‘The World According to Richard’ (Part three)

In the final installation of Richard Schweizer’s blog series, he describes his vision of 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

3Richard family copy

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 later 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 going 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.

A ride for my Dad

NeuRA volunteer Lizzi Mallett explains why she decided to participate in the Memory Cycle to Cambodia in March 2015 and why fundraising for NeuRA’s research is so important to her.

Six years ago my family and I said goodbye to my dad, John Mallett, as he slipped away from our world after suffering from the rapidly progressing motor neurone disease (MND) and frontotemporal dementia for five short years. His battle with these awful diseases started when I was 15 and he was only 58. He lived life each day as if it was his last. His thirst for life took us on a wild journey and he loved every second of it. It is because of my dad that I have decided to dedicate my life to supporting and helping NeuRA. At the beginning of the year I moved to Sydney from Perth and began volunteering with NeuRA’s Foundation team.

When the opportunity for the Memory Cycle came up, I thought that there was no way someone like me, who doesn’t cycle regularly, could do a challenge like this. We would be cycling from Vietnam to Cambodia, and I would have to fundraise a minimum of $3,500 while living on the other side of the country from my entire support network. However, my mother reminded me of my dad’s determination in life and how he purchased a bike when he was ill but could not ride it. He taught me that if I put my mind to something, that I could achieve anything! And by *anything*, I mean the time he sneakily planned a trip from Perth to Hampton Island all on his own when he had already lost the ability to speak and swallow – however, that’s a story for another time. With this determination in mind, I thought, ‘yes, I can do this, I’ll cycle for my dad’. After all, Dad was the one who taught me how to ride a bike and we used to do everything together. This is something he would like to have done and if he was still here with us today, I’m sure he would have signed up for the challenge too. So I signed up and started my fundraising page. Almost instantly, thanks to social media, I raised $1,000 in under a week. Whoa!! Who knew I could do that. I am extremely close to reaching my minimum fundraising goal. See, my dad was right! The mind works wonders; you can achieve anything when you put your mind to it. The Memory Cycle is the best way to fundraise for NeuRA as I get to travel, meet new people, do really cool things with the Inspired Adventurers, and work out, all at the same time.

I had an unbelievably close bond with my dad and it breaks my heart seeing people suffering from neurological diseases just like he did. If you have a desire to help NeuRA and make a difference to so many families suffering from the illnesses that NeuRA researches, then please donate or sign up for Memory Cycle and ride in Cambodia with me. We will have an absolute ball! If you would like to contribute and cannot join the cycle team (even though you really want to!) then you are more than welcome to give a little donation on my fundraising page, and follow my journey on my blog.

I hope to see your pretty little faces on NeuRA’s Memory Cycle team; otherwise, we appreciate every little cent that comes our way. NeuRA is making a huge difference to so many people’s lives, including my own family. Your donation will help NeuRA conquer neurological disease one step at a time.

Dad and I

Dad and I

 

Providing for the future

Why is it that Australians prepare fiscally for retirement, but do not routinely donate to research into diseases of brain and mind, which will affect many Australians during their retirement?

DSC_3155Many people begin to take an active interest in preparations for retirement at some point during their adult life. Obligatory employer contributions make it possible to begin superannuation savings early in working life, and additional voluntary contributions are incentivised by tax benefits. Many people feel a sense of pride in this financially prudent approach to the future, and are able, at the end of a productive working life, to approach retirement with a safety net or a cushion; in short, some degree of financial security that will provide necessities as we age.

Ageing, however, cannot be dissociated from rising health costs and an unknown degree of necessity to rely on others to cope. There are more complex factors in how we allocate our financial resources when approaching older age that need to be taken into consideration.

There is a conundrum here: people make provision for an active, healthy and fulfilling retirement; however, they often do not consider donating to research and development in areas of health that are relevant to ageing populations. Many donors to biomedical research may be drawn to illnesses more prevalent in younger people, such as childhood cancer or breast cancer. Nevertheless, there remains a brutal reality for older Australians, who face the prevalence of dementia as a major barrier to health and quality of life. More than 320,000 Australians are currently diagnosed with this illness, and this figure is set to rise to 900,000 by 2050. There is currently no cure for dementia or for many other types of neurodegenerative disorders that also affect an ageing population, such as Parkinson’s disease and multiple systems atrophy.

So, when we are in a position in life to contribute to research, why don’t we choose to prioritise donations to research into neurodegenerative conditions, which incur significant costs and will affect an increasingly large proportion of the population?

