Volunteering for stroke research

David Karpin discusses his relationship with NeuRA research from contrasting perspectives as a volunteer and a NeuRA Foundation board member.

Five years ago, as I was sitting watching the morning news, I fell off my chair to the floor. Within the hour I was in hospital, having suffered a severe stroke. Afterwards, I could not walk, speak clearly, or use my left arm or hand. I was totally reliant on other people. My neurologist advised my son I was unlikely to ever walk again.

David practices rehabilitation exercises using the Wii.

David practices rehabilitation exercises using the Wii.

Today, I live independently and can speak clearly, walk unassisted and have partial use of my left arm, hand and fingers. My remarkable transformation is thanks to medical research and in particular to my participation in a stroke rehabilitation study at NeuRA. Using the Nintendo Wii as a rehabilitation tool, this groundbreaking research is translating into results for stroke patients right now, some of whom I introduced to the Wii trial after my own positive experience.

I am now heavily involved in NeuRA activities as a volunteer, donor and NeuRA Foundation board member. The Foundation seeks philanthropic support from different groups and individuals with differing preparedness to give, and I assist with this by sharing my extensive experience in executive administration and management. The overall aim is to enhance the benefits for both the individuals and groups who fund research and also for those who stand to gain meaningful benefit to their lives from research outcomes.

In addition to management experience, good science communication is important in seeking research funding. In addition, it is important to highlight the economic disadvantage of neurological illness to society due to healthcare burden and reduced workforce participation. Many philanthropic partners prefer to support research that translates interventions into clinical practice, and I am glad to say that translational research is an area of strength for NeuRA.

NeuRA has a strong base of ongoing research across a whole array of neurological illnesses. With sufficient funding, we hope it will be possible in future to take on additional areas that have historically been under-resourced but are very important.

I remain involved as a volunteer for a trial being run by a PhD student in the McNulty lab. It is my fervent wish that NeuRA’s research continues to be funded, as it delivers real and very tangible results to the community. Hopefully, you will be inspired to also lend your support. Much more needs to be done to achieve NeuRA’s vision of a society free from diseases and disorders of the brain and nervous system. I hope you and many others will share this vision.

‘The World According to Richard’ (Part three)

In the final installment of Richard Schweizer’s blog series, he describes his vision for the future and why speaking out about schizophrenia is so important to him…

For this, the last section of my blog I would like to convey the ups and downs of my life since being successfully medicated. I would also like to talk about my PhD research into schizophrenia. I hope that in telling you this story I may offer some hope for people with mental illness, and perhaps contribute towards a greater understanding of those that suffer, so often, in silence.

It took me many months, perhaps years, to fully accommodate the fact that I had not only a mental illness, but perhaps the most serious of mental illnesses. I had fallen from a great height, and found myself with a new mountain to climb.

The first grasping footholds in this mountain involved getting back into study (luckily my period in the clinic had occurred over the summer, when uni wasn’t sitting). I enrolled part-time to finish my Law degree at Sydney University. I managed to finish without too much difficulty, though I was still suffering bouts of depression and anxiety. Occasionally I would also be in class and things would well-up and get too difficult for me, so I would leave.

In my final year of Law, I applied to do an exchange at a number of US universities. Luckily my old Honours supervisor from my Arts Degree days wrote me a fantastic letter of recommendation, and I was given a spot at New York University. I was off to The Big Apple!

It had always been a dream of mine to live in New York – it’s such an exciting city – and here I was living my dream. The classes were tough, but I decided I would try my darnedest to get good marks. The city was wonderful. So full of life and energy. I had some close family friends there too, so every Tuesday night I would go to their place on the Upper East Side and have schnitzel. They invited me into their home with love, and I am eternally grateful.

There is a story about the health system in New York I would like to relate. The medication I was taking, and still take, is a strong anti-psychotic called Clopine as I mentioned previously. In Australia, I need to have a blood test once a month to receive the drug. In the US the rules are a bit different. I needed the blood test every two weeks. So, in the first two weeks I popped into the hospital with a blood test request, got the results confirmed by a psychiatrist and went into a local pharmacy. I asked for two weeks worth of Clopine.

