In this deeply moving episode of Biz Bites For Thought Leaders, Anthony Perl sits down with Sheryl Jones, a woman who has turned a frightening diagnosis into a powerful mission of awareness and hope.

Sheryl was diagnosed with emphysema, a form of COPD, and told she might have only 7 to 10 years to live. That prognosis could have defined her. Instead, she reached out to the Lung Foundation, learned to live mindfully, and discovered she could live well into her 90s and beyond. Now she is determined to help others walking the same path.

This is a different kind of thought leadership conversation. It is about leading with ideas, sharing lived experience, and creating awareness about a silent disease that affects 1 in 13 Australians over 40. Sheryl explains what COPD really feels like, why so many people go undiagnosed, the loneliness of living with an invisible illness, and her dream of launching her own podcast and running retreats for people living with lung disease.

Whether you live with a chronic condition, care for someone who does, or simply want to understand what real resilience looks like, this conversation will stay with you.

--

SHERYL JONES BIO:

Sheryl Jones is a COPD awareness advocate living in South Gippsland, Victoria. Born in Cardiff, Wales, she emigrated to Australia at 13 and has since travelled the country extensively, worked as a trainer, and spoken internationally on education, including an address to a committee in the House of Lords. Diagnosed with emphysema in 2014, Sheryl has become a passionate voice for people living with chronic lung disease. She works closely with the Lung Foundation Australia, has spoken at symposiums and to politicians in Canberra about the realities of living with COPD, and is now working towards launching her own podcast to create awareness and build a supportive community for others living with the condition.

CONNECT WITH SHERYL JONES:

Contact details available in the show notes. To support Sheryl's mission or discuss sponsorship of her upcoming podcast, please reach out through the show.

LUNG FOUNDATION AUSTRALIA:

If you or someone you know has a persistent cough, is often short of breath, or you hear them "sawing wood," please reach out to the Lung Foundation Australia. They offer a free risk-checklist questionnaire and access to nurses who can provide information and support.

Website: https://lungfoundation.com.au Information and Support Centre: 1800 654 301

DON'T FORGET...

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#BizBitesForThoughtLeaders #COPD #LungHealth #ThoughtLeadership #PodcastingForBusiness #HealthAwareness #PodcastsDoneForYou #InvisibleIllness #AustralianStories

Anthony Perl: Welcome to a special

edition of Biz Bites for Thought Leaders.

Now, thought leadership is

not always about being the most

knowledgeable person in the room.

Sometimes it's about being the

bravest, and my guest today, Cheryl

Jones, lives with a silent disease,

and rather than stay quiet and just focus

on her own health, she's chosen to

speak up, to share her story, and ask

for support to get her message out.

There's a lesson in here for every

thought leader.

Be brave, put yourself out

there, and share your journey, your

insights, and your story, because you

do not have to have all the answers now.

Authenticity always wins.

I'm your host, Anthony Pearl.

Let's get into Biz Bites for

Thought Leaders with the remarkable

Cheryl Jones.

Hello, everyone, and welcome to another

episode of Biz Bites for Thought Leaders.

I'm delighted to have Cheryl

with me today.

We're going to take you to a different

kind of place for this program,

because it's about thought leadership

in a different way to what we normally

cover, I would say, in the program,

because this is really going to be

get you thinking about your health.

It's gonna get you thinking about the

things that impact people, and how

you need to make changes, and how

you need to lead from the front even

when you are the person at the center

of what is causing some of the issues.

So, that's probably a bit

of a mysterious lead-in, but Cheryl,

firstly, welcome to the program.

Sheryl Jones: Thank you

Well, what we like to do

on the show always is allow you to

introduce yourself.

So Cheryl, why don't you explain

who you are and what you're about?

Okay.

My name, um, as you said, is Cheryl.

I'm 67 years old.

I am retired.

I live down in South Gippsland.

Um, I've been retired, well, sort

of… I had to false retirement type

thing because of, of what my health.

Um, although I'm leading a very good

life at the moment because I've been

mindful, and I'm hopefully doing

the right thing.

I've been in Australia

since I was 13.

Um, we emigrated from Wales, from

Cardiff, actually.

Um, love Australia.

I've been around Australia

three times.

Absolutely love it, and it's God's

best-kept secret.

I've done a variety of work.

I've been a trainer.

Um, I counted urea bags in

Western Australia.

I was Fred Bassett over there.

So, um, I like to try things.

Um, I've, uh, also spoken in the

House of Lords.

When I went over for a holiday on

education, they found out that I was

going over there.

Um, I spoke in Baroness Cox's

committee.

Only supposed to speak for

20 minutes.

I spoke for 40, and I had them in tears.

Um, that was the time back when we

had Dr. David Kemp as federal minister.

Um, he used to liaise with me.

Um, it's not the teachers'

fault, it's the teachers' teachers,

so we found.

And I did that for a number of

years and then, of course, we had a

marriage breakup, and then I moved

to the mainland.

Um, it seemed for health reasons

that Queensland was better.

Um, my son was also a chronic

asthmatic when he was a child, and I

had asthma when I was born, so I, I,

I've grown with it.

Um, so Queensland, because of the

mild weath- well, the nice weather,

um, was a lot more suitable for us

to live, and we lived there for a

number of years.

Um, and then until, um, when was it?

2014, um, I lost, um, my father

and my mother, I lost her in 2009.

So, um, you live a very different

life when you, when you've lost

your parents.

You become really, really independent

then, which is good.

You have to.

I also got diagnosed in 2014

with emphysema.