Perhaps this asymmetry in choice is brought about by fear. Neuroscience research has enabled an increased understanding among the public of the effect of genes on heritable disorders. On the flipside, though, being able to predict one’s own vulnerability to diseases of the brain and mind may be only a grim reminder of a difficult future. Perhaps it is more comfortable for people to suppress this pessimistic prospect by contributing to research programs in which the afflicted individuals are youthful, the organ replaceable or the condition reversible. This allows the donors, who may often be facing middle age or older, to distance themselves from the fear that comes with increased awareness of their own vulnerability and to feel that they are making an effective difference through supporting translational research.

It is crucial that we bridge this apparent divide. Greater knowledge of the causes of neurodegenerative illnesses, and a more productive search for cures, can have positive feedback. In short, successful research often begets greater funding.

As demands on carers and aged care institutions become more apparent with the sheer numbers of Australians increasingly burdened with neurological diseases, the public will demand a collective reassessment of priorities in research funding from government and philanthropic sectors. The challenge will be to grow the pool of available funds, without diverting them from other areas of priority. Perhaps this challenge is something to consider during financial planning for retirement.


 

The sensitive topic of brain donation

Brain donor program coordinator Lauren Bartley says while it can be difficult to talk to people about brain donation, it’s for a very important cause.

When I first began recruiting to the brain donor program at NeuRA and the Sydney Brain Bank, I found it difficult to broach such a sensitive topic with the participant and their family members. After all, how do you ask someone you have met just briefly if you can have access to their brain tissue after they pass away?

This is a discussion I’ve had to have with all our research participants – and one that I no longer shy away from. I know that every brain is valuable and have seen firsthand that every donation brings us closer to understanding more about dementia.

Sometimes there can be confusion over whether the tissue we collect will be transplanted into another human (which it’s not); other times, I’ve found that participants think their brains won’t be useful because of their cognitive impairments.

Lauren Bartley is a brain donor program coordinator at NeuRA.

It’s actually brain tissue from people with these very impairments that is helping scientists at NeuRA understand why proteins that cause dementia begin to deposit in some people’s brains and not others, and how this occurs.

In some cases, it’s difficult for a neurologist to determine if the patient is suffering from early onset Alzheimer’s disease (AD) or frontotemporal dementia (FTD). While clinically these dementia syndromes can appear similar, the brain tissue pathology is quite different. Looking at brain tissue has been essential for understanding the differences in pathology between AD and FTD.

Thanks to people who have donated their brain tissue in the past, we now know that the brain tissue of people with Alzheimer’s disease is marked with plaques formed by the beta-amyloid protein and tangled accumulations of the tau protein.

The tau protein also accumulates in frontotemporal dementia, depositing not in tangles but as inclusions inside brain cells called Pick bodies (FTD is also known as Pick’s disease). Some people with FTD also have pathological inclusions of other proteins such as TDP-43 or FUS.

“This is at the heart of what’s driving our research: we need to come up with new ways of accurately diagnosing dementia while a person is still living.”

Because of the heterogeneity of pathology in FTD, it’s impossible to predict which protein is responsible for the illness with the clinical tools we currently have at our disposal.

I can recall many times when participants were only found to have evidence of motor neurone disease (in addition to their dementia) during the autopsy process. There have been instances where we found participants who had been diagnosed with FTD actually had Alzheimer’s disease pathology and vice versa.

If we had known the true cause of their illness during life, they may have been able to access therapies or medicine to reduce the impact of their symptoms. This will become increasingly important as new therapies for dementia syndromes become available.

This is at the heart of what’s driving our research: we need to come up with new ways of accurately diagnosing dementia while a person is still living.

Helping us improve diagnosis during life is one of the reasons why brain donation is invaluable, and it’s why I’d like to thank each and every brain donor who I’ve had the privilege of working with at NeuRA.

 

More information about brain donation

While I am not able to accept brain donations from the general public, we do accept brain donations for AD and FTD research from people who have participated in research at our clinic. There are also circumstances where people who we have not seen in our clinic but have had a diagnosis from a neurologist/geriatrician and previous brain imaging (preferably MRI) can also be enrolled.

After the Sydney Brain Bank at NeuRA has finalised the report identifying the protein that caused the dementia, I send this report to the families and clinicians. The tissue donation is then used in ethically approved projects performed by medical researchers across Australia and the world.

