Interview - David Blacker - Physician and Patient

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Welcome to Forrest.Chat, where we
talk about individual endeavor in
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Western Australia, what it takes,
what it means, and how you do it.
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I'm your host, Paul van der Mey, and
in today's episode we are talking with
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David Blacker about transitioning from
being a physician to being a patient.
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David qualified as a specialist around
2002 and worked mainly as a stroke
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doctor and did some research and around
2018 was also diagnosed as a patient
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When he transitioned from being a
clinician to being more research based.
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Welcome to Forret Chat, David.
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Thanks, Paul.
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Good, good to see you again
after meeting you in Bunbury.
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Yes, we caught up at the Indie Author book
Fair, and I interviewed you at that time.
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Uh, I also found out about you,
David, before that, I have a, a
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friend who, is actually suffering
from Parkinson's Disease and they had
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told me about you even, even before
we got to the indie author book Fair.
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So.
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David, what sort of physician are you?
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Well, I'm, I'm still in.
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Neurologist, but, uh, I don't
really practice clinically.
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I, I still have registration.
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but uh, with my diagnosis of
Parkinson's Disease, I, I realized
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that I was gonna have to change, uh.
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My, my role's a bit.
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for, for most of my career I was a,
a stroke doctor and, uh, always had a
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little bit of research going as well.
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but with the, the Parkinson's and the
slowness that causes and a number of the
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other problems that come along with it,
uh, I was concerned that I wasn't able
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to do, do my best and, give the patients.
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the, the quality that they needed,
because of my own problems.
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But, uh, I had the rare opportunity
of being able to, uh, shape my
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career a little bit and, swing
more over to the research side.
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And more recently as I've cut down on
clinical practice completely, uh, to, uh,
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advocacy and support and, it's been a,
a, a rare opportunity, I think to, Assist
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not only going through the same experience
as me with, with, with Parkinson's, but
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also to hopefully have some influence
on my colleagues to make them understand
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it's like to live with a chronic
condition like Parkinson's disease.
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Can you give us a bit of an idea of, what
a neurologist is actually doing on a,
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Yeah,
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a clinical sense?
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Uh.
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is a physician who specializes
in diseases of the the nervous
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system, that's very encompassing.
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It includes the brain, the spinal
cord, the muscles, and the nerves, so.
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We tra train in internal medicine,
which covers all the, medical type of
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conditions in the systems of the body.
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And then you specialize in,
in the, the nervous system.
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And so it's about a
eight to 10 year process.
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often a, a neurologist is, is, uh,
um, mistaken for a neurosurgeon.
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So a neurosurgeon is also a doctor
who deals with diseases of the nervous
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system, but that's typically diseases that
require surgery, like tumors or trauma.
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I'll deal with conditions that usually are
treated by medications such as epilepsy,
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Parkinson's disease, multiple sclerosis.
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There's quite often an overlap, and
we often have patients that we share
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in between neurology and neurosurgery.
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The other overlap is often with
psychiatry, where that deal with,
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the psychiatrist is a doctor who
has medical training, who then
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specializes in mental diseases.
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And traditionally it's been thought
that, you might view, Neurosurgery
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is dealing with the hardware of your
com brain computer, neurology and
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psychiatry deal with the software.
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So it's a nice analogy and neurology
kind of sits in between the two.
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So we have patients who have psychiatric
type of presentations and we have
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patients who have neurological problems
that are, have a a cause that's.
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for example, a, an epileptic seizure
might be caused by, uh, uh, the first
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sign of a, a tumor irritating the brain.
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uh, we'll often work with the
neurosurgeons in, in concert.
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So what a a, a neurologist does.
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typically we'll divide them into
hospital-based and outpatient
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type of specialties, and that,
again, depends upon the illness.
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for illnesses like stroke and meningitis,
and acute epilepsy, you'll get
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taken by an ambulance into hospital.
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And so there's a lot of neurologists
who mainly do hospital based work,
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there are other conditions, for
example, migraine and multiple
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sclerosis and Parkinson's disease,
which are more in the outpatient realm.
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the, the typical day to
day work, uh, uh, is, uh.
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In the hospital is, would be
rounding on your patients.
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Uh, seeing the new people who
come in, working out treatment
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plans and, and looking after them.
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and also attending clinics and,
Seeing consultations as well.
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So often in the hospital, a patient
might be admitted to another team
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such with another problem like heart
attack or a gut problem, they may
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have, uh, neurological complications
of those illnesses, uh, including
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things like confusion or headache.
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or they may have, um.
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An existing condition, like multiple
sclerosis or Parkinson's disease that
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gets worsened because of another sickness.
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So, it's a very encompassing,
specialty and I, I have no, uh, regrets
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having, having chosen it, think, uh,
the brain is the most fascinating
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thing in, in the universe, really.
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And, uh, I, I recall as
a. Neurosurgical resident.
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In the first few years after you finish
your, your, your basic medical degree,
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many young doctors will circulate through
different specialties in the hospitals.
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And I had the opportunity to end
up doing about six, six months of
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neurosurgery and, uh, you know,
assisting in operations and things.
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And to actually see that the brain,
expose and think about the brain
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thinking about another brain.
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And it is just mind blowing really.
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Almost has a, a meta.
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Physical type of,
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It, it feels like that.
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Yes.
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Yes.
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I was talking, uh, just the other day
with my wife about the amazing things that
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the brain is able to do even beyond the.
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Capacity.
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We have to think about it really.
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But also the fact that, uh,
unlike a, a computer or ai,
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it's just, it knows what to do.
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And it's, I'll say
instant on or always on.
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You're never having to, apart from
momentary delays, it's really up and
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ready to go all the time, isn't it?
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There are, there are, um, philosophical
constructs about whether or not, your
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brain actually sort of predetermines
things even before you're aware of it.
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And, um, there's so, so, uh, you think
something's gonna happen, your, your
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brain's already pre predetermined it.
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So if you think you're gonna hit
your golf shot into the, into
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the lake, uh, you probably will.
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you need help to get it out, I'm sure.
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What about the event then when you found
out that uh, you suddenly needed the help?
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It wasn't a sudden thing
and uh, Parkinson's.
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Develops slowly.
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And uh, I I certainly, by the time I
came to a formal diagnosis with one
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of my colleagues in, in 2018, I was
pretty certain that that's what I had.
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uh, it followed a process that took,
took many years, in fact, and retrospect.
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One of the very first symptoms I
had was something called a exercise
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induced dystonia, in my foot.
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And that's a, a, a disorder of movement,
which is triggered after exercise and
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it's, it's like a twisting distortion,
irregular contraction of the muscles.
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and it, it's really due to loss
of control of the brain over the
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muscles, That initially only occurred
after large amount of exercise,
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for example, running a marathon.
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uh, in the early to mid two thousands,
I, I started doing marathons, for
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fitness and to keep my weight down.
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in fact, I've done the
Bunbury Marathon at one stage.
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and, uh, in the process of doing
marathons, I, we get this, this, this
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feeling come on in my leg, uh, after
a couple of hours of running and.
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When, when it occurred the first time,
thought, oh, you know, a lot of things
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happen to your body, particularly in
your middle aged and a very good runner.
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Um, you hit the wall and, there's a
lot of, a lot of bad stuff and a lot
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of mental activity to get through it.
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so initially it was probably mixed
up in amongst all of that, but.
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Unfortunately, I then started
to develop the sensation.
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It was like a, a tightness and
stiffness, almost like a cramp, but
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not necessarily a. Uh, anything to see.
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um, that would, instead of occurring
at two hours, it'd be an hour and
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a half, and then after another six
months, it'd be down to an hour.
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so within a few years, I was finding
that I, I really couldn't run for
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more than about five or 10 minutes
without my leg starting to twist
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and become quite uncomfortable.
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And then I would even notice
that if I was walking fast or
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walking up a hill, for example.
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And so.
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I, I had some tests and x-rays
and saw specialist and things.
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I then started to realize that, that,
that, that this was, could potentially
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be the forerunner of Parkinson's
disease, there's absolutely nothing
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else for, for, for many years.
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None of the other things
such as small handwriting,
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slowness of movement or tremor.
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But those things all began to
emerge from about 2016 onwards.
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And, um.
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Initially I thought, oh,
maybe I'm imagining it.
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it's certainly not an uncommon
scenario for, for doctors to, uh,
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be a bit, um, sensitive to symptoms
and over-diagnose themselves.
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I perhaps went a bit the
un uh, the other way.
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the, but what, the real, real
turning point was that, um.
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When I was examining patients in the
clinic, I could tell that, uh, the
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first thing I could tell was my, my
handwriting was becoming, uh, more
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difficult and doctors get accused of
bad handwriting and probably rightly so.
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but what I could see was that
if I was seeing a patient in the
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clinic who I'd written notes on.
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Six, 12 months, two years ago,
I could actually see the change
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in my handwriting progressively
becoming smaller, which is a very
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characteristic feature of Parkinson's.
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And it was also actually becoming
quite difficult for me to write out
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the forms and lots of in the era
before the electronic medical record.
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Um, there's lots of writing to
do, but the real kicker was when I
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was examining Parkinson's patients
and they were actually moving.
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Better and quicker than me.
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So one, one of the common tests that
we do is in neurology to look at the
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integrity of we call the motor pathways,
is of rapid alternating finger tapping.
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And I'd actually noticed that this is
my left hand, is the non-dominant hand.
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This is not very good for, for a podcast.
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Uh, but, and my right hand is actually, my
dominant hand is slower than my left hand.
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And it's actually much
more difficult to do.
