April 14, 2026 • 56 mins
David talks about being both physician and patient, what it takes, what it means and how you do it.
My favourite quote of the episode is "Hope is the exact ingredient that is, one of the famous, Neurologists from the Netherlands, named Bastiaan Bloem. He had a patient who talked about, we talk about dopamine replacement in Parkinson's, and Bas's patient, coined the term hopamine. If you give people hope, that really, can open up the world for them."
- Parkinson’s Australia https://www.parkinsons.org.au Parkinson’s Western Australia https://www.parkinsonswa.org.au Perron Institute for Neurological and Translational Science https://www.facebook.com/perroninstitute/ Perron Institute https://www.perroninstitute.org
Listen
Watch
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:05):
Welcome to Forrest.Chat, where wetalk about individual endeavor in
Western Australia, what it takes,what it means, and how you do it.
I'm your host, Paul van der Mey, andin today's episode we are talking with
David Blacker about transitioning frombeing a physician to being a patient.
David qualified as a specialist around2002 and worked mainly as a stroke
(00:32):
doctor and did some research and around2018 was also diagnosed as a patient
When he transitioned from being aclinician to being more research based.
Welcome to Forret Chat, David.
Thanks, Paul.
Good, good to see you againafter meeting you in Bunbury.
(00:54):
Yes, we caught up at the Indie Author bookFair, and I interviewed you at that time.
Uh, I also found out about you,David, before that, I have a, a
friend who, is actually sufferingfrom Parkinson's Disease and they had
told me about you even, even beforewe got to the indie author book Fair.
(01:14):
So.
David, what sort of physician are you?
Well, I'm, I'm still in.
Neurologist, but, uh, I don'treally practice clinically.
I, I still have registration.
but uh, with my diagnosis ofParkinson's Disease, I, I realized
that I was gonna have to change, uh.
My, my role's a bit.
(01:36):
for, for most of my career I was a,a stroke doctor and, uh, always had a
little bit of research going as well.
but with the, the Parkinson's and theslowness that causes and a number of the
other problems that come along with it,uh, I was concerned that I wasn't able
to do, do my best and, give the patients.
the, the quality that they needed,because of my own problems.
(01:59):
But, uh, I had the rare opportunityof being able to, uh, shape my
career a little bit and, swingmore over to the research side.
And more recently as I've cut down onclinical practice completely, uh, to, uh,
advocacy and support and, it's been a,a, a rare opportunity, I think to, Assist
(02:19):
not only going through the same experienceas me with, with, with Parkinson's, but
also to hopefully have some influenceon my colleagues to make them understand
it's like to live with a chroniccondition like Parkinson's disease.
Can you give us a bit of an idea of, whata neurologist is actually doing on a,
(02:40):
Yeah,
a clinical sense?
Uh.
is a physician who specializesin diseases of the the nervous
system, that's very encompassing.
It includes the brain, the spinalcord, the muscles, and the nerves, so.
We tra train in internal medicine,which covers all the, medical type of
(03:01):
conditions in the systems of the body.
And then you specialize in,in the, the nervous system.
And so it's about aeight to 10 year process.
often a, a neurologist is, is, uh,um, mistaken for a neurosurgeon.
So a neurosurgeon is also a doctorwho deals with diseases of the nervous
system, but that's typically diseases thatrequire surgery, like tumors or trauma.
(03:27):
I'll deal with conditions that usually aretreated by medications such as epilepsy,
Parkinson's disease, multiple sclerosis.
There's quite often an overlap, andwe often have patients that we share
in between neurology and neurosurgery.
The other overlap is often withpsychiatry, where that deal with,
(03:49):
the psychiatrist is a doctor whohas medical training, who then
specializes in mental diseases.
And traditionally it's been thoughtthat, you might view, Neurosurgery
is dealing with the hardware of yourcom brain computer, neurology and
psychiatry deal with the software.
So it's a nice analogy and neurologykind of sits in between the two.
(04:13):
So we have patients who have psychiatrictype of presentations and we have
patients who have neurological problemsthat are, have a a cause that's.
for example, a, an epileptic seizuremight be caused by, uh, uh, the first
sign of a, a tumor irritating the brain.
uh, we'll often work with theneurosurgeons in, in concert.
(04:36):
So what a a, a neurologist does.
typically we'll divide them intohospital-based and outpatient
type of specialties, and that,again, depends upon the illness.
for illnesses like stroke and meningitis,and acute epilepsy, you'll get
taken by an ambulance into hospital.
And so there's a lot of neurologistswho mainly do hospital based work,
(05:00):
there are other conditions, forexample, migraine and multiple
sclerosis and Parkinson's disease,which are more in the outpatient realm.
the, the typical day today work, uh, uh, is, uh.
In the hospital is, would berounding on your patients.
Uh, seeing the new people whocome in, working out treatment
plans and, and looking after them.
(05:21):
and also attending clinics and,Seeing consultations as well.
So often in the hospital, a patientmight be admitted to another team
such with another problem like heartattack or a gut problem, they may
have, uh, neurological complicationsof those illnesses, uh, including
(05:41):
things like confusion or headache.
or they may have, um.
An existing condition, like multiplesclerosis or Parkinson's disease that
gets worsened because of another sickness.
So, it's a very encompassing,specialty and I, I have no, uh, regrets
having, having chosen it, think, uh,the brain is the most fascinating
(06:06):
thing in, in the universe, really.
And, uh, I, I recall asa. Neurosurgical resident.
In the first few years after you finishyour, your, your basic medical degree,
many young doctors will circulate throughdifferent specialties in the hospitals.
And I had the opportunity to endup doing about six, six months of
neurosurgery and, uh, you know,assisting in operations and things.
(06:30):
And to actually see that the brain,expose and think about the brain
thinking about another brain.
And it is just mind blowing really.
Almost has a, a meta.
Physical type of,
It, it feels like that.
Yes.
Yes.
I was talking, uh, just the other daywith my wife about the amazing things that
(06:52):
the brain is able to do even beyond the.
Capacity.
We have to think about it really.
But also the fact that, uh,unlike a, a computer or ai,
it's just, it knows what to do.
And it's, I'll sayinstant on or always on.
You're never having to, apart frommomentary delays, it's really up and
(07:17):
ready to go all the time, isn't it?
There are, there are, um, philosophicalconstructs about whether or not, your
brain actually sort of predeterminesthings even before you're aware of it.
And, um, there's so, so, uh, you thinksomething's gonna happen, your, your
(07:37):
brain's already pre predetermined it.
So if you think you're gonna hityour golf shot into the, into
the lake, uh, you probably will.
you need help to get it out, I'm sure.
What about the event then when you foundout that uh, you suddenly needed the help?
It wasn't a sudden thingand uh, Parkinson's.
(08:01):
Develops slowly.
And uh, I I certainly, by the time Icame to a formal diagnosis with one
of my colleagues in, in 2018, I waspretty certain that that's what I had.
uh, it followed a process that took,took many years, in fact, and retrospect.
(08:22):
One of the very first symptoms Ihad was something called a exercise
induced dystonia, in my foot.
And that's a, a, a disorder of movement,which is triggered after exercise and
it's, it's like a twisting distortion,irregular contraction of the muscles.
and it, it's really due to lossof control of the brain over the
(08:43):
muscles, That initially only occurredafter large amount of exercise,
for example, running a marathon.
uh, in the early to mid two thousands,I, I started doing marathons, for
fitness and to keep my weight down.
in fact, I've done theBunbury Marathon at one stage.
and, uh, in the process of doingmarathons, I, we get this, this, this
(09:08):
feeling come on in my leg, uh, aftera couple of hours of running and.
When, when it occurred the first time,thought, oh, you know, a lot of things
happen to your body, particularly inyour middle aged and a very good runner.
Um, you hit the wall and, there's alot of, a lot of bad stuff and a lot
of mental activity to get through it.
(09:29):
so initially it was probably mixedup in amongst all of that, but.
Unfortunately, I then startedto develop the sensation.
It was like a, a tightness andstiffness, almost like a cramp, but
not necessarily a. Uh, anything to see.
um, that would, instead of occurringat two hours, it'd be an hour and
(09:50):
a half, and then after another sixmonths, it'd be down to an hour.
so within a few years, I was findingthat I, I really couldn't run for
more than about five or 10 minuteswithout my leg starting to twist
and become quite uncomfortable.
And then I would even noticethat if I was walking fast or
walking up a hill, for example.
And so.
(10:11):
I, I had some tests and x-raysand saw specialist and things.
I then started to realize that, that,that, that this was, could potentially
be the forerunner of Parkinson'sdisease, there's absolutely nothing
else for, for, for many years.
None of the other thingssuch as small handwriting,
slowness of movement or tremor.
But those things all began toemerge from about 2016 onwards.
(10:34):
And, um.
Initially I thought, oh,maybe I'm imagining it.
it's certainly not an uncommonscenario for, for doctors to, uh,
be a bit, um, sensitive to symptomsand over-diagnose themselves.
I perhaps went a bit theun uh, the other way.
the, but what, the real, realturning point was that, um.
(10:58):
When I was examining patients in theclinic, I could tell that, uh, the
first thing I could tell was my, myhandwriting was becoming, uh, more
difficult and doctors get accused ofbad handwriting and probably rightly so.
but what I could see was thatif I was seeing a patient in the
clinic who I'd written notes on.
Six, 12 months, two years ago,I could actually see the change
(11:18):
in my handwriting progressivelybecoming smaller, which is a very
characteristic feature of Parkinson's.
And it was also actually becomingquite difficult for me to write out
the forms and lots of in the erabefore the electronic medical record.
Um, there's lots of writing todo, but the real kicker was when I
was examining Parkinson's patientsand they were actually moving.
(11:41):
Better and quicker than me.
So one, one of the common tests thatwe do is in neurology to look at the
integrity of we call the motor pathways,is of rapid alternating finger tapping.
And I'd actually noticed that this ismy left hand, is the non-dominant hand.
This is not very good for, for a podcast.
(12:01):
Uh, but, and my right hand is actually, mydominant hand is slower than my left hand.
And it's actually muchmore difficult to do.
then when I noticed that patientswere actually going quicker than
me, I thought, oh yeah, this lookspretty, uh, pretty much like it.
So, and then I put it off a littlebit longer 'cause I had, I was
(12:22):
thinking about who am I gonna see.
a very small community in termsof, I think there's about 55.
Active neurologists in with, not allof them being adult neurologists met.
Some are pediatrics and some are, uh,uh, just in private practice or, anyway,
so there's a, a limited number ofpeople and, uh, didn't want to really.
(12:47):
Sort of put pressure on one of myyounger colleagues who'd been a trainee,
didn't really wanna have someonewho I was in the same office as.
So I, I thought about it verycarefully and I, I, thankfully
I made a very good choice.
I really have terrific relationshipwith my personal neurologist.
so I put it off a bit untilI figured, figured that out.
And then the kids were finishing highschool and in their last year and.
(13:12):
Wanted to sort of let them get throughwithout taking, uh, any, any additional
pressure for that last year, 12.
and so I finally came to it and, uh, what.