If you are interested in finding out more about brain donation for medical research into AD and FTD, please contact me at frontierbiomarkers@neura.edu.au

Books For Brains

The NeuRA Foundation is looking to raise funds to support brain research via ‘Books for Brains’, which kicks off in October.

Sometimes an idea just ‘feels right’, and so it was when we conceived the idea for NeuRA’s Books for Brains event.

From the outset, it was clear to us that people who enjoy reading intuitively know that reading is good for their brains. And so the idea that people in book clubs would take a lively interest in the frontiers of knowledge about the brain, and how it works, was not a stretch.

Books for Brains is a NeuRA initiative calling on book clubs around Australia to put their heads together in the month of October and read a book with a focus on the brain and mind.

NeuRA’s Judy Dixon

The concept has received praise from a number of bestselling authors.

Norman Doidge, author of this year’s featured book, The Brain that Changes Itself, says:

“At this moment, while Australian neuroscience researchers are ‘punching well above their weight’ and making huge breakthroughs, so many Australians display an open-minded wonder about the brain. That’s why NeuRA’s initiative, Books for Brains, is such a wonderful idea. What could be more enlivening than digesting the meaning of new findings, which can so illuminate our lives, by getting together and discussing them within your book club – with the helpful, up-to-date comments on offer through Books for Brains from leading Australian researchers at NeuRA.

Ruby Wax, comedian and author of 2013’s bestseller, Sane New World, a story about what is it like to live with depression, says:

“The problem is in us; in our brains. The conflict is within ourselves. It’s those voices battering us and we project it out on the world. Inside our heads there is always war. I totally support NeuRA’s Books for Brains – unless we learn what’s in our heads, we will never resolve our own issues and the world’s.”

Peter FitzSimons, much-loved Australian author and social commentator, says:

 “Books for Brains is a wonderful initiative to raise awareness about an issue growing in importance with every passing year. Once, while playing rugby in France, I was so badly eye-gouged I actually saw my own brain, and was satisfied it was big. But as time has gone on, I have become aware that none of us can take brain health for granted, and I fully support all efforts to make Australians aware of that very fact.”

Through NeuRA’s Books for Brains, we hope to encourage your book club to think about the importance of brain research. We want to encourage you to discuss one of our suggested books and hope that you find it stimulating, uplifting, funny or even moving.

To register and access this year’s book list, visit us here.

Brain Injury Awareness Week

This week is Brain Injury Awareness Week. More than 500,000 Australians have an acquired brain injury, so what can we do reduce the numbers? In this blog post, NeuRA’s Professor Lynne Bilston explains that prevention is key in cutting the numbers of those affected each year.

Lynne Bilston

Traumatic brain injury occurs when an impact to the head causes damage to the brain tissue. It’s very common – about 2500 serious brain injuries occur each year in Australia, and many more that are less serious. Even apparently minor injuries often have ongoing effects on people’s lives, and repeated minor trauma can predispose people to dementia later in life. Brain injury has enormous social and financial costs, profoundly affecting the lives of not only those with the brain injury but also their families. The lifetime cost of looking after people who acquire a brain injury in Australia in a typical year is estimated to be approximately $8.6 billion[i], much of that cost falls on individuals and families, not just on our health system.

So what can we do?

Improvements in emergency care after trauma have helped more people survive, but there are no drug treatments that make significant differences in function once a traumatic brain injury happens. Rehabilitation is a long and arduous road, with often only small improvements resulting.

Prevention of traumatic brain injury is therefore paramount.

To prevent brain injuries, we must understand how they happen and from there,  design effective prevention strategies, whether these are engineering design solutions such as improvements to car safety features and restraints, public education programs, or clearer regulations. These methods all help.

Research done together with my colleague Dr Julie Brown into injuries in car crashes – the leading cause of brain injury, details how these injuries are sustained in crashes, and what  factors contribute to brain injury. In children, we have shown that the most serious injuries can be prevented entirely if children are correctly strapped into the right type of child restraint for their size. This apparently simple approach works because the right restraint used properly stops the child’s head from hitting hard objects in a crash. If there’s no head impact, then the head can come to a stop relatively slowly. This minimises the acceleration forces on the head and prevents the brain from ‘sloshing around’ inside the skull, which in turn, dramatically reduces the risk of serious head injury.

Our research has led to new national child restraint laws, which require children to use the right type of car seat for their age. But our research shows that the laws alone are not enough. We must also help parents use the restraints correctly, otherwise they won’t work properly.