The lady found the drug and said “five thirty-five”. I replied, “gee, that’s cheap! five dollars and thirty-five cents”. She responded, “No, five hundred and thirty five dollars”. I was blown away. I did not have medical insurance for schizophrenia as it was a pre-existing condition and I had to pay the full price of the drug. In Australia I get the same drug for forty-odd dollars, for a full month. Such was my lesson in the American health-care system. If you have schizophrenia there and need an anti-psychotic, but can’t afford medical insurance, you are simply left to struggle for your sanity. Needless to say, from that point on I sourced my medication from Australia.

I guess the only dark aspect of my time in NY was my occasional bouts of depression. I remember lying in bed for hours; walking around Greenwich Village in the cold trying to perk myself up with exercise; talking to Mum on the phone for stretches at a time. I guess the problem of depression and anxiety is still with me, though as we will see, I have adopted certain strategies to contain these feelings.

Back Home

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Richard Schweizer with his brother Marcus and parents Sonja and Norbert at home.

I returned to Australia in 2005 and decided to do a Masters, in either Fine Arts or Journalism. My parents thought the latter was a good idea, so I went with it and enrolled part-time at the University of Technology, Sydney. I enjoyed the degree, although I earned a Pass mark in one course – the only time it has ever happened to me.

It was around this time that I decided to become a patient ambassador for the Schizophrenia Research Institute; a voice for people with schizophrenia. I had always had good public speaking skills, and I felt that the issue needed to be discussed; that my strong recovery and participation in life may give hope to some who were struggling. There was also a deeply personal reason for “coming out” as a person with schizophrenia.

I wanted to turn what was the worst thing in my life into one of the better, if not the best thing in my life. I also felt, in my moments of despairing depression, that holding on to a sense of purpose, of something bigger, helped me deal with dark feelings. Maybe, like my behavior as a child, I wanted to be Superman again – though this time the Superman of a broken mind.

I knew I would face difficulties. I knew I would have to open very personal parts of myself up to public scrutiny. I knew there would be stigma.

But it has turned out to be one of the best decisions of my life. I feel energized when given the chance to tell my story. I appreciate the fact that people come up to me after hearing me speak and tell me of their own struggles with mental illness, or the struggles of a friend or relative. I feel like I am on a mission – a mission to help de-stigmatise schizophrenia. Hence the message I wrote at the beginning of this blog: schizophrenia is normal.

My PhD

I had finished my Masters in Journalism and felt at a loose end. I asked my father one day: “Do you think I am capable of doing a PhD?”. He replied, emphatically, “Yes!”. I needed his approval, and got it.

I enrolled to do a PhD in Sociology part-time at Sydney University. I knew I would need to write on a topic that I felt was important to me, and important to others. It seemed natural to write about schizophrenia. Again, I was turning one of the worst things in my life into one of the best.

That was five years ago. I have come so far since then.

I have interviewed a dozen people around the state about their struggles with schizophrenia. I have read countless books, some personal, some scholarly, on the nature of schizophrenia. I have written – oh how I have written! At the time of publishing this blog I have completed a methods chapter, three theory chapters, three results chapters and a discussion. I am also sitting on the fourth draft of my Introduction. I hope, in a month or so’s time, to have a complete first draft of my thesis. I have an excellent supervisory team who understand my special concerns, who respect the work I do, and who give honest feedback. I have enjoyed the process greatly.

Where do I stand now? 

Well, there’s always further to go. I would like to find a partner, to marry, maybe have kids. I still have to move out of home (yes, I know – thirty-three years old and still at home!), I have lovely parents.

I am proud to have made contact with dozens of people with mental illnesses of their own. I have been on an Australian Story episode with my learned friend, schizophrenia researcher Professor Cyndi Shannon Weickert from NeuRA. My father and I appeared in a Two of Us article for the SMH and I was recently interviewed for an episode of All in the Mind on Radio National as part of Mental Heath week. I have talked at conferences and seminars. I am hoping to have the opportunity to talk at my old school. I present a community radio show on Eastside Radio, 89.7 fm (have a listen!). I play bass in a band called Crash Through. Once I finish my PhD I would like to work in the field of mental health policy.