Was really a surprise was despite thefact that I really, uh, was expecting
the diagnosis, uh, I was really struckby how, how it did still hit me hard
(13:35):
and how emotional it did make me feel,and how upset I was and, It changes
your perspective on things a lot.
You, you, you have a, idea of whatfuture's gonna be like, perhaps a
bit idealistically, and then all ofa sudden that's put un under threat.
But, um, almost at the same time though,what also I realized was that if I'm
(13:58):
feeling like this with the knowledge thatI have and the background that I have,
it like for people who don't have that.
Advantage difficult it must be.
And was really amongst that, that Ithink the spark to, do what I've been
doing over the last few years, which istrying to make things easier for people.
Going through that experience of gettingthe diagnosis and then living with
(14:23):
it, and recognizing the opportunitythat gave me to make a big difference.
And, uh.
When I was still working,uh, and seeing new patients.
Um, if I was to make a, a diagnosis ofParkinson's disease with someone and,
and then almost in the same breathbe able to say, I've got it too.
(14:44):
That's incredible power.
Just, just amazingly helpful tool toto, to assist and, to demonstrate that.
medication and exercise, you, youcan actually re regain some of
the things that you've been losinggradually over the course of, of
several, several years because it,it really does creep up on you.
(15:06):
And there've been some studies thathave demonstrated that there are
symptoms detectable, uh, and, andsigns detectable for as much as seven
years before the clear diagnosis.
there are.
Even other symptoms that may goback sometimes decades, such as
loss of sense of smell, and alsoa peculiar sleep disorder called
(15:28):
REM sleep behavioral disturbance.
So when we sleep, are differentphases of the depth of your,
your your, your, your sleep.
we get to dream, dream sleep,and when, when we are dreaming.
Most typically, our musclesin our limbs are paralyzed.
So the breathing muscles andthe the muscles of your eyes,
(15:52):
uh, are, are still working.
but the, the limb muscles are supposedto be paralyzed to stop you leaping
around and, and acting out your dreams.
And, uh, uh, people can have that as it.
disorder, uh, appearing decades before theclassic symptoms of slowness, stiffness
(16:12):
of the muscles and tremor emerge.
it's thought that maybe 90% ofpeople who have that sleep disorder
eventually get Parkinson's.
So we're increasinglyrecognizing that there may be
what we call a prodromal phase.
And I should also mention, uh, unexplainedconstipation is another thing that
often can proceed Parkinson's as well.
(16:33):
So there's, there's sets of symptomsthat when you combine them, may give
a clue as to the what, what's goingon, and that that may be Parkinson's.
Like trying to read thetea leaves, isn't it?
In some ways, but you've gotmore experience in reading them,
You are.
Well, the, the, the patterns in the tealeaves are, are now starting to make
sense and we're putting things together.
(16:55):
so.
the hope is perhaps if we, if we, wehave, can, can combine those features
with some more objective things, uh,such as various different markers
in the blood or the spinal fluid.
signals on scanning, that we may beable to even detect Parkinson's disease
it really becomes full, fully Andmay provide an opportunity to, to to,
(17:21):
to damp it down and to to stop it.
Not necessarily cure it, but perhapsstop it early from progressing.
We've done a fair bit of workin the area of trying to.
You, you said you may be able to getsome back, so I'll, I'll use the term
reversing it, but, maybe it's a, atemporary thing, but you talk about
(17:43):
exercise and that sort of thing.
Is that right?
To, how does that fit in?
Important to understand that.
Um.
with any neurological condition.
It's, it's a combination of adaptabilityof the brain, to compensate for an
underlying disease process and that.
(18:04):
What we call neuroplasticity is afeature of the brain being able to,
uh, alter its chemical and electricalpathways to compensate for a problem.
So, for example, if you have a, anda certain area of the brain that,
for example, controls your, yourhand or leg movement is damaged,
you might have an initial paralysis.
(18:26):
But then over the course of weeks tomonths, what happens is that the brain
cells adjacent areas start to take overthe job of the damaged brain cells.
And then that is what probably drivesrecovery in Parkinson's disease.
It's probably a similar but morecomplex model, it's thought that,
(18:47):
and it may initially begin with some,Insult that that affects the deeper
structures right in the middle of thebrain, pretty close to the spot of
the brain that controls your sleepingand waking and dreaming movements
That's damaged.
And there's some critical cells therecalled this in an area of the brain
called the substantial Niagara, right atthe very top of the, what we call your
(19:10):
brain stem, connecting your spinal cordinto the brain and the cells there, uh,
characteristically start to to die off.
And often it's thought that studies.
By the time people have obviousParkinson's symptoms, there's
up to 50 to even 80% loss ofthose specific specific cells.
(19:35):
But
often people, the, the brain adapts.
And so the,
the loss of those cells in the middleof the brain means that your for what?
For example, your automa,your autopilot's not working.
So in Parkinson's disease, the firstthing that often you can lose is, the
(19:57):
ability to, uh, just naturally walk.
And,
because you, you don't have to thinkabout walking, but that becomes disrupted.
But you can compensate forthat by using the outer bits
of your brain, the, the cortex.
And that's where you can actually comppretty much, by activating the, the
(20:18):
outer bits of the brain that takesover the job of the damaged bits
Exercise is, is, is thought tostimulate the, the blood flow to the,
the brain and release, um, variousdifferent chemical factors which
predispose towards brain health.
And, uh, and this in terms of,uh, slowing down the progress of
(20:41):
the disease exercise really seemsto be the most promising route.
Now the other thing to bring intothis discussion is that When you
slow down and don't move, youstart to lose, lose muscle, um, um.
In the general population, we, we sadlylose about 5% of your muscle mass every
decade from about 40 forties onwards.
(21:01):
so there's a drop out of yourmuscle, but that is something
that's actually replaceable andyou can build muscle back up again.
You, everyone's seen these picturesof 80-year-old weight lift is
still being able to bench press.
amounts and, with very good muscularAnd that, that's another component.
We, we often get a bit tied up with,brain aspects of Parkinson's, but we
(21:25):
mustn't forget that if you, uh, are notmoving very well, you lose your muscles.
And that's something that canbe compensated for by exercise.
And so it's been recognized now that,Not just aerobic exercise, but also,
what we call resistance training or,or what, or where you're building up.
Muscle is also a critical, componentof any exercise program to help with
(21:48):
pd, probably giving you a a largeamount of information I'm afraid.
It fascinating though.
And, uh, having the conditionmyself, not trained as a movement
disorder specialist or a Parkinson'sspecialist, I must emphasize, but,
um, it's pretty strong motivationto, to read and learn a lot about it.
(22:09):
when you've got it and.
And that, and that's helpful.
Um, there have been studies that haveshown that, that the more you know
about a condition, the better youroutcome, uh, with the caveat being
that you, you're getting verified,proper, genuine, authentic information.
And one of the things I dospend a bit of time with is,
(22:30):
uh, ensuring people know how to.
Sort out the, the, the good stufffrom the bad stuff in terms of
the information and Dr. Google.
the simplest way really is to, Lookat the major organizations and their
websites, for example, Parkinson's,Australia, Parkinson's, Michael J.
Fox Foundation.
(22:50):
all those have, the information, brochuresand materials on their websites have all
been vetted by specialists in the area.
and, uh, so something that pops up onFacebook, is quite a different level
of, value of information compared tosomething that's come through one of
those other sources that I've cited.
There's a lot of things in the worldthat are like that, that, uh, all
(23:11):
sorts of things fly around on socials.
But, thinking about where you've been,what is it that you're doing nowadays?
Like you talked about advocacyand what does that look like?
I'm, I'm on the board of Parkinson's,Western Australia, and also the
board of Parkinson's Australia.
they both have slightly differentfunctions, so Parkinson's
(23:31):
Western Australia is, is, mainlyfocuses on delivery of services
to people with Parkinson's.
And the, the core strengthis a team of visiting.
Home nurses who are specialists inParkinson's who will go out to the,
the home, and initially help with the,uh, all the practical questions and
things that come up in the, the firstfew weeks to months after diagnosis.
(23:57):
Parkinson's WA puts on events such as a,a newly diagnosed seminar information,
e events every, every few months.
Um, uh, for example on the.
A April the 30th, I'm giving a, apresentation about, exercise and its
role in the therapy for Parkinson'sin combination with a, a colleague
(24:18):
of mine, a physiotherapist fromTasmania named Michelle Kaseya,
who also has Parkinson's disease.
So she too is doing pretty much whatI'm doing, uh, down in Tasmania, and
she's, been very successful in, um.
Starting to make changes intothe improvements of care in, in
Tasmania, and also contributed toa online learning tool that's been
(24:40):
widely used throughout the world.
so I spend my, uh, days now giving talksand lectures about, uh, Parkinson's.
The boxing program that I developed withRay Fazio, it keeps, keeps me quite busy.
I, I train two, two nights a week, uh,at, at a gym with, uh, about, usually
(25:01):
to 15 other people with Parkinson's.
We have a, a, a, a group at, um, ofus that's now more than a hundred
people with Parkinson's, and haveabout five or six sessions per week at,
uh, a big gym in, the center of town.
In, in, in.
The, city of Vincent.
And, uh, we also have a regular Fridaymorning yoga class, which with, with
(25:23):
my, with my, my wife Kirsten, she and Iteach yoga to people with Parkinson's,
for Parkinson's, Western Australia.
On the national scene, with Parkinson's,a Australia, there's a broader
advocacy role, lobbying governments,for example, for improved funding,
for Parkinson's services research.
(25:47):
And one of the, the big things thatI've taken a lot of interest in is
the, issue of, environmental toxinsas being recognized as one of the
potential triggers for Parkinson's.
We know that 10 to 15% of cases ofParkinson's a genetic basis based
(26:08):
on analysis of the chromosomesand, uh, and specific testing.
But that leaves 80 tofive to 90% not genetic.
uh, there are very strong lines ofevidence to suggest that, three major
categories of environmental toxins,atmospheric pollution, specific solvents.
(26:29):
But probably the biggestgroup is pesticides and more
specifically herbicides.
uh, implicated in thecausality of Parkinson's.
We've known for many years thatspecific groups of occupations
have increased risk of Parkinson's,particularly farmers, orchardists,
greens keepers, wine, wine makers.
(26:50):
Welders and certain, uh, heavy metalworkers, have all been linked to having
higher risks of Parkinson's disease.
And it turns out that many of the,substances that those occupations handle
are probably, uh, underlying cause.
uh, I've been involved with thereally trying to, uh, highlight that
(27:10):
and, uh, bring about some changein terms of the, uh, herbicide
use in, in, in, in Australia.
herbicide use, obviously that's, thatgoes into the food chain as well, so.
Yeah.
Talk about farmers.
they're obviously exposed at the,at the source, so to speak, or
(27:31):
point of application, I guess.
And then, you know, it dependson what goes on from there.
Welders is an interesting one.
I'm probably not too surprised whenyou think about what welding is, where
you're, you know, using high voltageto, to melt metals and create fumes.
And we know that, uh, there's a lot of.
That's the big issue there apparently.
(27:51):
Oh yeah.
Okay.