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then when I noticed that patients
were actually going quicker than
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me, I thought, oh yeah, this looks
pretty, uh, pretty much like it.
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So, and then I put it off a little
bit longer 'cause I had, I was
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thinking about who am I gonna see.
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a very small community in terms
of, I think there's about 55.
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Active neurologists in with, not all
of them being adult neurologists met.
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Some are pediatrics and some are, uh,
uh, just in private practice or, anyway,
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so there's a, a limited number of
people and, uh, didn't want to really.
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Sort of put pressure on one of my
younger colleagues who'd been a trainee,
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didn't really wanna have someone
who I was in the same office as.
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So I, I thought about it very
carefully and I, I, thankfully
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I made a very good choice.
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I really have terrific relationship
with my personal neurologist.
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so I put it off a bit until
I figured, figured that out.
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And then the kids were finishing high
school and in their last year and.
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Wanted to sort of let them get through
without taking, uh, any, any additional
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pressure for that last year, 12.
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and so I finally came to it and, uh, what.
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Was really a surprise was despite the
fact that I really, uh, was expecting
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the diagnosis, uh, I was really struck
by how, how it did still hit me hard
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and how emotional it did make me feel,
and how upset I was and, It changes
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your perspective on things a lot.
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You, you, you have a, idea of what
future's gonna be like, perhaps a
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bit idealistically, and then all of
a sudden that's put un under threat.
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But, um, almost at the same time though,
what also I realized was that if I'm
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feeling like this with the knowledge that
I have and the background that I have,
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it like for people who don't have that.
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Advantage difficult it must be.
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And was really amongst that, that I
think the spark to, do what I've been
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doing over the last few years, which is
trying to make things easier for people.
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Going through that experience of getting
the diagnosis and then living with
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it, and recognizing the opportunity
that gave me to make a big difference.
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And, uh.
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When I was still working,
uh, and seeing new patients.
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Um, if I was to make a, a diagnosis of
Parkinson's disease with someone and,
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and then almost in the same breath
be able to say, I've got it too.
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That's incredible power.
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Just, just amazingly helpful tool to
to, to assist and, to demonstrate that.
222
00:14:55,093 --> 00:15:00,433
medication and exercise, you, you
can actually re regain some of
223
00:15:00,433 --> 00:15:02,803
the things that you've been losing
gradually over the course of, of
224
00:15:02,803 --> 00:15:06,043
several, several years because it,
it really does creep up on you.
225
00:15:06,283 --> 00:15:09,913
And there've been some studies that
have demonstrated that there are
226
00:15:09,913 --> 00:15:15,613
symptoms detectable, uh, and, and
signs detectable for as much as seven
227
00:15:15,613 --> 00:15:17,953
years before the clear diagnosis.
228
00:15:18,703 --> 00:15:18,973
there are.
229
00:15:19,423 --> 00:15:23,473
Even other symptoms that may go
back sometimes decades, such as
230
00:15:23,473 --> 00:15:28,513
loss of sense of smell, and also
a peculiar sleep disorder called
231
00:15:28,933 --> 00:15:30,763
REM sleep behavioral disturbance.
232
00:15:31,573 --> 00:15:36,163
So when we sleep, are different
phases of the depth of your,
233
00:15:36,223 --> 00:15:38,173
your your, your, your sleep.
234
00:15:40,033 --> 00:15:43,183
we get to dream, dream sleep,
and when, when we are dreaming.
235
00:15:44,353 --> 00:15:48,043
Most typically, our muscles
in our limbs are paralyzed.
236
00:15:48,133 --> 00:15:51,823
So the breathing muscles and
the the muscles of your eyes,
237
00:15:52,153 --> 00:15:53,743
uh, are, are still working.
238
00:15:54,643 --> 00:15:58,903
but the, the limb muscles are supposed
to be paralyzed to stop you leaping
239
00:15:58,903 --> 00:16:01,093
around and, and acting out your dreams.
240
00:16:01,663 --> 00:16:04,663
And, uh, uh, people can have that as it.
241
00:16:05,713 --> 00:16:12,823
disorder, uh, appearing decades before the
classic symptoms of slowness, stiffness
242
00:16:12,823 --> 00:16:15,253
of the muscles and tremor emerge.
243
00:16:16,243 --> 00:16:19,483
it's thought that maybe 90% of
people who have that sleep disorder
244
00:16:19,873 --> 00:16:21,763
eventually get Parkinson's.
245
00:16:22,063 --> 00:16:25,723
So we're increasingly
recognizing that there may be
246
00:16:25,723 --> 00:16:27,253
what we call a prodromal phase.
247
00:16:27,983 --> 00:16:31,373
And I should also mention, uh, unexplained
constipation is another thing that
248
00:16:31,433 --> 00:16:33,863
often can proceed Parkinson's as well.
249
00:16:33,923 --> 00:16:37,823
So there's, there's sets of symptoms
that when you combine them, may give
250
00:16:37,823 --> 00:16:42,533
a clue as to the what, what's going
on, and that that may be Parkinson's.
251
00:16:43,020 --> 00:16:45,360
Like trying to read the
tea leaves, isn't it?
252
00:16:45,360 --> 00:16:48,960
In some ways, but you've got
more experience in reading them,
253
00:16:49,549 --> 00:16:50,209
You are.
254
00:16:50,209 --> 00:16:53,719
Well, the, the, the patterns in the tea
leaves are, are now starting to make
255
00:16:53,719 --> 00:16:55,249
sense and we're putting things together.
256
00:16:55,844 --> 00:16:56,024
so.
257
00:16:56,133 --> 00:17:02,013
the hope is perhaps if we, if we, we
have, can, can combine those features
258
00:17:02,013 --> 00:17:06,033
with some more objective things, uh,
such as various different markers
259
00:17:06,423 --> 00:17:08,193
in the blood or the spinal fluid.
260
00:17:09,173 --> 00:17:13,853
signals on scanning, that we may be
able to even detect Parkinson's disease
261
00:17:14,963 --> 00:17:20,968
it really becomes full, fully And
may provide an opportunity to, to to,
262
00:17:21,233 --> 00:17:23,063
to damp it down and to to stop it.
263
00:17:23,513 --> 00:17:28,163
Not necessarily cure it, but perhaps
stop it early from progressing.
264
00:17:28,800 --> 00:17:32,735
We've done a fair bit of work
in the area of trying to.
265
00:17:33,097 --> 00:17:37,057
You, you said you may be able to get
some back, so I'll, I'll use the term
266
00:17:37,057 --> 00:17:43,677
reversing it, but, maybe it's a, a
temporary thing, but you talk about
267
00:17:43,797 --> 00:17:45,477
exercise and that sort of thing.
268
00:17:45,477 --> 00:17:46,047
Is that right?
269
00:17:46,047 --> 00:17:47,667
To, how does that fit in?
270
00:17:48,831 --> 00:17:50,476
Important to understand that.
271
00:17:50,476 --> 00:17:50,866
Um.
272
00:17:52,091 --> 00:17:54,041
with any neurological condition.
273
00:17:54,041 --> 00:17:59,504
It's, it's a combination of adaptability
of the brain, to compensate for an
274
00:17:59,504 --> 00:18:02,954
underlying disease process and that.
275
00:18:04,709 --> 00:18:08,429
What we call neuroplasticity is a
feature of the brain being able to,
276
00:18:08,789 --> 00:18:14,819
uh, alter its chemical and electrical
pathways to compensate for a problem.
277
00:18:14,969 --> 00:18:19,379
So, for example, if you have a, and
a certain area of the brain that,
278
00:18:19,379 --> 00:18:23,369
for example, controls your, your
hand or leg movement is damaged,
279
00:18:23,759 --> 00:18:25,349
you might have an initial paralysis.
280
00:18:26,474 --> 00:18:30,644
But then over the course of weeks to
months, what happens is that the brain
281
00:18:30,644 --> 00:18:35,534
cells adjacent areas start to take over
the job of the damaged brain cells.
282
00:18:36,434 --> 00:18:41,504
And then that is what probably drives
recovery in Parkinson's disease.
283
00:18:41,564 --> 00:18:46,664
It's probably a similar but more
complex model, it's thought that,
284
00:18:47,504 --> 00:18:54,081
and it may initially begin with some,
Insult that that affects the deeper
285
00:18:54,081 --> 00:18:56,991
structures right in the middle of the
brain, pretty close to the spot of
286
00:18:56,991 --> 00:19:00,261
the brain that controls your sleeping
and waking and dreaming movements
287
00:19:02,541 --> 00:19:03,351
That's damaged.
288
00:19:03,351 --> 00:19:07,281
And there's some critical cells there
called this in an area of the brain
289
00:19:07,401 --> 00:19:10,851
called the substantial Niagara, right at
the very top of the, what we call your
290
00:19:10,851 --> 00:19:17,271
brain stem, connecting your spinal cord
into the brain and the cells there, uh,
291
00:19:17,301 --> 00:19:19,911
characteristically start to to die off.
292
00:19:20,031 --> 00:19:25,371
And often it's thought that studies.
293
00:19:26,496 --> 00:19:30,366
By the time people have obvious
Parkinson's symptoms, there's
294
00:19:30,516 --> 00:19:34,596
up to 50 to even 80% loss of
those specific specific cells.
295
00:19:35,706 --> 00:19:35,976
But
296
00:19:38,196 --> 00:19:40,623
often people, the, the brain adapts.
297
00:19:40,623 --> 00:19:41,658
And so the,
298
00:19:44,343 --> 00:19:48,363
the loss of those cells in the middle
of the brain means that your for what?