Um, though it did lay dormant for

a number of years till 2020 and I

came down here.

I accidentally didn't know, but

I was, um, putting bark into sacks,

and I'm selling them because

we had a couple of trees felled

in the property and that caused

brittle asthma.

Uh, brittle asthma is very different.

You can't walk two feet and

you're puffed out.

Um, it's not emphysema.

It is literally brittle asthma.

That was terrible, and had that for

about 18 months, then that subsided.

Kept on coughing.

Had more tests.

Emphysema had raised its head

So I was really panicking then,

um, 'cause where I come from, my

grandfather died at 56 with emphysema.

My mother was diagnosed with

emphysema.

Yes, they were both smokers.

Even I was a smoker, but, um, gave up

in 2014, mind you.

They also say that because we were

born with asthma, it can lead on to

COPD and emphysema.

So, um, of course, I was in panic

mode because back then we were led

to believe that if you were diagnosed

with emphysema, you only had seven to

10 years to live.

So you can imagine what I went through,

um, 'cause I'd just come down and my

son was down here, had a grandson.

Um, I was reconnecting with

all my old friends because I used to

live in Melbourne i- in the past,

um, having a great time down here,

and then all of a sudden this.

Y- you don't know what to do.

Um, you're scared you're going to die.

Um, and I remember seeing what

my grandfather went through.

I do not want anybody to see

what, um, myself in that position

in, when it comes to the end times.

So fortunately, I had a very good

doctor, and she said, "Cheryl, you

ring up the Lung Foundation." I

rang up the Lung Foundation, and

I can honestly say they saved my

life, literally.

Um, I was with the nurses for

about 18 months.

They used to call me.

We would put plans in place.

Um, they taught me how to be mindful,

and no, it's not seven to 10 years.

You can live till you're 90.

You can live till you're 100.

So that's what I intend to do,

live way past 100

But there's so much to

unpack in, in all of that because

it's been quite a story, and I

love how you've summarized that,

uh, very quickly.

And, uh, I should tell everyone that,

uh, Cheryl and I have had a couple

of conversations, so this is…

uh, there's a lot to explore here

in what's, uh, been a, a very

interesting journey.

Uh, I want to start back to the

beginning, if I can, and talk about, you

know, that move, li- moving from,

uh, from Cardiff, from Wales, and

moving to Australia.

As a 13-year-old, it's kind of an

awkward age to be moving, right?

Because you've got friends

and everything.

You're settled there.

So it's a big move to come

to Australia.

What was that like and, and how

did that have an impact, do you

think, into, you know, for things in

the future for you?

Um, it was very sad for

me because I had to sell my horse.

Um, we had to give the dog away

because we didn't realize we could

actually take dogs.

Um, we gave all our records away.

Um, so yeah, for me, I was doing

so well at school.

Um, I was in the 92 percentile, um,

in high school.

Um, it was devastating,

absolutely devastating.

Um, however, I did enjoy the

time on the boat.

Uh, we were on the boat for five weeks

going over because the, all the staff

went on strike in Tenerife Island.

So we all had an absolute blast.

Um, so the boat trip was really good.

Uh, we ended up going to Tasmania

'cause that's where a lot of my family

were, had already moved to Tasmania.

Um, for the first three, two, three

years, um, I tried to stowaway on

a couple of big ships, um, Japanese

ships, to try and get back to Wales,

and of course, I got caught.

Um-

Um, look, I, I didn't do drugs or

anything back then.

Um, we weren't drinkers, so I

didn't get drunk, didn't do drugs.

Yes, I might have smoked but,

um, I was still reasonably sensible.

Um, and I wanted to try everything,

you know, first for everything.

So going on the Japanese boat

wasn't a good move.

So my mother, um, sent me to…

tried to send me to Western

Australia, um, to be with my cousin.

And from Tasmania, I got off in

Melbourne, and instead of getting

on the flight going from, um, Melbourne

to Perth, I just walked out of the

airport and had a great time for

about two weeks.

I went on trains and I went to try

and find people from the boat.

And back then it was safe.

It's not as safe anymore.

Um, so they did finally find me

and I did have to go back to

Western Australia unfortunately.

Um, but then I did leave home a

few years later.

I just couldn't settle.

So I ended up going around Australia.

Um, I left Mum a Dear John letter

and I put my thumb out, "Let's go."

So that was fantastic.

Um, however, I still did have asthma.

Um, I always had to make sure that

I had my Ventolin spray with me.

Um, so that was really good.

Um, didn't mean to… Sorry,

I'll, I'll just go back a bit to

the schooling.

Um, my first year nobody could

understand a thing I was saying

because as Welsh we talk very fast.

Um, they had to assign me with an

English girl who said, you know,

"Slow down and, you know, we'll

get you to meet some friends." So

the last two years of school was,

um, interesting.

I was put forward a, a year because

in Great Britain, I don't know

if we were more advanced but, um,

well, we, well, we probably were.

That's why I was put up into grade nine

instead of grade eight, so I was very

young for my age.

But I was tall, so I managed to

take that off.

Um, so yeah, so okay if you go

a bit forward.

So I left, left home, went round

Australia three times, ended up

settling, um, and just sort of

getting on with life basically, um, doing

a variety of things.

I can't just do one thing.

I've got to do jack-of-all-trades

type thing.

Worked for Medibank Private.

Um

secretary Girl Friday back then.

Loved horses.

Um, although with asthma, I

was allergic to everything, um,

horses, dogs, cats, and I was

a animal lover.

Had four horses.

Had to take Sudafed all the time, um,

or be prepared to be on the nebulizer

that night.