So, and that'll be a componentof a lot of probably fluxes or
something like that in the schemeof things, of equipment they use.
So, At those sources then, youknow, there's a lot of the backstop
often becomes, uh, protection.
But if you look at a hierarchy ofcontrol, it's much better to eliminate
(28:14):
those things rather than to, putthem into the environment, I guess.
Look, you know, this is nothing new.
I mean, you only have tothink about DDT, asbestos.
those are similar, similar analogiesreally to, What's been happening
with some of the herbicides.
The, the other one is, is solvents.
trichlorethylene, which is now bannedin most places of the world, is
(28:39):
used as a, a degreasing agent formotor vehicles and mechanics, and
also in dry cleaning apparently.
And also, uh, you remember liquidpaper for, um, what whiting out,
Those things.
that.
I remember you can still seethose bottles around the place.
Yeah.
Yeah.
So the, the, the, the, the solvent,uh, TCE has been heavily linked and
(29:05):
its peak about, apparently in the uk,one in 12 workers was, had something
to do with, use, use of TCE. And thenan extraordinary, case example arises
from, uh, the United States where Amilitary training camp on in North
Carolina, seemed to have a cluster of,uh, people who'd been to that camp as
(29:28):
to, to, to become marines basically.
You know, so we were talking about fit,fit in their teens, early twenties.
It was recognized that they weregetting Parkinson's disease in their,
uh, mid thirties, early forties.
with extraordinary high rate.
And was found out was that the, theMarines, you know, they, they have
(29:51):
their uniforms all starched andthings for their parade and fancy,
and the, um, the dry cleaning.
Uh, a place that did all the uniforms wasleaking trichlorethylene into the water
supply and so there was found to be a70% increase in the risk of Parkinson's
in that population, and they were ableto compare that with a, another training
(30:14):
site for Marines on the other side of the,the US with without contaminated water.
that's an absolutely stunning.
Piece of evidence that that clearly linksthe uh, the two together toxin exposure
to, uh, the development of the condition.
Wow, that's incredible.
There little things that were probablyunseen on the day, but having a, a massive
(30:38):
effect on a raft of people's lives.
Yeah.
And often
I.
exposures can occur decades in advance.
And because what I was saying beforeabout, the brain's ability to compensate,
so, can get an exposure, you might besick somehow at, at the start, but then
the brain is capacity to, to compensate.
(30:58):
Goes, goes well for a while.
In the typical not aging process,the brain does, the volume of the
brain does shrink a little bit.
Once you're about the age of past theage of 50, it's thought that you lose
about 1% of the volume of your frontallobe and your, your, your memory circuit
called the hippocampal lo per year.
It's not a loss of brain cells,it's more of a shrinkage down.
(31:21):
then as that.
Physiological shrinkage occurs.
ability of the brain to compensate forsomething that's happened before reduced.
And so the symptoms emerge.
uh, if you can do something to actually,we know that exercise is one of the
best things for maintaining that brainvolume, but if we could, uh, learn how
(31:41):
to, use less, toxic, uh, materials andavoid them, That too would actually be
a, a huge, a huge step towards reducingthe burden of Parkinson's disease.
And that burden islooking like it's growing.
Is that correct?
So the World Health Organization in,uh, has undertaken studies called
(32:03):
the Global Burden of Diseases, in1990 they found 2.8 million people
in the world had Parkinson's.
25 years later in 2015 that it doubledover 6 million and then it only took
another six years through to 2021 forit to go up to 12 million so that the
(32:24):
slope of that graph is woo, and that'sfar in excess of the rate of aging.
See, the aging of the population,doesn't explain that almost, uh.
Ski jump, slope of the curve upwards.
And, uh, it's interesting, youlook at the, her, her herbicide
use globally has, has gone up abit like same shape of the curve.
(32:49):
You also look, the otherfactor I mentioned was, um.
pollution.
And, uh, we know from of China thatthe air pollution stats, have gone
up, uh, in parallel with the amountof people getting Parkinson's.
And historically, interestingly, whenJames Parkinson's described six patients
(33:12):
or six people had seen in London, thatwas at the height of the industrial
Revolution in the s smoggy London fog.
And, uh, it, it's interesting thatParkinson's disease had symptoms, hadn't
really been recognized, up until then.
there may have been some reportscoming out of India, from the be,
(33:33):
from the before, before Christ time.
But, unlike other conditions likeseizures and, Stroke, which have been
recognized for thousands of years.
not really many reportsof of Parkinson's disease.
And it may be an effect of,
long period of exposure to, uh,development and longevity is
(33:58):
increased over the years, there isan argument to say that, perhaps.
These, uh, Parkinson's wasn'trecognized in antiquity because
air pollution didn't really comealong to the industrial revolution.
That.
of this,
Yeah.
Yeah.
That's sort of suggesting that it, it'sappearing at around the same time as
(34:21):
the, air pollution is appearing likefor a, a big part of the population.
Yeah.
And so even though the impact of airpollution might only statistically
have a small effect on individualsglobally, it's got a huge impact.
And we also know that, um, a lot of theherbicides and pesticides, and w wind up
(34:45):
having materials in, in, in the clouds.
And, uh, are estimates of x numberof tons of, Herbicides circulating in
the, in the atmosphere, above Europe.
And, there have been, uh, reportsof, Identifying, uh, pesticides in,
in, in rainwater and, uh, in, forexample, uh, in countries, countries in
(35:07):
Europe where something's been banned.
But the neighboring co country hasn'tbanned a, pesticide, and it's thought
that the wind drift, uh, brings it across.
So it's not just necessarily thepeople who are exposed at the
coalface, uh, spraying the fields.
It's, it's, it can be farmore widespread than that.
You think about, things like PFAS.
(35:29):
So we've got Fogo, so, uh, food,organic garden organic collections.
Here it goes to a. Facility that, hasidentified to be contaminated with
PFAS, which are forever chemicals, andthey've effectively shut down that,
service because the, the chemicalsare coming in through the, the food
(35:52):
organics and the garden organicsthat are being put into the system.
it's a very complex.
Scenario becomes a mixtureof chemicals that potentially
are very harmful to people.
Uh, I think there seems to belittle doubt in the mind of many
researchers around the world thatwe, we, we are poisoning ourselves.
And, uh, it's pretty,pretty obvious really,
(36:15):
is offering the practices and habitsand, ingrained practices that,
uh, have led us down this road.
uh, backing up is gonnabe quite difficult.
But, uh, thankfully there is a lotof work on, for example, organic
farming and regenerative methods of,of agriculture that, um, in fact,
(36:37):
there's some really big names in thatworld in, in, in Western Australia who,
uh, making some progress in the area.
So, and it's fascinating how.
You know, diseases like Parkinson'sand, and if motor neuron disease is
another one where environmental, havebeen recognized, for example, Bluegreen
algae, As a side effect of, uh,fertilizers running off into water bodies.
(37:01):
there, there are toxins withinthat that are, uh, strikingly
associated with motor neuron disease.
um, in terms of neurological conditions,uh, know, the environmental aspect
is, is enormous and, there's a lotgonna be ha lot, lot ha happening
in that, in that area at the moment.
you look at that and you go, youknow, wow, what are we doing?
(37:25):
Yeah.
Yeah.
So David,
doing in terms of advocacy, I'm,I'm involved with a lot of that.
Yeah.
And that sounds like great work thatreally helps the, the people who are being
DI diagnosed with Parkinson's disease.
Yeah.
Uh,
I.
that, that advocacy andis not, is not my work.
(37:47):
It's the work of many othersaround the world, but I'm just
trying to bring it to the fore and,make sure people understand it.
my, my, my specific sort ofcontributions are, are more related
to the, uh, Helping people getthrough that initial phase actually.
And one of the things that does meis that, is the, the way that the
diagnosis is framed and presentedto the patient, can have a very big
(38:10):
impact upon their, their attitudeand, uh, their, um, outlook on life.
And, uh, if it.
If things are painted in a verynegative fashion, can drive people
to, uh, really drop their bundleand, uh, enter a spiral downwards
(38:30):
from which they may never recover.
But conversely, if it's pointedout that, hey, now we've actually
recognized what you've got, canstart you on some treatment.
we can focus on, uh, a holistic approach.
Get, get your medicines right, get yourdiet right, get your exercise optimized.
People can feel better thanthey have for many years and.
(38:53):
got many examples of patients who,paradoxically, are living much better than
they otherwise would've because the, thediagnosis gives them such a, um, stimulus
to actually lead a healthier lifestyle.
for, for example, people who mightnot have ever exercised before,
start taking it up uh, they, endup being fitter, healthier, and
(39:16):
have, uh, perhaps a more, um.
Positive attitude towards life.
And,
Hope is the exact ingredient that thatis, one of the famous, Neurologists from
the Netherlands, named Bastiaan Bloem.
He, he, he, he had a patient whotalked about, we talked about dopamine
replacement in Parkinson's, and she, she,Bas's patient, coined the term hopamine.
(39:42):
If you give people hope, that really,uh, can open up the world for them.
and, uh.
I was about to say you, you know,about posttraumatic stress disorder.
there is such a thing aspost-traumatic growth.
the concept is you, you have a, a baddiagnosis or something happened to you and
your attitude to, to the world changes.
So you start to appreciateday-to-day things, more readily.
(40:06):
You don't get upsetabout the small things.
You go and do your bucket list, youstart doing stuff now and living um.
I felt a bit like that, frankly.
And, uh, it's, it's a muchbetter way to, to approach it.
And, uh, I've been very interestedin, in the words that we use to
help, to, to, to, to people withdiagnosis and the way you do it.
(40:31):
there are examples from other fields,for example, where, for example, brain
tumors often got a very grim prognosis.
And, uh, the, a, I remember hearingsomeone who said this surgeon was
very good surgeon did extra operation,but said, oh, 80% of people are
gonna be dead within five years.
(40:51):
you flip it around the otherway, 20% of people are gonna
be alive after five years.
Let's see what we can do tomake sure you've got the maximal
chance to be in that 20%.
So just flipping things around,um, it can make a huge difference
to a person's perception
Only are you what you eat.
You're all you are also what you think.
(41:12):
And that gets back to what I wassaying before about that almost kind
of our brains are probably based onpredictive algorithms of behavior.
You know, we have, we have our ownalgorithm ticking away, uh, that,
uh, probably leads us on and, uh.
The well-recognized phenomenaof self-fulfilling prophecy.
If you tell someone something's gonnahappen, uh, it, it, it will happen.
(41:33):
And, uh, think that is something thatreally needs to be harnessed and, uh,
providing, uh, that hope is such ahuge, huge component because you take
away hope and there's nothing left.
And, uh, uh, it's a big stimulant.
(41:54):
So David, If someone wanted to beadvocating for a cause like you
are, uh, how would they go about it?
Probably the best thing is to lookat the Parkinson's Australia website
that's got, links to various differentaspects, uh, including the herbicide one.
and there's, there are petitionsthat could be signed and, um.
(42:17):
Information sheets that can be signed,uh, about approaching local councils
for not spraying glyphosate and thingson the park where your kids walk.
And so, so there arethe big national body.
Parkinson's Australia is thebest, best group for the advocacy.