299
00:19:48,363 --> 00:19:52,023
For example, your automa,
your autopilot's not working.
300
00:19:52,413 --> 00:19:57,256
So in Parkinson's disease, the first
thing that often you can lose is, the
301
00:19:57,256 --> 00:20:00,256
ability to, uh, just naturally walk.
302
00:20:00,376 --> 00:20:00,676
And,
303
00:20:02,896 --> 00:20:06,526
because you, you don't have to think
about walking, but that becomes disrupted.
304
00:20:07,591 --> 00:20:10,651
But you can compensate for
that by using the outer bits
305
00:20:10,651 --> 00:20:12,121
of your brain, the, the cortex.
306
00:20:12,811 --> 00:20:18,744
And that's where you can actually comp
pretty much, by activating the, the
307
00:20:18,804 --> 00:20:21,444
outer bits of the brain that takes
over the job of the damaged bits
308
00:20:23,709 --> 00:20:27,999
Exercise is, is, is thought to
stimulate the, the blood flow to the,
309
00:20:27,999 --> 00:20:32,169
the brain and release, um, various
different chemical factors which
310
00:20:32,169 --> 00:20:34,359
predispose towards brain health.
311
00:20:35,049 --> 00:20:41,379
And, uh, and this in terms of,
uh, slowing down the progress of
312
00:20:41,439 --> 00:20:44,439
the disease exercise really seems
to be the most promising route.
313
00:20:45,849 --> 00:20:49,149
Now the other thing to bring into
this discussion is that When you
314
00:20:49,149 --> 00:20:53,379
slow down and don't move, you
start to lose, lose muscle, um, um.
315
00:20:53,756 --> 00:20:59,036
In the general population, we, we sadly
lose about 5% of your muscle mass every
316
00:20:59,036 --> 00:21:01,196
decade from about 40 forties onwards.
317
00:21:01,976 --> 00:21:04,646
so there's a drop out of your
muscle, but that is something
318
00:21:04,646 --> 00:21:08,366
that's actually replaceable and
you can build muscle back up again.
319
00:21:08,366 --> 00:21:11,966
You, everyone's seen these pictures
of 80-year-old weight lift is
320
00:21:11,966 --> 00:21:13,136
still being able to bench press.
321
00:21:14,311 --> 00:21:20,528
amounts and, with very good muscular
And that, that's another component.
322
00:21:20,588 --> 00:21:25,821
We, we often get a bit tied up with,
brain aspects of Parkinson's, but we
323
00:21:25,821 --> 00:21:32,121
mustn't forget that if you, uh, are not
moving very well, you lose your muscles.
324
00:21:32,271 --> 00:21:35,121
And that's something that can
be compensated for by exercise.
325
00:21:35,181 --> 00:21:40,221
And so it's been recognized now that,
Not just aerobic exercise, but also,
326
00:21:40,571 --> 00:21:43,781
what we call resistance training or,
or what, or where you're building up.
327
00:21:43,781 --> 00:21:48,221
Muscle is also a critical, component
of any exercise program to help with
328
00:21:48,221 --> 00:21:52,981
pd, probably giving you a a large
amount of information I'm afraid.
329
00:21:53,284 --> 00:21:54,259
It fascinating though.
330
00:21:54,974 --> 00:21:59,684
And, uh, having the condition
myself, not trained as a movement
331
00:21:59,684 --> 00:22:03,644
disorder specialist or a Parkinson's
specialist, I must emphasize, but,
332
00:22:03,644 --> 00:22:08,984
um, it's pretty strong motivation
to, to read and learn a lot about it.
333
00:22:09,738 --> 00:22:10,933
when you've got it and.
334
00:22:13,308 --> 00:22:14,598
And that, and that's helpful.
335
00:22:14,688 --> 00:22:16,938
Um, there have been studies that have
shown that, that the more you know
336
00:22:16,938 --> 00:22:21,844
about a condition, the better your
outcome, uh, with the caveat being
337
00:22:21,844 --> 00:22:27,164
that you, you're getting verified,
proper, genuine, authentic information.
338
00:22:27,164 --> 00:22:30,164
And one of the things I do
spend a bit of time with is,
339
00:22:30,164 --> 00:22:32,174
uh, ensuring people know how to.
340
00:22:32,579 --> 00:22:37,049
Sort out the, the, the good stuff
from the bad stuff in terms of
341
00:22:37,049 --> 00:22:39,089
the information and Dr. Google.
342
00:22:40,229 --> 00:22:44,479
the simplest way really is to, Look
at the major organizations and their
343
00:22:44,479 --> 00:22:49,009
websites, for example, Parkinson's,
Australia, Parkinson's, Michael J.
344
00:22:49,009 --> 00:22:49,939
Fox Foundation.
345
00:22:50,749 --> 00:22:56,583
all those have, the information, brochures
and materials on their websites have all
346
00:22:56,583 --> 00:22:58,383
been vetted by specialists in the area.
347
00:22:59,223 --> 00:23:03,526
and, uh, so something that pops up on
Facebook, is quite a different level
348
00:23:03,526 --> 00:23:06,586
of, value of information compared to
something that's come through one of
349
00:23:06,586 --> 00:23:07,816
those other sources that I've cited.
350
00:23:08,400 --> 00:23:11,634
There's a lot of things in the world
that are like that, that, uh, all
351
00:23:11,634 --> 00:23:13,914
sorts of things fly around on socials.
352
00:23:13,974 --> 00:23:19,010
But, thinking about where you've been,
what is it that you're doing nowadays?
353
00:23:19,190 --> 00:23:22,370
Like you talked about advocacy
and what does that look like?
354
00:23:22,886 --> 00:23:25,961
I'm, I'm on the board of Parkinson's,
Western Australia, and also the
355
00:23:25,961 --> 00:23:27,371
board of Parkinson's Australia.
356
00:23:28,094 --> 00:23:31,664
they both have slightly different
functions, so Parkinson's
357
00:23:31,664 --> 00:23:36,434
Western Australia is, is, mainly
focuses on delivery of services
358
00:23:36,974 --> 00:23:38,234
to people with Parkinson's.
359
00:23:38,594 --> 00:23:41,654
And the, the core strength
is a team of visiting.
360
00:23:42,119 --> 00:23:45,299
Home nurses who are specialists in
Parkinson's who will go out to the,
361
00:23:45,389 --> 00:23:50,669
the home, and initially help with the,
uh, all the practical questions and
362
00:23:50,669 --> 00:23:54,779
things that come up in the, the first
few weeks to months after diagnosis.
363
00:23:57,629 --> 00:24:02,609
Parkinson's WA puts on events such as a,
a newly diagnosed seminar information,
364
00:24:02,754 --> 00:24:05,369
e events every, every few months.
365
00:24:05,399 --> 00:24:07,749
Um, uh, for example on the.
366
00:24:07,934 --> 00:24:13,634
A April the 30th, I'm giving a, a
presentation about, exercise and its
367
00:24:13,634 --> 00:24:18,734
role in the therapy for Parkinson's
in combination with a, a colleague
368
00:24:18,734 --> 00:24:21,884
of mine, a physiotherapist from
Tasmania named Michelle Kaseya,
369
00:24:21,884 --> 00:24:23,954
who also has Parkinson's disease.
370
00:24:24,434 --> 00:24:29,084
So she too is doing pretty much what
I'm doing, uh, down in Tasmania, and
371
00:24:29,084 --> 00:24:31,754
she's, been very successful in, um.
372
00:24:32,277 --> 00:24:35,487
Starting to make changes into
the improvements of care in, in
373
00:24:35,487 --> 00:24:39,987
Tasmania, and also contributed to
a online learning tool that's been
374
00:24:40,317 --> 00:24:41,637
widely used throughout the world.
375
00:24:42,477 --> 00:24:49,677
so I spend my, uh, days now giving talks
and lectures about, uh, Parkinson's.
376
00:24:50,197 --> 00:24:54,790
The boxing program that I developed with
Ray Fazio, it keeps, keeps me quite busy.
377
00:24:54,790 --> 00:25:00,940
I, I train two, two nights a week, uh,
at, at a gym with, uh, about, usually
378
00:25:01,840 --> 00:25:03,340
to 15 other people with Parkinson's.
379
00:25:03,340 --> 00:25:07,930
We have a, a, a, a group at, um, of
us that's now more than a hundred
380
00:25:07,930 --> 00:25:13,270
people with Parkinson's, and have
about five or six sessions per week at,
381
00:25:13,270 --> 00:25:15,579
uh, a big gym in, the center of town.
382
00:25:15,579 --> 00:25:16,659
In, in, in.
383
00:25:16,809 --> 00:25:18,136
The, city of Vincent.
384
00:25:19,246 --> 00:25:23,836
And, uh, we also have a regular Friday
morning yoga class, which with, with
385
00:25:23,851 --> 00:25:29,420
my, with my, my wife Kirsten, she and I
teach yoga to people with Parkinson's,
386
00:25:29,909 --> 00:25:32,069
for Parkinson's, Western Australia.
387
00:25:34,364 --> 00:25:39,186
On the national scene, with Parkinson's,
a Australia, there's a broader
388
00:25:39,186 --> 00:25:43,146
advocacy role, lobbying governments,
for example, for improved funding,
389
00:25:43,339 --> 00:25:46,429
for Parkinson's services research.
390
00:25:47,239 --> 00:25:53,479
And one of the, the big things that
I've taken a lot of interest in is
391
00:25:53,479 --> 00:25:59,059
the, issue of, environmental toxins
as being recognized as one of the
392
00:25:59,059 --> 00:26:00,739
potential triggers for Parkinson's.
