Life after brain injury

Q&A session
Dr David Roland, author and psychologist, and Professor Harry McConnell, neuropsychiatrist
who has trained in neurology, psychiatry, epileptology, chronic pain and disability assessment,
answer audience questions on recovery after brain injury. Held on the International Day of
People with Disability, 3 December 2015.

Transcript

David: Okay, so I have Professor Harry McConnell with me. I'm David Roland. We’re
interested in taking questions from you to do with disability, brain injury.

Harry: The concept is very similar but this is a very, this is a different treatment than the
type of treatment for blue light therapy for seasonal depression. Seasonal
depression, where I come from in America, is actually quite common. Here
where we have sunshine 12 months of the year it's much less common, it should
be said. It is a very valid treatment for seasonal depression. I suspect that it
works in a similar way. I think that's a very good point. It's an analogous
treatment to seasonal treatment for depression. Also, I think it's important, I'm
glad you asked that question, because the symptoms of fatigue and depression
overlap so significantly. It's easy to confuse one for the other. They are different
phenomena but sometimes people actually present with fatigue actually are
depressed and it's what while being assessed specifically for that. Because it
maybe that not just treatment for fatigue but actually a treatment for the
depression whether that's medication or cognitive behavioural therapy may
actually be the go there as well.

It can ... That's an unusual cause for brain injury, for Parkinson's. Usually most
Parkinson is ... Most Parkinson comes on spontaneously sometimes it can have
a genetic underlaying, but more commonly it just occurs out of the blue as what's
called a neurodegenerative disease. It comes from under the great auspices of
so many neurological conditions of being idiopathic. Idiopathic is one of my two
favourite words in all of medicine. Idiopathic which means that we don't know
what's going on. It comes from the word idiot meaning 'don't have a clue'. My
other favourite word in medicine is iatrogenic, which means physician induced,
which is a fancy way of saying in front of the patient, "Oops."

David: Without admitting liability.

Harry: Yes. That's it. Yes.

David: That's a special medical condition.

Harry: You can. If the brain injury involves the basal ganglia which is the part that's
involved in Parkinson's you can actually get Parkinson's coming out of, as a
result of a brain injury. Certainly there is good evidence that you can get
Parkinson's like with, if you're in a situation where you've had repeated brain

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injury such as boxers have they can get a Parkinsonian type syndrome. It comes
from repeated head injuries that can affect the basal ganglia, that part of the
brain to do with movement coordination.

What happens with the thermoregulation ... I mean I just said the first thing to do
is exclude a treatable underlying cause. That's why it's worthwhile doing the
endocrine screens and looking at the thyroid, things like that that can cause
thermos-disregulation that will be treatable with simple medication. In the
absence of that what is the most common cause after a brain injury is that this is
a disregulation of a part of the nervous system called the autonomic nervous
system. This is, it has two branches, it's the sympathetic branch and the
parasympathetic branch. The sympathetic branch is involved in increasing the
heart rate, increasing the breathing, getting you ready for sort of flight or fight
mode. The parasympathetic branch sort of slows down the heart, slows down the
breathing. Together this part of the brain, the autonomic or automatic nervous
system it's like an autopilot for you. It takes care of all the parts of your brain that
you ordinarily don't need to think about.

You'll go crazy if you have to think about every single thing, every single breath
that you take, every heartbeat, your blood pressure. It's the autopilot for your
brain. Now, so it's like ... An autopilot works great when everything's going
smoothly. If, for example, you've got a pilot who's flying from New York to
London. Usually what happens is they go up to a certain altitude, they take off
from La Guardia, they get up to a certain altitude, they say, "Okay, I'm going to
go to the back and take a kip. Wake me up when we're over Heathrow." They
flick on the autopilot, everything's smooth and ordinarily they're supposed to
wake until they get to Heathrow, but if there's a volcano in Iceland somebody is
to go wake him up sooner. He needs to come back, flick off the autopilot and he
needs to take control of those things that are usually automatic, steer through the
ash of the volcano. Everyone then arrives safely at Heathrow. They go, they see
the jewels, they see all the sights that the British Museum, the tourist industry
booms, the economy is good, everyone's happy.

Life is full of Icelandic volcanoes. That's the type of thing that sometimes people
need to actually learn to take back control of that sort of autonomic part of their
nervous system. It's flicking off that autopilot, taking control for themselves of
those parts of the brain that ordinarily take care of themselves. You can learn to
do that. You learn to do that through things like mindfulness techniques:
meditation, tai chi, through biofeedback. With biofeedback, for example, you can
actually learn to control your, specifically, your sympathetic and your
parasympathetic. You can learn to control very easily. Sometimes with patients I
will do temperature biofeedback where they can learn to control the ... You can
only control the temperature of your finger, you can learn to get increase or
decrease it by 10 or 15 degrees by what you think, by what you visualise.