I wasn't gonna give up my, my love for

animals in any way, shape, or form.

Um, so then we mo- I, um, met my,

um, husband, moved back to Tasmania,

um, had children, um, over there.

Then we moved back to Melbourne

because the work wasn't really all

that good over there, so we moved

back to Melbourne.

And then my, uh, my son was really

chronic with asthma.

Uh, he had to have soy milk.

You couldn't give him different

colored cordial.

He would have asthma straightaway.

We used to sleep in our, um Uh,

our tracky dacks, because we'd be

calling ambulances all the time.

So it was really q- quite sad.

Um, I had to have all his teddies

put in plastic bags so that

there was no dust.

Um, he couldn't go to many children's

parties because twisties, Cokes,

ice cream would set him off.

That was really sad.

But we did end up having an open home

for him, and all his friends used to come

and play with him, so that was fine.

Um, he was born … When he was first

born, um, I didn't see him for a couple

of days 'cause he was a bit blue.

And basically from a few months

of age, he w- he was allergic

to absolutely everything.

So he was a little bit of a nightmare

to bring up.

Um, he also had sleep apnea, where

he'd stop breathing.

So that was, yes, that was very

interesting time.

I'd be driving along, and I'd look

at him through the window, and oh,

my God, no, he's stopped breathing.

I'd have to scoot over, get him,

shake him, lift him up, and he

would come back.

Um, we had tests and, yes, you know,

when you sigh, you go, you get that

really big sigh, you do stop breathing

for a few seconds.

Carl would stop breathing for 18

seconds, which was 10 seconds too long.

Um, so that was really interesting

for the first few years.

Um, fortunately, our German Shepherd

would sleep underneath his cot

and come and get me before the sleep

apnea machine would go off, which was

fantastic, so that was really good.

Um, and then we moved back

to Melbourne.

Then I had my daughter, and

she is as fit as a Mallee bull.

Nothing wrong with her whatsoever.

No asthma, no eczema, no allergic

to anything.

It was like, wow.

You know?

So two total opposites,

total opposites.

A- and to this day she is very

healthy, very fit and healthy.

Whereas my son, who's now 39,

um, only has 40% of his lungs.

He has chronic COPD, but he is

very healthy.

The only thing he can't do is run.

Um, he eats superbly.

He used to be a chef.

Um, he used to … He's a trainer to

go to the gym, but he's got other work.

So he's very strict with his food,

and because he's strict with his

food, he is very healthy himself.

Doesn't smoke, doesn't drink, so

I'm really pleased with all of that.

Um, so during my journey and doing

a lot of things, there were a lot

of people that I came across that

did have asthma.

Um, but it was sort of like the

silent disease.

You sort of stayed home when

you had it all.

So it's like, you know, that,

that was fine.

Um, you didn't know, people didn't

know much about asthma, didn't know

anything about COPD.

Um, so a- as time went on, um, I

did go back to uni when I was 39, then

realized that my husband and I really

weren't compatible, so there was a,

a divorce there.

Um, I was very strong, very

independent again.

Um- Got a number of positions, which

was really good.

In charge of quite a few telemarketers

at the time.

Became a trainer, then moved back

up to Queensland because it was

better for my son.

Um, so what can I say from there?

From there we all grew up, and

we basically did our own thing.

Um, and like I said, back in two, uh,

2014, I actually, um, was diagnosed

with, um, emphysema, which is COPD.

COPD is actually a group of

lung diseases.

Um, there's, there's two of them.

Um, one is emphysema and one is chronic

bronchitis, but we can go into that

a bit later on.

Um, what I did notice was that

there really wasn't much help

for COPD or, you know, chronic

lung disease.

You were diagnosed with it, then

that was it.

Bye-bye.

See you later type thing.

You know, just keep on checking in

with your doctor.

Um, it didn't affect me too much

in Queensland.

It was great.

I could still go out dancing.

Um, very active person.

Um, I used to do 10 kilometers a

day with my dog.

Um, had a few dogs back then.

So the two dogs would stay home.

They were small.

They couldn't do the five kilometers,

so, um, I would take my other dog,

which was great.

Um, and then like I said, I moved back

down to Melbourne, and that's when

the COPD rose its head again

Anthony Perl: I think this is

a really, uh, important point

to maybe pause for a minute and tell

everyone that part of the reason that

Cheryl and I are talking is that

we'd love to help Cheryl get, uh, an

ongoing podcast of her own, because I

think this is such a critical message

to be sharing with people and to

be understanding what it's like to

be living with, uh, COPD, but

also what the opportunities are.

I think this is-- we're gonna touch on

some of these things as we go through the

podcast today, and I think to me, thought

leadership isn't just about getting

your business in front, it's about

leading with ideas and simple things,

and I think being able to share

stories and learn, uh, from each other

'cause I think one of the fascinating

things that I just want to touch on

that I know you spoke to me about

off air, which is a- about the fact that

there are, there's plenty of research

and things going on, but there's a

lot of the obvious stuff that perhaps

doesn't get noticed.

And so you've already been able to

be at the forefront of bringing some

of these things to people's attention.

Uh, I know you told me y- you attended a

symposium last year where, you know, you

made them aware of some of these things

that perhaps they're not aware of.

Sheryl Jones: The symposium

was in June.

It was last November.

I went up to Canberra, and I

was-- I spoke to a few politicians and

the main speaker on how, um, living

with COPD, what it's like, 'cause

people don't know.

Because you see, look at me now.

I look fine, don't I?

You know?

Absolutely.