We have shown that better restraint labels make it easier for parents to choose the right restraint for their child’s size. Getting restraints checked by a professional can also reduce mistakes in how they are used. We’ve shown that education programs in preschools can help kids understand how to use restraints correctly.

The fact is, preventing brain injury is not only possible but vital, and needs the ongoing cooperation of neuroscientists, engineers, public health experts, teachers, and governments.

Welcome to the new Margarete Ainsworth Building

After many months of construction, not to mention anticipation, we have officially opened the new Margarete Ainsworth Building at NeuRA (Neuroscience Research Australia).

Jillian Skinner MP (left) and Tanya Plibersek MP (right) congratulate philanthropist Margarete Ainsworth (centre) on the opening of the Margarete Ainsworth Building at NeuRA

We were lucky enough to host Federal Minister for Health and Minister for Medical Research, Tanya Plibersek MP and NSW State Minister for Health and Minister for Medical Research, Jillian Skinner MP, as well as philanthropist Margarete Ainsworth.

As NeuRA chairman Paul Brassil said in his speech, Margarete Ainsworth has been exceptionally generous to NeuRA and “we thank her most sincerely for her trust and confidence in NeuRA’s research capacity”.

The official opening of the Margarete Ainsworth Building at NeuRA

Lucille Bloch, whose husband Keith had frontotemporal dementia and was a research participant at NeuRA, reminded us in her speech what this new building is all about: the power of research to find answers to devastating diseases of the brain. I’ve pasted a copy of Lucille’s speech below for those who couldn’t make it to our opening.

Here’s to a new era of discoveries at NeuRA.

Lucille Bloch, a carer and research participant at NeuRA, participates in a demonstration of using illusion to relieve pain.

Lucille Bloch’s speech

My husband Keith was always an easy person. We had a very good relationship; we shared everything, we respected each other.

In the year 2000, we decided to pack up our life in Israel and move to Australia to be with our three sons. It was around this time that I noticed changes in Keith’s behaviour.

What stood out for me was his inability to pack up his beloved hobby workshop before emigration. Eventually I had to do it myself. I’d never held a spanner in my life, and here I was dismantling everything, with Keith just watching. This was totally out of character for him.

I said to myself, why is Keith so different? And as I said ‘different’, I stopped. I felt very concerned, because I remembered what my father, a GP, had said about my mother when he suspected she had Alzheimer’s disease; that her behaviour was different somehow to what it had always been.

Shortly afterwards, I spoke to our GP, but he brushed aside my concerns. The next three years were heartbreaking and very difficult as I watched Keith behave in ways that were so out of character for the man I knew. Finally, a neurologist sent him for tests and gave us a diagnosis: Keith had frontotemporal dementia.

There is this over-riding grief when the person you love has dementia. You can only stand by watching as the person you love loses skills and abilities, one by one.

When we first arrived in Australia, Keith still loved to tinker in his workshop, but it became evident quite quickly that it was becoming dangerous. He had lost physical coordination and the ability to forward plan, so there was no more sawing, no more using his electric tools.

I had to just follow Keith’s deterioration, trying to accommodate it. Initially I would lay out his clothes for him in the morning. When he could no longer easily manage, I thought of ways of folding and tying his clothes to help him dress himself for just that little bit longer.

Keith’s deterioration was rapid. He had many falls. I managed most times to pick him up, but about a year after diagnosis, he needed a wheelchair. I was determined to care for Keith at home. It was difficult, but somehow if you want to, you do it.

He attended day centres, I took him to the Art Gallery, out for coffee and had our children and grandchildren share meals with us. After dinner I changed and settled Keith using a hoist to lift and move him.

He never lost his memory or his ability to feel and understand emotions. At the day centre, Keith would write cards to me. They were mostly illegible, but the staff asked him what he had written and told me.

I have one of the cards here with me today, and it says: “Dear Lucille, thank you for being the Mother of my children. Love, Your Husband”.

As you can see, he may have lost many things, but he was still the same loving husband.

During this time, I attended a presentation by Professor John Hodges from Neuroscience Research Australia about the need for brain donation and the great value it has for research. The idea grabbed me.

I went home that night and discussed it with Keith, suggesting we could both donate our brains. Keith agreed immediately. He said, ‘We’ve got four children, your mother had it, now I’ve got it. Let’s do it and let’s help other people.’ We discussed it with our children, they agreed, and thus our bond with NeuRA began.

I brought Keith regularly to NeuRA for cognitive tests and MRI scans. At all times, Keith was treated with dignity and respect. I too have been attending this amazing research institute for regular tests.