Supporting causes like Parkinson's,Western Australia by donating, helps
(42:39):
to provide service to people withParkinson's and practical day-to-day help.
so those are the ways thatpeople can get involved.
And, uh, one of the, um, most satisfyingthings that I've been involved with is,
between Parkinson's WA and the PerinInstitute where we have a, clinic for
newly diagnosed people to support them.
(43:01):
So quite often we'll hear a story thatthe patient goes to see a specialist,
they get the diagnosis, then afteryou've heard the words, you've got
Parkinson's, often similar with cancer.
It's very hard to the patientto take much else in after that.
It's such a shock Walking outthinking, just hearing, oh, I'll
(43:23):
see you back in six months time.
Here's a script.
And even if the doctor has beena really good communicator and,
and said or provided all theinformation, it just doesn't sink in.
And so.
Parkinson's WA would be gettingsomething like 10,000 phone calls
or emails per year, and the majorityof them being by distressed people,
(43:44):
uh, with their diagnosis andtheir family wanting to know more.
um, a long time to wait sixmonths for your, your clinic
appointment in the hospital.
And so, um.
Traditionally, we've had the Parkinson'snurses, go out to the house, but that's
becoming, there's three and a half,thousand patients on Parkinson's W'S
(44:04):
books and uh, I think we were sevenor eight nurses, but only about four
or five FTE equivalent in total.
it's a huge amount of people, so.
to cut across that weight.
we've set up this clinic everysecond Thursday of the month.
we have, uh, uh, a couple of Parkinson'snurses, one from Parkinson's wa, one
(44:26):
from Perrin, Parkinson's PhysiotherapySpecialists, myself and a group of
Parkinson's buddies I call them.
So people who have been diagnosedmaybe three or five years down the
line who've been through all thisstuff and they come along as well.
uh.
have small group sessions of maybe,three to five newly diagnosed people
(44:47):
with sometimes their family members,and we provide them with, support
information, teach them how to find the,the, the good information I was talking
about, where to find physiotherapists,exercise programs, uh, mainly to hear
and see people who are living wellwith Parkinson's to give them that,
(45:08):
example got that clinic this Thursday.
so that's just an example of alongthat paradigm of just trying to make
that mental shift, to introduce hopewith positivity rather than, uh,
it's the end, the end of the world.
That sounds like, uh, such animportant, thing to, to be a part of.
And I think that the, the buddieswho, who, uh, coming on the roster
(45:32):
to, to help find it incredibly, uh,helpful for themselves actually.
it's interesting that the, um, it'sthought that, When you, um, volunteer or
make a donation or acts of philanthropy,probably actually helped to boost
dopamine, in, in, in the brain.
So helping other people outwith Parkinson's, uh, helps
(45:55):
Parkinson's people themselves.
So I
a, a bit of a kick out of it too.
Let's talk about the one thing,David, that you've got out there
that's available to people at anytime and exactly when they need it.
and, people didn't put two andtwo together through the indie
author book Fair that, uh, you'veactually put out a book as well.
(46:15):
so what does the, the book cover.
So the, the book focuses really onthe, the time around my diagnosis.
I, I give a bit of my backgroundand my training and where I've,
who I am and where I'm from.
I'm, I'm actually from Bunbury,that's where I was born.
but it focuses on that experience ofmoving from being the doctor to the
patient and, uh, The bumps along the way.
(46:40):
And, uh, I describe, uh, some ofthe opportunities that have unfolded
that I had not really anticipated.
I could never imagine that I'd be,collaborating with, uh, Ray FAO on, a
boxing program for Parkinson's disease.
And, uh, that's been a tremendousturnaround in my life, really helping
to, get me fit again and move again.
(47:02):
it's given me an opportunity to,uh, perhaps make, uh, any impact
in more people's lives and even.
In my career as, as a, as a, as astroke doctor and, uh, the, the power
of shared experience is, is incredible.
and, and then I focus on some ups anddowns and, how I've managed with them.
(47:22):
And I also have, um, present myideas about how, uh, framing the,
the diagnosis with more optimism andhope can potentially, make an impact
on the, the course of the disease.
I am pleased to say that it's alsogiven me an opportunity to, to
speak about these issues with the,hundreds of people with Parkinson's.
(47:43):
And, uh, I hope that, that, uh,there'll be many more who can
benefit from it and in, um, in May.
Provided the world's still stable enough.
I've been in invited to be the worldParkinson's Congress in Phoenix, Arizona,
which is a very unique conference,the world Parkinson's conferences,
'cause they have four or 5,000attendees and they're roughly equal
(48:06):
amounts of people with Parkinson's.
And they're their support people,scientists and clinicians.
And, uh, there've been six of thembefore, and I, the first one I
went to was in Barcelona in 2022.
And it was an amazing experience justto, to be in that audience with, all
these different people who've gotdifferent relationships with Parkinson's.
(48:28):
All working together to actuallytry and make their lives better.
And uh, some people said,oh, you're traveling at this.
Risky time in the world.
I think the risk is gonna be worthit because there's many people who
I've actually made contact withwho haven't met face-to-face in the
Parkinson's world, who'd be tremendousto actually meet them in person.
(48:48):
And I've also, uh, on a list of aboutsix people who actually are going to
be, uh, presenting their books as well.
So there's a, uh, a section for,for Parkinson's books that have been
published in the last year or so.
And I do know a, um, Imade contact with a, uh.
previous anesthetist in, uh, the US who's,uh, got Parkinson's herself and, uh.
(49:12):
There's a, a emergency doctornamed Johnny Ton from the UK
who has done a similar thing.
He's written a book about his experienceas well, but I don't think he's
gonna be able to be at the meeting.
But there are at least two otherdoctors with Parkinson's who've
written books about their ownexperience, uh, in the last year or so.
So that makes three of uswho've written about this topic.
(49:32):
So, for our.
Other fellow Parkinson's, people.
there, there's, there's plenty of juicyreading material that around to hopefully
give them some, uh, some optimism.
Have you had an opportunityto read their books?
Yes, yes.
Very quickly.
Yes, absolutely.
and there's lots of common experiences.
(49:53):
all of us come from slightly differentangles and, uh, For, for Sarah,
Whittingham, the American, anesthetist,she, she hadn't expected at all.
It was a big, big shock to her as it wasto, to Johnny, uh, Atkinson in the uk.
so they both had much more.
abrupt realizations of what it wasrather than my sort of slow introduction.
(50:14):
And, uh, so it impacted them on indifferent ways but, but I think both of
them have also found the, the, the, thesupport within the Parkinson's community
being, quite unique really, um, in termsof the camaraderie and togetherness of it.
It's something I, I don'tthink is paralleled in many
other, medical conditions.
(50:35):
It's interesting how some peoplecome together in community under
different circumstances and it,and it builds a different thing.
Yeah, yeah.
Well, I've actually, I actuallyformed a, in collaboration with it.
A psychiatry colleague whohas Parkinson's herself.
We formed a support group specificallyfor doctors with Parkinson's in, in wa.
(50:55):
We've got a dozen members at the moment,and, uh, they're a wide range of issues
that, uh, are relevant and, uh, it, it's,it's modeled a bit on to joining Aon.
The, uh, the British, um, ed physician,Formed a large WhatsApp group for
practitioners in the NHS, not justdoctors, but physios, nurses, dentists.
(51:19):
And there's about 70 people on that list.
And, uh, Michelle, thephysiotherapist in Tasmania and
myself, uh, uh, added on as extras.
And, within their WhatsApp group.
They've got various different.
Streams, about, retirement issues,data life, practical problems,
issues, medical practice issues.
And, um, we have a weekly question.
(51:42):
So one, once a week there's a writer.
So you put a question to thegroup and there's a response.
And actually it's my turn in abouttwo weeks time, so I've gotta think
of a good, provocative question.
but, uh.
One of the examples of the benefitsthat have come out of that is, is John
did a lot of work on, the importanceof continuing medications in hospital.
(52:02):
So one of the.
Most dangerous places for a personwith Parkinson's is to be admitted
to hospital for some other cause, uh,some other, uh, other medical problem.
and your medications get outta sync.
your diets change.
You might be fasting and your regime,particularly in advanced Parkinson's,
often is really critical to getyour timing of your medicines right.
(52:24):
For example, I take a tabletevery three hours and also have to
time my meals to, to, to be, uh.
Spaced a little bit apart from the tablet.
'cause if you take the tablet at thesame time as the, as the meal, the tablet
doesn't get absorbed as effectively.
And so, uh, it's a bit of a, a balance,which can be completely upset in hospital.
And, and there are other medicines thatactually worsen Parkinson's disease.
(52:49):
And, uh, so, so with John's work,he actually was able to get a,
Uh, a much greater recognition ofthe importance of, of, of managing
Parkinson's, uh, in, in hospitals.
Yeah, it's certainly an important thingwhen you, when you go into a hospital
and you know, you anticipate peoplewill look after you in the right way,
(53:10):
but they also need to know, don't they?
Yeah, and actually back in, inmy book I described the ups and
downs I had from 2022 to 2023.
I. Including, uh, I had a, what wasa retinal detachment in one eye and
had to have emergency surgery, andthen I had prostate cancer surgery,
and the ups and downs of all of that.
(53:31):
So, uh, I got something incommon with Billy Connolly.
He, he prostate cancer and Parkinson'sdisease diagnosed in the same week.
thankfully it wasn't the same week for me,but, uh, uh, probably not surprisingly.
because of the age, uh, age of the averageParkinson's patient, coincides, uh, there
is actually a gender selection as wellthat there, there's certainly higher
(53:55):
rates of Parkinson's in men than in women.
And, um, it's still, that may bean occupational exposure issue,
but, um, there, there, there is anexcess of men compared to women.
So the combination of prostate cancerand Parkinson's is, is not that uncommon.
It sounds like that Well, thankyou very much, David for being on
(54:16):
Forrest.Chat and all Forrest.Chatlisteners, wish you all the best with
your future endeavors, especially thattrip to Arizona by the sound of it.
Yeah, so I'm looking forward to a littlebit trepidatious about the flying and the
getting into the country and the visa.
But, uh, we're looking forward to meetingwith some people, from all around the
world, and talking about the book.
(54:37):
Then a couple of days in the Grand Canyonand then, uh, we're coming back via Bali.
We were, my wife and I, Kirsten aregoing on a one week yo yoga retreat.
So that'll be hopefully a bitof calm after some busy times.
Yes.
Exciting times, which is reallygood to, good to hear about.
And thanks for your workhighlighting West Australians.
It's uh, fascinating.
(54:58):
Yes.
Thank you.
West Australind are doinglots of good things.
You've been listening to Forrest.Chatwhere we talk about individual endeavor
in Western Australia, what it takes,what it means, and how you do it.
I'm your host, Paul van der Mey, and intoday's episode, we've been talking with
David Blacker about the transition frombeing a physician to being a patient.
(55:24):
Remember, there are four ways toget involved with Forrest.Chat.
the domain Forrest.Chat with yourfriends and family and people you
meet when you sign up for emails.
You get advanced notice of the episodes.