Nothing's wrong with me.

Absolutely nothing's wrong with me.

That's because I'm sitting down.

Don't ask me to get up and walk

into the bedroom.

Don't ask me to make the bed.

Don't ask me to sweep outside

or vacuum.

Um, definitely don't ask me to

go walking in the shopping center.

You know, that's a no.

And we need to create

this awareness because people

do not realize what it's like.

Um, also, also you've got to be

very mindful of where you live,

what you eat, what you do.

I'm very mindful of things now

because I want to live till I'm

ninety, you know?

So I've moved into the country.

Um, and that's what I need to do is,

is create awareness with people.

So the symposium was in June, and what

that was, there was a few of us that

have the disease and we of course, went

to the symposium.

It was a lot of researchers getting

together, telling us about or telling

everybody about, um, their research.

And through that, I found out about an

injection, wait for it Drumroll, COPD.

Could not believe my ears.

Yes, there's actually an

injection for COPD.

I was so excited about that, so

of course, on the breaks, I would go

up to the professor from Western

Australia and ask him all about it,

which I got a fair bit of information.

So research has come along so far.

Oh, and by the way, I didn't actually

tell you, I am on another injection

at this point for asthma, and

I've had it for four months now.

Once a month you have it.

The only thing is, though, it wanes

off round about three weeks, and

I hit the wall.

Literally hit the wall.

So I'm hoping in a couple of months'

time to transgress or go onto this

COPD injection.

Fingers crossed.

I think, y- you know,

this is interesting that you, you have

to go to some of these things to

hear about some of these opportunities.

But equally, there's things that those

that are living with this are

able to inform the researchers on,

because they tend to look, I, I guess,

at, at higher level things and not get,

uh, not, maybe not aware of some of the

day-to-day symptoms and impacts that

people are having.

Well, no, that's right.

We've actually brought something

up to that.

Um, the group of us there, we

all realize that when we're having

flare-ups, um, even a small flare-up

like maybe, um, you know, walking

down the road, we start sweating.

So you will see a few people going

around with fans like this in the

middle of winter.

You know, my head is dripping with sweat.

I just thought it was one of those

things, but no, it actually gets worse.

So this is called the silent disease.

So people cannot see, u- unless

you're literally sawing wood all the

time, that's what I call it, it is

very hard to see.

So what the symposium did was

actually show us there's m- uh,

research out there which is excellent,

and then we've asked a couple of people

to look into how we sweat, and can there

be some research done on that?

Um, so that w- so that was absolutely

excellent.

Absolutely superb.

It's, we, we can't go

past this without explaining, tell us

what sawing wood is.

Oh, saw- sawing wood.

Um, when you've had an asthma attack,

when you've got constant emphysema,

that's what I call sawing wood.

You can hear somebody all the

time, so you know they've either

got asthma, um, or they've got

emphysema or chronic bronchitis,

one of the two

I think the fact that

this is, as you've described it, is a

silent disability because people, you

know, can't see it so obviously, and

that makes it hard.

I mean, there are a number of these,

uh, things that fall into this category.

And I think we, we still as a society

still coming to terms with that and,

and understanding that, you know,

just because we see someone that

looks completely fine doesn't

mean that they actually are fine.

And, and, and h- and, and I guess

that's the case is, how do you

grapple with that?

Is it something where you feel

the need to tell people about it?

Uh, you know, at what point do you--

does that come into the equation?

Sheryl Jones: Um, no.

Um, I actually don't tell anybody,

only a few.

Well, I am now, um, because I

was on Facebook and did some, um,

promoting for the Lung Foundation to

generate some more money, so people

have seen me on the foundation.

They know I've got it now.

Um, but what I find is when I

do tell people, um, the majority

of people treat me differently.

"Oh, can't come here.

Don't invite her here.

Don't ask her to do this.

Don't ask her to…" No, no, no, no, no.

Do not do that.

Just treat… Just, okay, don't ask me

to run a marathon.

Um, don't ask me to do anything quickly.

Um, let me bide my time a bit, but just

treat us normal, because we are.

We- we, you know, we can hear, we

can, we can see.

We can still do things.

Like I said, when I'm sitting down,

everything is great.

Um, so there is a badge actually

out, and it's a sunflower, and,

um, it just says, "I have a silent

disease." Now, I'm gonna try and get

some of those so that I can actually

promote it, and people can see it.

They can either have the, um, the

sense to come up and say, "Well,

what type of disease do you have?" Um,

a- and sort of go from there.

Because, again, one of my main reasons

for hopefully doing these podcasts is

to create awareness.

Um, living with COPD is not a death toll.

Um, you can live till you're ninety

or a hundred.

You'll probably be taken out with

something else.

Well, that's fine, you know?

And there is now, there is now treat-

treatments, and it can be prevented.

So they've come that far in doing

things, which is just amazing.

So this is where we need more

research done.

Um, and the Lung Foundation are

absolutely superb.

Everybody that thinks they've

got it, their, their friends,

if they know of somebody, just get

them to go to the Lung Foundation.

There's a test, and then you can

actually ring them and talk to them

and talk to one of the nurses.

And like I said, they saved my life.

Literally saved my life.

I think what's, uh,

valuable for people to understand here

is that people are living sometimes

with this and don't recognize that there

is this, and even the doctors may

not have recognized that there is this.

I know you, you were telling me

off air about, uh, someone locally

that you've helped direct towards the

Lung Foundation as well, because you

recognized some of the symptoms.

So, so talk to me about, you know,

firstly that process of, of having

those conversations with someone and,

and bringing that up and turning

them towards, uh, getting help.