Not bad for a man who once contemplated the darkest of thoughts in the midst of psychiatric torment.

The band
(L to R) Members of Crash Through. Alicia Nagle, Richard Schweizer, Tim McAlpin and Phil Morgan at the Metro Theatre in Sydney.

Coda

What would I like you to take away from my story? A couple of things: One, schizophrenia does not have to be a death knell. Many people with schizophrenia can go on to live productive and happy lives. Two, schizophrenia does not automatically make you crazed and violent. Indeed, people with schizophrenia are more likely to be the victims of violence than its author. Three, people with schizophrenia still need love, support and understanding. If you have a friend or family member who appears to be doing it tough, it’s ok to ask, “Are you ok?”

And finally, perhaps the most important thought. Mental illness is normal as I suggested in Part 1. Schizophrenia is normal. We can no longer treat people with schizophrenia as outcasts; as lepers of the mind. Perhaps we may alleviate some of the suffering people with schizophrenia have and will face in trying to live their lives if we view the disease this way. People with schizophrenia must be welcomed back into the fold of society. They need understanding and acceptance.

Just like you.

Just like me.

‘The World According to Richard’ (Part two)

In Part two of Richard Schweizer’s blog, entitled ‘The road to wellness’, he takes us into the Sydney Clinic where he was admitted not long after his schizophrenia diagnosis.. 

I spent about 3 months in the Sydney Clinic; a private mental health facility in Sydney’s Eastern Suburbs. My time there was not that bad. I have good things to say about the staff. I remember one nurse talking to me about my life, my mind, my illness. She made the observation that people suffering schizophrenia, particularly during the on-set of psychosis, need ‘not too little, but not too much’ stimulation. I still find this to be fairly accurate today.

My time at the clinic is, like the early period of my illness, somewhat hazy. This may be because I think I was put on sedatives initially. I have memories of lying in bed, while my parents sat beside me. To this day I thank the fates that my parents were so close by, so supportive. It’s one of the main reasons I’m still around today.

The Sydney Clinic began with me seeing a psychiatrist and getting a diagnosis. I talked at length about what I had been experiencing, what I had done, how I felt. The doctor was particularly interested in my pot smoking; I guess he wanted to ensure that what I had was onset-schizophrenia, and not drug-induced psychosis (typically drug-induced psychosis is very intense for its sufferers, but tends to pass when the sufferer stops taking the drug causing the psychosis). He was very measured, very calm and analytical. I can’t even remember if he pronounced the diagnosis, or if it was my GP who had said that. Either way, I knew I was sick. I knew I had a mental illness.

As I write, another memory of the period occurs to me. Before talking to my mum and seeing my GP, I made several efforts to clear my mind and put myself on an even keel. As I have said, I went to a free counselling service several times. I tried cleaning and organizing my room and I saw an eye specialist for my ocular problems. I also went to see my family homeopath, a wonderfully kind man who I still see.

One of the more interesting tasks I undertook to maintain my wellness was to write “My Eight Steps to Wellness” in my journal. They were:

  1. No pot.
  2. Exercise.
  3. Sleep well.
  4. Relax and meditate.
  5. Spend time with people I love and trust.
  6. Be aware of the beauty of the world.
  7. Eat well.
  8. One day at a time.

I guess these steps may seem obvious, but it was good for me to clarify them. I think they helped me handle the disruption of schizophrenia. I would recommend them to anybody as important steps to leading a good life, mental illness or not. When I read these steps to my psychiatrist, he added “stay on your medication” as number nine. Since that time, I have taken my anti-psychotic medication every single day. I am now 33 years old.

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Richard Schweizer volunteers at Eastside radio where he presents a weekly music show

Then came the drugs

The tale of my medication is interesting. As noted, my GP put me on Risperidone. My psychiatrist at the clinic immediately changed me to Zyprexa. This didn’t work so well, so he upped my dose considerably. I still was not responding well, so we switched to another drug. I can’t remember what it was. It may have been Serenace or Abilify. I was still having trouble maintaining my cognition. I had trouble concentrating on tasks requiring abstract thought. For example, in group therapy session I had to leave because it was too much to take in.

