some
some great groups on social media, whether it's Facebook or
whatever it may be. In a particular person that I
ran into that was close to me, they had a
great support group and also they knew a lot of
other people, so they had resources from doctors to experts
to uh, you know, hundreds of people that were following them,
and that that kind of opened up the door that
I found other advocates like at that that time, it
was like Barbie Ingele, who was very vocal a few
years ago, you know, she still lives about CRPS and pain,
and it just started connecting. And because there wasn't much
advocacy on it, the fact that this film was being
put together was really you know, raising a lot of awareness. Now,
they don't get it wrong. It wasn't it wasn't easy.
There were there were a lot of nights where you know,
at times, because of the pain, it's easy at times
to to to.
Speaker 2: Shoot the messenger.
Speaker 4: So I had a lot of sleep with sleepless nights
at times trying to pull all this together and and
attacked at times. Uh you know, but but it was
it was it was all worth it. And there's some
amazing people out in who are dealing with c RPS,
and and you know, I still see, you know, what
my mother is going through daily and it's really had
taken her her whole, her whole life to be honest
with you now you know she's now bedridden and sad
to say, and uh so, it's it's it still inspires
me to want to get out there and change and
because also there aren't many other advocates that are known
or can do what what what I can do with this,
you know, these films, I kind of feel like it's
my it's my, you know, god given destiny to try
to continue to fight for people.
Speaker 2: With see RPS.
Speaker 4: And I've come to know so many and have so
much respect and love for them too as well.
Speaker 3: That's how we met.
Speaker 5: How you and I actually met is because of CRPS
and what you're doing with Trial by Fire is so
vital to get information out there, and unfortunately in America
we don't have as much information out there as they
do in other countries. When I was in the Netherlands,
my girlfriend had gotten into a bad accident and I
got to see an entire protocol that they have to
watch out for CRPS and people who get injured like that.
But we have nothing like that, especially here. But I
know that you're not just showing this here in the
United States. I know it's been seen in well over
what twenty countries. You've won numerous awards with this documentary,
and now what's exciting to me is that now it's
going to be carried on Netflix soon, isn't it. No, No,
Amazon Prime, Amazon.
Speaker 4: Prim hopefully the next few weeks, which is really exciting.
And No, you're right, it's probably been seen in over
twenty five countries and and I assume by by uh
who knows, I mean at this point maybe millions of people,
because it's still getting seen and because it's it's been
on PBS, it's been on you know, some great platforms already.
So it's it's very exciting. And we plan on even
with this new documentary that we're doing Drop by Fire,
to go into other countries to kind of examine what's
going on right now as.
Speaker 2: Far as that.
Speaker 4: But it you know, it's it's it's and I'll say this,
it's I wish I wish it was it was easy
to to to to get this done. I mean, you
think with all the people who are dealing with pain,
I mean, hundreds of millions of people are dealing with pain.
It's one of the biggest biggest businesses is the pain. Unfortunately,
and I don't know how many fad again.
Speaker 5: Chronic pain patients have been hurt so badly.
Speaker 4: Of course, of course, and what you're doing you don't know.
Speaker 2: Oh, I'm sorry, go.
Speaker 5: Ahead, I'm sorry, I'm sorry, go ahead.
Speaker 3: No, I was saying, she was just saying, what you're
doing is so vital.
Speaker 4: Yeah, yeah, no, And I was saying that you don't
know how many doors I'm knocked. Gone to try to
get some small funding just to get this done. And
you know, the sad thing, especially with CRPS is there's
there's no cure, so there's you know, there's no money
in that. So it's hard to find people who who say,
you know, yeah, well we'll get involved. I mean, I
even reached out to a lawyer. That's that's pushing trying
to fight for people with with c RPS. And and
you know, you got to figure that a lawyer who
might take one case and who could make you know,
hundreds of thousands, just not more than that, you know,
is is more concerned with you know, how much it's
gonna cost, you know what I mean, even even if
it was twenty five thousand dollars.
Speaker 2: But I mean even twenty.
Speaker 4: Five thousand dollars could do a lot for us, but
to get you know, some scene shot. But you know,
they can make a million dollars or if not more,
on one case, and if they bring in ten cases,
they could make, you know, a whole lot of money.
But so it's it's everyone is really in it for
for for the money, and unfortunately.
Speaker 3: That's healthcare one hundred percent.