Well, um, down where I

live now, um, I have a shop, um, that

I work voluntary in, um, three days

a week 'cause it's a tourist area.

And I start… I had this client come

in regularly to buy some dog treats, and

he was sawing wood.

Any case, when I got to know him,

I said, "How come you're sawing wood

all the time?" And he sort of looked

at me and he said, "Oh, it's just one

of those things."

I said, "No, it's not just one of

those things." I said, "You're always

out of breath." I said, "Please go to

your doctor and ask him to test you.

Ask him to take at, at least an X-ray.

Um, go to the Lung Foundation and see

what they say." So he ended up going

to his doctor.

Um, I did tell him about the,

the yellow spray that I'm on

for emphysema.

Um, I take it twice a day and it helps.

It helps, um, n- make, not things

get so worse.

So I told him about that, so he went

to his doctor, he told him about that.

The doctor did some tests or something,

and he gave him the prescription for

that medication.

He came back and saw me the next

week, and he said it's the best he's

felt in 15 years.

So I was so pleased that I was able to

do something for somebody, and now

he comes in the shop every week, week.

And, and it's just amazing.

I've seen him change in the last,

uh, six months that he's been on

the medication.

He's not as, um, out of breath.

Um, still sawing wood a little bit,

but after sawing wood for 15 years,

and only now having medication for

it, he's doing pretty good.

So, and, and look, he's 78.

So if he can get to 78, I'm

sure I can too.

Maybe, no, actually older because I've

got medication

You know, I, I think

there's, uh, it- there's so much

in there that's, you know, I think

this is the thing, isn't it, that, that

people are going around with this

kind of a disease not recognizing it,

and the fact that it takes someone like

yourself to be able to point that out,

I mean, he'd been living with it for

quite some period of time, and hopefully

now he's on a course to a much

better lifestyle as a result of it.

Uh, but it's almost opportunistic

that you saw it.

So I, I think, you know, obviously we

want doctors to be better educated,

but we want the, the public to be

better educated to recognize it

in themselves or recognize it in,

in other people.

Well, well that's right.

And, um, there are quite a few adverts

at the moment, like if you've got a

persistent cough, um, especially

after three weeks, if it is still

there, go to your doctor, ask the

questions, or go to the Lung Foundation

website, take the questionnaire

there, ring up the nurses there.

You need to do something because

it's not only you, it is your family.

'Cause believe you me, you don't

want your family to see when you

get really bad.

If you can stop the progress of

that, that is major because it is, it,

it's so, oh, it's absolutely awful.

Um, I remember seeing my

grandfather and I was only seven, um,

back in the days though, he used

to smoke a lot and of course he was

having his oxygen mask there and

then a smoke there, oxygen, smoke.

But he was still really bad.

At 56, he shouldn't have gone.

Should not have gone.

Um, but he did and it was horrific.

Absolutely horrific.

Yes.

So you don't want to get that far

now that there is medication

out there.

Uh, what I actually find too is it's

that a lot of people in the regional

areas that don't have the support,

um, doctors down here, if you want

to see a doctor down here, unless

your limbs are hanging off, there's

a six-week wait.

How can you wait six weeks?

You have an asthma attack, you can die.

I, I can't fathom that.

I, I really can't.

Six weeks to see a doctor.

Fortunately, I still see my doctor who's

two hours away, but we do eHealth.

I would not leave her for

all the world.

So, um, I, I quite often have eHealth

conversations with her and then when

I go up, um, to Cranbourne and

Carrum Downs, I then go and

see her as well.

So, um, but down here, six-week wait

to see a doctor.

My, that's w- that's way too far.

We've got to do something about that

Yeah, it, it's look, a-

and it is, it's a massive problem

in Australia.

I think, uh, it's, you know, often

if you're living in the cities, you

don't tend to think about the, uh, more

remote areas of Australia, of which

there are many.

And, you know, even what you just said,

jumping in the car and, or, you know,

or public transport, whatever it is,

and spending two hours to get to a

doctor, that in and of itself is, uh,

hard to believe.

Yeah.

Uh, you know, a- a- and, and it's sad

that in this day and age that we still

have this issue.

So, you know, again, we're-- I, I, I love

what you're doing, um, Cheryl, because

I think this is about making people

aware of what it's like living it,

but making people aware about some

of the problems in the system and

the things that we need to change

and to need to get on top of.

And, you know, simply having

access to medical professionals in

your area and being able to get an

appointment, like ideally that day

or the next day.

You know, and I think that's one of

the things that we forget in, again,

if you live in a city-type area, that

there are 24-hour medical centers that

you can go to and pretty much get an

appointment whenever you want, so.

Sheryl Jones: Oh, that's right.

Um, but if I had to go somewhere in

the nighttime here, um, the closest

town that's only 20, uh, 20 minutes

away apparently is private run,

the emergency department, and

I would have to pay $150 before

they saw me.

I sort of think, um, how does that work?

Number one, it's 20 minutes away, would

I last 20 minutes?

Number two, I'm there, I cannot

breathe, you want me to go to the

bother of getting out my card and

paying you 150?

I can't breathe.

For, for goodness sake, see me first.

You know, $150?

Um, unless I then go to Wonthaggi or, or

Leongatha, which do have hospitals, but

that's a 40-minute drive, you know?

So something really has to be done

down here, because, um, there's over

50% of people with COPD symptoms that

do not know they actually have it.

50%. Now, now that's incredible.

Um, now I've got a whole heap of

figures here a- and it's incredible.

