Parkinson’s: The Latest Approaches

Parkinson’s: The Latest Approaches

Hello. I’m Norman Swan. Welcome to this program
on Parkinson’s disease. It’s a debilitating and challenging
condition for both the person with Parkinson’s
and their families and carers. It’s also commoner in rural settings. With no cure, treatment aims to minimise
the impact of the symptoms on the person’s quality of life. We’re going to look at
the latest advances in diagnosis treatment
and management of Parkinson’s. Tonight it’s a live simulcast – webcast and television broadcast viewable at RHEF satellite television
receiving sites nationally and on NITV. And we’ve got viewers across Australia, in places
such as Mitchell in Queensland, Finley Hospital and Mildura
in New South Wales, Canberra, Mount Gambier, ‘Darby’ – Derby, I should say –
in WA and many other places. Now, we’re also welcoming viewers who are historically
watching this program on the new Rural Health Channel. This is a dedicated
free-to-air health station and it’s on channel 600
on the VAST platform. You’d know about that
if you’re watching it, but if you’re not,
it’s important to know. And it began broadcasting on 21 May and it’ll be broadcast
24 hours a week with sessions on weekday afternoons
and evenings and a late afternoon session
after the footy on Sundays. The Rural Health Channel will have
professionally accredited programs from the Rural Health
Education Foundation along with health education
and information programs from other organisations. Anyone with a VAST satellite dish
and set-top box will be able to view the channel. More information can be found on the foundation’s website: Now back to tonight’s program. As with all our live programs, you can ask questions of the panel
by email, phone or fax. The details are on screen now. You can send your emails to: Or phone us at: We’ll put you to air
if you feel like it. You can also fax your questions to: Now, if you’re watching the webcast on
your computer, to ask a question or make a comment, type your question
into the Live Talk box and click ‘Submit’. Now, we get a lot
of empty emails from you, and I suspect
you’re not clicking ‘Submit’. So you write your question
in the live talk box and then press ‘Submit’, otherwise
we get something odd from you. We’ll be taking questions
throughout the panel discussion, so please send them in as they arise. And we’ll also be asking you questions
throughout the program and we look forward to your answers. And we’ll poll you
and present them back. So now let’s meet our panel. Geraldine Duncan has been
in general practice for 30 years in Wagga. Her interest in Parkinson’s disease grew out of a medical student research
project – the study looked at the needs of people
with Parkinson’s in a regional area, with respect to medical and allied
health involvement. – Welcome, Geraldine.
– Hello, Norman. Moira Lewis was diagnosed
with Parkinson’s in 2006. – Welcome, Moira.
– Thank you, Norman. Moira is a registered nurse
and midwife and has qualifications in diabetes
and gerontology. Moira lives in country Victoria and she’s an ambassador
for Parkinson’s Victoria. Simon Lewis
is a consultant neurologist at Royal Prince Alfred Hospital
in Sydney and also is associate professor
in cognitive neuroscience at the University of Sydney. – Welcome, Simon.
– Thanks for having me. Simon is director of the Parkinson’s
Disease Research Clinic at the Brain and Mind
Research Institute at the University of Sydney and heads the NSW Movement Disorders
Brain Donor Program. You’re not getting anything
from us tonight, Simon. – It’s an investment program.
NORMAN: Yeah, absolutely. But we will be
sucking each other’s brains, but in a very metaphoric sense. Meg Morris is a research professor
in the School of Physiotherapy at the University of Melbourne. NORMAN: Welcome, Meg.
– Thank you. Meg completed her PhD in 1996, investigating the physiotherapy
management of gait disorders in Parkinson’s disease. And Marilia Pereira is Australia’s first
neurological nurse educator, with more than 14 years experience
in neurology. – Welcome, Marilia.
– Thanks, Norman. Marilia’s based
at the Nowra Community Health Centre in New South Wales and provides a domiciliary service
to clients and carers living with Parkinson’s and other
neurodegenerative disorders in the Shoalhaven area. Are you a nurse practitioner officially? No, I’m a nurse consultant. How many are there like you
around the country? There are 33 nurses
around the country and only seven of us
are based in community. So the rest are based in hospitals. And many nurse practitioners
in Parkinson’s and neurology? Two – one in Queensland and I think
the other one’s in Victoria. Is that…? The first thing I was gonna
try and raise politically, if I may, is, as people hear
from my accent, I’m a ring-in – I’m not retarded, this is my accent. But in the UK, they’ve had
Parkinson’s nurses in the community for over 20 years. There are over 250 of them,
they’ve got their own college. And in Australia, we seem to be
in the control arm of that study and lacking this sort of service
until recently, and we’re trying
to push this agenda. How important have nurses been
to you, Moira? They were my bloodline, yes. They were my saving grace
in the beginning. Soon after my diagnosis,
I was put in touch with one. Went and saw her – oh, just made
everything quite normal for me. But better still,
it was also for my husband – the knowledge that he gained
out of that and to learn to live
with Parkinson’s too. NORMAN: How did it all begin? Um… OK, it was April Fools’ Day
2006 that I was diagnosed. But of course prior to that,
I’d noticed the stiff hip, the stiff shoulder. – Um… I then did…
NORMAN: Stiff or painful? Well, it was painful, but it was stiff
like when I bent up and down. But, I mean,
I’d been nursing for many years. I put it down
to a good old nurse’s sore hip and the same with the shoulder. NORMAN: So like any of us,
you just ignored it. Yeah. Yeah. Then one night at work, I did notice,
I can still remember it, sitting at the phone and my little thumb
giving a bit of a tremor. I went, ‘Hmm…’ And then slowly along the way, they’re so subtle
these changes coming that you don’t really… NORMAN: Doesn’t hit you like…
– Oh, no, it’s not like an acute onset. It’s just gradual. And also, too, it won’t always
be present at the same time. They’re not all present
on the one day, these symptoms. It just seems to come and go a lot. Frequen…
Urgency of urine, passing urine – but I put that down to,
I’d given birth to children. – Just women’s problems.
– Women’s problems, totally. Yeah. And it was probably
just towards the end that a lot of things
just fell into sequence and they were there
a little bit more. NORMAN: So what made you go and…? Well, actually,
it was one night at work and my GP said to me, ‘Moira,
are you dragging your right leg?’ ‘Mm… yes.’ ‘Um… well, what’s this all about?’ And I stammered out,
‘What do you know about a tremor?’ ‘Oh. Come around here
and see me now.’ ‘Oh. Rightio.’ So that I did. You’d also noticed something
with your face as well. Yeah, I had. One day I was getting ready for work and I was putting on my red lipstick
as I always did, and I’m going,
‘Smile, Moira, smile.’ And… it just wasn’t coming. But I didn’t think about it. Look, I knew very little
about Parkinson’s, so I wasn’t associating it, until I started
to think about it myself and I went, ‘Uh-oh,’ and started grabbing for the internet
and looking up a few sites, and I went, ‘Mm… a lot of this
is all falling into place.’ And it is a rude question –
but how old were you when you…? MOIRA: Oh, 57. NORMAN: What’s been your journey since? Well, since then, I went on and I worked
for 2.5 years after that in nursing. But that became more difficult. I was very aware
of my professional integrity and I wasn’t going to
allow Parkinson’s to interfere with my career. I made the choice to leave work. It was a very sad choice. Um… I didn’t enjoy it at all. But since then, I decided,
well, I’ve gotta turn my life around, I’ve gotta look for something now. And I’ve been doing work
for Parkinson’s Victoria in an ambassadorial capacity. And what sort of treatment have
you been on? When did that start? The treatment started immediately
because I had functional… Neurologists said, and I knew it –
I had some functional disabilities. So, I started a dopamine agonist
immediately, and that was fabulous
for about eight months. NORMAN: So this is not L-dopa?