Listen to the episodesat Forrest.Chat slash
If you do something interesting or.
Other people might find interesting.
(55:45):
Book an interview at Forrest.Chatslash interview if you want to
support a small business book, anadvert at Forrest.Chat slash advert.
I'm looking forward to joiningyou with our next guest.
Until then, enjoy making it happen.
Welcome to Forrest.Chat, where wetalk about individual endeavor in
Western Australia, what it takes,what it means, and how you do it.
I'm your host, Paul van der Mey, andin today's episode we are talking with
David Blacker about transitioning frombeing a physician to being a patient.
David qualified as a specialist around2002 and worked mainly as a stroke
(00:32):
doctor and did some research and around2018 was also diagnosed as a patient
When he transitioned from being aclinician to being more research based.
Welcome to Forret Chat, David.
Thanks, Paul.
Good, good to see you againafter meeting you in Bunbury.
(00:54):
Yes, we caught up at the Indie Author bookFair, and I interviewed you at that time.
Uh, I also found out about you,David, before that, I have a, a
friend who, is actually sufferingfrom Parkinson's Disease and they had
told me about you even, even beforewe got to the indie author book Fair.
(01:14):
So.
David, what sort of physician are you?
Well, I'm, I'm still in.
Neurologist, but, uh, I don'treally practice clinically.
I, I still have registration.
but uh, with my diagnosis ofParkinson's Disease, I, I realized
that I was gonna have to change, uh.
My, my role's a bit.
(01:36):
for, for most of my career I was a,a stroke doctor and, uh, always had a
little bit of research going as well.
but with the, the Parkinson's and theslowness that causes and a number of the
other problems that come along with it,uh, I was concerned that I wasn't able
to do, do my best and, give the patients.
the, the quality that they needed,because of my own problems.
(01:59):
But, uh, I had the rare opportunityof being able to, uh, shape my
career a little bit and, swingmore over to the research side.
And more recently as I've cut down onclinical practice completely, uh, to, uh,
advocacy and support and, it's been a,a, a rare opportunity, I think to, Assist
(02:19):
not only going through the same experienceas me with, with, with Parkinson's, but
also to hopefully have some influenceon my colleagues to make them understand
it's like to live with a chroniccondition like Parkinson's disease.
Can you give us a bit of an idea of, whata neurologist is actually doing on a,
(02:40):
Yeah,
a clinical sense?
Uh.
is a physician who specializesin diseases of the the nervous
system, that's very encompassing.
It includes the brain, the spinalcord, the muscles, and the nerves, so.
We tra train in internal medicine,which covers all the, medical type of
(03:01):
conditions in the systems of the body.
And then you specialize in,in the, the nervous system.
And so it's about aeight to 10 year process.
often a, a neurologist is, is, uh,um, mistaken for a neurosurgeon.
So a neurosurgeon is also a doctorwho deals with diseases of the nervous
system, but that's typically diseases thatrequire surgery, like tumors or trauma.
(03:27):
I'll deal with conditions that usually aretreated by medications such as epilepsy,
Parkinson's disease, multiple sclerosis.
There's quite often an overlap, andwe often have patients that we share
in between neurology and neurosurgery.
The other overlap is often withpsychiatry, where that deal with,
(03:49):
the psychiatrist is a doctor whohas medical training, who then
specializes in mental diseases.
And traditionally it's been thoughtthat, you might view, Neurosurgery
is dealing with the hardware of yourcom brain computer, neurology and
psychiatry deal with the software.
So it's a nice analogy and neurologykind of sits in between the two.
(04:13):
So we have patients who have psychiatrictype of presentations and we have
patients who have neurological problemsthat are, have a a cause that's.
for example, a, an epileptic seizuremight be caused by, uh, uh, the first
sign of a, a tumor irritating the brain.
uh, we'll often work with theneurosurgeons in, in concert.
(04:36):
So what a a, a neurologist does.
typically we'll divide them intohospital-based and outpatient
type of specialties, and that,again, depends upon the illness.
for illnesses like stroke and meningitis,and acute epilepsy, you'll get
taken by an ambulance into hospital.
And so there's a lot of neurologistswho mainly do hospital based work,
(05:00):
there are other conditions, forexample, migraine and multiple
sclerosis and Parkinson's disease,which are more in the outpatient realm.
the, the typical day today work, uh, uh, is, uh.
In the hospital is, would berounding on your patients.
Uh, seeing the new people whocome in, working out treatment
plans and, and looking after them.
(05:21):
and also attending clinics and,Seeing consultations as well.
So often in the hospital, a patientmight be admitted to another team
such with another problem like heartattack or a gut problem, they may
have, uh, neurological complicationsof those illnesses, uh, including
(05:41):
things like confusion or headache.
or they may have, um.
An existing condition, like multiplesclerosis or Parkinson's disease that
gets worsened because of another sickness.
So, it's a very encompassing,specialty and I, I have no, uh, regrets
having, having chosen it, think, uh,the brain is the most fascinating
(06:06):
thing in, in the universe, really.
And, uh, I, I recall asa. Neurosurgical resident.
In the first few years after you finishyour, your, your basic medical degree,
many young doctors will circulate throughdifferent specialties in the hospitals.
And I had the opportunity to endup doing about six, six months of
neurosurgery and, uh, you know,assisting in operations and things.
(06:30):
And to actually see that the brain,expose and think about the brain
thinking about another brain.
And it is just mind blowing really.
Almost has a, a meta.
Physical type of,
It, it feels like that.
Yes.
Yes.
I was talking, uh, just the other daywith my wife about the amazing things that
(06:52):
the brain is able to do even beyond the.
Capacity.
We have to think about it really.
But also the fact that, uh,unlike a, a computer or ai,
it's just, it knows what to do.
And it's, I'll sayinstant on or always on.
You're never having to, apart frommomentary delays, it's really up and
(07:17):
ready to go all the time, isn't it?
There are, there are, um, philosophicalconstructs about whether or not, your
brain actually sort of predeterminesthings even before you're aware of it.
And, um, there's so, so, uh, you thinksomething's gonna happen, your, your
(07:37):
brain's already pre predetermined it.
So if you think you're gonna hityour golf shot into the, into
the lake, uh, you probably will.
you need help to get it out, I'm sure.
What about the event then when you foundout that uh, you suddenly needed the help?
It wasn't a sudden thingand uh, Parkinson's.
(08:01):
Develops slowly.
And uh, I I certainly, by the time Icame to a formal diagnosis with one
of my colleagues in, in 2018, I waspretty certain that that's what I had.
uh, it followed a process that took,took many years, in fact, and retrospect.
(08:22):
One of the very first symptoms Ihad was something called a exercise
induced dystonia, in my foot.
And that's a, a, a disorder of movement,which is triggered after exercise and
it's, it's like a twisting distortion,irregular contraction of the muscles.
and it, it's really due to lossof control of the brain over the
(08:43):
muscles, That initially only occurredafter large amount of exercise,
for example, running a marathon.
uh, in the early to mid two thousands,I, I started doing marathons, for
fitness and to keep my weight down.
in fact, I've done theBunbury Marathon at one stage.
and, uh, in the process of doingmarathons, I, we get this, this, this
(09:08):
feeling come on in my leg, uh, aftera couple of hours of running and.
When, when it occurred the first time,thought, oh, you know, a lot of things
happen to your body, particularly inyour middle aged and a very good runner.
Um, you hit the wall and, there's alot of, a lot of bad stuff and a lot
of mental activity to get through it.
(09:29):
so initially it was probably mixedup in amongst all of that, but.
Unfortunately, I then startedto develop the sensation.
It was like a, a tightness andstiffness, almost like a cramp, but
not necessarily a. Uh, anything to see.
um, that would, instead of occurringat two hours, it'd be an hour and
(09:50):
a half, and then after another sixmonths, it'd be down to an hour.
so within a few years, I was findingthat I, I really couldn't run for
more than about five or 10 minuteswithout my leg starting to twist
and become quite uncomfortable.
And then I would even noticethat if I was walking fast or
walking up a hill, for example.
And so.
(10:11):
I, I had some tests and x-raysand saw specialist and things.
I then started to realize that, that,that, that this was, could potentially
be the forerunner of Parkinson'sdisease, there's absolutely nothing
else for, for, for many years.
None of the other thingssuch as small handwriting,
slowness of movement or tremor.
But those things all began toemerge from about 2016 onwards.
(10:34):
And, um.
Initially I thought, oh,maybe I'm imagining it.
it's certainly not an uncommonscenario for, for doctors to, uh,
be a bit, um, sensitive to symptomsand over-diagnose themselves.
I perhaps went a bit theun uh, the other way.
the, but what, the real, realturning point was that, um.
(10:58):
When I was examining patients in theclinic, I could tell that, uh, the
first thing I could tell was my, myhandwriting was becoming, uh, more
difficult and doctors get accused ofbad handwriting and probably rightly so.
but what I could see was thatif I was seeing a patient in the
clinic who I'd written notes on.
Six, 12 months, two years ago,I could actually see the change
(11:18):
in my handwriting progressivelybecoming smaller, which is a very
characteristic feature of Parkinson's.
And it was also actually becomingquite difficult for me to write out
the forms and lots of in the erabefore the electronic medical record.
Um, there's lots of writing todo, but the real kicker was when I
was examining Parkinson's patientsand they were actually moving.
(11:41):
Better and quicker than me.
So one, one of the common tests thatwe do is in neurology to look at the
integrity of we call the motor pathways,is of rapid alternating finger tapping.
And I'd actually noticed that this ismy left hand, is the non-dominant hand.
This is not very good for, for a podcast.
(12:01):
Uh, but, and my right hand is actually, mydominant hand is slower than my left hand.
And it's actually muchmore difficult to do.
then when I noticed that patientswere actually going quicker than
me, I thought, oh yeah, this lookspretty, uh, pretty much like it.
So, and then I put it off a littlebit longer 'cause I had, I was
(12:22):
thinking about who am I gonna see.
a very small community in termsof, I think there's about 55.
Active neurologists in with, not allof them being adult neurologists met.
Some are pediatrics and some are, uh,uh, just in private practice or, anyway,
so there's a, a limited number ofpeople and, uh, didn't want to really.
(12:47):
Sort of put pressure on one of myyounger colleagues who'd been a trainee,
didn't really wanna have someonewho I was in the same office as.
So I, I thought about it verycarefully and I, I, thankfully
I made a very good choice.
I really have terrific relationshipwith my personal neurologist.
so I put it off a bit untilI figured, figured that out.
And then the kids were finishing highschool and in their last year and.
(13:12):
Wanted to sort of let them get throughwithout taking, uh, any, any additional
pressure for that last year, 12.
and so I finally came to it and, uh, what.
Was really a surprise was despite thefact that I really, uh, was expecting
the diagnosis, uh, I was really struckby how, how it did still hit me hard
(13:35):
and how emotional it did make me feel,and how upset I was and, It changes
your perspective on things a lot.
You, you, you have a, idea of whatfuture's gonna be like, perhaps a
bit idealistically, and then all ofa sudden that's put un under threat.