My doctor then pulled out the big gun, Clopine. Clopine has a significant side-effect profile. In one percent of people it can cause a major drop in white blood cell count, so you need to take a blood count test every month. It also makes you very sleepy. Aside from that, I responded well to it. I even remember coming out of the clinic to travel with my parents to Vanuatu for a holiday. While there, I was still experiencing symptoms though – I had that sense of fear and an over-whelming sense that my mind was being engulfed. It felt like my mind was a tiny island of rationality in an encroaching sea of fear. I had brought a guitar with me. I remember writing a song about how I felt, only to destroy it later, as I wished to forget what was happening to me. With the calm of the holiday, I also began imagining that voice again: “Ha ha, you’re going crazy”. When I got back I told my GP of how I felt, of suicidal urges, and she immediately booked me back into the clinic for another stay. I guess it must have been at about that time that my psychiatrist upped my dose of Clopine. I stayed on this dose for half-a-dozen years or so; after some time my psychiatrist and I agreed I could try cutting the dose, which I did successfully. The drug, even at this lower dose, has me sleeping 12 to 13 hours a night which, by the by, has meant I don’t think I will ever be able to hold down a full time job – I am just too sleepy to wake up at seven-thirty or eight.

Sometimes if you don’t laugh, you may cry

When I was first admitted, I, with my parents, had to answer a number of questions of an administrative nature. I recall the lady there asking me “any allergies?” I responded, “only lies”. An example of the quirky way my mind works. This, of course, was a joke, though no-one in the room felt like laughing. I still figure laughing is a valuable thing to have in life. I have since joked with friends and parents that if there is ever another military call-up in Australia I’ll be safe from harm: I have flat feet, bad eyes and a mental condition.

I also remember upon entering my room for the first time, the staff removed any objects that I might use to self-harm with – telephone wires, belts, sharp objects and so forth; I had told my psychiatrist that I was having specific suicidal ideas. Looking back on this time, I understood that all this commotion was important to make sure I did not self harm, though it also felt, to a frightened and confused man, as if there was some kind of degradation ceremony taking place. I never acted on the suicidal impulses (other than one night deliberately over-drinking at a family dinner, but that is another story…). I now know I never will. There is too much beauty in the world to cut short one’s time here.

The clinic was, remarkably, a very calm place. There were many people with problems, but few were happy to talk about their issues. I remember telling one girl I had schizo-affective disorder and she saying “Oh yeah, schizo-affective is a bitch to manage”. I realise now that she was commiserating with me. At the time though I thought she was saying there was no hope for me. I felt it was a judgment about the future of my mental illness.

I also recall a fellow in there dealing with bipolar disorder. He had had the illness for quite a time before he was diagnosed. I remember him as being a very real and strong man. He told me that his life had hung in the balance, but that he had chosen to be a “warrior for the light”; he would not give in to darkness and despair.

Other than that, I did not talk much with other people. When I was re-admitted, they put me in a shared room with another fellow who remained silent as he suffered through whatever it was that burdened him. I read magazines without taking anything in. I listened to a CD of classical guitar a friend had bought for me. I read Patrick White’s The Tree of Man (light reading for a clinic in-patient!). A dear friend brought me a mini-television one day when he visited. The darn thing only picked up the ABC, but perhaps it was best that I only watched the relatively somber line-up of our excellent public broadcaster whilst I waited for my meds to kick in.

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Prof Cyndi Shannon Weickert from NeuRA and Richard Schweizer at TEDx 2014 where Prof Weickert spoke on schizophrenia. The pair are good friends

My parents visited every day. They would always give me a huge hug when they left, even if this was out in the corridor. Close friends visited me, though at that time I had not decided to go public with my illness. Often my parents would bring me home during the day, but this ended upon the request of some of the nursing staff that wanted to keep me under observation.

I guess my final thought for the second part of ‘The World According to Richard’ would be that, as calm and restorative a place as the clinic was, perhaps the best place for a mentally ill person to get better is not in the surrounds of other people going through significant personal problems. Perhaps a farm surrounded by family would be better? But I don’t know for sure, I am no psychiatrist.

