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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 *** into the wall.
As I went through a doorway, I'd *** 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 rhef.com.au.
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...
..to 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 ***
to be able to prescribe it, or be a psychiatrist.
A *** 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