I'll give you one figure, which is

$24.98 billion.

That's a total annual cost,

including 4.85 billion in lost

productivity for people with COPD.

The, the amount of money is huge,

absolutely huge, so

surely we should have more research,

more clinicians, more care, more

awareness, and we can cut that

cost down, and then people will

be able to live.

Live a longer life

What are we talking

about, Cheryl, if you've got

them in hand?

What are the sort of numbers of people

that actually have been diagnosed

with, uh, with COPD, you know, uh,

whether you've got them in Australia

or globally?

Well, Pritish, I, I've

basically got, um, you know, how many

people have it, not necessarily

been diagnosed, because we need to

bring a spotlight to COPD because

it needs to be a case for change.

Anthony Perl: Um- Yes

… Sheryl Jones: people are beginning to

recognize it, like I said, but it, it's

still very hard.

Like, within the Lung Foundation

there is a peer group support,

um, which is fantastic because,

um, you need to find your tribe,

um, if people know that terminology.

You need to find a group so that

you can speak to, and that has only

just started, been going a- about

12 months now.

So therefore, we're still very new in

actually getting treatment and

people surviving better because

all this research is being done.

Um, I've been told that going to lung

rehab is absolutely paramount to you

getting, finding it easier to live with.

I haven't been yet because I've got

a psychological block with it.

Um, I've been meaning to go

for two years.

I'm scared to go because I don't

want to see somebody there that's

really bad because it'll bring back

the memories of my grandfather.

So I've got a real psychological

block with that.

Um, but I'm, I'm being pushed, not

pushed, I'm being supported, "Come

on, you gotta go," and I've got three

referrals to go and I haven't,

and it's only 20 minutes away, so

I've really got to do something within

the next few months, I think, um, because

it will help.

Very much so.

Um, physio helps.

Um, there are a lot of things out

there that help, but people don't

know about them

Okay, just as we, before

we move on, I know I've just pulled up

a couple of figures here from, from out

of the Australian government, and,

and we're talking about half a

million people in Australia over,

over 45 that are, um, estimated to be

living with COPD.

And, and the costs are, as you say,

uh, 1.8 billion was spent on, um,

on the condition.

Uh, that was in '23, '24.

So, you know, and, and, and they

estimated something close to 7,500

deaths a year- Yeah … that are as a

result, uh, of this.

So this is something serious that, uh,

perhaps doesn't get the attention

that it deserves.

And I, I, I think, you know, what

I love about you is that you could

be just worry about yourself.

Yeah.

Anthony Perl: Definitely.

But you've taken it upon yourself

to, to do more, and as we said,

we'd, we'd love to get a podcast

up and running on a regular basis.

So definitely looking for support

and sponsors out there who can

help with that, and we'll have

contact information for Cheryl in

the show notes.

But tell me what's driving you to get

help from other peop- to help other

people as well?

When I found out that I

could live longer than seven to 10

years, well, I said, "Right, I've got to

do something about this." I love life.

Um, I'm an optimist, so I really wanna

help other people.

I don't want them to be alone with

it, because I, I live by myself.

I've just got my dogs.

It can be lonely.

It can be scary.

And I just want people to reach out,

just to know there's somebody at the end

of the phone that you can talk to.

If you can't talk to them, okay,

you can text them.

Um, there'd be an email.

You can text them because, okay, you

may be having an attack, but there

could be somebody there at the end

of the phone.

Do you know how, how hard it is when

you're having an asthma attack or you

have an emphysema flare-up and there's

nobody around and nobody knows?

It is horrific.

Uh, you can't breathe.

Like, you can't breathe.

You've got nothing.

You're dead.

Like, hello?

Um, unfortunately, I've actually had

such a bad attack once, uh, many, many

years ago, um, I actually collapsed.

If my husband then hadn't performed

CPR on me, I would be dead.

Totally dead.

And it was basically because I had a

wood fire and it was … There was

no air in the room, and I woke up and

I couldn't breathe, and I didn't have

the energy to take my asthma spray.

So, um, it can be fatal.

Just asthma in itself can be fatal.

Flare-ups with COPD are very different

to asthma because unfortunately

with me, um, my asthma medication

doesn't work.

If I've got that, how many

other people are like that?

But guess what?

I could ring up somebody from

the peer support group because I've

got their number.

I'm going through a bad time.

I can say, "Can you just be on the other

end of that phone?

Just sit with me." You know?

Um, we're not alone.

So we've got to be able to

do something.

And I just wanna reach out because,

like I said, people wouldn't

know I was sick.

And you don't know who's got emphysema

because they just might go out

when they're not even sawing wood.

You could be next, you know, standing

next to them a- and they're going

home to a lonely house and they're

having a flare-up by themselves.

How sad is that?

I … No, not on my watch, that's

not happening.

Not happening.

But what I want to be able to achieve

with the podcast is not only living

with COPD, is

that- I want to get together enough

money so that we can have retreats and,

um, like respite, but people who've

all got COPD or asthma, they can

all join together in warmer weather,

but not really hot weather, maybe

Coffs Harbour or somewhere like that.

To have something like that, it would

just be, it would be a dream come true.

People would relax, um, because like

I said, we all found out when we

all met, um, at the symposium, the

ones that had, um, emphysema, that, um,

we start sweating.

Now, we didn't know that before until

we all got together.

Um, I also told them we'd be having

a, um, um, a Zoom meeting that I

always used to have peppermints on me.

I used to give my son peppermints, and

of course, as soon as you start having

an attack, you put a peppermint there

or a brown bag.