Editors note: Part three of the series will be posed in the coming week.

‘The World According to Richard’ 

Richard Schweizer has schizophrenia. In this three part blog series he walks us through his journey from his initial symptoms to how he feels about the future…

I want to suggest to you an idea that may be a little confronting. It’s an idea that may take you a while to get your head around. And the idea is this:

Schizophrenia is normal.

It’s a simple idea, but a powerful one.

Now I know your immediate reaction is one of surprise, perhaps rejection, perhaps anger. How can a person who has schizophrenia, who has experienced its most terrible symptoms say it’s normal? How can I possibly say it is normal to hear voices, normal to suffer paranoia, normal to have bizarre delusions about yourself and your place in the world? How can I possibly say it is normal when so much brain science is discovering the abnormal brain conditions that give rise to mental illness?

I accept these questions. And yes, on one level, on an important level, schizophrenia is abnormal and deserves the care and support and resources that brain abnormalities require in their sufferers. Schizophrenia is quite abnormal.

But on perhaps a more fundamental level; I say that schizophrenia is normal.

When you look at the distribution of mental illness like schizophrenia in the population, when one looks at the history of madness in all cultures, schizophrenia regularly arises. Indeed, 1 in a 100 will suffer it in contemporary society. So, when you look at humanity more broadly, over populations and over time, we find that madness has always been with us, regardless of how it is treated.

Madness accompanies humankind, just like anger does, like fear, love and hatred do. Madness has always been there and, for the unfortunate among us that suffer, it always will be.

So what is the upshot of this idea? What does it mean if you come on my rhetorical journey and accept that schizophrenia is normal?

I believe deeply, that people with schizophrenia need the same support and love that people without mental illness need. I believe that people with schizophrenia should be approached as people suffering an illness, not as lepers of the mind. I believe people with schizophrenia deserve respect, not simply for living with a mental illness, but for being the people they are.

And it is to these ends that I dedicate this three-part blog:

‘The World According to Richard’

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Richard Schweizer hosts a music based radio program at Eastside radio in Sydney

Like most people, I was born at a very early age. My upbringing was stable and secure. I lived in a house of care and concern, with hard working, loving parents and grandparents. When I was in kindergarten I used to wear a Superman cape. When asked who I was, my reply was inevitably “Superman!” When I had to take the cape off for sleep-time my name was Richard again. Perhaps, at this young age, I was already looking for something greater in my life.

My record as a student was strong. I had received scholarships for school at Sydney Grammar and for an undergraduate in arts/law at Sydney University. I had plenty of friends. True, I was prone to bouts of depression, but I always got the job done. I enjoyed writing and playing music with a band; I read voraciously about Australian politics; I participated in the cultural life of the university; and I had girlfriends.

My onset of schizophrenia occurred at a time of a number of stresses in my life. I had law exams and was in the process of breaking up with my girlfriend of two years. I had developed a bad eye condition that required me to become accustomed to hard contact lenses (they are still a pain in the neck), I was smoking a bit – though not too much – pot, and I was about to start a Summer placement with the NSW Attorney-General’s office.

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Richard Schweizer on stage with his band

I don’t remember much of this period, so bear with me if my account is fragmented.The first symptom I recall happened while I was sitting in class during my law degree. A blanket seemed to come down over my senses. I felt detached; distant from the world. If you are a movie lover, think of the scene in Trainspotting where Ewan McGregor overdoses and looks at the world down a lengthy corridor.

I also experienced bizarre thoughts. I can recall, at one time, thinking my friend was the devil. I knew then that that was a bizarre thought, but it popped into my head regardless. Much later, my GP said that symptoms of schizophrenia often concern themselves with things we love or hate. Some months later whilst in the Sydney Clinic and reading a magazine article about Bob Dylan (whom I idolize) a thought popped into my head… kill Bob Dylan. This disturbed me greatly.

I also remember having visual and conceptual ‘flashes’. This is hard to describe. Say, for example, on television I would see a cartoon character get banged on the head and have stars rotate around their head. That image would ‘flash’ out for me, almost as if there was a coincidence, or as if something more, going on. I refer now to another movie, this time ‘A Beautiful Mind’. Think of the scenes where Russell Crowe stares at newspapers and hidden messages flashed out at him. That’s what it felt like.