It's a very powerful tool and it's part of ... When you do that with visualisation,
relaxation techniques, it's a very similar technique to what you do with lie
detector test. There's a ... In the Gold Coast there in Canungra there is a 'black

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ops' from what I understand for ASIO. They do all sorts of terrible things there
that I really do not want to know anything about at all. One thing I do that is very
interesting is that they teach people how to trick a lie detector test which is not
difficult. In a lie detector test essentially they measure the electrical resistance
which is the reflection of the blood flow and the sweat going through your finger
which is the autonomic nervous system. They teach you how to trick a lie
detector test, how to ... By doing that what you're doing is you're actually learning
to control your autonomic nervous system. Just very similar techniques. You can
do that through meditation, tai chi, mindfulness. You can do that through
biofeedback, there's lots of different ways to do that. That's the underlying
mechanism behind the temperature disregulation that you get. It's a problem with
that autonomic nervous system.

David: Yeah. I guess the principle here, Harry, is you're taking something that's normally
unconscious. As you said, it's some-, I think it's happening every moment of the
day, you don't normally have to think about it but when you get the Icelandic
volcano, something goes wrong, that's when you bring the conscious attention to
it.

Harry: That's it.

David: Then there's different strategies for doing that and one of those is
neurobiofeedback as well, isn't it?

Harry: That's right. That's another thing, yeah.

David: Which is actually quite a new area. You're learning to take conscious control of
parts of brain function or neuro sys-, nervous system function which normally you
wouldn't need to bother about.

Harry: That's right. That's exactly it.

It's great for mood, it's great for anxiety, but it also can be good for this
autonomic disregulation which can include ... That autonomic disregulation can
cause lots of different problems. It can cause blood pressure problems, it can
cause temperature disregulation, but it can also cause things like persistence of
pain. Some of the pain syndromes can relate to that as well.

David: What I would add there, Margaret, is that mindfulness or mindfulness meditation,
one of the things that it definitely does in my experience, and this is certainly
backed up by research, is it improves your attention, your focus of attention.
People that practice those types of things like mindfulness meditation learn better
because they can focus better, they can concentrate better. In my own
experience is that I became much more in tune with my body. I mean that in a
physical sense, in a cognitive sense when I'm thinking, and also what I'm feeling.
Certain things might trigger me, might make me feel angry but what I would
notice now is that early, early trigger, I think, "Oh, there's that sensation," so then
I can respond differently. I've got an option now to respond.

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It's a bit like it's a search light in your body. I think what Harry is suggesting is
that any practice, and that's a good practice, that gets you much more in touch
with what's going on internally, physically, and mentally is going to give you a
head start in terms of making some changes to the ways you do things. I think
neurofeedback or biofeedback might be an additional thing for you to look at.

My own experience with music was that ... I've always played music but after the
stroke I stopped playing music and stopped listening to music. I think it was just
part of that withdrawing and trying to ... It just didn't seem important at that point
and I was trying to reduce stimulation. What's being really ... Then I learnt that
music making, playing an instrument activated a lot of the areas of the brain and
the reason that it does that is music's got a lot of components to it. When you
think of it those are very complex process, it's got rhythm, it's got tone, it's got
melody, and it's got emotion as well. Like you hear somebody playing music
without emotion, gets all the notes right, and someone that really puts emotion
into it.

It's a very comprehensive activity. It requires different areas of the brain or

different networks to synchronize together. That's a very good brain training
program. What's interesting, I noticed I lost all interest in listening to music but in
more recent times in the last 12 months or so I've been composing a lot of music.
Just listening to a lot of music. I think when I had a breakthrough and I was able
to go back to a music festival and handle lots of music and crowds I just felt
another door opening. My creativity around music is far ahead of what it was
when I was a teenager. There's another door that's opened.

My stroke was six years ago. Yeah. I've been giving age labels to people's
brain ... I think if you're under two years post-brain injury you're still in your baby
phase. I think post-two years you have a toddler. I reckon I'm in early teenage
years at the moment. I've had people come to me and say, "Look, I don't think
I'm getting any better. I'm at sea." I'll ask them, "How long has it been?" They say
anything less than two years and I'll say, "Well, you're still finding your walking
feet. You're still learning to walk." It's a very slow but patient processes in there.

Harry: It's worthwhile if you don't mind me sharing.

David: Yeah.

Harry: I think your initial story when it first happened and the problem is actually getting
the right diagnosis and so forth. That's a compelling issue as well, I think.

David: Yeah. Well, I spend a lot of time on that so we can take questions. What
happens is always misdiagnosed because I've had a history of post-traumatic
stress disorder from my work. When I entered the general hospital they didn't
have an MRI machine in the hospital. I was suffering acute amnesia,
disorientation. I could still speak and I could still walk so they thought maybe I
had a psychiatric illness which they called a psychogenic fugue which is just loss
of memory due to a trauma or stress. It's a fairly rare disorder. It was, fortunately

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I got ... They sent me to a psychiatric unit. I thought I completely lost my mind.
Fortunately, there was a psychiatrist within that unit who said, "Well, I'm not sure
we've ruled out all the neurological possibilities yet." He even told me later that I
could have been a case of malingering, just putting it on. He said I didn't think
that for very long.