But, um, almost at the same time though,what also I realized was that if I'm
(13:58):
feeling like this with the knowledge thatI have and the background that I have,
it like for people who don't have that.
Advantage difficult it must be.
And was really amongst that, that Ithink the spark to, do what I've been
doing over the last few years, which istrying to make things easier for people.
Going through that experience of gettingthe diagnosis and then living with
(14:23):
it, and recognizing the opportunitythat gave me to make a big difference.
And, uh.
When I was still working,uh, and seeing new patients.
Um, if I was to make a, a diagnosis ofParkinson's disease with someone and,
and then almost in the same breathbe able to say, I've got it too.
(14:44):
That's incredible power.
Just, just amazingly helpful tool toto, to assist and, to demonstrate that.
medication and exercise, you, youcan actually re regain some of
the things that you've been losinggradually over the course of, of
several, several years because it,it really does creep up on you.
(15:06):
And there've been some studies thathave demonstrated that there are
symptoms detectable, uh, and, andsigns detectable for as much as seven
years before the clear diagnosis.
there are.
Even other symptoms that may goback sometimes decades, such as
loss of sense of smell, and alsoa peculiar sleep disorder called
(15:28):
REM sleep behavioral disturbance.
So when we sleep, are differentphases of the depth of your,
your your, your, your sleep.
we get to dream, dream sleep,and when, when we are dreaming.
Most typically, our musclesin our limbs are paralyzed.
So the breathing muscles andthe the muscles of your eyes,
(15:52):
uh, are, are still working.
but the, the limb muscles are supposedto be paralyzed to stop you leaping
around and, and acting out your dreams.
And, uh, uh, people can have that as it.
disorder, uh, appearing decades before theclassic symptoms of slowness, stiffness
(16:12):
of the muscles and tremor emerge.
it's thought that maybe 90% ofpeople who have that sleep disorder
eventually get Parkinson's.
So we're increasinglyrecognizing that there may be
what we call a prodromal phase.
And I should also mention, uh, unexplainedconstipation is another thing that
often can proceed Parkinson's as well.
(16:33):
So there's, there's sets of symptomsthat when you combine them, may give
a clue as to the what, what's goingon, and that that may be Parkinson's.
Like trying to read thetea leaves, isn't it?
In some ways, but you've gotmore experience in reading them,
You are.
Well, the, the, the patterns in the tealeaves are, are now starting to make
sense and we're putting things together.
(16:55):
so.
the hope is perhaps if we, if we, wehave, can, can combine those features
with some more objective things, uh,such as various different markers
in the blood or the spinal fluid.
signals on scanning, that we may beable to even detect Parkinson's disease
it really becomes full, fully Andmay provide an opportunity to, to to,
(17:21):
to damp it down and to to stop it.
Not necessarily cure it, but perhapsstop it early from progressing.
We've done a fair bit of workin the area of trying to.
You, you said you may be able to getsome back, so I'll, I'll use the term
reversing it, but, maybe it's a, atemporary thing, but you talk about
(17:43):
exercise and that sort of thing.
Is that right?
To, how does that fit in?
Important to understand that.
Um.
with any neurological condition.
It's, it's a combination of adaptabilityof the brain, to compensate for an
underlying disease process and that.
(18:04):
What we call neuroplasticity is afeature of the brain being able to,
uh, alter its chemical and electricalpathways to compensate for a problem.
So, for example, if you have a, anda certain area of the brain that,
for example, controls your, yourhand or leg movement is damaged,
you might have an initial paralysis.
(18:26):
But then over the course of weeks tomonths, what happens is that the brain
cells adjacent areas start to take overthe job of the damaged brain cells.
And then that is what probably drivesrecovery in Parkinson's disease.
It's probably a similar but morecomplex model, it's thought that,
(18:47):
and it may initially begin with some,Insult that that affects the deeper
structures right in the middle of thebrain, pretty close to the spot of
the brain that controls your sleepingand waking and dreaming movements
That's damaged.
And there's some critical cells therecalled this in an area of the brain
called the substantial Niagara, right atthe very top of the, what we call your
(19:10):
brain stem, connecting your spinal cordinto the brain and the cells there, uh,
characteristically start to to die off.
And often it's thought that studies.
By the time people have obviousParkinson's symptoms, there's
up to 50 to even 80% loss ofthose specific specific cells.
(19:35):
But
often people, the, the brain adapts.
And so the,
the loss of those cells in the middleof the brain means that your for what?
For example, your automa,your autopilot's not working.
So in Parkinson's disease, the firstthing that often you can lose is, the
(19:57):
ability to, uh, just naturally walk.
And,
because you, you don't have to thinkabout walking, but that becomes disrupted.
But you can compensate forthat by using the outer bits
of your brain, the, the cortex.
And that's where you can actually comppretty much, by activating the, the
(20:18):
outer bits of the brain that takesover the job of the damaged bits
Exercise is, is, is thought tostimulate the, the blood flow to the,
the brain and release, um, variousdifferent chemical factors which
predispose towards brain health.
And, uh, and this in terms of,uh, slowing down the progress of
(20:41):
the disease exercise really seemsto be the most promising route.
Now the other thing to bring intothis discussion is that When you
slow down and don't move, youstart to lose, lose muscle, um, um.
In the general population, we, we sadlylose about 5% of your muscle mass every
decade from about 40 forties onwards.
(21:01):
so there's a drop out of yourmuscle, but that is something
that's actually replaceable andyou can build muscle back up again.
You, everyone's seen these picturesof 80-year-old weight lift is
still being able to bench press.
amounts and, with very good muscularAnd that, that's another component.
We, we often get a bit tied up with,brain aspects of Parkinson's, but we
(21:25):
mustn't forget that if you, uh, are notmoving very well, you lose your muscles.
And that's something that canbe compensated for by exercise.
And so it's been recognized now that,Not just aerobic exercise, but also,
what we call resistance training or,or what, or where you're building up.
Muscle is also a critical, componentof any exercise program to help with
(21:48):
pd, probably giving you a a largeamount of information I'm afraid.
It fascinating though.
And, uh, having the conditionmyself, not trained as a movement
disorder specialist or a Parkinson'sspecialist, I must emphasize, but,
um, it's pretty strong motivationto, to read and learn a lot about it.
(22:09):
when you've got it and.
And that, and that's helpful.
Um, there have been studies that haveshown that, that the more you know
about a condition, the better youroutcome, uh, with the caveat being
that you, you're getting verified,proper, genuine, authentic information.
And one of the things I dospend a bit of time with is,
(22:30):
uh, ensuring people know how to.
Sort out the, the, the good stufffrom the bad stuff in terms of
the information and Dr. Google.
the simplest way really is to, Lookat the major organizations and their
websites, for example, Parkinson's,Australia, Parkinson's, Michael J.
Fox Foundation.
(22:50):
all those have, the information, brochuresand materials on their websites have all
been vetted by specialists in the area.
and, uh, so something that pops up onFacebook, is quite a different level
of, value of information compared tosomething that's come through one of
those other sources that I've cited.
There's a lot of things in the worldthat are like that, that, uh, all
(23:11):
sorts of things fly around on socials.
But, thinking about where you've been,what is it that you're doing nowadays?
Like you talked about advocacyand what does that look like?
I'm, I'm on the board of Parkinson's,Western Australia, and also the
board of Parkinson's Australia.
they both have slightly differentfunctions, so Parkinson's
(23:31):
Western Australia is, is, mainlyfocuses on delivery of services
to people with Parkinson's.
And the, the core strengthis a team of visiting.
Home nurses who are specialists inParkinson's who will go out to the,
the home, and initially help with the,uh, all the practical questions and
things that come up in the, the firstfew weeks to months after diagnosis.
(23:57):
Parkinson's WA puts on events such as a,a newly diagnosed seminar information,
e events every, every few months.
Um, uh, for example on the.
A April the 30th, I'm giving a, apresentation about, exercise and its
role in the therapy for Parkinson'sin combination with a, a colleague
(24:18):
of mine, a physiotherapist fromTasmania named Michelle Kaseya,
who also has Parkinson's disease.
So she too is doing pretty much whatI'm doing, uh, down in Tasmania, and
she's, been very successful in, um.
Starting to make changes intothe improvements of care in, in
Tasmania, and also contributed toa online learning tool that's been
(24:40):
widely used throughout the world.
so I spend my, uh, days now giving talksand lectures about, uh, Parkinson's.
The boxing program that I developed withRay Fazio, it keeps, keeps me quite busy.
I, I train two, two nights a week, uh,at, at a gym with, uh, about, usually
(25:01):
to 15 other people with Parkinson's.
We have a, a, a, a group at, um, ofus that's now more than a hundred
people with Parkinson's, and haveabout five or six sessions per week at,
uh, a big gym in, the center of town.
In, in, in.
The, city of Vincent.
And, uh, we also have a regular Fridaymorning yoga class, which with, with
(25:23):
my, with my, my wife Kirsten, she and Iteach yoga to people with Parkinson's,
for Parkinson's, Western Australia.
On the national scene, with Parkinson's,a Australia, there's a broader
advocacy role, lobbying governments,for example, for improved funding,
for Parkinson's services research.
(25:47):
And one of the, the big things thatI've taken a lot of interest in is
the, issue of, environmental toxinsas being recognized as one of the
potential triggers for Parkinson's.
We know that 10 to 15% of cases ofParkinson's a genetic basis based
(26:08):
on analysis of the chromosomesand, uh, and specific testing.
But that leaves 80 tofive to 90% not genetic.
uh, there are very strong lines ofevidence to suggest that, three major
categories of environmental toxins,atmospheric pollution, specific solvents.
(26:29):
But probably the biggestgroup is pesticides and more
specifically herbicides.
uh, implicated in thecausality of Parkinson's.
We've known for many years thatspecific groups of occupations
have increased risk of Parkinson's,particularly farmers, orchardists,
greens keepers, wine, wine makers.
(26:50):
Welders and certain, uh, heavy metalworkers, have all been linked to having
higher risks of Parkinson's disease.
And it turns out that many of the,substances that those occupations handle
are probably, uh, underlying cause.
uh, I've been involved with thereally trying to, uh, highlight that
(27:10):
and, uh, bring about some changein terms of the, uh, herbicide
use in, in, in, in Australia.
herbicide use, obviously that's, thatgoes into the food chain as well, so.
Yeah.
Talk about farmers.
they're obviously exposed at the,at the source, so to speak, or
(27:31):
point of application, I guess.
And then, you know, it dependson what goes on from there.
Welders is an interesting one.
I'm probably not too surprised whenyou think about what welding is, where
you're, you know, using high voltageto, to melt metals and create fumes.
And we know that, uh, there's a lot of.
That's the big issue there apparently.
(27:51):
Oh yeah.
Okay.
So, and that'll be a componentof a lot of probably fluxes or
something like that in the schemeof things, of equipment they use.
So, At those sources then, youknow, there's a lot of the backstop
often becomes, uh, protection.
But if you look at a hierarchy ofcontrol, it's much better to eliminate
(28:14):
those things rather than to, putthem into the environment, I guess.
Look, you know, this is nothing new.
I mean, you only have tothink about DDT, asbestos.
those are similar, similar analogiesreally to, What's been happening
with some of the herbicides.