Um, when I was six years old, my mother

would put my head out the window and

then give me a brown bag to breathe into

because we didn't have the nebulizers

back then, you know?

So you, you really had to be careful.

Now we do.

We have all the help in the world.

I've got a tiny little nebulizer

that I can carry around.

Absolutely magic.

Um, but like I said, it doesn't

work as well as what it used to.

So on my watch, I want people to

listen to this podcast, get in

touch with the Lung Foundation, know

that there is hope.

It can be treated, and it can be

prevented if you get there fast enough

or soon enough.

Don't get too fast because you're gonna

be sick, but it can also be prevented.

If that is the case, got to do

something about it.

And just to emphasize

to people, it's one in 13, uh, people

over 40 in Australia that have this.

So it's a significant amount

of people, so the chances are

that we all know somebody that is

wrestling with this.

Correct.

And so the opportunity to get

more information out there is huge.

And I think what we want to get into

a little bit is, is, uh, a couple of

things about living with it, um, from

your perspective.

I mean, you've talked a little

bit about moving around, and how

much of a decision around environment,

you know, and, and, and moving out

of the city area, uh, was dictated

by, you know, living with this?

And, you know, what is the

ideal climate?

Is there an ideal climate to be in?

Uh, well, put it this

way, I've now found the ideal

climate for me.

People are different.

Um, South Gippsland is fantastic.

Even though it might get cold, uh, when

you have the head sweats, might only

be nine degrees and I'm walking

around in a T-shirt.

Um, it's fantastic.

Whereas I found in Queensland

the humidity was too much.

Um, so I think probably, yes,

um, everybody's different,

but I found it great down here.

I also found the country is better

simply because you don't have the

busyness of the city, the busyness

of the cars.

Um, 'cause one of the reasons why

we actually do sweat is because

we have to spend so much energy on

breathing properly.

And again, y- you're in, like, Dandenong,

going to Dandenong markets, the people

there, it's like, oh my God, it, it takes

your breath away.

So I've got to concentrate on

breathing to get to where I want

to go, and that is really hard because

then I've also got to look at what's

happening around me.

Um, years ago that didn't matter, I

could just drive.

Now I think, "No.

Where am I going?

What am I doing?

How long am I going there?

Can I walk that far?"

When I go to the airport to go

home to Tasmania to see the rest

of my family, I can't walk to the,

to the airplane.

I have to get one of those

little buggies.

Um, I don't want to be pushed in

a, in a wheelchair because by the time

I get down there, I would have had,

you know, I couldn't breathe, you know,

and they'd send me back home again.

Um, even in hospitals, um,

you've got to walk upstairs.

It's, it- it's just too much.

You know, you've got to find a lift

and these people who design these

supermarkets and hospitals, they

put a florist right next to the canteen.

I used to be so allergic to

flowers and smells, I couldn't go

to the canteen.

I'd be going like, like that

by the time I got to the canteen.

It's like, hello.

Supermarkets.

You… A lot of supermarkets put

the, the smelly things like the, um,

for your clothes and everything down one

aisle and exactly the s- opposite

is the dog food.

I've got dogs.

I've got to run down, grab and,

and run, come back because I can't

handle the smell.

That's gonna set off a flare-up.

So living with CB- COPD is so hard,

unless you wanna stay home all the

time and basically do nothing, which

you can't do, which is ridiculous.

So it is a daily thing.

Um, where are you going?

What are you d- what is the weather like?

Can't go out if it's cold weather.

Um, cold weather's not too bad, but

then it's, it's the, um, it's the

wind that takes you back, you

know, totally, um, which is not good.

So you need to stay in a warm

environment and something with

no pollution.

There's no pollution down here.

So you need to be mindful,

really mindful.

If you can't get to the country,

then at least look at your house.

You know?

Um, a- and be very mindful of

where you live.

Um, is there clutter around?

I love clutter, I really do, but

there could be too much clutter

because who's gotta clean it?

You know?

And the dust it can create.

So you've got to be mindful

all the time.

You can't just get up every morning

a- a- and go.

You sort of wake up, "Right, what

is it like today?

What's the weather gonna be like?

What am I doing today?

All right, let's get up first and

see what's going on." So a totally

different lifestyle.

Totally different

Talk to me a little

bit about, um, uh, you know, the

loneliness of living with this because,

because it is, as you said, a silent

disease, and in many cases, people

don't, I guess, want to be a burden.

But that can make it quite lonely having

this, even if you are surrounded by

family and friends.

Oh, it, it can because

they don't know what it's like

not to breathe.

Um, I remember people in my family

watching me on a nebulizer 'cause

unfortunately I was the only

one that had it.

Um, and then afterwards they

expect you to be okay and go and

do everything.

Well, no.

Um, it, it can't happen like that.

Um, it's lonely 'cause it's scary.

Um, it's scary because you can't

breathe, and there's nobody to give you

that assurance to hold your hand.

Um, there's nobody there like that.

A- and that is … Yeah, look,

sometimes I'm in tears because

I'm lonely.

Um, but then I, I can't ring up people

then because I can't talk to them because

I'm having an asthma attack or a

flare-up, you know.

Um, so I text.

Um, I text and then, you know,

um, somebody will ring me and, and

they'll just stay on the phone with me.

It doesn't happen very often, um, but

I've got a plan.

Uh, and a couple of my girlfriends,

they know if they haven't heard, heard

from me in a few days, they will call

me, "Right, what's up? Have you had

a flare-up or have you been doing?"

Um, and I can, I can sort of talk

to them like that.