393
00:26:01,969 --> 00:26:08,959
We know that 10 to 15% of cases of
Parkinson's a genetic basis based
394
00:26:08,959 --> 00:26:12,379
on analysis of the chromosomes
and, uh, and specific testing.
395
00:26:12,379 --> 00:26:17,119
But that leaves 80 to
five to 90% not genetic.
396
00:26:18,109 --> 00:26:22,669
uh, there are very strong lines of
evidence to suggest that, three major
397
00:26:22,669 --> 00:26:28,369
categories of environmental toxins,
atmospheric pollution, specific solvents.
398
00:26:29,449 --> 00:26:32,839
But probably the biggest
group is pesticides and more
399
00:26:32,839 --> 00:26:34,159
specifically herbicides.
400
00:26:34,609 --> 00:26:37,519
uh, implicated in the
causality of Parkinson's.
401
00:26:38,899 --> 00:26:42,499
We've known for many years that
specific groups of occupations
402
00:26:42,499 --> 00:26:47,059
have increased risk of Parkinson's,
particularly farmers, orchardists,
403
00:26:47,371 --> 00:26:49,621
greens keepers, wine, wine makers.
404
00:26:50,199 --> 00:26:55,824
Welders and certain, uh, heavy metal
workers, have all been linked to having
405
00:26:55,824 --> 00:26:57,684
higher risks of Parkinson's disease.
406
00:26:58,134 --> 00:27:02,514
And it turns out that many of the,
substances that those occupations handle
407
00:27:02,844 --> 00:27:05,244
are probably, uh, underlying cause.
408
00:27:06,264 --> 00:27:10,889
uh, I've been involved with the
really trying to, uh, highlight that
409
00:27:10,949 --> 00:27:14,789
and, uh, bring about some change
in terms of the, uh, herbicide
410
00:27:14,789 --> 00:27:17,249
use in, in, in, in Australia.
411
00:27:17,873 --> 00:27:23,363
herbicide use, obviously that's, that
goes into the food chain as well, so.
412
00:27:24,117 --> 00:27:24,267
Yeah.
413
00:27:24,938 --> 00:27:26,288
Talk about farmers.
414
00:27:26,618 --> 00:27:31,118
they're obviously exposed at the,
at the source, so to speak, or
415
00:27:31,118 --> 00:27:32,738
point of application, I guess.
416
00:27:33,188 --> 00:27:36,758
And then, you know, it depends
on what goes on from there.
417
00:27:37,178 --> 00:27:38,708
Welders is an interesting one.
418
00:27:38,708 --> 00:27:41,948
I'm probably not too surprised when
you think about what welding is, where
419
00:27:42,128 --> 00:27:47,542
you're, you know, using high voltage
to, to melt metals and create fumes.
420
00:27:47,542 --> 00:27:49,132
And we know that, uh, there's a lot of.
421
00:27:49,466 --> 00:27:50,781
That's the big issue there apparently.
422
00:27:51,822 --> 00:27:52,537
Oh yeah.
423
00:27:52,567 --> 00:27:52,927
Okay.
424
00:27:53,197 --> 00:27:57,367
So, and that'll be a component
of a lot of probably fluxes or
425
00:27:57,367 --> 00:28:01,117
something like that in the scheme
of things, of equipment they use.
426
00:28:01,117 --> 00:28:06,844
So, At those sources then, you
know, there's a lot of the backstop
427
00:28:06,874 --> 00:28:09,064
often becomes, uh, protection.
428
00:28:09,064 --> 00:28:14,524
But if you look at a hierarchy of
control, it's much better to eliminate
429
00:28:14,524 --> 00:28:18,535
those things rather than to, put
them into the environment, I guess.
430
00:28:19,228 --> 00:28:21,208
Look, you know, this is nothing new.
431
00:28:21,208 --> 00:28:24,838
I mean, you only have to
think about DDT, asbestos.
432
00:28:25,258 --> 00:28:29,620
those are similar, similar analogies
really to, What's been happening
433
00:28:29,620 --> 00:28:30,670
with some of the herbicides.
434
00:28:31,120 --> 00:28:32,980
The, the other one is, is solvents.
435
00:28:34,340 --> 00:28:39,650
trichlorethylene, which is now banned
in most places of the world, is
436
00:28:39,650 --> 00:28:45,080
used as a, a degreasing agent for
motor vehicles and mechanics, and
437
00:28:45,080 --> 00:28:46,940
also in dry cleaning apparently.
438
00:28:47,540 --> 00:28:51,860
And also, uh, you remember liquid
paper for, um, what whiting out,
439
00:28:52,640 --> 00:28:53,210
Those things.
440
00:28:53,674 --> 00:28:53,964
that.
441
00:28:54,515 --> 00:28:57,365
I remember you can still see
those bottles around the place.
442
00:28:57,639 --> 00:28:57,939
Yeah.
443
00:28:57,939 --> 00:28:58,359
Yeah.
444
00:28:58,719 --> 00:29:04,659
So the, the, the, the, the solvent,
uh, TCE has been heavily linked and
445
00:29:05,379 --> 00:29:09,939
its peak about, apparently in the uk,
one in 12 workers was, had something
446
00:29:09,939 --> 00:29:16,569
to do with, use, use of TCE. And then
an extraordinary, case example arises
447
00:29:16,569 --> 00:29:23,007
from, uh, the United States where A
military training camp on in North
448
00:29:23,007 --> 00:29:28,497
Carolina, seemed to have a cluster of,
uh, people who'd been to that camp as
449
00:29:28,977 --> 00:29:30,357
to, to, to become marines basically.
450
00:29:30,357 --> 00:29:36,837
You know, so we were talking about fit,
fit in their teens, early twenties.
451
00:29:37,527 --> 00:29:40,137
It was recognized that they were
getting Parkinson's disease in their,
452
00:29:40,137 --> 00:29:43,077
uh, mid thirties, early forties.
453
00:29:43,842 --> 00:29:45,972
with extraordinary high rate.
454
00:29:46,452 --> 00:29:51,462
And was found out was that the, the
Marines, you know, they, they have
455
00:29:51,882 --> 00:29:55,152
their uniforms all starched and
things for their parade and fancy,
456
00:29:56,352 --> 00:29:58,932
and the, um, the dry cleaning.
457
00:29:59,127 --> 00:30:04,767
Uh, a place that did all the uniforms was
leaking trichlorethylene into the water
458
00:30:04,767 --> 00:30:09,927
supply and so there was found to be a
70% increase in the risk of Parkinson's
459
00:30:09,927 --> 00:30:14,427
in that population, and they were able
to compare that with a, another training
460
00:30:14,427 --> 00:30:19,347
site for Marines on the other side of the,
the US with without contaminated water.
461
00:30:20,277 --> 00:30:21,897
that's an absolutely stunning.
462
00:30:22,285 --> 00:30:28,405
Piece of evidence that that clearly links
the uh, the two together toxin exposure
463
00:30:28,405 --> 00:30:30,475
to, uh, the development of the condition.
464
00:30:30,949 --> 00:30:32,089
Wow, that's incredible.
465
00:30:32,089 --> 00:30:38,344
There little things that were probably
unseen on the day, but having a, a massive
466
00:30:38,344 --> 00:30:41,224
effect on a raft of people's lives.
467
00:30:41,903 --> 00:30:42,083
Yeah.
468
00:30:42,083 --> 00:30:42,443
And often
469
00:30:42,484 --> 00:30:42,514
I.
470
00:30:42,623 --> 00:30:44,963
exposures can occur decades in advance.
471
00:30:45,203 --> 00:30:48,803
And because what I was saying before
about, the brain's ability to compensate,
472
00:30:49,283 --> 00:30:55,189
so, can get an exposure, you might be
sick somehow at, at the start, but then
473
00:30:55,189 --> 00:30:57,979
the brain is capacity to, to compensate.
474
00:30:58,399 --> 00:31:00,139
Goes, goes well for a while.
475
00:31:01,999 --> 00:31:05,329
In the typical not aging process,
the brain does, the volume of the
476
00:31:05,329 --> 00:31:06,409
brain does shrink a little bit.
477
00:31:06,499 --> 00:31:10,819
Once you're about the age of past the
age of 50, it's thought that you lose
478
00:31:10,819 --> 00:31:15,049
about 1% of the volume of your frontal
lobe and your, your, your memory circuit
479
00:31:15,049 --> 00:31:17,149
called the hippocampal lo per year.
480
00:31:18,259 --> 00:31:20,689
It's not a loss of brain cells,
it's more of a shrinkage down.
481
00:31:21,409 --> 00:31:21,949
then as that.
482
00:31:22,909 --> 00:31:24,889
Physiological shrinkage occurs.
483
00:31:25,849 --> 00:31:29,899
ability of the brain to compensate for
something that's happened before reduced.
484
00:31:30,199 --> 00:31:31,459
And so the symptoms emerge.
485
00:31:33,559 --> 00:31:37,429
uh, if you can do something to actually,
we know that exercise is one of the
486
00:31:37,429 --> 00:31:41,449
best things for maintaining that brain
volume, but if we could, uh, learn how
487
00:31:41,509 --> 00:31:47,903
to, use less, toxic, uh, materials and
avoid them, That too would actually be
488
00:31:47,968 --> 00:31:52,523
a, a huge, a huge step towards reducing
the burden of Parkinson's disease.
489
00:31:53,248 --> 00:31:55,498
And that burden is
looking like it's growing.
490
00:31:55,498 --> 00:31:55,923
Is that correct?