There was a darker side to this too. I would see/think flashes of violence when I saw certain people. I remember with distress a time when I saw my then girlfriend mutilated by violence. I remember, too, an occasion when I was being introduced to staff in the Attorney General’s office and I saw a reflection through the window on an accompanying building. For some strange reason I kept thinking the reflection was a gun, pointing at me. I knew, rationally, that it was a reflection, but I kept thinking it was a gun.

And then there was the voice. At least, I think it was a voice. It may have just been the artifact of an audible imagination. Reading later of other people’s experiences, I am not sure if my voice was as clear and strident as what many experience. Nevertheless, I did imagine some kind of voice, and it would tease me mercilessly about my greatest fears. Perhaps my greatest fear has always been losing my mind – my most valuable quality. The voice would say “ha ha, you’re losing your mind”. Just imagine it – some sort of phenomena arising from deep out of your mind, knowing all your fears and weaknesses.

With experiences like these perhaps it’s normal (there’s that word again) that I became emotionally unstable. I became paranoid, depressed and anxious. The strongest emotion I felt was fear – fear that I would hurt myself or someone else.

At some point in this downwards trajectory I went to my parents with a plea for help. I can’t remember how it started but I had been taking advantage of a free counselling service, and my counsellor had promised me I did not have and would not have schizophrenia. I guess I was able to cover things up pretty well, as they didn’t pick it up.

I arrived an hour late for my first day at the Attorney General’s office, saw the gun, and was feeling deeply unstable. I visited that same counselling service for an emergency walk-in session, but my normal counsellor wasn’t there. Instead I met with a lady who, after hearing me out, gave me two excellent pieces of advice: “keep yourself grounded, literally on the ground, and tell your mum”.

Around about that same time I had clambered up on my house’s backyard pergola to climb into my brother’s room as I had forgotten my key. My mum was immediately concerned by what I told her about how I was feeling and also by my risky behavior climbing onto the pergola. She booked an appointment for me to see my GP the next day. The GP listened to my story and told me to take Risperidone, and to come back and see her the next day. She also said not to look up what the drug was given for.

Of course, that night my mum looked up Risperidone on the Internet, and it said “for the treatment of schizophrenia”. Mum showed me.

My first reaction was to go numb. I didn’t know where I was. I went up to my room and immediately searched the Internet for non-pharmaceutical treatments for schizophrenia. I had a strong belief before then that drugs altering the brain’s chemistry should be avoided at all costs. (I now realise they are all but inevitable for certain serious conditions).

The significance of what I was realising washed over me – a rising flood.

I came back downstairs. I don’t remember a great deal after that. Perhaps my mind has blanked out the terrible experience.

I remember two things; one, crying tears, so many tears with my parents. I wailed like a baby. The other thing was asking my parents “Why did Omi and Opi [my grandparents] survive the Holocaust, only for this to happen?” I do not know why I asked that question. I guess the Holocaust was the deepest historical event affecting my family. Perhaps I thought this was an injustice that they should be spared, to see my life shattered. I still don’t know why I said it.

It was the worst night of my life.

Later my parents told me, that my brother had heard me crying that night and asked “What’s wrong with Richard?” I felt terrible that I should burden him too. “Richard has schizophrenia” they told him.

That night I saw hideous black ghosts flying above my bed. I left my bedroom and crawled into bed with my parents; a deep reversion to the childlike.

The next day I entered the Clinic.

Editors note: Part two of the series will be posed in the coming week.

The Social Brain

Dr Muireann Irish uncovers the part of the brain that underpins social cognitive deficits in semantic dementia, further unraveling mysteries behind the disease.

It may sound like the subject matter of a science fiction movie, but mind-reading is a process in which we regularly engage. On a daily basis, whenever we interact in social scenarios, we go beyond our own perspective to infer the thoughts, beliefs, and feelings of other people. This innate skill to appreciate perspectives distinct from our own allows us to function effectively within the social world. For example, we can instinctively understand how a colleague may feel when their latest publication is rejected, or we can intuitively place ourselves in a friend’s shoes when they experience a joyous event like the birth of a first child.