This is one of the other ones? MOIRA: No, it was one of the others. And I had a wonderful time on that. I was feeling very good, actually. Um, and we’d been gradually
increase-titrating the dose up. And then all of a sudden, I started
getting some side effects to it. And they were the most debilitating
thing of my life. NORMAN: What side effects did you get?
– I had some hallucinations, panic attacks, which were just… look,
indescribable – I just felt like I was just dying. I also had some tactile feelings,
like creeping through my head. It was just so debilitating. All my husband could do
was just sit and hold me when any of these attacks happened. Um… and the good one
was hypersexuality. And, I mean, Ray thought,
‘This is great.’ NORMAN: Where can we get some?
MOIRA: Yeah, exactly. As I said to my friends, I could go on
the black market, I reckon. (Laughs) – Sell you into white slavery?
– (Laughs) Yeah. Um, but that was
a most interesting time. And of course,
we took that dose down, and things were much better
and I started on Sinemet. NORMAN: Right. And now? And now… What treatment? Yes, I’m on Sinemet, Comtan
and Sifrol. NORMAN: And how are you going? I reckon I’m travelling alright. I have good days, I have bad days,
but who doesn’t? NORMAN: And do you have ‘off’ periods
where…? I do – I have ‘off’ periods
where I have wearing off. NORMAN: For people who don’t know
about Parkinson’s watching, describe an ‘off’ period. An ‘off’ period
is where my medication goes off and you would find, for me, that I probably would develop
the mask that they talk about, which is just a bland expression
of the face, where we look like
we’re totally disinterested in anything going on around us. I would become very slow
in movement, like bending down
to pick up something – well, that’s an interesting exercise – as you watch me going down, I look like probably
about a 100-year-old trying to get down to pick it up. I’d be very slow in movement as
I’m walking down the hallway at home. I’ll probably bang into the wall. As I went through a doorway,
I’d bang into a door. NORMAN: You don’t seize up completely? MOIRA: I’m not seizing up completely. Most interesting thing
is rolling over in bed. If I’m really down
on my medication – well, yes,
that’s an interesting exercise – I have to sit up in bed
to roll over. I’m going to ask you the first
of our poll questions for this program. Remember, you can answer
more than one question. And this is really for the people – you can answer them for yourself
if you’re watching it on television – but really for the people
who are watching the webcast: Don’t forget to click on the poll tab, not the question tab for this answer. So you’ve got 30 seconds
to answer that question. And before we come to symptoms, just so they don’t cheat on this
when answering the poll question, Simon, how common are those side effects
from the dopamine agonists? SIMON: They’re bracketed
as impulse control disorders. So hypersexuality is one of those. Pathological gambling – so people
spending money they don’t have. – And we’re talking about…
NORMAN: So it’s like hypomania? Absolutely.
And it’s almost, you know… And unfortunately
people often realise that they’re doing these things. So excessive shopping
is another, online. And it’s been said in the largest trial
that’s been published, about 14% of patients will actually get some form
of impulse control disorder when they take a dopamine agonist. It does happen
with the levodopa compounds as well, but less frequently. So, Marilia,
how common are those symptoms that Moira talked about
as early presentation for Pa…? – Is that typical?
– Yep, very typical. Um… probably most of my clients will have at least one or two
of the symptoms Moira described, especially that frozen shoulder. Commonly they’re investigated
by an orthopaedic surgeon prior to being diagnosed
with Parkinson’s because of this frozen shoulder. So, yeah. MEG: And I think
the other common one you see is the shuffling walking pattern – the very short steps,
slow walking pattern, often reduced arm-swing on one side. SIMON: It’s the husband or wife
noticing the arm doesn’t swing – ‘What’s wrong with you?
What’s wrong?’ And, you know,
‘Act normal, act normal.’ Then it goes off again
and they don’t swing their arm. MOIRA: You’re so right.
‘Act normal’ – that is so right. And you did cooking classes. We’ve got a picture of you
at cooking classes and you had an issue
with movement here. MOIRA: Yeah, I did. I went to Paris
and did a cooking class in macarons and my two daughters came with me, and when we had to pipe
these macarons, just nothing went from the brain
to the hands for me. It just didn’t happen. And I had little squiggly lines going
across the page and I was so embarrassed –
I had my head tucked down – and suddenly my daughters realised that
I was in big trouble and just… they just started, they said, ‘Mum, listen.
One, two, three. Stop. Lift.’ And once they got me
into a sequence and cuing… NORMAN: It’s just get into
a deliberate action. A deliberate action, I was right. Geraldine, it must be hard
for general practitioners because not everybody
presents the same way and you don’t see many with
Parkinson’s disease in your career. Exactly. And the symptom complex
is so subtle, not necessarily
all occurring at the same time, and so what you need to do
is have it in your head maybe and put it together. And of course so many other patients
come in with similar symptoms due to other reasons that it’s not there
at the forefront of your mind. So I guess, as GPs,
we’ve just gotta think, add Parkinson’s to the list
of what our DDs might be for the frozen shoulder
or whatever that’s coming in. NORMAN: Let’s get your answers
to our poll question. So the question was,
which of these symptoms would you consider to be diagnostic
of Parkinson’s disease? And slowness of movement, you scored highly on that. Not many of you scored on frozen shoulder, when in fact that is an issue. Balance disturbance, you said yes. Sleep disturbance, yes, you said. Depression and ataxia, a lot of you said yes, too. Simon? SIMON: Looking at that and obviously
the graphic depicts it quite well, people have realised that balance is a big problem
with Parkinson’s disease. But it’s one of those things
we see in more advanced disease. So at an initial presentation,
problems which we might think of as, you know, falling over or an inability
to coordinate the hands, is not something that we would,
you know, characteristically label
as early Parkinson’s. – Later in the disease, I’d say.
MEG: Later on, yes. When people start falling over, – or if they develop freezing of gait.
– Yes. I mean, we’d often see
those balance disturbances in… It used to be a triad
when we were at medical school, and now it’s, you know, tetrad of
the cardinal signs of Parkinson’s, and postural instability’s
been added to the tremor, the slowness,
the stiffness. NORMAN: But our audience,
at least on the web, don’t pick frozen shoulder
as being one of the things. If I only had a dollar for every patient
that’s been referred to me as, you know,
query frozen shoulder, or ‘I trapped a nerve, Doctor.’ It’s one of the features… This is a disease
that happens in stages, and, you know,
subtle as we’ve heard. And so, it’s good…
I was quite pleased to see that people were picking up depression,
for example, and, of course, there are very clear
pre-motor symptoms, and people here picked up
on sleep disturbance as well. So things like insomnia,
excessive daytime somnolence, and the very fascinating dream enactment
behaviour we see with rapid eye movement,
sleep behaviour disorder or RBD. NORMAN: So just give me
the clinical definition. Parkinson’s disease is a common
neuro-degenerative disease, which is really characterised
by loss of cells in the brain, and the cells that take
the hardest hit, but not by any means the only hit, are the dopamine-producing cells
of the brain. And dopamine is a vital
chemical transmitter that’s involved with movement,
with mood and with thinking. We heard a lot of those features,
not only from the disease itself, but also when we start to, if you like, try and change
the disease with medication. NORMAN: Meg, that’s one of the myths
about this – people think of it as a movement disorder,
it’s much more pervasive. They’re classic features of Parkinson’s. Typically, the movements
become very slow, and scale down in size. So the handwriting is
perfectly formed, but is miniature. The facial expression
can become absent because the muscles
aren’t working properly. But alongside that
you have cognitive impairment, sometimes, later on, but also autonomic disturbance too,
in some people. Such as? – Excessive sweating. Dizziness.