491
00:31:56,942 --> 00:32:03,692
So the World Health Organization in,
uh, has undertaken studies called
492
00:32:03,932 --> 00:32:09,002
the Global Burden of Diseases, in
1990 they found 2.8 million people
493
00:32:09,002 --> 00:32:10,862
in the world had Parkinson's.
494
00:32:12,917 --> 00:32:18,467
25 years later in 2015 that it doubled
over 6 million and then it only took
495
00:32:18,467 --> 00:32:24,497
another six years through to 2021 for
it to go up to 12 million so that the
496
00:32:24,497 --> 00:32:30,827
slope of that graph is woo, and that's
far in excess of the rate of aging.
497
00:32:31,007 --> 00:32:36,240
See, the aging of the population,
doesn't explain that almost, uh.
498
00:32:37,365 --> 00:32:39,825
Ski jump, slope of the curve upwards.
499
00:32:40,545 --> 00:32:44,242
And, uh, it's interesting, you
look at the, her, her herbicide
500
00:32:44,242 --> 00:32:48,322
use globally has, has gone up a
bit like same shape of the curve.
501
00:32:49,072 --> 00:32:51,592
You also look, the other
factor I mentioned was, um.
502
00:32:52,387 --> 00:32:52,927
pollution.
503
00:32:53,227 --> 00:33:01,483
And, uh, we know from of China that
the air pollution stats, have gone
504
00:33:01,483 --> 00:33:05,023
up, uh, in parallel with the amount
of people getting Parkinson's.
505
00:33:05,983 --> 00:33:12,253
And historically, interestingly, when
James Parkinson's described six patients
506
00:33:12,463 --> 00:33:16,243
or six people had seen in London, that
was at the height of the industrial
507
00:33:16,243 --> 00:33:18,118
Revolution in the s smoggy London fog.
508
00:33:19,678 --> 00:33:25,573
And, uh, it, it's interesting that
Parkinson's disease had symptoms, hadn't
509
00:33:25,573 --> 00:33:28,423
really been recognized, up until then.
510
00:33:29,233 --> 00:33:33,463
there may have been some reports
coming out of India, from the be,
511
00:33:33,553 --> 00:33:36,223
from the before, before Christ time.
512
00:33:36,223 --> 00:33:42,122
But, unlike other conditions like
seizures and, Stroke, which have been
513
00:33:42,122 --> 00:33:44,012
recognized for thousands of years.
514
00:33:44,702 --> 00:33:47,642
not really many reports
of of Parkinson's disease.
515
00:33:48,302 --> 00:33:50,972
And it may be an effect of,
516
00:33:53,283 --> 00:33:58,353
long period of exposure to, uh,
development and longevity is
517
00:33:58,413 --> 00:34:02,505
increased over the years, there is
an argument to say that, perhaps.
518
00:34:03,885 --> 00:34:07,965
These, uh, Parkinson's wasn't
recognized in antiquity because
519
00:34:08,775 --> 00:34:11,505
air pollution didn't really come
along to the industrial revolution.
520
00:34:12,421 --> 00:34:12,711
That.
521
00:34:12,975 --> 00:34:13,365
of this,
522
00:34:14,386 --> 00:34:14,676
Yeah.
523
00:34:15,071 --> 00:34:15,161
Yeah.
524
00:34:15,161 --> 00:34:21,101
That's sort of suggesting that it, it's
appearing at around the same time as
525
00:34:21,101 --> 00:34:26,231
the, air pollution is appearing like
for a, a big part of the population.
526
00:34:26,236 --> 00:34:26,456
Yeah.
527
00:34:27,390 --> 00:34:31,080
And so even though the impact of air
pollution might only statistically
528
00:34:31,080 --> 00:34:36,990
have a small effect on individuals
globally, it's got a huge impact.
529
00:34:36,990 --> 00:34:45,037
And we also know that, um, a lot of the
herbicides and pesticides, and w wind up
530
00:34:45,037 --> 00:34:46,897
having materials in, in, in the clouds.
531
00:34:47,047 --> 00:34:52,417
And, uh, are estimates of x number
of tons of, Herbicides circulating in
532
00:34:52,417 --> 00:34:55,763
the, in the atmosphere, above Europe.
533
00:34:55,763 --> 00:35:01,203
And, there have been, uh, reports
of, Identifying, uh, pesticides in,
534
00:35:01,203 --> 00:35:07,773
in, in rainwater and, uh, in, for
example, uh, in countries, countries in
535
00:35:07,773 --> 00:35:09,183
Europe where something's been banned.
536
00:35:09,423 --> 00:35:15,494
But the neighboring co country hasn't
banned a, pesticide, and it's thought
537
00:35:15,494 --> 00:35:17,894
that the wind drift, uh, brings it across.
538
00:35:19,454 --> 00:35:21,764
So it's not just necessarily the
people who are exposed at the
539
00:35:21,764 --> 00:35:24,164
coalface, uh, spraying the fields.
540
00:35:24,164 --> 00:35:26,654
It's, it's, it can be far
more widespread than that.
541
00:35:27,236 --> 00:35:29,898
You think about, things like PFAS.
542
00:35:29,898 --> 00:35:34,788
So we've got Fogo, so, uh, food,
organic garden organic collections.
543
00:35:34,788 --> 00:35:41,264
Here it goes to a. Facility that, has
identified to be contaminated with
544
00:35:41,264 --> 00:35:47,324
PFAS, which are forever chemicals, and
they've effectively shut down that,
545
00:35:47,324 --> 00:35:52,664
service because the, the chemicals
are coming in through the, the food
546
00:35:52,664 --> 00:35:56,054
organics and the garden organics
that are being put into the system.
547
00:35:56,804 --> 00:35:58,094
it's a very complex.
548
00:35:58,889 --> 00:36:03,809
Scenario becomes a mixture
of chemicals that potentially
549
00:36:03,899 --> 00:36:05,189
are very harmful to people.
550
00:36:05,612 --> 00:36:08,942
Uh, I think there seems to be
little doubt in the mind of many
551
00:36:08,972 --> 00:36:11,672
researchers around the world that
we, we, we are poisoning ourselves.
552
00:36:11,732 --> 00:36:14,588
And, uh, it's pretty,
pretty obvious really,
553
00:36:15,795 --> 00:36:21,045
is offering the practices and habits
and, ingrained practices that,
554
00:36:21,045 --> 00:36:22,695
uh, have led us down this road.
555
00:36:23,715 --> 00:36:27,105
uh, backing up is gonna
be quite difficult.
556
00:36:28,635 --> 00:36:31,905
But, uh, thankfully there is a lot
of work on, for example, organic
557
00:36:31,905 --> 00:36:37,455
farming and regenerative methods of,
of agriculture that, um, in fact,
558
00:36:37,455 --> 00:36:41,445
there's some really big names in that
world in, in, in Western Australia who,
559
00:36:41,505 --> 00:36:43,485
uh, making some progress in the area.
560
00:36:43,485 --> 00:36:46,365
So, and it's fascinating how.
561
00:36:47,080 --> 00:36:50,830
You know, diseases like Parkinson's
and, and if motor neuron disease is
562
00:36:50,830 --> 00:36:56,988
another one where environmental, have
been recognized, for example, Bluegreen
563
00:36:56,988 --> 00:37:01,608
algae, As a side effect of, uh,
fertilizers running off into water bodies.
564
00:37:01,938 --> 00:37:05,628
there, there are toxins within
that that are, uh, strikingly
565
00:37:05,628 --> 00:37:07,278
associated with motor neuron disease.
566
00:37:08,148 --> 00:37:13,805
um, in terms of neurological conditions,
uh, know, the environmental aspect
567
00:37:13,805 --> 00:37:18,662
is, is enormous and, there's a lot
gonna be ha lot, lot ha happening
568
00:37:18,662 --> 00:37:20,222
in that, in that area at the moment.
569
00:37:20,897 --> 00:37:24,587
you look at that and you go, you
know, wow, what are we doing?
570
00:37:25,551 --> 00:37:25,881
Yeah.
571
00:37:25,971 --> 00:37:26,361
Yeah.
572
00:37:27,261 --> 00:37:27,861
So David,
573
00:37:28,300 --> 00:37:33,280
doing in terms of advocacy, I'm,
I'm involved with a lot of that.
574
00:37:33,310 --> 00:37:33,580
Yeah.
575
00:37:34,160 --> 00:37:39,590
And that sounds like great work that
really helps the, the people who are being
576
00:37:39,590 --> 00:37:42,050
DI diagnosed with Parkinson's disease.
577
00:37:42,634 --> 00:37:42,874
Yeah.
578
00:37:42,904 --> 00:37:43,024
Uh,
579
00:37:43,125 --> 00:37:43,245
I.
580
00:37:44,164 --> 00:37:47,764
that, that advocacy and
is not, is not my work.
581
00:37:47,764 --> 00:37:50,044
It's the work of many others
around the world, but I'm just
582
00:37:50,044 --> 00:37:52,894
trying to bring it to the fore and,
make sure people understand it.
583
00:37:53,584 --> 00:37:57,034
my, my, my specific sort of
contributions are, are more related
584
00:37:57,034 --> 00:38:01,197
to the, uh, Helping people get
through that initial phase actually.
585
00:38:01,197 --> 00:38:06,357
And one of the things that does me
is that, is the, the way that the
586
00:38:06,357 --> 00:38:10,137
diagnosis is framed and presented
to the patient, can have a very big
587
00:38:10,137 --> 00:38:18,447
impact upon their, their attitude
and, uh, their, um, outlook on life.