The, the other one is, is solvents.
trichlorethylene, which is now bannedin most places of the world, is
(28:39):
used as a, a degreasing agent formotor vehicles and mechanics, and
also in dry cleaning apparently.
And also, uh, you remember liquidpaper for, um, what whiting out,
Those things.
that.
I remember you can still seethose bottles around the place.
Yeah.
Yeah.
So the, the, the, the, the solvent,uh, TCE has been heavily linked and
(29:05):
its peak about, apparently in the uk,one in 12 workers was, had something
to do with, use, use of TCE. And thenan extraordinary, case example arises
from, uh, the United States where Amilitary training camp on in North
Carolina, seemed to have a cluster of,uh, people who'd been to that camp as
(29:28):
to, to, to become marines basically.
You know, so we were talking about fit,fit in their teens, early twenties.
It was recognized that they weregetting Parkinson's disease in their,
uh, mid thirties, early forties.
with extraordinary high rate.
And was found out was that the, theMarines, you know, they, they have
(29:51):
their uniforms all starched andthings for their parade and fancy,
and the, um, the dry cleaning.
Uh, a place that did all the uniforms wasleaking trichlorethylene into the water
supply and so there was found to be a70% increase in the risk of Parkinson's
in that population, and they were ableto compare that with a, another training
(30:14):
site for Marines on the other side of the,the US with without contaminated water.
that's an absolutely stunning.
Piece of evidence that that clearly linksthe uh, the two together toxin exposure
to, uh, the development of the condition.
Wow, that's incredible.
There little things that were probablyunseen on the day, but having a, a massive
(30:38):
effect on a raft of people's lives.
Yeah.
And often
I.
exposures can occur decades in advance.
And because what I was saying beforeabout, the brain's ability to compensate,
so, can get an exposure, you might besick somehow at, at the start, but then
the brain is capacity to, to compensate.
(30:58):
Goes, goes well for a while.
In the typical not aging process,the brain does, the volume of the
brain does shrink a little bit.
Once you're about the age of past theage of 50, it's thought that you lose
about 1% of the volume of your frontallobe and your, your, your memory circuit
called the hippocampal lo per year.
It's not a loss of brain cells,it's more of a shrinkage down.
(31:21):
then as that.
Physiological shrinkage occurs.
ability of the brain to compensate forsomething that's happened before reduced.
And so the symptoms emerge.
uh, if you can do something to actually,we know that exercise is one of the
best things for maintaining that brainvolume, but if we could, uh, learn how
(31:41):
to, use less, toxic, uh, materials andavoid them, That too would actually be
a, a huge, a huge step towards reducingthe burden of Parkinson's disease.
And that burden islooking like it's growing.
Is that correct?
So the World Health Organization in,uh, has undertaken studies called
(32:03):
the Global Burden of Diseases, in1990 they found 2.8 million people
in the world had Parkinson's.
25 years later in 2015 that it doubledover 6 million and then it only took
another six years through to 2021 forit to go up to 12 million so that the
(32:24):
slope of that graph is woo, and that'sfar in excess of the rate of aging.
See, the aging of the population,doesn't explain that almost, uh.
Ski jump, slope of the curve upwards.
And, uh, it's interesting, youlook at the, her, her herbicide
use globally has, has gone up abit like same shape of the curve.
(32:49):
You also look, the otherfactor I mentioned was, um.
pollution.
And, uh, we know from of China thatthe air pollution stats, have gone
up, uh, in parallel with the amountof people getting Parkinson's.
And historically, interestingly, whenJames Parkinson's described six patients
(33:12):
or six people had seen in London, thatwas at the height of the industrial
Revolution in the s smoggy London fog.
And, uh, it, it's interesting thatParkinson's disease had symptoms, hadn't
really been recognized, up until then.
there may have been some reportscoming out of India, from the be,
(33:33):
from the before, before Christ time.
But, unlike other conditions likeseizures and, Stroke, which have been
recognized for thousands of years.
not really many reportsof of Parkinson's disease.
And it may be an effect of,
long period of exposure to, uh,development and longevity is
(33:58):
increased over the years, there isan argument to say that, perhaps.
These, uh, Parkinson's wasn'trecognized in antiquity because
air pollution didn't really comealong to the industrial revolution.
That.
of this,
Yeah.
Yeah.
That's sort of suggesting that it, it'sappearing at around the same time as
(34:21):
the, air pollution is appearing likefor a, a big part of the population.
Yeah.
And so even though the impact of airpollution might only statistically
have a small effect on individualsglobally, it's got a huge impact.
And we also know that, um, a lot of theherbicides and pesticides, and w wind up
(34:45):
having materials in, in, in the clouds.
And, uh, are estimates of x numberof tons of, Herbicides circulating in
the, in the atmosphere, above Europe.
And, there have been, uh, reportsof, Identifying, uh, pesticides in,
in, in rainwater and, uh, in, forexample, uh, in countries, countries in
(35:07):
Europe where something's been banned.
But the neighboring co country hasn'tbanned a, pesticide, and it's thought
that the wind drift, uh, brings it across.
So it's not just necessarily thepeople who are exposed at the
coalface, uh, spraying the fields.
It's, it's, it can be farmore widespread than that.
You think about, things like PFAS.
(35:29):
So we've got Fogo, so, uh, food,organic garden organic collections.
Here it goes to a. Facility that, hasidentified to be contaminated with
PFAS, which are forever chemicals, andthey've effectively shut down that,
service because the, the chemicalsare coming in through the, the food
(35:52):
organics and the garden organicsthat are being put into the system.
it's a very complex.
Scenario becomes a mixtureof chemicals that potentially
are very harmful to people.
Uh, I think there seems to belittle doubt in the mind of many
researchers around the world thatwe, we, we are poisoning ourselves.
And, uh, it's pretty,pretty obvious really,
(36:15):
is offering the practices and habitsand, ingrained practices that,
uh, have led us down this road.
uh, backing up is gonnabe quite difficult.
But, uh, thankfully there is a lotof work on, for example, organic
farming and regenerative methods of,of agriculture that, um, in fact,
(36:37):
there's some really big names in thatworld in, in, in Western Australia who,
uh, making some progress in the area.
So, and it's fascinating how.
You know, diseases like Parkinson'sand, and if motor neuron disease is
another one where environmental, havebeen recognized, for example, Bluegreen
algae, As a side effect of, uh,fertilizers running off into water bodies.
(37:01):
there, there are toxins withinthat that are, uh, strikingly
associated with motor neuron disease.
um, in terms of neurological conditions,uh, know, the environmental aspect
is, is enormous and, there's a lotgonna be ha lot, lot ha happening
in that, in that area at the moment.
you look at that and you go, youknow, wow, what are we doing?
(37:25):
Yeah.
Yeah.
So David,
doing in terms of advocacy, I'm,I'm involved with a lot of that.
Yeah.
And that sounds like great work thatreally helps the, the people who are being
DI diagnosed with Parkinson's disease.
Yeah.
Uh,
I.
that, that advocacy andis not, is not my work.
(37:47):
It's the work of many othersaround the world, but I'm just
trying to bring it to the fore and,make sure people understand it.
my, my, my specific sort ofcontributions are, are more related
to the, uh, Helping people getthrough that initial phase actually.
And one of the things that does meis that, is the, the way that the
diagnosis is framed and presentedto the patient, can have a very big
(38:10):
impact upon their, their attitudeand, uh, their, um, outlook on life.
And, uh, if it.
If things are painted in a verynegative fashion, can drive people
to, uh, really drop their bundleand, uh, enter a spiral downwards
(38:30):
from which they may never recover.
But conversely, if it's pointedout that, hey, now we've actually
recognized what you've got, canstart you on some treatment.
we can focus on, uh, a holistic approach.
Get, get your medicines right, get yourdiet right, get your exercise optimized.
People can feel better thanthey have for many years and.
(38:53):
got many examples of patients who,paradoxically, are living much better than
they otherwise would've because the, thediagnosis gives them such a, um, stimulus
to actually lead a healthier lifestyle.
for, for example, people who mightnot have ever exercised before,
start taking it up uh, they, endup being fitter, healthier, and
(39:16):
have, uh, perhaps a more, um.
Positive attitude towards life.
And,
Hope is the exact ingredient that thatis, one of the famous, Neurologists from
the Netherlands, named Bastiaan Bloem.
He, he, he, he had a patient whotalked about, we talked about dopamine
replacement in Parkinson's, and she, she,Bas's patient, coined the term hopamine.
(39:42):
If you give people hope, that really,uh, can open up the world for them.
and, uh.
I was about to say you, you know,about posttraumatic stress disorder.
there is such a thing aspost-traumatic growth.
the concept is you, you have a, a baddiagnosis or something happened to you and
your attitude to, to the world changes.
So you start to appreciateday-to-day things, more readily.
(40:06):
You don't get upsetabout the small things.
You go and do your bucket list, youstart doing stuff now and living um.
I felt a bit like that, frankly.
And, uh, it's, it's a muchbetter way to, to approach it.
And, uh, I've been very interestedin, in the words that we use to
help, to, to, to, to people withdiagnosis and the way you do it.
(40:31):
there are examples from other fields,for example, where, for example, brain
tumors often got a very grim prognosis.
And, uh, the, a, I remember hearingsomeone who said this surgeon was
very good surgeon did extra operation,but said, oh, 80% of people are
gonna be dead within five years.
(40:51):
you flip it around the otherway, 20% of people are gonna
be alive after five years.
Let's see what we can do tomake sure you've got the maximal
chance to be in that 20%.
So just flipping things around,um, it can make a huge difference
to a person's perception
Only are you what you eat.
You're all you are also what you think.
(41:12):
And that gets back to what I wassaying before about that almost kind
of our brains are probably based onpredictive algorithms of behavior.
You know, we have, we have our ownalgorithm ticking away, uh, that,
uh, probably leads us on and, uh.
The well-recognized phenomenaof self-fulfilling prophecy.
If you tell someone something's gonnahappen, uh, it, it, it will happen.
(41:33):
And, uh, think that is something thatreally needs to be harnessed and, uh,
providing, uh, that hope is such ahuge, huge component because you take
away hope and there's nothing left.
And, uh, uh, it's a big stimulant.
(41:54):
So David, If someone wanted to beadvocating for a cause like you
are, uh, how would they go about it?
Probably the best thing is to lookat the Parkinson's Australia website
that's got, links to various differentaspects, uh, including the herbicide one.
and there's, there are petitionsthat could be signed and, um.
(42:17):
Information sheets that can be signed,uh, about approaching local councils
for not spraying glyphosate and thingson the park where your kids walk.
And so, so there arethe big national body.
Parkinson's Australia is thebest, best group for the advocacy.
Supporting causes like Parkinson's,Western Australia by donating, helps
(42:39):
to provide service to people withParkinson's and practical day-to-day help.
so those are the ways thatpeople can get involved.
And, uh, one of the, um, most satisfyingthings that I've been involved with is,
between Parkinson's WA and the PerinInstitute where we have a, clinic for
newly diagnosed people to support them.