– Postural hypotension for sure. People dropping their blood pressure
in advanced disease. But it’s very important,
what Meg just said, you know, cognitive impairment late. Well, actually,
at time of diagnosis, we know that at least half of patients have some degree of impairment
in their cognition. And so, you know,
you think you’re going crazy, and in actual fact,
it’s just part of the disease. Similarly depression
and all of these other… ..anxiety, panic attacks. ‘I never had panic attacks, Doc.
Why do I have panic attacks now?’ – Oh, yes.
– It’s very common to hear that story, because not only the dopamine, but serotonergic
and noradrenergic systems… NORMAN: The average age
of diagnosis? Currently going down.
It’s now at about 65 or below. NORMAN: Why is it going down? I think it’s because
we’re getting cluey-er… NORMAN: So it’s diagnostic phenomenon.
– We’re getting a bit better. The other thing
that’s worth bearing in mind is that 5% of all cases
are under the age of 40, which is not an insignificant number considering the number of cases
in the country. It’s a pretty… it’s a disease that
doesn’t respect too many boundaries. – And relentless or not?
SIMON: Relentless. I mean, it’s a disease that
at the moment we’re unable to stop. NORMAN: So early intervention
doesn’t make any difference? I think it’s a great idea
to get early intervention, but the approaches
we need to focus on are really exercising the body
and the mind. NORMAN: We’ll come back to that
in a moment. – Difference between ethnic groups?
SIMON: No. No real ethnic group differences. We… NORMAN: So why is it more common
in the country? People have suggested, obviously,
an explosion of pesticides, and big studies that have been done
have shown that if you’re exposed to significant doses of pesticides
in your working career, that you’re more likely
to develop Parkinson’s. But we’re talking about
maybe tripling the risk, and if that’s 3 in 1,000,
that’s not much greater than 1 in 1,000. NORMAN: People talked about…
we know that there are neurotoxins, there’s that… that epi…
mini epidemic in California with…
in the drug lab, MDMA. What about peppermint? People said
peppermint was a neurotoxin. Look, I get an email every week
about what the neurotoxin was, and we discussed this off air, but coming to Australia,
I came across a lot of veterans who told me about Agent Orange. I’d never heard of Agent Orange, but it was something that a lot of
people who’d been exposed in the war believed that was the agent. We haven’t really got
compelling evidence to prove that that is
the true origin of the disease. Head injury in Alzheimer’s
is a risk factor. – Is it in Parkinson’s?
– It is. So having a head injury
that’s sufficient to knock you out or fracture your skull,
does seem to increase the risk. But again,
we’ve got an enormous amount of people who’ve got Parkinson’s disease
who’ve never had a head injury. – So it’s not the answer.
NORMAN: And smoking’s protective? Smoking is protective. It’s not a good reason to go out
and start smoking. Has anybody tried nicotine
to treat Parkinson’s? I’m unaware of any successful trials
that have shown nicotine as being an agent
we can honestly endorse. NORMAN: Any other protective factors? We know that caffeine
seems to reduce your risk of developing Parkinson’s disease. Again, there are lots of people
out there who drink caffeine, and seem to have developed
Parkinson’s disease. So I don’t think we should all
just start going out and… NORMAN: What about genetics?
– Yeah, genetics is interesting. There are a number of genes, about
13 genes that have been described that give a very different sort
of Parkinson’s disease – much younger onset,
much more strong family history – and they account for
a very small percentage of the cases. But, when you look at family history
in patients who have Parkinson’s disease, about 1 in 10, as opposed to
1 in 1,000 in the general population, about in 1 in 10
will have a family history. But not necessarily mum or dad.
It could be a cousin, for example. And is it particularly… Do you look for a stronger
genetic influence in younger onset? Certainly. I think what we…
We talk about younger onset with Parkinson’s
in lots of different ways. When I think about genetic Parkinson’s,
I’m thinking under the age of 30. NORMAN: Really? That young?
– That young. So by the time
you’re under the age of 30, your risk of genetic cause
is probably 90%. By the time you’re over 40,
that really drops off dramatically. Geraldine, what myths
do you come across in relation to Parkinson’s disease? Well, that you will automatically become
totally incapacitated, that you will have significant problems
with dementia early on, I think there’s a great fear of totally losing functionality
very early on. MARY: Another myth is that
you’ll end up in a nursing home. That’s not the case.
You can live well with Parkinson’s. NORMAN: Marilia.
– And the myths between, Parkinson’s not just
a physical or movement disorder, but it also has non-motor symptoms, like depression, sleep problems
that we talked about a bit earlier. And what do you hear when you’re out talking to people
in the community all the time, Moira? I suppose the biggest fear is
admission to a nursing home, yeah, and that’s one of the myths…
that’s what they see. NORMAN: Are the hallucinations like… You know, in Lewy Body Dementia, the hallucinations
are really quite consistent – people see the same
sort of hallucination. – Is the same true in Parkinson’s?
SIMON: Yes. The pathology of Parkinson’s, or at
least advanced Parkinson’s disease, is very similar to what you see
in Lewy body pathology. In fact, under the microscope
they look pretty much the same. So the common, if you like,
spectrum of disease with hallucinations in Parkinson’s
is from vivid dreams, very well-formed dreams that are
quite disturbing when you wake up. And then misperceptions
when you’re awake – you know, going into a dark room,
mistaking a lamp for somebody standing in the shadows
in the corner – and then benign hallucinations
where you see something usually quite friendly
like an animal, or a person,
often a deceased spouse in fact. And then finally this pathological end
of paranoid psychosis where you see somebody
who might be very threatening to you, carrying a weapon, for example, and believing that intruders
are in the house, and infidelity against your partner
or they’re in it against you. These are very common. And L-dopa doesn’t touch that? Well, the problem is that when you’ve developed hallucinations
in Parkinson’s disease, dopaminergic therapy,
be it dopamine agonists or levodopa, seem to aggravate
the hallucinations. NORMAN: Which is what Moira experienced.
– Absolutely. What we have is this terrible divide
between being mad and mobile, and being able to, you know,
your medications work, and I can walk around, but I actually am a danger
to other people and myself, or slow and sane. And, of course,
patients often want to be mobile, and their loved ones
often want them to be sane. NORMAN: We’ve got a question
that’s come in from Sue Fitzgerald, a patient election liaison officer
in Caboolture, who says, ‘My poor mum finally succumbed
to Parkinson’s disease in 2009 with severe dementia. I want to know if my mum
had this awful disease, will I get this also,
or my other siblings?’ The answer is, I’d probably be
more worried about having inherited her risk of high blood pressure
or cardiovascular disease, rather than thinking you’re directly
going to get Parkinson’s disease. I think the answer is, yes,
you are at a slightly higher risk, but I think…
it’d be really unlucky. The number of cases I see
who have a direct transmission between parent to child is very low. A question from Marilyn Jones
who asks, ‘We know about
cord blood collections, and we’ve heard
of foetal cell transplants, and stem cell transplants
trying for Parkinson’s disease. Could this be a method
of treating Parkinson’s?’ Should you collect cord blood
for future Parkinson’s…? People are investigating stem cells
at all levels, and the truth
is that we’re not there yet. The studies that were done back in
the early 2000s, 2002-2003, I think, using foetal stem cells
were actually discontinued early, because unfortunately
patients developed debilitating side effects
from treatment. They developed involuntary movements
so severe that they required
deep brain surgery to correct them. There are people
who are still working on stem cells. The problem that I see with this is that most people
who are working on stem cell therapy are aiming to get stem cells
that will produce dopamine, and that is only
a very small part of the problem. (Norman and Simon
talk over each other) Not as simple as people thought. And a question from Dennis Cato,
who asks, ‘What’s the value of DNA testing, for example, provided by the Michael J
Fox Foundation and 23andMe?’ Well, the answer is collecting DNA
and doing genetic research is very valuable, and certainly
that obviously forms a part of my own work,
so I have a disclosure of interest, but the fact of the matter is
we don’t routinely screen for genes that cause Parkinson’s disease. There are some programs
in each of the states you’ll find who will take on patients
who have a very strong family history, or a young onset of disease,
and are interested to meet those people. I’d encourage them to do that. But that’s not part
of our public health system. Let’s go to our first case study.