588
00:38:18,447 --> 00:38:20,727
And, uh, if it.
589
00:38:20,802 --> 00:38:26,135
If things are painted in a very
negative fashion, can drive people
590
00:38:26,135 --> 00:38:30,843
to, uh, really drop their bundle
and, uh, enter a spiral downwards
591
00:38:30,843 --> 00:38:32,013
from which they may never recover.
592
00:38:33,213 --> 00:38:36,873
But conversely, if it's pointed
out that, hey, now we've actually
593
00:38:36,873 --> 00:38:40,263
recognized what you've got, can
start you on some treatment.
594
00:38:40,777 --> 00:38:44,227
we can focus on, uh, a holistic approach.
595
00:38:44,617 --> 00:38:48,367
Get, get your medicines right, get your
diet right, get your exercise optimized.
596
00:38:48,817 --> 00:38:52,387
People can feel better than
they have for many years and.
597
00:38:53,182 --> 00:38:57,052
got many examples of patients who,
paradoxically, are living much better than
598
00:38:57,052 --> 00:39:02,422
they otherwise would've because the, the
diagnosis gives them such a, um, stimulus
599
00:39:02,482 --> 00:39:04,132
to actually lead a healthier lifestyle.
600
00:39:05,572 --> 00:39:08,542
for, for example, people who might
not have ever exercised before,
601
00:39:08,572 --> 00:39:16,942
start taking it up uh, they, end
up being fitter, healthier, and
602
00:39:16,942 --> 00:39:18,952
have, uh, perhaps a more, um.
603
00:39:20,032 --> 00:39:21,442
Positive attitude towards life.
604
00:39:21,442 --> 00:39:21,862
And,
605
00:39:22,656 --> 00:39:29,567
Hope is the exact ingredient that that
is, one of the famous, Neurologists from
606
00:39:29,567 --> 00:39:31,923
the Netherlands, named Bastiaan Bloem.
607
00:39:31,977 --> 00:39:35,661
He, he, he, he had a patient who
talked about, we talked about dopamine
608
00:39:35,661 --> 00:39:42,161
replacement in Parkinson's, and she, she,
Bas's patient, coined the term hopamine.
609
00:39:42,855 --> 00:39:47,055
If you give people hope, that really,
uh, can open up the world for them.
610
00:39:47,070 --> 00:39:47,490
and, uh.
611
00:39:48,345 --> 00:39:52,185
I was about to say you, you know,
about posttraumatic stress disorder.
612
00:39:52,748 --> 00:39:54,638
there is such a thing as
post-traumatic growth.
613
00:39:55,478 --> 00:40:00,098
the concept is you, you have a, a bad
diagnosis or something happened to you and
614
00:40:00,098 --> 00:40:02,258
your attitude to, to the world changes.
615
00:40:02,588 --> 00:40:05,955
So you start to appreciate
day-to-day things, more readily.
616
00:40:06,315 --> 00:40:08,115
You don't get upset
about the small things.
617
00:40:08,595 --> 00:40:14,025
You go and do your bucket list, you
start doing stuff now and living um.
618
00:40:14,745 --> 00:40:16,245
I felt a bit like that, frankly.
619
00:40:16,275 --> 00:40:20,216
And, uh, it's, it's a much
better way to, to approach it.
620
00:40:20,216 --> 00:40:25,406
And, uh, I've been very interested
in, in the words that we use to
621
00:40:25,406 --> 00:40:30,495
help, to, to, to, to people with
diagnosis and the way you do it.
622
00:40:31,146 --> 00:40:35,126
there are examples from other fields,
for example, where, for example, brain
623
00:40:35,126 --> 00:40:37,856
tumors often got a very grim prognosis.
624
00:40:37,856 --> 00:40:43,946
And, uh, the, a, I remember hearing
someone who said this surgeon was
625
00:40:43,946 --> 00:40:48,926
very good surgeon did extra operation,
but said, oh, 80% of people are
626
00:40:48,926 --> 00:40:50,336
gonna be dead within five years.
627
00:40:51,566 --> 00:40:54,206
you flip it around the other
way, 20% of people are gonna
628
00:40:54,206 --> 00:40:55,616
be alive after five years.
629
00:40:56,441 --> 00:40:59,051
Let's see what we can do to
make sure you've got the maximal
630
00:40:59,051 --> 00:41:00,701
chance to be in that 20%.
631
00:41:01,181 --> 00:41:05,351
So just flipping things around,
um, it can make a huge difference
632
00:41:05,351 --> 00:41:06,641
to a person's perception
633
00:41:07,361 --> 00:41:08,831
Only are you what you eat.
634
00:41:09,041 --> 00:41:11,111
You're all you are also what you think.
635
00:41:12,075 --> 00:41:15,135
And that gets back to what I was
saying before about that almost kind
636
00:41:15,135 --> 00:41:19,635
of our brains are probably based on
predictive algorithms of behavior.
637
00:41:19,635 --> 00:41:23,775
You know, we have, we have our own
algorithm ticking away, uh, that,
638
00:41:24,105 --> 00:41:25,705
uh, probably leads us on and, uh.
639
00:41:26,490 --> 00:41:29,190
The well-recognized phenomena
of self-fulfilling prophecy.
640
00:41:29,610 --> 00:41:33,210
If you tell someone something's gonna
happen, uh, it, it, it will happen.
641
00:41:33,390 --> 00:41:37,155
And, uh, think that is something that
really needs to be harnessed and, uh,
642
00:41:37,734 --> 00:41:42,414
providing, uh, that hope is such a
huge, huge component because you take
643
00:41:42,414 --> 00:41:43,824
away hope and there's nothing left.
644
00:41:44,119 --> 00:41:47,399
And, uh, uh, it's a big stimulant.
645
00:41:54,263 --> 00:41:59,863
So David, If someone wanted to be
advocating for a cause like you
646
00:41:59,863 --> 00:42:02,323
are, uh, how would they go about it?
647
00:42:02,684 --> 00:42:05,894
Probably the best thing is to look
at the Parkinson's Australia website
648
00:42:05,954 --> 00:42:10,994
that's got, links to various different
aspects, uh, including the herbicide one.
649
00:42:11,648 --> 00:42:15,908
and there's, there are petitions
that could be signed and, um.
650
00:42:17,153 --> 00:42:21,323
Information sheets that can be signed,
uh, about approaching local councils
651
00:42:21,323 --> 00:42:26,363
for not spraying glyphosate and things
on the park where your kids walk.
652
00:42:26,363 --> 00:42:29,609
And so, so there are
the big national body.
653
00:42:29,609 --> 00:42:32,669
Parkinson's Australia is the
best, best group for the advocacy.
654
00:42:33,382 --> 00:42:39,255
Supporting causes like Parkinson's,
Western Australia by donating, helps
655
00:42:39,255 --> 00:42:43,245
to provide service to people with
Parkinson's and practical day-to-day help.
656
00:42:44,535 --> 00:42:46,635
so those are the ways that
people can get involved.
657
00:42:46,785 --> 00:42:52,092
And, uh, one of the, um, most satisfying
things that I've been involved with is,
658
00:42:53,272 --> 00:42:58,478
between Parkinson's WA and the Perin
Institute where we have a, clinic for
659
00:42:58,898 --> 00:43:00,878
newly diagnosed people to support them.
660
00:43:01,195 --> 00:43:06,025
So quite often we'll hear a story that
the patient goes to see a specialist,
661
00:43:06,025 --> 00:43:09,265
they get the diagnosis, then after
you've heard the words, you've got
662
00:43:09,265 --> 00:43:13,105
Parkinson's, often similar with cancer.
663
00:43:13,555 --> 00:43:17,575
It's very hard to the patient
to take much else in after that.
664
00:43:17,575 --> 00:43:23,335
It's such a shock Walking out
thinking, just hearing, oh, I'll
665
00:43:23,335 --> 00:43:24,505
see you back in six months time.
666
00:43:24,505 --> 00:43:25,165
Here's a script.
667
00:43:26,035 --> 00:43:28,405
And even if the doctor has been
a really good communicator and,
668
00:43:28,645 --> 00:43:32,665
and said or provided all the
information, it just doesn't sink in.
669
00:43:33,745 --> 00:43:34,225
And so.
670
00:43:35,860 --> 00:43:39,280
Parkinson's WA would be getting
something like 10,000 phone calls
671
00:43:39,280 --> 00:43:43,600
or emails per year, and the majority
of them being by distressed people,
672
00:43:44,050 --> 00:43:47,110
uh, with their diagnosis and
their family wanting to know more.
673
00:43:48,100 --> 00:43:51,430
um, a long time to wait six
months for your, your clinic
674
00:43:51,610 --> 00:43:52,840
appointment in the hospital.
675
00:43:53,260 --> 00:43:54,100
And so, um.
676
00:43:55,435 --> 00:43:59,943
Traditionally, we've had the Parkinson's
nurses, go out to the house, but that's
677
00:43:59,943 --> 00:44:04,593
becoming, there's three and a half,
thousand patients on Parkinson's W'S
678
00:44:04,593 --> 00:44:11,133
books and uh, I think we were seven
or eight nurses, but only about four
679
00:44:11,133 --> 00:44:13,593
or five FTE equivalent in total.
680
00:44:14,433 --> 00:44:16,138
it's a huge amount of people, so.
681
00:44:17,016 --> 00:44:18,366
to cut across that weight.
682
00:44:18,756 --> 00:44:21,396
we've set up this clinic every
second Thursday of the month.