Theory of Mind

My latest study sheds light on the brain regions that need to be functional in order to support this ability to empathise with others. The study, published in the journal Brain, reveals that structures in the right hemisphere of the brain are essential to enable us to read the minds of others and to consider their beliefs and feelings. ‘theory of mind’ is the term used to refer to our uniquely human ability to make these inferences and is crucial for our successful functioning in the social world.

By understanding that other people think and feel in ways that are distinct from our own perspective, we can appreciate differences between individuals. This capacity to infer the mental state of others confers immense flexibility in our approach to various social scenarios. Without this ability, we would appear rigid, egocentric, and unfeeling towards others.

While appreciating the mental state of others may come relatively easy to us, the capacity for theory of mind relies upon a complex network of structures in the brain. Research on healthy individuals has revealed that when we successfully consider another person’s psychological perspective, regions in the frontal, temporal and parietal lobes of the brain activate. Such widespread brain activation reveals how complex this function truly is.

It follows that damage to any one of these brain regions will block the capacity to take another person’s perspective. Theory of mind abilities are disrupted across a number of clinical conditions such as traumatic brain injury, autism, and dementia.

Semantic dementia

In frontotemporal dementia, it is commonly reported that patients are unable to understand how their actions affect other people, or to consider that the reactions of others may differ from their own. However, up until recently, we knew relatively little regarding the capacity for theory of mind in the syndrome of semantic dementia. My recently published research reveals, for the first time, that individuals with semantic dementia experience severe difficulties in considering the mental states of others, and that such deficits are attributable to atrophy of structures in the right hemisphere of the brain.

Semantic dementia is a subtype of frontotemporal dementia, characterised by the progressive loss of general knowledge about the world. It is conceptualised as a language disorder whereby patients experience a profound loss of the meaning of words and concepts. The patient is unable to recall the names of objects, places, people, and experiences difficulties in correctly labeling popular musical tunes, or basic emotional expressions. While the predominant complaint of the patient is that of language disruption, carers of patients with semantic dementia report alterations in social functioning and interpersonal behaviour.

The Protocol

Images taken from Lough et al. (2006) Neuropsychologia,

Images taken from Lough et al. (2006) Neuropsychologia,

I used a new task to explore if patients with semantic dementia could infer the thoughts, beliefs, and feelings of the main characters in humorous cartoon scenarios. Patients were asked to describe why a selection of cartoon scenes were funny and their descriptions were analysed for language that reflected consideration of different mental states, for example “he thinks”, or “she feels”. In the cartoon scene to the left, a correct answer would be something like, “The gentleman thinks he is being held up. The lady is not aware that she is frightening the man.”

A patient with semantic dementia tended to respond as follows, “The woman is hitting the man in the back. He is putting his hands in the air”. These responses indicated that the ability to spontaneously consider the mental state of others was disrupted in semantic dementia. Importantly, I demonstrated that the failure to successfully appreciate the viewpoints of others was not a result of the language difficulties that are typically found in semantic dementia.

Using neuroimaging analysis of structural MRIs, I found that shrinkage of the right temporal lobe of the brain underpinned the theory of mind deficits in semantic dementia. This finding is surprising, as these patients are typified by damage to the left side of the brain. As the disease progresses however, pathology spreads from the left to the right hand side of the brain. The semantic dementia patient displays impairments across multiple domains, beginning with language disruption and gradually progressing to include social dysfunction.

Why is this important?

The findings of this study are unique as they reveal, for the first time, that degeneration of right temporal regions in the brain is associated with social dysfunction in semantic dementia. The right temporal lobes have been consistently implicated in studies of social functioning in healthy individuals.

Our study illuminates the complexity of social cognition and how we achieve sophisticated acts of social inference in our everyday lives. By incorporating brain mapping techniques with new experimental tasks, we can continue to unravel the mystery of mind-reading and build a coherent picture of how humans navigate within the social world.

A blood test for dementia

Lauren Bartley is part of a team developing a blood test to detect dementia.

A blood test can reveal many things about your physical health, such as your blood glucose levels or an iron deficiency. But what if a simple blood test could reveal what’s happening inside your brain?