Tom’s 45. He comes to see Geraldine
in a rural clinic complaining of tiredness,
mild depression. He has a stiff left arm
and a mild tremor which he puts down
to an old sporting injury. He’s a real estate agent.
He’s been relatively inactive. He’s overweight with a BMI of 28, and he’s got a wife
and two teenaged children. I’m going to go straight into
our poll question for you. After you’ve taken this history
with Tom, what would you do next? You can tick one or more
of these answers. This is for our web audience, but you can actually make a note of it
yourself at home or at your site. Would you do a CT scan,
a full blood count, a thyroid function test,
an ESR? Would you do a test therapy
with L-dopa? Would you refer to a neurologist? You’ve got 30 seconds
to answer that question. Well, what are you going to do for… We’ll come back to the tests in
a minute, what are you going to do? I was thinking about this after having
read it and run through, I’d examine him, of course,
a bit more thoroughly. NORMAN: That’s a bit radical.
(Laughter) Taking his history next.
What are you doing? And plump out the history
as much as I can, and make up my mind
what other things I wanted to exclude, and what valuable material
I could get from investigations. I would make up my mind about
doing some of those investigations. Which ones would you do? I probably would… given he’s got
the stiff arm and the mild tremor, I probably would do a CT scan to exclude
something going on in his head. A full blood count and an ESR
is always a reasonable test to do. I guess it’s a bit of a net.
If your ESR’s really up… This is more
of a differential diagnosis rather than trying to pin down
Parkinson’s. It’s trying to make sure that
you’re not missing something else. I think with the symptoms,
the examination is really important, particularly with the tremor,
trying to sort of put in other neurological things
that go with Parkinson’s. SIMON: Moira said something wonderful
to me off camera. She said, ‘The down thing about
this disease is we don’t have a test.’ You know, unlike the diabetics,
you were saying. ‘I can monitor my disease because I know
my blood sugar is high or low.’ This thing relies on time, sometimes. Time and trying to convince someone
of what you’ve experienced. And also, too, because it can be
so variant from day to day, it’s also keeping track
of all that yourself. Hmm. – Would you do a test of L-dopa?
GERALDINE: No. I wouldn’t. I wouldn’t feel comfortable doing that
because drugs have side effects, and I’d like to be fairly sure
of my potential diagnosis before I did a trial. I’d probably chat to
a neurological colleague… Just so it happens,
he’s ready for a chat. (Laughter) – He’s off the golf course.
– That’s right. Look, I think the interesting thing
about this case is he’s 45, which is not in the hitting zone
for Parkinson’s as we normally see it. – So…
NORMAN: Just before you go on. – Let’s get the results of that poll.
– Sure. What would you do next? A lot of you would do the general
work-up. Thyroid function test. Not so many of you… an ESR. And very few of you would launch
on an L-dopa, and a lot of you would refer
to a neurologist. But if you’re in a country town, that could be
a six-month waiting list. GERALDINE: That’s right.
– Hence this conversation with you. Absolutely.
My overarching goal with Parkinson’s is to treat each individual
as an individual, because the disease is so variable
between cases. We know that younger onset
seem to have a slower progression, and this is really a time
where I’d be thinking, ‘God, if this is Parkinson’s,
if I’m confident it is, does he really need treatment? Or should we be looking
at other things?’ We’ve got one of the world experts
in physiotherapy sitting here, we know that exercise programs early,
trying to restore balance, and counselling,
make sure that everyone’s addressing the bigger issues,
the psychosocial issues… NORMAN: So you’d do
those investigations? They’re OK? SIMON: I would definitely do
a CT head scan. NORMAN: Because he could have a tumour.
– Absolutely. I wouldn’t want to be caught out
by that. And certainly, when I saw him
come to my clinic, then I would probably go for an MR,
because he’s so young. In the case of someone like this,
of course, Wilson’s should never be forgotten. Copper studies for Wilson’s disease
because it’s one of those… NORMAN: Coming on this late? I’ve seen Wilson’s disease
developing in people in their 60s. The answer is absolutely.
You should always think about it. MEG: I would also look
at the walking pattern, ’cause we know certain things
about Parkinson’s that they have difficulty doing
two things at the same time. NORMAN: Isn’t that just because
of a Y chromosome? (Laughter)
– Could be that as well. But it’s very classical
of Parkinson’s patients. If they have to walk and turn,
walk and talk, walk and carry a tray. It’s when they have
to string together long or complex movement sequences,
things become slow and shrink down. It’s very recognisable. Would you start… so you’re saying
you wouldn’t start treatment? SIMON: I would never rush a patient on
to treatment on the background that… At the moment we don’t have an agent that changes the course
of the disease. There is some speculation
about one medication – which may get licensed
later this year in Australia – where there is evidence suggesting
it might slow the disease a little. But there’s nothing at the moment
that we would be able to say, ‘This will change the course
of your disease,’ for a tablet. They’re all symptomatic treatments. NORMAN: So tell me about
this exercise intervention. We’ve actually got a question
from an exercise physiologist wanting to know… It’s from Anna Dawson
in Bendigo, Bendigo Health, wanting to know what the latest
discoveries are for the best physical exercise interventions
for Parkinson’s disease. MEG: So I think that physical activity,
as a whole, is really good for people with Parkinson’s. The ‘use it or lose it’
type of phenomenon. But two things. One is looking
at strategies to use the mind to control movement, to be very mindful
of large movements and moving fast. So think of walking
with long strides, think of large
handwriting movements, think of talking loud. NORMAN: So it’s almost patterning. It’s bypassing
the defective basal ganglia by using the frontal cortices
of the brain to control movement. SIMON: So goal-directed
would be the catch. I’m going to achieve that.
Like ‘I’m going to pipe this cake.’ MOIRA: Exactly. And that becomes
the frustrating thing. You’ve got to think
about everything you do. – You’re conscious, aware.
NORMAN: It’s got to be deliberate. MEG: Alongside that,
we can try things like visual cues. So the basal ganglia provides
an internal cue to trigger one movement
to the next in a sequence. With Parkinson’s patients, if you put strips of cardboard
down on the floor, or you use musical cues,
they can move much more easily. So those sorts of tricks
and strategies can be very helpful. And also alongside
that strength training because people with Parkinson’s
tend to get a little bit deconditioned and less physically active,
so there’s great value in progressive resistance
strength training. NORMAN: Marilia, what do we know
about cognitive stimulation? Well, there is some research
that has shown that the more cognitively active
they are… I mean, I’m probably not the best expert
to answer this question but it does improve their memory
and I think… SIMON: It’s good, good.