683
00:44:21,786 --> 00:44:26,016
we have, uh, uh, a couple of Parkinson's
nurses, one from Parkinson's wa, one
684
00:44:26,016 --> 00:44:31,665
from Perrin, Parkinson's Physiotherapy
Specialists, myself and a group of
685
00:44:31,875 --> 00:44:33,825
Parkinson's buddies I call them.
686
00:44:34,125 --> 00:44:36,765
So people who have been diagnosed
maybe three or five years down the
687
00:44:36,765 --> 00:44:41,295
line who've been through all this
stuff and they come along as well.
688
00:44:42,435 --> 00:44:42,675
uh.
689
00:44:43,620 --> 00:44:47,735
have small group sessions of maybe,
three to five newly diagnosed people
690
00:44:47,735 --> 00:44:52,056
with sometimes their family members,
and we provide them with, support
691
00:44:52,206 --> 00:44:57,066
information, teach them how to find the,
the, the good information I was talking
692
00:44:57,066 --> 00:45:04,116
about, where to find physiotherapists,
exercise programs, uh, mainly to hear
693
00:45:04,206 --> 00:45:08,046
and see people who are living well
with Parkinson's to give them that,
694
00:45:08,526 --> 00:45:11,677
example got that clinic this Thursday.
695
00:45:12,157 --> 00:45:15,727
so that's just an example of along
that paradigm of just trying to make
696
00:45:15,727 --> 00:45:19,537
that mental shift, to introduce hope
with positivity rather than, uh,
697
00:45:20,077 --> 00:45:22,627
it's the end, the end of the world.
698
00:45:23,065 --> 00:45:27,925
That sounds like, uh, such an
important, thing to, to be a part of.
699
00:45:28,122 --> 00:45:32,502
And I think that the, the buddies
who, who, uh, coming on the roster
700
00:45:32,502 --> 00:45:36,342
to, to help find it incredibly, uh,
helpful for themselves actually.
701
00:45:37,002 --> 00:45:43,542
it's interesting that the, um, it's
thought that, When you, um, volunteer or
702
00:45:43,722 --> 00:45:48,552
make a donation or acts of philanthropy,
probably actually helped to boost
703
00:45:48,612 --> 00:45:50,882
dopamine, in, in, in the brain.
704
00:45:50,882 --> 00:45:55,502
So helping other people out
with Parkinson's, uh, helps
705
00:45:55,832 --> 00:45:57,062
Parkinson's people themselves.
706
00:45:57,062 --> 00:45:57,152
So I
707
00:45:58,187 --> 00:45:59,682
a, a bit of a kick out of it too.
708
00:46:00,323 --> 00:46:03,833
Let's talk about the one thing,
David, that you've got out there
709
00:46:03,833 --> 00:46:07,883
that's available to people at any
time and exactly when they need it.
710
00:46:08,483 --> 00:46:12,489
and, people didn't put two and
two together through the indie
711
00:46:12,489 --> 00:46:15,669
author book Fair that, uh, you've
actually put out a book as well.
712
00:46:15,948 --> 00:46:18,018
so what does the, the book cover.
713
00:46:18,967 --> 00:46:23,456
So the, the book focuses really on
the, the time around my diagnosis.
714
00:46:23,846 --> 00:46:26,666
I, I give a bit of my background
and my training and where I've,
715
00:46:26,726 --> 00:46:27,836
who I am and where I'm from.
716
00:46:27,836 --> 00:46:30,176
I'm, I'm actually from Bunbury,
that's where I was born.
717
00:46:30,610 --> 00:46:35,710
but it focuses on that experience of
moving from being the doctor to the
718
00:46:35,710 --> 00:46:40,437
patient and, uh, The bumps along the way.
719
00:46:40,707 --> 00:46:45,387
And, uh, I describe, uh, some of
the opportunities that have unfolded
720
00:46:45,657 --> 00:46:48,237
that I had not really anticipated.
721
00:46:48,660 --> 00:46:53,832
I could never imagine that I'd be,
collaborating with, uh, Ray FAO on, a
722
00:46:53,862 --> 00:46:55,752
boxing program for Parkinson's disease.
723
00:46:56,232 --> 00:46:59,532
And, uh, that's been a tremendous
turnaround in my life, really helping
724
00:46:59,532 --> 00:47:01,837
to, get me fit again and move again.
725
00:47:02,377 --> 00:47:07,837
it's given me an opportunity to,
uh, perhaps make, uh, any impact
726
00:47:07,837 --> 00:47:10,057
in more people's lives and even.
727
00:47:10,612 --> 00:47:15,652
In my career as, as a, as a, as a
stroke doctor and, uh, the, the power
728
00:47:15,652 --> 00:47:17,362
of shared experience is, is incredible.
729
00:47:17,927 --> 00:47:21,982
and, and then I focus on some ups and
downs and, how I've managed with them.
730
00:47:22,642 --> 00:47:29,032
And I also have, um, present my
ideas about how, uh, framing the,
731
00:47:29,092 --> 00:47:34,072
the diagnosis with more optimism and
hope can potentially, make an impact
732
00:47:34,072 --> 00:47:35,542
on the, the course of the disease.
733
00:47:36,352 --> 00:47:39,687
I am pleased to say that it's also
given me an opportunity to, to
734
00:47:39,687 --> 00:47:43,227
speak about these issues with the,
hundreds of people with Parkinson's.
735
00:47:43,317 --> 00:47:46,497
And, uh, I hope that, that, uh,
there'll be many more who can
736
00:47:46,497 --> 00:47:49,137
benefit from it and in, um, in May.
737
00:47:49,992 --> 00:47:52,452
Provided the world's still stable enough.
738
00:47:52,929 --> 00:47:58,539
I've been in invited to be the world
Parkinson's Congress in Phoenix, Arizona,
739
00:47:59,109 --> 00:48:02,469
which is a very unique conference,
the world Parkinson's conferences,
740
00:48:02,469 --> 00:48:06,819
'cause they have four or 5,000
attendees and they're roughly equal
741
00:48:06,819 --> 00:48:08,349
amounts of people with Parkinson's.
742
00:48:08,349 --> 00:48:12,639
And they're their support people,
scientists and clinicians.
743
00:48:12,819 --> 00:48:17,109
And, uh, there've been six of them
before, and I, the first one I
744
00:48:17,109 --> 00:48:19,269
went to was in Barcelona in 2022.
745
00:48:19,749 --> 00:48:24,118
And it was an amazing experience just
to, to be in that audience with, all
746
00:48:24,148 --> 00:48:27,898
these different people who've got
different relationships with Parkinson's.
747
00:48:28,401 --> 00:48:31,101
All working together to actually
try and make their lives better.
748
00:48:31,611 --> 00:48:35,356
And uh, some people said,
oh, you're traveling at this.
749
00:48:36,501 --> 00:48:37,671
Risky time in the world.
750
00:48:38,150 --> 00:48:40,790
I think the risk is gonna be worth
it because there's many people who
751
00:48:40,790 --> 00:48:44,300
I've actually made contact with
who haven't met face-to-face in the
752
00:48:44,300 --> 00:48:47,930
Parkinson's world, who'd be tremendous
to actually meet them in person.
753
00:48:48,680 --> 00:48:53,930
And I've also, uh, on a list of about
six people who actually are going to
754
00:48:53,930 --> 00:48:55,880
be, uh, presenting their books as well.
755
00:48:55,880 --> 00:49:00,020
So there's a, uh, a section for,
for Parkinson's books that have been
756
00:49:00,020 --> 00:49:01,280
published in the last year or so.
757
00:49:01,880 --> 00:49:04,520
And I do know a, um, I
made contact with a, uh.
758
00:49:05,308 --> 00:49:11,520
previous anesthetist in, uh, the US who's,
uh, got Parkinson's herself and, uh.
759
00:49:12,540 --> 00:49:17,100
There's a, a emergency doctor
named Johnny Ton from the UK
760
00:49:17,400 --> 00:49:19,440
who has done a similar thing.
761
00:49:19,440 --> 00:49:22,530
He's written a book about his experience
as well, but I don't think he's
762
00:49:22,530 --> 00:49:23,520
gonna be able to be at the meeting.
763
00:49:23,520 --> 00:49:25,890
But there are at least two other
doctors with Parkinson's who've
764
00:49:25,890 --> 00:49:29,610
written books about their own
experience, uh, in the last year or so.
765
00:49:29,610 --> 00:49:32,910
So that makes three of us
who've written about this topic.
766
00:49:32,910 --> 00:49:34,421
So, for our.
767
00:49:34,991 --> 00:49:37,511
Other fellow Parkinson's, people.
768
00:49:37,783 --> 00:49:41,773
there, there's, there's plenty of juicy
reading material that around to hopefully
769
00:49:41,773 --> 00:49:44,518
give them some, uh, some optimism.
770
00:49:44,888 --> 00:49:46,758
Have you had an opportunity
to read their books?
771
00:49:47,632 --> 00:49:48,172
Yes, yes.
772
00:49:48,322 --> 00:49:48,832
Very quickly.
773
00:49:48,832 --> 00:49:49,702
Yes, absolutely.
774
00:49:50,182 --> 00:49:52,762
and there's lots of common experiences.
775
00:49:53,106 --> 00:49:56,949
all of us come from slightly different
angles and, uh, For, for Sarah,
776
00:49:57,039 --> 00:50:02,497
Whittingham, the American, anesthetist,
she, she hadn't expected at all.
777
00:50:02,497 --> 00:50:07,447
It was a big, big shock to her as it was
to, to Johnny, uh, Atkinson in the uk.
778
00:50:07,807 --> 00:50:09,277
so they both had much more.