Blood 1 As the Biomarker Study Coordinator, I see each participant involved in frontotemporal dementia and Alzheimer’s disease research at NeuRA and take a sample of their blood for analysis.

At the moment, if your doctor suspects you have dementia, you are likely to undergo neuroimaging to look for changes to your brain structure and shape, as well as cognitive and behavioural assessments looking for changes in the way you think, act and process information. When people only have mild changes, it can be difficult to accurately predict the underlying disease process, which can be frustrating for the affected person and their families.

Developing a blood test

At NeuRA, we are currently investigating the concept of a blood test for dementia, with the hope that one day clinicians will be able to easily and quickly discriminate between frontotemporal dementia and Alzheimer’s disease, the two most common forms of younger onset dementia.

Our hope is that this test could further reveal if any medications or therapies might be effective in reducing symptoms and halting the progression of illness. This is important because a medicine that benefits someone with Alzheimer’s disease is unlikely to be effective for someone suffering from frontotemporal dementia.

Our blood test will screen for particular proteins in the blood associated with dementia: Beta Amyloid, Tau, TDP-43 and FUS. We know these proteins are responsible for causing the brain changes in both Alzheimer’s disease and frontotemporal dementia by having performed previous pathological studies on the brain tissue that has been generously donated by former research participants both in Australia and around the world.

These proteins are in everyone’s brains as they age and they carry out important functions in supporting the brain cells. But in some people, these proteins start aggregating in a harmful way that can kill the brain cells and cause the symptoms of dementia.

Our prediction is that a person who has pathological levels of protein massing in their brain will also have increased concentrations in their blood. It’s important for our study to screen the blood of a significant number of older healthy males and females to act as a comparison and help us understand what the respective protein concentrations are in people with no presentation of dementia symptoms.

The people attending the Frontier research clinic at NeuRA to volunteer for frontotemporal dementia research are generally aged between 50 and 75 when their symptoms begin, so we have a wide range of ages to match for. Often the supporting partners of our participants act as controls in the study, and are happy to be offered the opportunity to contribute to our research.

An update on our progress

Our study is a little more than half way through and so far I have collected blood samples from over 500 dementia-affected participants and controls. It’s important to obtain bloods from people with a variety of symptoms so that we can best correlate these symptoms to a protein profile.

I am also collecting further samples from participants at different in their illness to see if there are changes to this profile as the condition progresses.

The only way to quantify our study and determine the accuracy of our results will be to confirm the pathological protein at the end of the participant’s life through our brain donor program (see my previous blog post). In this way, we can ensure our results are meaningful.

The blood samples that I have collected are now in the very early stages of being analysed by the biomarker team, and over the next 18 months we will learn more about the feasibility of the blood test for dementia in everyday community healthcare. We want to be very certain of the accuracy of the test before its release.

Concerned about your memory?

In the meantime, anyone who has concerns about their memory, or who has had changes in their speech or ability to understand language should discuss them with their GP. Sometimes it’s easier for a loved one to recognise these symptoms, along with other clues like changes in personality or behaviour that might be more than just a ‘mid-life crisis’ or the general process of ageing.

‘Turning down’ voices and ‘turning up’ thinking in schizophrenia

We are calling for volunteers to take part in a new clinical trial that may help people with schizophrenia.

Many people with schizophrenia have residual symptoms in spite of treatment with antipsychotic medication. Auditory hallucinations (‘hearing voices’) are a symptom that is treatment-resistant in 25 to 30% of patients, and cause distress. Continue reading

Busy bee visits NeuRA

Australia’s brainiest teen shows off her trophy

NeuRA was lucky enough to host one of Australia’s brainiest teenagers, Uma Jha, when she visited last week for a work experience placement.

At just 14, the Perth native beat 3000 hopefuls to become the champion of the 2009 Australian ‘Brain Bee’; a neuroscience competition. As the sole representative of Australia, Uma continued to the international Brain Bee championships in San Diego and came head-to-head with students and high-school graduates as old as 18 from seven different countries.

“It was pretty incredible to be representing Australia. It was just good to be there,” she says. Continue reading