– You’ve also done research… Yeah, so cognitive stimulation
is good but interestingly
what often people do is they fall into the trap
of doing the things they like. If they’re a sudoku champion,
they’ll do lots and lots of sudoku when in actual fact
what they probably need to do is something that’ll stimulate them more or be more challenging
such as taking on a second language or learning an instrument or… NORMAN:
Something that causes a bit of pain. You know, good medicine tastes
the worst. It’s as simple as that. MARILIA: The other thing also
with this patient is we’re all talking about
some of the physical symptoms but like this gentleman
is overweight, he’s inactive, so I would be referring him
to a dietitian as well. SIMON: Go, sister.
– Physiotherapist, definitely. I would be looking at the needs
of his wife and his two young children, I would be getting him
in contact with the support groups. There’s a lot of stuff
going on with this. You know, what about work?
Is he still working? Is there any idea of…
NORMAN: What about driving? Driving as well would be a big issue
so can he drive? Does he understand… Driving is a huge issue
in rural areas because people do rely
on their driving for independence. So, you know,
you have to explain to Tom that, you know, his reaction time,
is he able to react quickly if someone’s coming towards him? So, would he be safe?
Would his teenage girls be safe? Would that other car be safe
if he’s driving? You know, night vision as well.
Sometimes night… I don’t have Parkinson’s
but sometimes the glare of other lights can affect my driving as well
or being able to see things. But there’s a whole heap of issues
with this gentleman, not just these physical symptoms
that we’ve been talking about. Driving is a big part
of his life, isn’t it? He’s a real estate agent
in a rural area. When did you stop driving? I stopped about…
Oh, I’m still driving. But I drive only
when my husband’s with me, if that’s on long distance where I’d be driving over 100 kays. I can drive around town quite well,
that’s good. But if I do have some wearing off, I’m not good at driving in
so I wouldn’t drive. NORMAN: Have you ever had an off-time
when you’ve been driving? – They just come on?
– Oh, yes, yes. And Ray, my husband,
he will even notice it happening. He’s become aware
and he’ll go, ‘Uh-huh’. And I just pull over. That’s why I’d never take off
on my own on long-distance driving. MEG: But I think with driving too, you can plan the driving route
in advance so you’re not thinking about
where you’re going. MOIRA: Actually,
that is really something, yes. It’s knowing where you’re going
is a big thing. So to be suddenly flung
into an unknown area to drive, – that would really…
MARILIA: Multitasking as well. I tell my clients not to have
conversations with each other while driving,
not to have the radio full blast because multitasking can be difficult
and it’s not just a man thing. NORMAN: Geraldine,
when would you refer to a neurologist? Well, I think the thing about
Parkinson’s disease particularly as we see
with its subtle onset, it’s really good
to get a diagnosis early – and because there’s no test…
– But you’ve kind of made it already. Yes, but because there’s no test, you’re not always 100% sure.
It’s nice to have confirmation. NORMAN: So what about telehealth –
getting Professor Lewis on Skype? – Well, I’m interested…
– You’d get paid for that. And yes, GPs would get paid for that
as well. – You’re into telehealth, Simon?
SIMON: It’s interesting. When we wrote the proposal
for Marilia’s position as Australia’s first
neurological nurse educator, the government told us
that there was no way… I’d put into it ‘eHealth’ because
I thought this would be sexy and I thought it appeals
to the right people and they said, ‘You know
you can’t bill for that.’ And now two years later,
it’s their idea. And I think the question is
whether it’s going to be… I think it’ll be by and large
very helpful but in actual fact what you really need
on the other end of that line is somebody who understands
the disease and unfortunately
if you look at all the studies and I know Geraldine
and I’ve published on this, GPs lack confidence
in managing Parkinson’s disease and that’s not a surprise
because A… NORMAN: They don’t see much.
– They don’t see much. And B, what they see
looks completely different. They’ll have one 84-year-old
in a nursing home and one 42-year-old
who’s still at work. It’s an impossible thing for them
to get their head around. It’s not fair. So in actual fact,
having people who have experience and see the whole spectrum and most Parkinson’s nurses
will have 200-300 cases. Well, the truth of the matter is that they’ll have seen
most of the things by then and being guided
by that sort of person on the end
of an eHealth consultation is actually much more valuable,
no offence, than having a GP saying, ‘Hey, would you mind having this guy
walk for me on the screen?’ Don’t forget,
if you want to ask a question, you can phone in,
the number is 1800 633 410. Fax number is… Sorry, I think
I’ve given you the wrong number. The phone number is: And the fax number is: You can email us the questions
at And you can send in via the webcast
by clicking… Just type in your question
in the Live Talk section and clicking ‘Submit’ and we’ve got a few questions to come in
a moment. I’ve got a question for you,
another question for you. In your view,
which of the following factors are most important in deciding to use medication? And again, you’ve got 30 seconds… answer that question. Let’s go to our next case study
who’s Amanda. She’s 55, a teacher, diagnosed with Parkinson’s disease
in the last year. At a recent review
with you, Geraldine, she complained of stiffness,
fatigue, shoulder pain and some slowness of walking. She’s considering giving up
her part-time teaching job, she’s not on any medication. And you’ve got a six-month
waiting list to see Simon. Well, I guess you’re wondering, does she need medication and
how can I affect her consultation? How can I get further advice? And what can I be doing to maximise
things for this patient now? So this is where
I really want to be sure that I’ve set up
my neurological consultation as soon as possible, that I’ve set up another team
around this person, so that might involve
the physiotherapist or the occupational therapist or the speech pathologist in terms of helping her
keep moving along. NORMAN: You’ve got all those in Wagga? Yes, we have all those in Wagga. There’ll be some of the smaller
surrounding towns that might not but in my area,
we’ve got the two major regional areas that people can refer to. Some of those services
are pretty stretched however but we could set up those services. This is where
care planning comes in. NORMAN: So is she getting
what Tom was getting? Which is intensive exercise
intervention, nutrition, general health
and wellbeing and so on? GERALDINE: I think we need to make sure
all of those things are in place while we’re asking ourselves,
does she need medication and how can I get an opinion
about this? I think physical activity
can be really important there. Things like golf can be fantastic,
yoga, tai chi, dancing, treadmills, bicycles,
all of those things can be really good. NORMAN: Marilia, if you saw Amanda
and she wasn’t on medication, let’s say she’s having
all the interventions, when would you be sending her back to either the GP
or the neurologist for…? Well, considering that she’s thinking of
retiring from work, so that’s a quality of life change, so I would be asking her to see,
get a baseline from her neurologist, whether medication
would be something because neurologists in rural areas can take six to eight months
for initial consult but once you’ve been in there,
it’s easier to follow up so I would be looking at that – is she leaving work because
her symptoms are not… NORMAN: In other words,
treatment could keep her at work. MARILIA: Yeah, definitely. GERALDINE: Quite a few people travel
to the city to get diagnosed. Let’s just go to the poll question
and see what you thought about the most important factors
in deciding to use medication – age, the impact
and the quality of life. Let’s have a look at the graphic. So, not many of you thought
the age was important. Most of you thought the impact
of the symptoms on quality of life. You weren’t too concerned about
the patient’s anxiety. You correctly said postural hypertension
is not a reason although cognition did score
a little bit more highly. Comments on those answers? SIMON: Look, I think it’s great
that the majority have said quality of life.