Speaker 5: That's true. And one of the one of the key
treatments what's the RPS is kindamine infusions and for the
vast majority of patients are having to pay cash out
of pocket because they're you know, or fight. I've been
fighting insurance and I've got a provider that's allowing me
to use it, but I'm having to fight. And the
thing about this is too is yes, CRPS is rare,
but people with rare diseases are not. One out of
every ten people has a rare disease. And the light
that you're shining on this is extremely important in the
sense that a CRPS complex regional pain syndrome is the
most painful disease known to modern medicine, and as you said,
it has no cure. However, seventy percent of people with it,
including children, will consider suicide as the option because it
is that bad. It's called the suicide disease by the
medical community and has been called that for over two
hundred years, so it's been a disease that's known but
not known enough. And the light that you're shining on
this is vital to save lives.
Speaker 4: Yeah, yeah, yeah. And I've had a few people that
I've had to that just reach out to me, and
I've kind of had to say, listen, just don't do
that and if you have to call me personally and
let's talk. Over the years where I've literally had to
try to, you know, just talk people out of things.
And I remember of late and I like to be
real because you know, when when doing an interview, you
could always gloss over things and and make everything out
to be peachy and keen, but it's really not. And
I think that, you know, the people who are dealing
with this and the people who need to know about
it need to hear the reality that that's out there
at times of you know, what they're dealing with, because
I hear reality from them all.
Speaker 2: The time, and it's like, wow, I wish I could
do more.
Speaker 4: But I had to release a lady recently who this
was a couple of months ago, and she would always
say just the nicest things to me. She would just
I didn't know her, but she just reached out and
you know, she was dealing with CRPS and and I
remember before the last time where I spoke, so I saying, listen,
just you need anything, just let me know, and so
on and so forth, and no idea, you know how
bad things were. And then probably a couple of weeks later,
someone reached out and said, Charls, I know you and
so and so we're good friends and she had a
lot of respect for you, but you know she's.
Speaker 2: No longer here. And I was literally.
Speaker 4: Just just shook it because, like I said, she would
always encourage me. She would always say nice things and
reach out and send me a nice message. And you know,
to hear that was.
Speaker 5: Like, especially when we know that there are options and
things that can be done out there, but it's it's
money that gets in the way. It's it's lack of access,
denialed access the care or if you don't have enough
cash to put up front, you don't get it. So
you know, yeah, this isn't a serious thing to talk about.
And I'm glad that you're doing a second version and
you're talking about other areas of the world, because some
areas of the world are dealing with this better than
we are, and we could we could take a turn
out of their page, you know, take page out of
their book, I should say, of what they're doing to
help not only protect and preserve lives and save lives,
but preventative medicines that we in America really kind of
stink about. When it comes to preventative medicine, we stink.
Speaker 1: Well in a in a broader in a broader sense too.
In America, we just don't. Yeah, there's not enough focus
on preventative anything. When it comes to health. It's it's
all about, you know, waiting until you get sick and then.
Speaker 5: We have good sick care sort of, but not great preventative.
Speaker 1: Exactly, yeah, exactly, Yeah, that's and unfortunately some of that
I think it's just American culture. But but yeah, but
this is something in terms of CRPS. I mean, this
isn't like it's not like you can just you know,
as we were talking about, you know, there are treatments,
but it's not like you can just go to the
gym or take some vitamins. I mean, you have to
be able to you have to be able to have
access to to what you need, not to cure it,
because there is no cure, but but to try to
manage it as best you can.
Speaker 2: And yeah, and there are people who literally, I mean.
Speaker 4: Who are traveling from different parts of the world just
to you know, there's some treatment out here and for
the kiddymene in Florida, and literally you hear the stories
it traveling from, you know, whether it's Los Angeles, New York, Canada, Europe,
and some have to do this every few months just
to get a little bit of relief. And it's costly.
This is not this is not you know, a couple
of hundred dollars. This is uh, you know, some some
serious money to get on a plane, you know, and
and and pay for treatment, have to stay in hotels,
you know, have to rent cars on and so forth,
just to get a little bit of relief for you know,
three months.
Speaker 2: This is not easy.
Speaker 5: No, no, it's not.
Speaker 1: What was kind of the criteria Charles for in terms
of people who you put into the film, uh to
talk about this and were there some people who you
spoke with who you wanted to put in it. Who
maybe was there anyone who declined to be in it,
because some people are, you know, as much as they
might like to help and spread awareness, some people are
obviously just very private about their health. So I'm curious
what the criteria was and did you encounter anybody who
just said, no, I'd like to help, but I don't
want to be in the in the documentary.
Speaker 4: You know, I'll say this, almost everyone wants to be
and wants to share their story. Yeah, because and this
crosses color lines, is called crosses gender lines, as crosses everything.