Fortunately, I live right across the

road from a shop, so if I run out of

food, I can just go across the road,

which is fantastic.

Um, so I reckon anybody should

near live near a shop that's got,

could got this because it's, I

can still have my independence.

I don't have to depend on people to

go shopping for me.

Um, sometimes they've had to come

with me because I stand at the front

of the aisle and I say, "Right, I

need that, that, and that, and it's

down that aisle." So I'll stand at the

top while they go down there and get

it for me because if you've seen how

big those aisles are in the shopping

center, you know, like in Woolworths

or Coles, you look and then you

say, "I can't walk down that aisle.

You know, I got the trolley, but there's

no way I can walk down that aisle."

So, um, having help i- is good, but

when you don't have help and you're

standing there and people are looking

at you thinking like, "Why is she

standing there looking at that?" I

say, "I haven't got time to tell you.

Just leave me alone."

You know?

Um, it's hard.

It, it's, it's not easy.

So like I said, I'm gonna try and get

some of those badges that says, "I have

a silent disease." Um, but then again,

I'll watch to see how many people will

actually keep away from me, which is

what I don't want.

You know, sort of like, I don't

have a dise- well, I don't have a

contagious disease.

It is not contagious.

Um, another thing about it is that

it's a disease that you know

is going to kill you, which is sad.

Um, yeah, that really brings tears

to my eyes at times.

Um, you've had my-

You, you know.

You know what's gonna happen.

So I try to not to think about that too

much, and to just sort of generate

a- a- and make support workers,

peer group workers.

Um, I have a couple of people that come

and help me in the house, um, which

is really good.

Um, but then again, um, I think in, in

that area with NDIS, aged care, anything

like that, the people that come to

your house need to be trained on COPD.

They, they can't come … If they

don't know about COPD and they

come in, they sort of think like,

"Okay, why is she sitting there?"

"Oh, do you wanna come help me

do…" "Well, I, sorry, I can't.

I can sit down and I can watch you, but I

can't come and help you." A- and that is

really hard to get through. They sort

of think, "Well, she looks really good.

Why can't she come and help me?"

You know?

So that in itself is frustrating,

and it's hard.

And then when they go, you think,

"Oh God, they must think I'm stupid."

You know?

Um, how can I explain to them

what I've got?

And if I do go and help them, I could

have a flare-up, and you've gone and

I'm here by myself.

You know?

Are you gonna sit here with me while I

have this flare-up?

I don't know how long it's

gonna last.

Because flare-ups are different.

You know, coming back f- from the

symposium, um, for two weeks, all I was

doing was coughing.

I had to just cancel everything.

I had a really bad flare-up.

Why?

I don't know.

Maybe I caught something, because

fortunately where I live, I have very

little interaction with big groups of

people, and that is another mindfulness

that I've decided to myself.

I can't go into big shopping centers.

Um, can't go into big shopping centers

and meet the girls for coffee, 'cause

I don't have the breath to do it, but

I also don't wanna pick up anything.

Like my doctor once said to me, "You'd

be really good with babies because

you'd be one of the safest people

that you, um, they could go, they could

go with, because you don't catch

anything 'cause you don't go anywhere."

So, um, yeah, so it, it very hard.

It is not easy.

But I am very positive.

I want this podcast to work.

I want us all to go on retreats.

If you're feeling lonely, I want

you to pick up the phone.

Okay, email.

Don't always pick up the phone, 'cause

I won't give you my phone number

because I might not be able to answer

it one day, and you'll wonder why.

I'm fine.

I, but I've got a bit of a flare-up

and I can't talk.

But email me, text me.

You are not alone

Anthony Perl: Cheryl, this has

been a fascinating discussion.

We've covered a lot of territory.

Um, we're definitely going to include

lots of information in the show notes

for people to get in contact with

you, uh, and to get in contact

with the Lung Foundation as well.

That's, uh, important that we do

put that information there as well.

Uh, just to wrap things up, there's

normally a question that I ask my guests

when they come on the show, but I'm

gonna modify that question a little

bit for, for you because you don't

fall into the standard category

that we have of people on the show.

But I think nevertheless

this has been an enlightening

discussion from someone who actually

is a thought leader, uh, in terms of

what you're trying to do and achieve.

So on that note, w- what is it

that you want to try and achieve

with the podcast?

Sheryl Jones: Awareness.

Create awareness.

Um, I want to have two

podcasts a month.

It will be a subscription

podcast, because with that money

that we generate, I want to do the

retreats for people to get together.

Uh, people from South Australia or

from West Australia, we all need to get

together once every couple of years.

Um, so two podcast, I, and

I say two pod- only two podcasts

because I don't have the energy

to do any more.

Um, so I've got to be very

careful with that.

But it's creating awareness in the

country or regional, in the city.

You might know somebody

that's got it.

Do you hear people sawing wood?

That's a sign that they've

got something.

Um, so creating awareness because

there is treatment, it is preventable,

and you can live a long time.

So creating awareness, um,

is the biggest thing that I want

to be able to do.

Achieve, sorry.

I look forward to

trying to help you on this journey

together, uh, as part of Podcast

Done For You.

For now, Cheryl, thank you so

much for being part of the Biz

Bites for Thought Leaders program.

Really enjoyed your company and hearing

about your story.

I really appreciate you being so open

and sharing and, uh, we wish you

luck, and I know you and I are gonna

stay in contact for some time.

Sheryl Jones: Thank you.

And everybody, again,

don't forget to check the show

notes for details and information,

and don't forget to subscribe so

you never miss an episode of Biz Bites

for Thought Leaders.

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