I think that’s fantastic. I think it’s really interesting
that people are also paying heed to cognitive function because they’re recognising
that this is more than just whether someone’s forgetful. They actually realise the impact
that cognitive function has on day-to-day life. In actual fact,
they go hand in glove together. NORMAN: But treatment’s
not doing much? The treatment,
it’s interesting because we do know from some of the neuro-psych testing
and the research we’ve done that some cognitive function
is improved by dopaminergic therapy so in actual fact, we do see people
increase their processing speed and when we think about
working memory and planning, so executive functions, that seems to be improved
by dopaminergic therapy so… NORMAN: So what’s on offer here for her? SIMON: Look, I think we could fill
several days talking about this but there are
no hard and fast guidelines. Australia doesn’t have one for what
this patient should definitely have. The options are there
and we, I think hopefully, have some reference later
to an online program and resource that GPs will be able
to sign in and have a look and educate themselves on this but levodopa, most of my specialist
colleagues would probably leave as a first line until later
so try and avoid it. Because we know that the longer
you’re on levodopa therapy, the higher the dose is,
the sooner you run into problems with motor fluctuations and we heard earlier
about this cycle of the tablets wearing off, patients feeling as though
they’re trapped in concrete and it’s their own body and then they get a peak
after they’ve taken their tablets and get a lot of
involuntary movements which actually,
they tend to prefer to have that state than being trapped in your own body
’cause it’s like being buried alive. The problem
with that state of affairs is that you’re then into serious advance
therapies of Parkinson’s so we try and defer levodopa exposure
as much as we can. NORMAN: So you cope with hypersexuality? Well, it’s interesting
because as I mentioned briefly, there looks like
there’ll be a third choice, a sort of almost political
third choice which will be available
I suspect before the end of this year which would be a medication
that comes from a different category. It’s very similar to selegiline,
so the monoamine oxidase inhibitor. NORMAN: Used to be first line therapy
for Parkinson’s. It was vogue for a while. And it’s interesting, you know,
because this other medication called rasagiline has been licensed
in most parts of the world since 2005. So I think that will give us
some extra options as to what to start patients on. It doesn’t seem to carry the impulse
control disorder as its risk but every patient is individual and we have to tailor
the treatments as such. NORMAN: What’s the story with timing
and dosage and so on? Well, the good thing about
both of those medications, the dopamine agonist and rasagiline,
the monoamine oxidase inhibitor, is that they’re very simple
in that it’s once a day. The monoamine oxidase inhibitor
is actually just one milligram once a day.
There isn’t another dose for it. The dopamine agonists that’s most
commonly used now in Australia would be a drug called pramipexole and that comes in incremental doses and of course the logic
would always be start on the lowest dose you can get
away with and titrate slowly. NORMAN: You’ve got a strong issue
with timing, haven’t you, Moira? MOIRA: I do, yes. It’s just so important to have
your medication on time every time and I just really encourage
nursing staff in acute hospitals or nursing homes to please give their patients
their medication on time. SIMON: This is particularly relevant
for the levodopa preparations. Their half life
is only two to three hours and actually, this is why
it’s fundamentally important because those patients who have more
advanced disease definitely benefit. NORMAN:
How often would you review Amanda? Let’s say she goes on pramipexole
or something like that and how often would you see her back? Would you leave that to Amanda or would you have
a regular review process? Well, for any of my patients
with chronic illness, I try to review them
fairly regularly and that might be
one, two or three monthly depending upon
what their condition is and how they’re sailing
with that condition. NORMAN: So let’s follow up Amanda
five years on. So she’s been put on
a dopamine treatment, she’s developed problems with getting
a good response from her tablets throughout the day. She spends about a quarter of the day
with involuntary movements and a quarter of the day where her
tablets don’t seem to work at all. So where to from here? Marilia,
if you saw her with this story, what would be your advice to her? So, a few things. I would go into deeper
so I’d look at any protein and, you know, levodopa interaction. So, is she having her medication
with meals or not and try that… NORMAN: So it’s important to have L-dopa
with meals? No, not with meals. An hour before or an hour after because there is a protein interaction
with levodopa. NORMAN: What other drug interactions
are there with L-dopa? SIMON: It’s generally well tolerated. I mean, most patients
who get Parkinson’s disease have a range of other conditions –
diabetes, cardiovascular disease, depression is part of the syndrome – so most drugs are OK with levodopa. There are very few
that you would say, ‘Actually, no,
you just can’t have that.’ Can’t think of anything
you’d say, ‘No, can’t have that.’ – Any physiotherapy interventions?
MEG: When they’re in the off phase, physiotherapy strategies like cueing and the attentional strategies. Think big and so forth
can be really useful. So I think that’s really important to teach people
that when they’re off, the strategy is to unblock their feet
when they’re freezing and so forth. – Which was the strategy for your…
– Cooking. – Piping macarons?
MOIRA: That’s exactly right. I mean, I think the problem
with this scenario, it’s all too common. After five years,
at least half of patients develop these motor fluctuations, going between switched off
and involuntary dyskinesia and, really,
you often tinker with tablets and tinker with other things
but you must make a decision about more advanced therapies
such as subcutaneous apomorphine usually delivered in a pump so that’s a needle under a skin
that goes in in the morning and comes out at night. There’s now a treatment
called Duodopa, a tube that goes, like a PEG tube,
into the small bowel and that infuses a gel preparation
of levodopa and then of course the one
that gets all of the attention is deep brain stimulation,
so an operation. But it’s very worthwhile recognising
that all of these therapies do pretty much the same thing – they improve the amount
of good on-time the patients have. It’s about the same percentage
by and large, to be frank. The risks,
they’re obviously different in that, to have holes drilled in your head
is different to having a needle under the skin and so that takes
a little more thinking around whether you’re gonna go ahead and also, some patients
just aren’t suitable for deep brain stimulation. For example,
if you’re over the age of 70, I don’t think anyone would operate on
that patient. If you’ve developed significant
cognitive impairment or hallucinations, again,
very few people would be put up for deep brain stimulation. NORMAN: And is there tachyphylaxis?
Does it wear off? SIMON: In deep brain stimulation? It’s interesting because patients always
blame the tablets or the treatment and never identify the fact
that’s actually going on in the brain. So the brain keeps changing. So we need to keep escalating tablets – or escalate the intervention…
(Norman speaks indistinctly) Absolutely, the frequency. The fact of the matter is
we always blame the tablet and of course it’s us. MARILIA: We also have to look at,
as a nurse in the community, you always have to also look at, is that client or patient having their
medication too close together or too far apart? And if their symptoms
are not being controlled, then yes, it would be time
to get in contact with their GP or neurologist and have
their medications reviewed. MEG: You need to look at them
in different settings. Look at them at home, at work,
in the community. MARILIA: I sometimes video-record
the off-time, take their medication,
how long it takes and I send that video
to the neurologist. – If that helps.
SIMON: Definitely, definitely. Would that help with telehealth? Having that sort of thing? Because I’m aware of, I can think
through the contextual difficulties but I still think
there must be some role in terms of moving things along
for the patient in terms of chatting about what am I
going to do with the medication… SIMON: I think
it’s accessing a specialist. With somebody who knows that this is the question
I need to ask that specialist. To be frank, most specialists
who heard from somebody with as much experience as Marilia would say, ‘OK, it sounds like
we need to do X, Y and Z. You can send me the video
if you like but frankly,
I hear what you’re saying.’ The patient isn’t lying to you,
you know them well and they tell you these difficulties
and the interesting thing is you take a video the next day,
completely different symptoms. I just found with the telehealth
as well, you’re there for a couple of hours
and you have to make sure the neurologist is available
for a couple of hours, you’ve got to follow them around
with this laptop which you don’t see the big picture so I personally find that
videoing them, I can film and I can do and then I can let the neurologist
know that way and identifying what patients
call specific symptoms, I’ve got clients
who call off-time ‘freezing’. So if they go to the neurologist
and say, ‘I’m getting a lot of freezing,’ the neurologist is going to think
it’s freezing of gait but it’s actually off-time
so identifying those terminology that they use
in letting their GP or neurologist know that’s what they mean. Let’s go to a couple of questions,
because we’ve got consumers watching, particularly on the webcast. This question has come in. ‘My husband’s been on medication
for Parkinson’s for nearly 14 years. He’s now on a combination
of medication – – Madopar…’ What’s Madopar?