(43:01):
So quite often we'll hear a story thatthe patient goes to see a specialist,
they get the diagnosis, then afteryou've heard the words, you've got
Parkinson's, often similar with cancer.
It's very hard to the patientto take much else in after that.
It's such a shock Walking outthinking, just hearing, oh, I'll
(43:23):
see you back in six months time.
Here's a script.
And even if the doctor has beena really good communicator and,
and said or provided all theinformation, it just doesn't sink in.
And so.
Parkinson's WA would be gettingsomething like 10,000 phone calls
or emails per year, and the majorityof them being by distressed people,
(43:44):
uh, with their diagnosis andtheir family wanting to know more.
um, a long time to wait sixmonths for your, your clinic
appointment in the hospital.
And so, um.
Traditionally, we've had the Parkinson'snurses, go out to the house, but that's
becoming, there's three and a half,thousand patients on Parkinson's W'S
(44:04):
books and uh, I think we were sevenor eight nurses, but only about four
or five FTE equivalent in total.
it's a huge amount of people, so.
to cut across that weight.
we've set up this clinic everysecond Thursday of the month.
we have, uh, uh, a couple of Parkinson'snurses, one from Parkinson's wa, one
(44:26):
from Perrin, Parkinson's PhysiotherapySpecialists, myself and a group of
Parkinson's buddies I call them.
So people who have been diagnosedmaybe three or five years down the
line who've been through all thisstuff and they come along as well.
uh.
have small group sessions of maybe,three to five newly diagnosed people
(44:47):
with sometimes their family members,and we provide them with, support
information, teach them how to find the,the, the good information I was talking
about, where to find physiotherapists,exercise programs, uh, mainly to hear
and see people who are living wellwith Parkinson's to give them that,
(45:08):
example got that clinic this Thursday.
so that's just an example of alongthat paradigm of just trying to make
that mental shift, to introduce hopewith positivity rather than, uh,
it's the end, the end of the world.
That sounds like, uh, such animportant, thing to, to be a part of.
And I think that the, the buddieswho, who, uh, coming on the roster
(45:32):
to, to help find it incredibly, uh,helpful for themselves actually.
it's interesting that the, um, it'sthought that, When you, um, volunteer or
make a donation or acts of philanthropy,probably actually helped to boost
dopamine, in, in, in the brain.
So helping other people outwith Parkinson's, uh, helps
(45:55):
Parkinson's people themselves.
So I
a, a bit of a kick out of it too.
Let's talk about the one thing,David, that you've got out there
that's available to people at anytime and exactly when they need it.
and, people didn't put two andtwo together through the indie
author book Fair that, uh, you'veactually put out a book as well.
(46:15):
so what does the, the book cover.
So the, the book focuses really onthe, the time around my diagnosis.
I, I give a bit of my backgroundand my training and where I've,
who I am and where I'm from.
I'm, I'm actually from Bunbury,that's where I was born.
but it focuses on that experience ofmoving from being the doctor to the
patient and, uh, The bumps along the way.
(46:40):
And, uh, I describe, uh, some ofthe opportunities that have unfolded
that I had not really anticipated.
I could never imagine that I'd be,collaborating with, uh, Ray FAO on, a
boxing program for Parkinson's disease.
And, uh, that's been a tremendousturnaround in my life, really helping
to, get me fit again and move again.
(47:02):
it's given me an opportunity to,uh, perhaps make, uh, any impact
in more people's lives and even.
In my career as, as a, as a, as astroke doctor and, uh, the, the power
of shared experience is, is incredible.
and, and then I focus on some ups anddowns and, how I've managed with them.
(47:22):
And I also have, um, present myideas about how, uh, framing the,
the diagnosis with more optimism andhope can potentially, make an impact
on the, the course of the disease.
I am pleased to say that it's alsogiven me an opportunity to, to
speak about these issues with the,hundreds of people with Parkinson's.
(47:43):
And, uh, I hope that, that, uh,there'll be many more who can
benefit from it and in, um, in May.
Provided the world's still stable enough.
I've been in invited to be the worldParkinson's Congress in Phoenix, Arizona,
which is a very unique conference,the world Parkinson's conferences,
'cause they have four or 5,000attendees and they're roughly equal
(48:06):
amounts of people with Parkinson's.
And they're their support people,scientists and clinicians.
And, uh, there've been six of thembefore, and I, the first one I
went to was in Barcelona in 2022.
And it was an amazing experience justto, to be in that audience with, all
these different people who've gotdifferent relationships with Parkinson's.
(48:28):
All working together to actuallytry and make their lives better.
And uh, some people said,oh, you're traveling at this.
Risky time in the world.
I think the risk is gonna be worthit because there's many people who
I've actually made contact withwho haven't met face-to-face in the
Parkinson's world, who'd be tremendousto actually meet them in person.
(48:48):
And I've also, uh, on a list of aboutsix people who actually are going to
be, uh, presenting their books as well.
So there's a, uh, a section for,for Parkinson's books that have been
published in the last year or so.
And I do know a, um, Imade contact with a, uh.
previous anesthetist in, uh, the US who's,uh, got Parkinson's herself and, uh.
(49:12):
There's a, a emergency doctornamed Johnny Ton from the UK
who has done a similar thing.
He's written a book about his experienceas well, but I don't think he's
gonna be able to be at the meeting.
But there are at least two otherdoctors with Parkinson's who've
written books about their ownexperience, uh, in the last year or so.
So that makes three of uswho've written about this topic.
(49:32):
So, for our.
Other fellow Parkinson's, people.
there, there's, there's plenty of juicyreading material that around to hopefully
give them some, uh, some optimism.
Have you had an opportunityto read their books?
Yes, yes.
Very quickly.
Yes, absolutely.
and there's lots of common experiences.
(49:53):
all of us come from slightly differentangles and, uh, For, for Sarah,
Whittingham, the American, anesthetist,she, she hadn't expected at all.
It was a big, big shock to her as it wasto, to Johnny, uh, Atkinson in the uk.
so they both had much more.
abrupt realizations of what it wasrather than my sort of slow introduction.
(50:14):
And, uh, so it impacted them on indifferent ways but, but I think both of
them have also found the, the, the, thesupport within the Parkinson's community
being, quite unique really, um, in termsof the camaraderie and togetherness of it.
It's something I, I don'tthink is paralleled in many
other, medical conditions.
(50:35):
It's interesting how some peoplecome together in community under
different circumstances and it,and it builds a different thing.
Yeah, yeah.
Well, I've actually, I actuallyformed a, in collaboration with it.
A psychiatry colleague whohas Parkinson's herself.
We formed a support group specificallyfor doctors with Parkinson's in, in wa.
(50:55):
We've got a dozen members at the moment,and, uh, they're a wide range of issues
that, uh, are relevant and, uh, it, it's,it's modeled a bit on to joining Aon.
The, uh, the British, um, ed physician,Formed a large WhatsApp group for
practitioners in the NHS, not justdoctors, but physios, nurses, dentists.
(51:19):
And there's about 70 people on that list.
And, uh, Michelle, thephysiotherapist in Tasmania and
myself, uh, uh, added on as extras.
And, within their WhatsApp group.
They've got various different.
Streams, about, retirement issues,data life, practical problems,
issues, medical practice issues.
And, um, we have a weekly question.
(51:42):
So one, once a week there's a writer.
So you put a question to thegroup and there's a response.
And actually it's my turn in abouttwo weeks time, so I've gotta think
of a good, provocative question.
but, uh.
One of the examples of the benefitsthat have come out of that is, is John
did a lot of work on, the importanceof continuing medications in hospital.
(52:02):
So one of the.
Most dangerous places for a personwith Parkinson's is to be admitted
to hospital for some other cause, uh,some other, uh, other medical problem.
and your medications get outta sync.
your diets change.
You might be fasting and your regime,particularly in advanced Parkinson's,
often is really critical to getyour timing of your medicines right.
(52:24):
For example, I take a tabletevery three hours and also have to
time my meals to, to, to be, uh.
Spaced a little bit apart from the tablet.
'cause if you take the tablet at thesame time as the, as the meal, the tablet
doesn't get absorbed as effectively.
And so, uh, it's a bit of a, a balance,which can be completely upset in hospital.
And, and there are other medicines thatactually worsen Parkinson's disease.
(52:49):
And, uh, so, so with John's work,he actually was able to get a,
Uh, a much greater recognition ofthe importance of, of, of managing
Parkinson's, uh, in, in hospitals.
Yeah, it's certainly an important thingwhen you, when you go into a hospital
and you know, you anticipate peoplewill look after you in the right way,
(53:10):
but they also need to know, don't they?
Yeah, and actually back in, inmy book I described the ups and
downs I had from 2022 to 2023.
I. Including, uh, I had a, what wasa retinal detachment in one eye and
had to have emergency surgery, andthen I had prostate cancer surgery,
and the ups and downs of all of that.
(53:31):
So, uh, I got something incommon with Billy Connolly.
He, he prostate cancer and Parkinson'sdisease diagnosed in the same week.
thankfully it wasn't the same week for me,but, uh, uh, probably not surprisingly.
because of the age, uh, age of the averageParkinson's patient, coincides, uh, there
is actually a gender selection as wellthat there, there's certainly higher
(53:55):
rates of Parkinson's in men than in women.
And, um, it's still, that may bean occupational exposure issue,
but, um, there, there, there is anexcess of men compared to women.
So the combination of prostate cancerand Parkinson's is, is not that uncommon.
It sounds like that Well, thankyou very much, David for being on
(54:16):
Forrest.Chat and all Forrest.Chatlisteners, wish you all the best with
your future endeavors, especially thattrip to Arizona by the sound of it.
Yeah, so I'm looking forward to a littlebit trepidatious about the flying and the
getting into the country and the visa.
But, uh, we're looking forward to meetingwith some people, from all around the
world, and talking about the book.
(54:37):
Then a couple of days in the Grand Canyonand then, uh, we're coming back via Bali.
We were, my wife and I, Kirsten aregoing on a one week yo yoga retreat.
So that'll be hopefully a bitof calm after some busy times.
Yes.
Exciting times, which is reallygood to, good to hear about.
And thanks for your workhighlighting West Australians.
It's uh, fascinating.
(54:58):
Yes.
Thank you.
West Australind are doinglots of good things.
You've been listening to Forrest.Chatwhere we talk about individual endeavor
in Western Australia, what it takes,what it means, and how you do it.
I'm your host, Paul van der Mey, and intoday's episode, we've been talking with
David Blacker about the transition frombeing a physician to being a patient.
(55:24):
Remember, there are four ways toget involved with Forrest.Chat.
the domain Forrest.Chat with yourfriends and family and people you
meet when you sign up for emails.
You get advanced notice of the episodes.
Listen to the episodesat Forrest.Chat slash
If you do something interesting or.
Other people might find interesting.
(55:45):
Book an interview at Forrest.Chatslash interview if you want to
support a small business book, anadvert at Forrest.Chat slash advert.
I'm looking forward to joiningyou with our next guest.
Until then, enjoy making it happen.
Popular Podcasts
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
The Breakfast Club
The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy, Jess Hilarious, And Charlamagne Tha God!
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.