He did a 24-hour EEG to see if I had any epilepsy that's [inaudible 00:13:26]. He
also ordered a brain MRI. No one had thought to actually do that at this point. It
wasn't until I was discharged from the psych unit and I went to an outside
radiology unit that the brain MRI very conclusively showed I've had a stroke.
Since I've written my memoir of how I rescued my brain I've come-, I've heard a
lot of other stories of people being misdiagnosed or not diagnosed for quite a
long time, sometimes months, because this neurological disorders can show up
in different ways. I don't know if it's particularly stroke or brain injury...

Harry: It can happen with a stroke but it can happen with any type of injury because if
you, if the part of your brain is the part of the brain that has to do with movement
then you have a paralysis, for example, well, then that seems pretty
straightforward to most people. Much more common if the part of the brain that is
injured, whether it's a stroke or traumatic brain injury or whatever, it's the part of
the brain that has to do with memory and emotions such as the temporal lobe or
the limbic system, which is the oldest part of the brain. This is the part of the
brain that's involved in our basic functions for survival so it has to do with our
fight and flight reflex.

It has to with our ability to survive as individuals and as species for reproduction,
for feeding and all of our emotions are wrapped up in this. If that part of the brain
is involved in an injury it most commonly presents with psychiatric symptoms.
That's where those frequently disruption, I suppose, is the problem is that there's
not always good communication between different specialists and medical
practitioners.

David: Yeah. See, I think that type of injury is not only difficult for the health
professionals involved. It's difficult for those people around you, your family and
community, because you can sound and look completely normal. I had
tremendous amnesia so I couldn't walk down ... I can walk down the street where
I live but if I was in a new place I couldn't walk down the street and be sure that
I'd know how to get back there again. Yet, I was walking normally and I would
have appeared normal. Of course I could still speak even though I knew I was
really struggling with conversation. It felt like, to me, I was speaking English as a
second language. I had to really think, "What is the word for that thing?" Then
produce it.

To people that didn't know me I appear completely normal. If you got that type of
invisible disability ... Because it throws up challenges when you're in new places
and people don't know that and you have to explain, "Well, I can't sit here for too
long because it's too noisy," or whatever. My own experience of that is you have
to withdraw for a while. Like when you get injured physically, properly injured,

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you just want to curl up and rest, don't you? It seems a natural biological
mechanism which is built in us to take care of ourselves. I think that's happening
mentally in a sense as well because the brain is a biological organism, it's an
organ where it's trying to heal. We choose the stimulation. My experience was
that sound, which is flooding me, it was just too much. It actually hurt my brain.

I don't know what the neurological mechanism is for this but my brain actually
hurt. There's no pain receptors in the actual brain tissue itself other than the
arteries but it wasn't like a headache. It was like my brain had expanded and my
skull was too small so it was like pressure and it was all over. I would just want to
withdraw from anything, any noxious stimuli that was ringing there on. I think
what happens, and I can't say exactly what point this was, is that I just didn't
want to stay like that forever. There was a part of me that after a while was had
enough self-protection so well, I want to move beyond this just being closed in.
It's partly my personality, I guess, but partly realizing that there was so many
wonderful things that I was missing out on or that I wanted to engage with again.

As a carer, I'm not sure how you judged that. Because as a carer you can see
that a person to do re-engaging might be good. You can make suggestions about
the type of re-engagement but at the end of the day you have to go by what that
person says is okay and not okay. I think, mostly, a person wants to get back to
how they were so they're going to feel motivated at some point to retry. You can
just offer opportunities.

Harry: It's really good to get linked up with a vocational rehab specialist because
sometimes it's not going back to what you were doing previously but sometimes
about thinking creatively about other types of work that you can do. Vocational
rehab specialists are really, really good at helping people to either retrain in
different areas or think creatively out of the box about different things that they
might be able to do. Working is a great thing. The only thing worse than working
is not working. It's really an important thing to do to get back to work if you can. I
would encourage you to work with your rehab people, with them.

David: I might mention one writing strategy that I discovered which helped me and was
helpful for other people. It's writing a gratitude letter. I said that one of the ... I
said that gratitude seems to have increased for me, gratitude for the people, the
marvellous health professionals that I discovered and some that I didn't think was
so marvellous. Just friends and other people that helped me. Writing a gratitude
letter is simply thinking about one person that you want to say thank you to. Then
in this letter just saying the positive things, what it is that you're grateful to them
for, like specifically writing those things.

It's a letter that you work on so it wouldn't be more than one page. Once you've
got it how you want it it's really nice, it's very, it can be very moving if that person
is still alive. You can do a gratitude letter for someone that's passed is to go and
read that letter to them. It's a wonderful thing, and I did that with my father before
actually I had the stroke. I still feel this welling of gratitude to him whenever I
think of sitting with him and reading this letter to him.