– That’s levodopa. I’ve been out of the system. ‘Permax, Comtan and Inderal.’
What’s Comtan? Comtan is entacapone,
so it’s a COMT inhibitor that gives you more delivery
of levodopa to the brain. And beta-blocker? Inderal is a beta-blocker, so some patients may be on it
for blood pressure or heart disease, but it may be that some patients are using it
for tremor. Some specialists
will use it for tremor. And Permax will be
a dopamine agonist. This is a patient who’s on most
of the common therapies that we have. ‘While on this cocktail
of medication, my husband has more downs
than ups during the day…’ This comes to your terminology
as to what is a down. ‘..and it’s obvious that some
further decisions are to be made. What would be the next step
in treatment for my husband?’ Well, every case is different,
but if you’re looking… NORMAN: We should have a disclaimer here
that we’re not giving… A serious disclaimer is that
we’re not really giving you advice about your husband – we’re using this as an indication,
as an example as to what you might do
in a situation like this. You really are going to have to talk to
your own doctor about this. I think this is a very,
very typical scenario. What we’ve not heard there is about
whether there are visual hallucinations and depression
and everything else that’s feeding in, and my suspicion is this patient
who’s had the disease for as long as that
is probably a candidate for what we might call that more
continuous dopaminergic stimulation, whether it be apomorphine,
Duodopa or DBS, depending on their state,
as I’ve mentioned before. MEG: The other thing is we need
to assess the whole family. It’s not just the person
with Parkinson’s, so we need to think about
the caregiver, whether there’s caregiver strain and other family members and
how it’s impacting upon that system. And another question
from a consumer is ‘What can I do about
my husband’s frequency of urination?’ Marilia, please, help us! – Well, when I see clients…
– This could be prostate, couldn’t it? It can be, but usually
it’s related to their Parkinson’s, so I look into how much caffeine
are they having throughout the day, are they drinking alcohol,
do they drink before bedtime? I teach them to do
pelvic floor exercises, especially men, because they have no idea
what it is. And if I can’t manage that
like that, then I would refer them
to the continence nurse, who’s the expert, to see if there’s
anything else that can be done. SIMON: You can never look at the bladder
in isolation. You have to look at the bowel, ’cause constipation goes
hand in glove with this. The other thing,
which any good geriatrician and all GPs occlude into
is what tablets is this patient on, because if they’re on a diuretic,
you start looking, ‘OK, we might have to change
the game here.’ MEG: Also keep in mind that most people
with Parkinson’s are older and might have
two or three chronic conditions. So there could be other… You have to look at all that, yeah. Did you want to comment on that, Moira? – Nope?
(Laughter) Do you want to give some medical advice
to our viewer? No, well, what Simon was saying is really looking at the bladder
and the bowel together, really. Because that will…
the constipation. And I will say constipation
is a big thing with the Parkinson’s. You can easily fluctuate from… Oh, isn’t this gorgeous,
talking about the bowels? SIMON: Hypersexuality to bowels.
– Oh, my God! MARILIA: And you’re a nurse.
We talk about bowels all the time! NORMAN: Just go with it.
They’ve had their supper. Um, yeah, you can go from
a normal bowel action to a constipated bowel action
quite quickly. One day can be different
to the next. As quickly as that. So you really just need to make sure
you eat your fruit – and keep up a good high fibre diet.
WOMAN: And exercise. Exercise is a huge thing. Let’s go to Mrs Banks
who’s 69 years old. She’s had Parkinson’s for nearly 20 years. Geraldine, you’ve been called
to the nursing home. Is this typical for someone
with Parkinson’s disease? Well, I think this lady’s clearly
progressed in her Parkinson’s, with multiple problems, so, similar to the first one,
I would think, medication… What is she on?
What’s contributing to it? What’s she needing
that she’s not on? What other advice do I need
to get from somebody and what other helpers do
I need in this situation to help her,
such as with her exercise, her form, her balance retraining? Hallucinations are
a significant problem that I would need further advice
as to what I could up and down… NORMAN: We’ve got a question
asking about antipsychotics. Great. Excellent. This is great. NORMAN: Presumably risperidone…
– Look, look, look. It’s an absolutely
fantastic question and the answer is all of the things
we’ve heard from Geraldine about looking at this patient
as an individual and saying,
‘We need to simplify their drug regime.’ Because the fact is
their balance has gone, they’re in a nursing home. The chances are that we’re not going to
get them independently mobile, so then you have to look at
their prescriptions and say, ‘What’s actually helping
and what’s actually harming?’ We’ve heard about dopamine agonists
causing more in the way of hallucinations
and behavioural disturbance. And, really, at this stage
in the disease, I’m often looking,
‘Well, what can we do without? How can we simplify this regimen?’ NORMAN: Could make her better
by stripping out drugs? Right. Then, what is it that might
have tipped the balance? Is there a new medication?
Is there a metabolic disturbance? Lots of patients with constipation
go hyponatremic, confused, and they fill up
our emergency department every day. On top of that,
is there a septic disturbance? UTIs come into emergency response
all the time. NORMAN: So it’s standard Geriatrics 101?
SIMON: 101. It’s interesting, because a lot
of people I was talking to – somebody who earns
their living in Canberra – they didn’t know that
emergency departments get full up of people who get confused
’cause they’re constipated. One of those things
which you’d hope a nurse could intervene and stop from happening. – Politicians do it all the time.
– Indeed! In terms of what choice for
that pervasive psychosis, this is where we get into
really interesting territory, again political, and I love it.
Thank you for the opportunity. At the moment, Australia on the PBS, you cannot prescribe, legally, an antipsychotic medication
for Parkinson’s disease. You can prescribe it… NORMAN: Throwing it around
for Alzheimer’s – with devastating consequences.
SIMON: Yes. And if you want to prescribe it
for schizophreniform symptoms of Parkinson’s disease, funnily enough, that seems to be OK.