When I felt that he was going, I gathered all my four children. Even two of the grandchildren were there, aged just nine and six. The grandchildren always knew that gramps had dementia; we didn’t want to hide anything.

That last night, we put him to bed and I sat beside him and said, let’s talk about our life, and you squeeze my hand if you remember. So we’d talk about where we had lived, our children, and he kept squeezing my hand.

Keith passed away at home, with me at his bedside holding his hand. We called the Sydney Brain Bank and, with great dignity and sensitivity, they took my Keith and arranged for his brain donation without any disruption to the funeral plans.

Afterwards, Professor Hodges and his team told me that Keith had suffered from both frontotemporal dementia and also, unexpectedly, from Alzheimer’s disease. It is rare for these two diseases to occur together, and they said they would learn a tremendous amount from studying his case.

My dream was to have Keith’s dementia reversed. Realistically, however, both Keith and I would be well rewarded if participation in research here at NeuRA, together with our brain donations, advances knowledge about this horrible disease.

My vision for the future is a world where there is a cure for dementia in all its forms or at least medication that will arrest it.

I want those people who will unfortunately follow my husband Keith down the same path of dementia to have hope.

Thank you.

Could immunological mechanisms trigger neurodegeneration in frontotemporal dementia?

Dr James Burrell researches frontotemporal dementia. One of the symptoms of this type of dementia is forgetting language and words, which can be tested by asking a volunteer to name toy animals.

Frontotemporal dementia (FTD)  is the second most common degenerative disease causing dementia in younger adults, with onset typically occurring in the 50s or 60s. In FTD, damage to brain cells begins in the frontal and/or temporal lobes of the brain, which often results in personality and behavioural changes or losing the ability to speak or understand language.

When conveying a new diagnosis of frontotemporal dementia the clinician almost invariably encounters the following questions “Why has this happened?” “Is there any treatment?” and “Will our children get it?”.

Recent discoveries of genetic causes in familial FTD have given us a much firmer handle on the last question, and have undoubtedly shed light on the cellular processes leading to the death of brain cells in people with familial FTD. Nonetheless, we still know little about causation in non-familial FTD, which accounts for around 90% of cases. Without a clear understanding of these processes it is hard to visualise the development of an effective treatment for this devastating disease.

One potential avenue of exploration is the role of inflammation and the immune system.(2) Recently, Miller et al (3) reported the prevalence of autoimmune disease in two FTD subtypes in which the underlying pathology is quite predictable. The authors reviewed cases files seeking evidence of autoimmune diseases in these two FTD subtypes. A history of non-thyroid autoimmune disease was roughly 3-4 times more common in the FTD disease groups compared to controls or patients with Alzheimer’s disease. A second aspect of the study involved the measurement of an inflammatory marker in the blood, which was found to be elevated in both groups compared to controls, reinforcing the apparent association of neurodegeneration and immune disease. A wide variety of non-thyroid autoimmune diseases contributed to the elevated prevalence in the two groups. Why were only non-thyroid autoimmune diseases more common in the FTD subtypes? The answer may be found in examining so-called “clusters” of autoimmune disease, which may partly represent the expression of certain genetic factors.(4)

The study offers a tantalising clue but much remains to be understood. Is this apparent increase in autoimmune disease only true for one of the pathological processes that underlie FTD? If so, could measuring inflammatory blood markers help identify individuals with that pathology in other FTD subtypes, where the pathology is more varied? What is main determinant in non-familial disease: autoimmunity or systemic inflammation more generally? What is the relationship between FTD pathology and autoimmunity: which is the chicken and which the egg? Could immune modulation offer a route to disease modification? We hope that this important paper opens the way to a more complete understanding of the processes underlying neurodegeneration in FTD and the development of new therapies, which are needed desperately to halt the progression of this dreadful disease.

“Sundowner”…play explores the relationships of memory and of family.

I attended the opening of “Sundowner” at Parramatta Riverside Theatre last night. Directed by Kate Denborough and starring Helen Morse, its the story of a writer in her late 50s who has young onset dementia. A strong and compelling performance with moments of raw emotion and of tender poignance, the play explores the relationships of memory and of family. What was unexpected for me, and particularly impressive, was the use of modern dance and its choreography brought by KAGE. It brought a whole new dimension to the exploration of issues of memory and dementia.
Commencing a national tour with performances in many towns in all states (details at http://www.kage.com.au/project/sundowner/book-tickets1 ) I highly recommend this.