I mean when when you know, when dealing with this,
you know, this type of pain, people just want to
tell their story. I mean, we get now hundreds of
messages where people are like, Charles, I just want to
tell my story, please, I have a story to tell.
And it's it's to the point now where it's like
I'm so you know, focused on trying to raise some
money to get this done that it's like listen, I've
got to reply and listen I will get back to you,
because you know, we have so many messages that it's
and some of these messages are like very long, where
you know it's going to take me a few minutes
to just read through the one message. But I understand,
you know, what they're dealing with. So we're going to
have to get back, take a day and get back
to everybody. But no, everyone wants to share. Even back
then when we were shooting the film, everyone wanted to
and wanted to share. And I think in many ways,
because you know, like we just talked about this being
called the suicide disease, that that a lot of people are.
I mean, you know, you can't even me and you
we don't deal with what they're dealing with. And we
can't understand being in pain day and night. I mean,
can you imagine stubboring your toe and and the pain
of that and having that day and night, and now
you take that and amplify that a hundred times where
this is running through someone's body. We can't understand what
that is. So I mean, when you think about that
and and people are thinking about, you know, maybe taking
their own life, they want to share. There's a lot
of people. I just I just had a young lady
a few days ago send me a message and she
contacted me through WhatsApp. She said, Charles, I don't think
I could do this anymore. And she's got I think
two kids, and and I'm like, listen, just hang in there.
And you know she's got a fiance or husband, and
you know, this is wow. I you know, words can't
even express what what what they're dealing with and how
we need to fight for this. And then this is
why I fight for it, because once you know, once again,
if if if I don't, I don't know who will.
Right Oh, thank god I'm able to have the resources
as far as getting the message out there and putting
a good story together and so on and so forth.
You know, I wish it was easier, you know sometimes
I you know, like I said, I'm banging my head
trying to understand, you know, why it's so hard to
be able to get a project like this together. But
you know, I understand that this is the world we
live in, and but we keep fighting and and you know,
hopefully we're working on going to Italy to highlight some
of the treatment that they have over there. So we've
been talking to that clinic over.
Speaker 5: There, and that if administered early enough, it can halter
or reverse or put into remission torps. I used to
know a woman who had a fourteen year old daughter
that took her to Italy for the treatment. It did
work for a number of years, and then I guess
it came back went back to Italy for an additional treatment.
But it has to be done early, early, early, Like
by the time we knew that I had CRPS, it
was too late for that to work for me, and
to access it here in the United States. I don't
think you can. I think it's impossible. It's not even
like an option for us.
Speaker 2: Yeah, I think it's only in Italy. Oh.
Speaker 5: People have mortgage with their houses to get, you know, done,
anything to get their loved ones over there to try it, ye,
you know, just just to have something to try. And
I do want to say, I mean, this is a
serious topic. It is difficult to talk about at times,
but this is why you're done this documentary and why
it's so important to talk about these documentaries and get
that information out there. But if you are having any concerns,
or you're not feeling too hot today, or you need
some help, please remember you can dial nine eighty eight.
Nine eight eight is the suicide and crisis Lifeline, and
there are people there that can help you. So there's
always a voice out there, don't forget nine eighty eight.
Speaker 3: Yeah, yeah, yeah, absolutely, And.
Speaker 4: I think too as well. Part of me, you know
why I fight too as well, because you never.
Speaker 2: Know what might be around the corner, and.
Speaker 4: You want, you want folks to hang in there and
hold out hope that maybe there is some treatment out
there that that you know, I won't have to mortgage
a house or fly across the world to get done.
You know, hopefully there is something that that.
Speaker 5: Part of my hope too is with you doing this,
I have hope that maybe that gets some of the
people up on Capitol Hill to pay attention and approve
treatments that are working for people with the RPS. But
I do you want to also bring up because Charles,
you've done a lot of really great advocacy work, especially
in the realm of the Forever Sick, and you've also
done work in highlighting diabetes and type one diabetes and
type two diabetes. I know you did a documentary series
on that as well, and I wanted to make sure
that our listeners heard about that.
Speaker 2: Yeah.
Speaker 4: Yeah, yeah, We've done some great shows, and you know
we have the first docuseries we did doctor reality series.
Speaker 2: Was called a Verse who shut in Jamaica.