This is a nonsense. NORMAN: Is it like Alzheimer’s
where you can do quite a lot of harm? The answer is we don’t have
the long-term data on Parkinson’s. What we do know, however, is that patients
who become psychotic are a danger to themselves
and others. And it seems to be…
It is, I’m sorry, the leading precipitant for
people going to a nursing home. Not only ’cause
they’re a danger to themselves, but the caregiver
just cannot handle it anymore. Interestingly,
the only antipsychotic that’s been shown in a randomised
controlled trial to work for Parkinson’s disease psychosis
is clozapine. Now, clozapine, you either have to be
related to the Pope or have a letter written by the Pope
in the blood of a virgin to be able to prescribe it,
or be a psychiatrist. A virgin that’s not on pramipexole,
anyway. Absolutely. And the fact is it’s very
hard, unless you’re a psychiatrist who’s got all the monitoring
to use clozapine, so that’s the only drug
that we have licensed… Sorry – that’s actually shown to work. The other antipsychotics
are effective. I tend to use olanzapine
because if you miss a dose, it seems to be OK,
and you can use a wafer, and that can often be
easy to administer. Quetiapine. And the message with these drugs
is, of course, start low and see how much you need. We must avoid the risperidones
of this world, because we know that they do promote
increased Parkinsonism. So we need to get that message
across that, actually, I think you should treat a psychosis
if it’s pervasive, and I think you have to choose
an atypical antipsychotic that you feel comfortable with
and start low, then titrate the dose. MARILIA: It’s a change of environment
for this lady. There’s been a change
from home to a new home, so it’s trying to educate
the health professionals in that nursing home as well, to try and help this lady
adapt to her new home. So, in nursing homes,
from my experience, if someone is a falls risk, they automatically don’t allow them
to become very active, because they don’t have
the resources. So it’s a matter of educating
these nurses about the importance of activity,
socialisation, all that. That may also reduce
the hallucinations. She’s depressed, her husband’s not there
with her all the time, etc. There’s been a big change
for this lady as well. NORMAN: What’s her prognosis? SIMON: Poor is the answer
to that question, in one word. I think the fact of the matter is that we know that admission
to a nursing home with Parkinson’s is ten times greater than
the age-matched population. We know that,
by the time you’re like this lady, in the advanced stages
of the disease – four and five,
where you’re not independently mobile would be the easiest phrase
to describe it, that that rate of admission
into nursing homes is much greater. NORMAN: And her life expectancy? Well, the fact is that
we know on average the life expectancy for
Parkinson’s disease is 12 years. Tell that to a 42-year-old
who’s been diagnosed and you’re clearly off the ballpark. This lady, she’s 69, she’s had
the disease for 19 years already, and she’s now in a nursing home, and the chances of her survival
for the next five years are pretty slim, and one would guesstimate two years. Because if she triggers a fall
and breaks a hip, you know, in a nursing home
with a broken hip, the long-term survival on that when
I was in medical school was poor. It was 50% at two years
if I’m right. MEG: 60% of patients have falls
every year with Parkinson’s. I’m hoping, as a nurse,
that nurses will be able to change that by providing education
to nursing home staff in the importance
of physical activity. I am already seeing that in Shoalhaven
with some nursing homes. NORMAN: They’re getting improvements?
MARILIA: Improvement. An awkward question, Moira,
but I’m going to ask it. Have you written
an Advance Care Directive? NORMAN:
There isn’t such a thing in Victoria, but it’s got another name,
which I forget. No, I haven’t. I’ve got a good rapport
with my husband and my children. I think, when the time comes, that I’ll be able to
really give them indications. I don’t see at this point in my life that I need
an Advance Care Directive. NORMAN: It doesn’t bother you that
without something written down, the doctors can do
anything they like? Oh, no, I don’t think so. I’ve appointed power of attorneys –
medical. Um, no, I don’t think so.
I think my family will step in for me. I have every trust in them. MARILIA: I encourage my clients
while they’re still sane of mind. If there’s already
any cognitive symptoms, I will encourage them
to think about it and look into it, at least guardianship
and power of attorney, so that they have a choice
in their care. What they would like to happen to them
should they end up in hospital with an emergency. Sometimes it brings up a lot
of death and dying issues. That’s where counsellors come in
as well. I intend to still be around
till I’m 90. NORMAN: Of course!
– Mmm. GERALDINE: One issue
of the nursing home is I’m reminded by
one of the nurse carers in one of the focus groups
we ran for her husband, where she really felt powerless… That was around the timing
of the medication for her husband. But also being moved, and with
this lady having hallucinations, stuck in a new place,
freezing up all the time. Not having someone coming regularly
to move her. MARILIA: I get calls all the time
where clients are confused because they don’t understand
that their night screams might be vivid dreams
or something like that, so they say that they’re confused and they get
the mental health team in, etc. And it’s just a matter
of educating… I show them videos of real patients and that puts everything
into perspective with these health professionals. And I have seen changes
in some of the nursing homes that I’ve been involved in,
in doing a lot of education sessions. It’s a work in progress. MEG: It’s all about a team approach
to care, isn’t it? Nurses, physios, doctors, OTs. MARILIA: And listen to carers as well. Carers are
an amazing group of people who we need to listen more to, because sometimes
they feel left out. SIMON: The key point about carers, and they don’t often see themselves
as carers – they’re informal carers, but we use their services
all the time – is that I can give you
a very long list – hallucinations, falls, dementia – of things that put people
into a nursing home. There’s generally one
that keeps you out, and you married them. So you have to choose very wisely, and it’s interesting,
because what we see from the data coming out from
the Shoalhaven project which Marilia has spearheaded for us is that actually her intervention is improving the health
of the caregiver. You know,
it’s good for the patients too. But in actual fact,
when you’re looking at our tidal wave of ageing population,
how do we keep people out? The first thing we should do
is support the people who are already doing the job.
Is that your feeling? Loss of spontaneity, of life.
You know, that just goes. And once a year,
go on a dopamine agonist – and then have a holiday.
(Laughter) That’s just the doctors. What are some good sources
of information and training for people who are interested
in taking this further? In terms of…
We’ve got two, really. Parkinson’s Australia
are our overarching NGO and the states and territories have
their own individual associations. Parkinson’s Australia
will help guide people towards resources
that you can rely on. So the state and territories
have their own NGOs. In partnership with
the Commonwealth Government, three or four years ago now, Parkinson’s Australia
set about producing an online education
resource for GPs. So that’s now just been hosted by the Australian Rural Remote… College of Rural and Remote Medicine.
ACRRM. That I think is going to go live
sometime in the next week, and I think people should get on
and register. The great thing about
the course you can do, A, it’s certified for points,
but you can dip in and dip out, and often what GPs need to know is ‘How do I deal
with the next crisis?’ I don’t necessarily need to know
the whole thing. Speaking as a specialist and being on
the board of Parkinson’s NSW, I don’t care how you’re using it, as long as you’re using it
and finding it beneficial, please. MARILIA:
There are also some really good ones for nurses
and allied health professionals. For example, Parkinson’s Victoria
and Parkinson’s WA have guidelines for nursing management
and physio management, and Parkinson’s NSW. But also the UK
Parkinson’s association. NORMAN: So what are your take-home
messages for people watching? MARILIA: Mine would be carer-based. I think just to let carers know
to stay passionate, stay positive, patient –
be very patient – and be proactive. NORMAN: Meg? Physical activity is good. – Good for the body and the brain.
NORMAN: Simon? It’s not good enough to look
at a patient and go, ‘Is everything alright?’ We’ve heard there are so many different
aspects of this disease, there must be something as a health care professional
we can improve upon, and I’d ask the people
watching this program to get involved with
things like constipation – sounds silly – depression. All of those things that when
you’ve got 10 minutes in a consultation you don’t wanna get involved with. NORMAN: Moira? Yes, please, nurses,
medication on time for all you people with PD
every time. And the second one is that presently Parkinson’s Australia
is lobbying the Government for funding for clinical nurse
specialists in Parkinson’s. And please, please, we need it.
They are the angels. As Simon says, they’re the angels,
not the gods. NORMAN: Geraldine? One of the things the project
we did showed me was how alone many people
with Parkinson’s are in NSW, and how they wanted to have more
of a relationship with their GP around getting things organised
for them. So it’s about being proactive as GPs. Get the care plans together,
think about what the issues are, what are the goals
and what am I gonna do about it? I hope you’ve enjoyed this program.
Thank you all very much. I hope you’ve enjoyed this program
on Parkinson’s disease, found it useful and informative. I’ve brushed up
on brand names at least. If you want to obtain more information
about the issues raised, there are a number
of resources available on the Rural Health
Education’s website: And there, you can go to
the Parkinson’s disease program page and click on ‘Resources’. If you’re a health worker,
send in your evaluation forms which can be found on that web page. You’ll receive a certificate
of attendance, and, if eligible, CPD points. Thanks to the Department
of Health and Ageing for making the program possible, and thanks to you for taking the time
to attend and contribute. I’m Norman Swan. See you next time. Captions by
Captioning & Subtitling International Funded by the Australian Government
Department of Families, Housing, Community Services
and Indigenous Affairs�

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