779
00:50:09,926 --> 00:50:14,066
abrupt realizations of what it was
rather than my sort of slow introduction.
780
00:50:14,816 --> 00:50:19,210
And, uh, so it impacted them on in
different ways but, but I think both of
781
00:50:19,210 --> 00:50:23,560
them have also found the, the, the, the
support within the Parkinson's community
782
00:50:23,560 --> 00:50:29,924
being, quite unique really, um, in terms
of the camaraderie and togetherness of it.
783
00:50:30,256 --> 00:50:32,596
It's something I, I don't
think is paralleled in many
784
00:50:32,596 --> 00:50:35,170
other, medical conditions.
785
00:50:35,568 --> 00:50:39,715
It's interesting how some people
come together in community under
786
00:50:39,745 --> 00:50:41,935
different circumstances and it,
and it builds a different thing.
787
00:50:43,309 --> 00:50:43,909
Yeah, yeah.
788
00:50:44,209 --> 00:50:47,479
Well, I've actually, I actually
formed a, in collaboration with it.
789
00:50:48,244 --> 00:50:50,734
A psychiatry colleague who
has Parkinson's herself.
790
00:50:51,154 --> 00:50:55,264
We formed a support group specifically
for doctors with Parkinson's in, in wa.
791
00:50:55,744 --> 00:51:01,684
We've got a dozen members at the moment,
and, uh, they're a wide range of issues
792
00:51:01,684 --> 00:51:07,323
that, uh, are relevant and, uh, it, it's,
it's modeled a bit on to joining Aon.
793
00:51:07,953 --> 00:51:14,553
The, uh, the British, um, ed physician,
Formed a large WhatsApp group for
794
00:51:15,303 --> 00:51:19,533
practitioners in the NHS, not just
doctors, but physios, nurses, dentists.
795
00:51:19,953 --> 00:51:21,993
And there's about 70 people on that list.
796
00:51:22,443 --> 00:51:25,773
And, uh, Michelle, the
physiotherapist in Tasmania and
797
00:51:25,773 --> 00:51:28,623
myself, uh, uh, added on as extras.
798
00:51:29,073 --> 00:51:30,541
And, within their WhatsApp group.
799
00:51:30,541 --> 00:51:31,616
They've got various different.
800
00:51:32,206 --> 00:51:37,141
Streams, about, retirement issues,
data life, practical problems,
801
00:51:37,141 --> 00:51:39,241
issues, medical practice issues.
802
00:51:39,691 --> 00:51:42,331
And, um, we have a weekly question.
803
00:51:42,511 --> 00:51:44,131
So one, once a week there's a writer.
804
00:51:45,151 --> 00:51:47,581
So you put a question to the
group and there's a response.
805
00:51:48,151 --> 00:51:51,241
And actually it's my turn in about
two weeks time, so I've gotta think
806
00:51:51,241 --> 00:51:53,191
of a good, provocative question.
807
00:51:53,661 --> 00:51:54,351
but, uh.
808
00:51:54,936 --> 00:51:58,146
One of the examples of the benefits
that have come out of that is, is John
809
00:51:58,146 --> 00:52:02,196
did a lot of work on, the importance
of continuing medications in hospital.
810
00:52:02,916 --> 00:52:03,471
So one of the.
811
00:52:04,071 --> 00:52:07,041
Most dangerous places for a person
with Parkinson's is to be admitted
812
00:52:07,041 --> 00:52:11,181
to hospital for some other cause, uh,
some other, uh, other medical problem.
813
00:52:11,661 --> 00:52:14,151
and your medications get outta sync.
814
00:52:14,271 --> 00:52:15,441
your diets change.
815
00:52:15,441 --> 00:52:20,991
You might be fasting and your regime,
particularly in advanced Parkinson's,
816
00:52:21,231 --> 00:52:24,531
often is really critical to get
your timing of your medicines right.
817
00:52:24,801 --> 00:52:28,281
For example, I take a tablet
every three hours and also have to
818
00:52:28,281 --> 00:52:31,011
time my meals to, to, to be, uh.
819
00:52:31,601 --> 00:52:33,431
Spaced a little bit apart from the tablet.
820
00:52:33,461 --> 00:52:37,511
'cause if you take the tablet at the
same time as the, as the meal, the tablet
821
00:52:37,511 --> 00:52:38,981
doesn't get absorbed as effectively.
822
00:52:39,461 --> 00:52:44,531
And so, uh, it's a bit of a, a balance,
which can be completely upset in hospital.
823
00:52:44,531 --> 00:52:48,911
And, and there are other medicines that
actually worsen Parkinson's disease.
824
00:52:49,511 --> 00:52:53,626
And, uh, so, so with John's work,
he actually was able to get a,
825
00:52:54,216 --> 00:52:58,361
Uh, a much greater recognition of
the importance of, of, of managing
826
00:52:58,361 --> 00:53:00,521
Parkinson's, uh, in, in hospitals.
827
00:53:01,065 --> 00:53:06,105
Yeah, it's certainly an important thing
when you, when you go into a hospital
828
00:53:06,105 --> 00:53:10,395
and you know, you anticipate people
will look after you in the right way,
829
00:53:10,395 --> 00:53:12,045
but they also need to know, don't they?
830
00:53:12,399 --> 00:53:16,779
Yeah, and actually back in, in
my book I described the ups and
831
00:53:16,779 --> 00:53:19,404
downs I had from 2022 to 2023.
832
00:53:19,604 --> 00:53:25,134
I. Including, uh, I had a, what was
a retinal detachment in one eye and
833
00:53:25,134 --> 00:53:29,244
had to have emergency surgery, and
then I had prostate cancer surgery,
834
00:53:29,664 --> 00:53:31,074
and the ups and downs of all of that.
835
00:53:31,074 --> 00:53:34,494
So, uh, I got something in
common with Billy Connolly.
836
00:53:34,494 --> 00:53:39,174
He, he prostate cancer and Parkinson's
disease diagnosed in the same week.
837
00:53:39,594 --> 00:53:44,694
thankfully it wasn't the same week for me,
but, uh, uh, probably not surprisingly.
838
00:53:45,219 --> 00:53:51,074
because of the age, uh, age of the average
Parkinson's patient, coincides, uh, there
839
00:53:51,074 --> 00:53:55,304
is actually a gender selection as well
that there, there's certainly higher
840
00:53:55,304 --> 00:53:57,254
rates of Parkinson's in men than in women.
841
00:53:57,884 --> 00:54:02,054
And, um, it's still, that may be
an occupational exposure issue,
842
00:54:02,294 --> 00:54:06,164
but, um, there, there, there is an
excess of men compared to women.
843
00:54:06,164 --> 00:54:10,844
So the combination of prostate cancer
and Parkinson's is, is not that uncommon.
844
00:54:11,300 --> 00:54:16,296
It sounds like that Well, thank
you very much, David for being on
845
00:54:16,296 --> 00:54:20,556
Forrest.Chat and all Forrest.Chat
listeners, wish you all the best with
846
00:54:20,556 --> 00:54:24,131
your future endeavors, especially that
trip to Arizona by the sound of it.
847
00:54:24,685 --> 00:54:28,405
Yeah, so I'm looking forward to a little
bit trepidatious about the flying and the
848
00:54:28,885 --> 00:54:30,205
getting into the country and the visa.
849
00:54:30,205 --> 00:54:35,185
But, uh, we're looking forward to meeting
with some people, from all around the
850
00:54:35,185 --> 00:54:37,199
world, and talking about the book.
851
00:54:37,919 --> 00:54:42,209
Then a couple of days in the Grand Canyon
and then, uh, we're coming back via Bali.
852
00:54:42,389 --> 00:54:46,589
We were, my wife and I, Kirsten are
going on a one week yo yoga retreat.
853
00:54:46,589 --> 00:54:50,279
So that'll be hopefully a bit
of calm after some busy times.
854
00:54:50,589 --> 00:54:50,979
Yes.
855
00:54:51,039 --> 00:54:54,039
Exciting times, which is really
good to, good to hear about.
856
00:54:54,416 --> 00:54:56,456
And thanks for your work
highlighting West Australians.
857
00:54:56,456 --> 00:54:58,076
It's uh, fascinating.
858
00:54:58,406 --> 00:54:58,626
Yes.
859
00:54:58,626 --> 00:54:59,066
Thank you.
860
00:54:59,291 --> 00:55:02,141
West Australind are doing
lots of good things.
861
00:55:02,595 --> 00:55:06,705
You've been listening to Forrest.Chat
where we talk about individual endeavor
862
00:55:06,735 --> 00:55:12,015
in Western Australia, what it takes,
what it means, and how you do it.
863
00:55:12,495 --> 00:55:16,365
I'm your host, Paul van der Mey, and in
today's episode, we've been talking with
864
00:55:16,365 --> 00:55:23,505
David Blacker about the transition from
being a physician to being a patient.
865
00:55:24,080 --> 00:55:27,320
Remember, there are four ways to
get involved with Forrest.Chat.
866
00:55:28,130 --> 00:55:31,220
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867
00:55:31,220 --> 00:55:33,540
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868
00:55:33,540 --> 00:55:35,730
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869
00:55:36,143 --> 00:55:38,698
Listen to the episodes
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870
00:55:40,783 --> 00:55:43,243
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871
00:55:43,382 --> 00:55:45,332
Other people might find interesting.
872
00:55:45,542 --> 00:55:49,548
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873
00:55:49,548 --> 00:55:54,288
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874
00:55:54,712 --> 00:55:56,987
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875
00:55:57,437 --> 00:56:00,467
Until then, enjoy making it happen.