Speaker 4: And featured you know, people living with diabetes. And I've
done a documentary called The Diabetic You and a couple
other projects on diabetes, and so it's it's been very
powerful and and you know, now that I'm even talking
to you, I'd love to follow up once we get
off to as well, because there probably is some other
things that we could be doing, whether it's starting some
sort of you know, online petition where we have you know,
a few thousand people signs to things that could be
brought in front of some legislation or or some more
awareness that maybe you could help me with and help
the community get out there, so we can kind of
make this more movement because we have to force the
hands of these companies. We do, these pharmaceutical companies, they've
got to open up their eyes and take account and
at least, if nothing else, help support the people, whether
it's even with treatment options.
Speaker 5: Oh exactly, look at what's happening now in our community.
Lotos snow truck Zone is a medication that's working for
a lot of people, what's the RPS and small fiber neuropathy,
including myself. However, the pharmaceutical company that makes Nell truck
Zone won't make it in the low doses that people
like us need it because it's not profitable for them.
They only make it in the family high dose. So
all of us have to go to compounding pharmacies to
get the medication, which means we're paying one hundred percent
out of pocket and it's not cheap, you know, and
have it made that way because insurance gets to take
a walk because it's compounded. Pharmaceutical company goes not enough
money in that for us, So we're not going to
make it, you know, and you're you know, you're left
with either you know, no money, no med or whatever
you're going to do to get the med yep nop exactly.
Speaker 4: Maybe maybe we need to get a petition against or
for that company, right so maybe they can open up
their eyes and say what is this? Who are these
people and maybe take a different look at it. I think,
you know, collectively is a community while it's a rare disease.
I'm sure they're I don't know how what the number
is but of CRPS people. But any petition with you know,
fifty sixty to seventy thousand signatures might make that company say,
you know, what.
Speaker 2: We may need to.
Speaker 4: Take a look at this or at least address this
in some form of fashion.
Speaker 1: Right right, exactly exactly, Charles. It is already approaching the
top of the hour. We need to begin to wrap up,
but before we run out of time, I want to
make sure the people know where to find the documentary
Trial by Fire, and also too where they should go
to find your other work, your other documentaries, and anything
else that you want our listeners to know about. How
to keep up with everything that you're doing.
Speaker 4: Definitely, and I really appreciate this. My website is probably
the best place. It's BELLA and l eMedia dot com.
B L L A A and D L E E
L l eMedia dot com and you can always just
google my name Charles Maddox. I'm not hard to find
Trial by Fire, like I said, is on YouTube right now,
on my on my UH on one of my pages,
the Future of Health Network. But probably will more directed
toward the Amazon Prime so that we can really get
people focused there. And who knows, maybe you know, with
some great views on Amazon Prime, they may be interested
in doing something bigger with us regarding CRPS, and so
we really want to push that initiative, and and and
for those who are listening, do remember that collectively, you know,
as an army of people, we work better because we
have to share. There there are people who are literally
just now seeing try by fire after so many years.
And we have to make sure that when we get
this opportunity that we share, we share, we share, We
ask our friends to share, We ask the friends of
our friends to share. And even though at times a
lot of us don't get the support that we would like,
just keep pushing, just keep share and get the message
out there. And I think if we work together at
least we can cause some some some attention and some
eyes to be put on on some things so that
we can try to get some some more help and
resources out there.
Speaker 1: Yeah, absolutely absolutely all right. Well, Charles Maddox, thank you
so much, my friend. It's wonderful to have you back
on the show. Always great to speak with you, and
and we we really love and appreciate what you're doing.
Speaker 3: And uh, keep it up, man, keep it.
Speaker 2: Up, thanks so much, and have a good one.
Speaker 1: Absolutely, Charles, thank you, Take care about it all right.
That was Charles Maddox, filmmaker and also a celebrity chef
and actor, and he does a lot of stuff by
the way he did yeah, not just you know, obviously
we're focused on the documentary with with that conversation, but
he's a busy guy. He's got a lot going on,
so you should definitely check out everything that he's doing.
Speaker 5: Absolutely, and he and see I follow him all the
time because he does home mutch in the chronic illness
area and shine such a great light on it, especially
with that series he did that serious he was talking
about on diabetes is excellent and they talk about things
that they do to you know, help stay healthier, diet
and so forth. So it's it's good to have those conversations. Frankly,
and Trial by Fire one hundred percent excellent movie to watch.
If you haven't seen it, please see it, share it,
help spread awareness. The more people that are aware and know,
the more we can do to try and help them
prevent people from losing their lives.
Speaker 3: Yep. Absolutely, And again.
Speaker 5: I want to just remind people if you're having a
hard day or you're needing someone to talk to, please
remember nine eight eight is a great number you can call.
You can find help and support there and no shame.
Speaker 3: Nine eight eight yep absolutely